tag:blogger.com,1999:blog-63480847124408636412024-03-12T23:11:32.964-07:00Riding the Lyme Tsunami, surviving Chronic & Congenital Lyme DiseaseOur family's journey through surviving Chronic and Congenital Lyme's Disease. Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.comBlogger34125tag:blogger.com,1999:blog-6348084712440863641.post-75945653813009115392013-05-01T10:30:00.000-07:002013-05-01T10:30:01.267-07:00Bart Treatment Update for Tots and IMe:<br />
After 2 months of treating myself and my 2 & 4yr old for Bartonella things seem to have stabilized. I am still not up to my full dose - also found out I have the Methylation gene mutations (haven't addressed this yet) - but the girls are. <br />
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Initially I had horrendous bouts of depression and anxiety but those seem to have calmed down since I backed way off my meds and am ramping up super, duper slow. My joint and bone pain, mostly from my hips to my feet, has really increased; I often walk like I have been on a horse all day and feel like I have restless leg syndrome when I lay down to sleep. Sitting makes me really stiff and I find that I do much better if I keep moving around but at a slow(er) pace and intermittently rest; which is sometimes impossible when you have small kids. My migraines are back but less intense - I think the abx combo on Clarithromycin and Ceftin was helping alleviate them...also the pain meds but I am no longer on those. I had my best week in a long time, my best day ever since treatment started 10 months ago but then I crashed again. The fatigue days on Rifampin (not sure if it is from the Bart flaring or side effect of the medication) are absolute hell. I literally can't keep my eyes open and have to get someone to come and take my kids. The better days my cognitive issues are less and I can drive, the bad days I am a lump of uselessness and misery. Still really having a hard time eating and drinking.<br />
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The Rifampin has stirred up a lot of Bart skin issues. I have more cat scratch/nicks on my throat and back, rashing, ring worm looking patches, scaly thick skin on my ankles, psoriasis like patches on arms and hands. I have always had dry eczema'ey skin and it is really bad now. I am also getting little salt crystal granules (best way I can describe them) coming out of my scalp.<br />
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Rifampin has also caused frequency in urination and bladder pressure for all of us. Makes me feel like I am pregnant again!<br />
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After a straight road downhill - switching to treat the Bart has put me back where I was before treatment and it is much more bearable to be alive now. I have noticed that we all feel better when the weather is not cold and damp. <br />
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The girls and I are also now seeing a Lyme friendly Alternative Medicine doc, along with our LLMD and their Pediatrician, who is monitoring blood work, body/organ functions, and other issues. Our LLMD is strictly antibiotics so she is helping us with supplement additions to keep our body systems stable.<br />
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Girls/2yr old:<br />
A has had a decrease in body pains/headaches and is now having regular, much more normal, bowel movements than she has ever had since birth. There is some degree of loose poos from gut irritation from the abx but it isn't diarrhea. There is an increase in fatigue and anxiety/rage meltdowns every time we have upped her dose on the Rifampin - we are now at her full dose so I will update later when we see what happens after she stablizes. To give an example of the extremes of her meltdowns, she recently gave herself a bloody nose because she was screaming so hard when we tried to clip her toenails. Also her sensitivity to sound and light/sun has increased. She often complains of tummy aches after she eats and says she is hungry in between her frequent meals. I don't see a lot of bloating so I am thinking this is nausea/tummy issues from the abx, probiotics, grains, or just...I have no idea. I was hoping to see more improvements with her anxiety but that could just be an age thing too.<br />
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Her inner labia has fused shut (for the 2nd time) from yeast issues, imo. I want to avoid surgery at all costs so I reluctantly agreed to use the Premerin cream again and also adding in Flax seed oil (food grade) which also has some hormonal properties but we are seeing a Pediatric Urologist this afternoon for more information. She is still gaining weight, has a decent appetite and is happy and playful (most of the time). Her blood work looks pretty good (now) although, unfortunately, she will have to continue to get pokes (which is traumatic for all) to make sure she is not going into any organ or blood related distress. There is a part of me that thinks she would do much better on naturals but hopefully we will get there soon. I still don't know my ass from my elbow in any of this and it is hard to keep track of what we are already doing. <br />
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Since starting tx with Rifampin 'A' has had rosy cheeks with little red veins and gets small Bart pustule/pimples on her face and upper torso. She has never had much in the way of any skin rashes or abnormalities (other than hypo and hyper pigmentation spots) but the Rifampin is stirring things up and wreaking havoc.<br />
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Girls/4yr old: <br />
A has had a increase in joint/bone pain and stiffness in her feet and ankles. She has very low energy in the morning and gets really hyper at night - even though she is exhausted I have had to cut out naps because it makes the insomnia worse at night. Both girls are only waking once a night, some nights they sleep completely through and this has NEVER happened since they were born. She is having regular, much more normal, bowel movements than she has ever had since birth. There is some degree of loose poos from gut irritation from the abx but it isn't diarrhea or from food allergens. There is an increase in fatigue and rage meltdowns every time we up her dose on Rifampin - we are now at her full dose so I will update later when we see what happens after she stabilizes. There is less bloating and tummy ache complaints after eating. She seems to have a more stable mood and can tolerate a lot more sensory input than she used to. Seems like my girls are having complete opposite reactions to the Bart treatment! Yeast is still a huge issues. Bad days she is lethargic and unhappy and is very needy of soothing with herself with her Nuk & Blankie, or self-stimulation. I am still seeing a decrease in allergic sensitivities all around. She is still gaining weight and thriving so I am happy about that. Of the two, she seems to be doing better on antibiotic treatment than my 2yr old. <br />
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Diet changes:<br />
We are really working to cut out all gluten, processed sugar, and GMO foods - this is a huge undertaking as we are already maxed out on food options with the gads of food allergies that my girls have. I am trying my best not to agonize over the days I am unable to do this to the best of my ability...but that's how it goes when you are sick trying to care for sick kids.<br />
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Skin products: <br />
For vaginal yeast sits baths (these help tremendously) I use a cup of BRAGGS organic, raw, Apple Cider Vinegar With the "Mother" in a few inches of warm water and soak for 15-20 minutes. Love this brand because it doesn't sting or irritate my uber sensitive skinned 4yr old and we also use it as a vinaigrette on our salads. Depending on how bad the yeast is (the baths usually clear things up for a day or 2) I will either have them put Nystatin cream on their vaginas' or Barlean's Flax Oil (food grade).<br />
I use coconut and olive oil for moisturizers and California baby soap when we bathe them. We only soap them a couple times a week because the Bart has made their skin so sensitive. Make sure the coconut oil is food grade if you are going to be putting it on your skin. I also switched to Jason brand natural toothpaste for the girls.<br />
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Supplements: <br />
Probiotic - I like this one the best - Ultimate Flora 50 Billion/10 Strains (I give them 50-100 billion a day). I have heard that it is good to rotate primary probiotic with another so I am going to trial Jarro-Dophilus Allergen free (10 billion, so I will give them 5 of these) and also add in a Saccharomyces boulardii (NutriCology) and see if this helps. <br />
Candex - to treat the yeast<br />
Cod liver oil - 1 tablespoon a day of Nordic Naturals<br />
Vitamin C - 1 gram of crystal powder we get our local Co-op brand. I have heard it is better to do small amounts of Vit C during throughout the day rather than one big dose but I am still trying to manage all that we already do on top of spacing everything out...it is impossible!<br />
Milk thistle seeds - grind them up and put them in juice smoothies (we have not been very consistent with this but I am really worried about keeping their liver enzymes from getting elevated so we will work on it)<br />
Multi Vitamin<br />
D3<br />
CoQ10<br />
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*I am not able to do this supplement regimen every day, but as much as I can I do. <br />
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Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com3tag:blogger.com,1999:blog-6348084712440863641.post-3390158378776211692013-03-21T10:04:00.001-07:002013-05-01T10:30:55.606-07:00Bartonella treatment update for the tots and I. ooops forgot to finish this postJust realized I had posted an unfinished entry so forgive me for the time waste. My brain is not working currently and I have the attention span of a gnat. Here is the finished update. =)<br />
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So we are going on month 2 of Bartonella tx with the Rifampin. I am officially off any pain management outside of ice, heat, epsom baths, muscle relaxer and Clonazepam. I have imitrex for my migrains and Metoclopramide for nausea. I am still on 150mg of Rifampin ramping up to every 2-3 nights in a row instead of every other day and hoping to it isn't going to catch up with me. I have vowed this time I will not let the meds throw me into complete disabling herxes that leave me unable to take care of my kids for days on end. So far I have been in a state of walking dead fatigue, complete hopeless dispair, anxiety, thoughts of ending my life, joint & bone & muscle pain, neck and shoulder pain. However...I think this Rifampin might actually be helping a hair. Some things that have changed since starting tx 10 months ago is that I can sleep a little better and my migraines have decreased. I still have my 27/7 headache and neck pain but the kick in the ass migraines have decreased from daily to 2-3 a week. I was taking the Imitrex every day but now can actually miss some days if I take care not to push myself.<br />
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I have not resumed my coffee enemas due to feeling too crappy to care for myself.Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com1tag:blogger.com,1999:blog-6348084712440863641.post-5290133408618851402013-02-28T12:04:00.002-08:002013-02-28T12:04:57.169-08:00Another badly written post about Lyme and how my life sucks majorly, aka Bartonella Treatment.I am in Rifampin hell. By hell I really mean the burning fires of doom. I should say that I am not a religious person, mostly because I was raised by ex-Catholics who had a sour taste in their mouths about the Church and all associated with it. My parents believe in faith though...and that is another thing I did not really learn growing up. So this is what I imagine hell to be like just from the generality of what I have heard on the subject of heaven and hell, non-religiously like.<br />
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Watching your kids struggle, be sick, need you - when you cannot possibly give them what they need, getting stressed out because mama looks like death warmed over and is acting erratically, and much much much more, is torturous in ways I didn't think possible. At this stage in the game I don't really know how to get them well. I know what would help but I can barely put two sentences together and don't even bath bi-weekly anymore, if that gives any indication of my ability to help anyone right now. <br />
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People always telling me about the airplane mask story...moral, you help yourself 1st so you can help your kids. But if you can't help yourself first...then what happens?? Because that is what is happening in my family. If I try to get well to be a mom for my kids then I get too sick to be their mom and there is no end date on that yet so...now what?...my fucking mask doesn't work so do I use my kid's?<br />
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The worst part is having to put a price on our lives. This rolls in my mind and makes me crazy: We don't have the money to do what it takes to get us well. We could afford it, for awhile anyway, if we opted for the road where my husband ends up losing his job and then we lose everything but the clothes on our backs. BUT: We could afford to do that. Could we? What if we put it all up for betting and even just one of us went into remission?? <br />
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Lymies are like the suckers at a Fair's ring toss booth. Tossing ourselves at anything that looks hopeful, even though we know it will take everything in our wallet without a guarantee.<br />
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My kids are in Rifampin hell too. Symptom increases in; rages, muscle weakness, fatigue, jaw pain, joint pain, muscle pain, anxiety, tics, autistimy flaring in my 4yr old. Side effects of the Rifampin seem to be stomach upset, diarrhea (this is so rare I almost count it as a miracle my kids are normally so plugged up), and drowsiness. I have them on 1/4 of the dose they have been Rxed. Going to move slower than slow. <br />
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My symptom increases have been; anxiety, ear ringing, muscle weakness, paranoia, joint and weird organ pain, headaches & migraines, neck pain, pain pain, FATIGUE, and something something...oh, right!, cognitive function right down the shitter, or "potty" as we call it in our house. Side effects of Rifampin are; drowsiness, diarrhea, and no-appetite (not that it's really working in my favor and I probably could stand to lose another 10plus). <br />
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And I forgot to mention we are all peeing on the "potty" like crazy. When you already have 2 tiny kids with 2 tiny bladders and then they have to pee 2-3x as often, plus my tiny, currently weak (I am not much of a Kegeler) bladder is a LOT of time we have spent in the bathroom this week. Plus all the "accidental" peeing around the house as an additional bonus.<br />
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We got out the juicer and are going to start doing more green, detox juicing - just need to get to the grocery store regularly and the time to juice (all of this is on my husband's shoulders along with everything else). I am going to try Mitosynergy when I can drink enough water and I am too sick right now. Need to up the probiotics. Going to get parsley and burber drops....lots of other plans too but no energy or bodies to execute them. <br />
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Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com0tag:blogger.com,1999:blog-6348084712440863641.post-50280948899941037092013-02-18T06:22:00.003-08:002013-02-18T06:22:51.544-08:00My 2yr old Congenital Lymie updateWe have a new Lyme doctor, same state as our other one. There isn't many people in MN, or that treat peds. <br />
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My comfort level with treating my kids by long term abx is a pretty big zero. I have had so much judgement from friends and family members over this that it has literally ripped about 1/2 of my relationships to smitherines. Had my kids and I been diagnosed with Cancer instead, and I was going to choose an alternate therapy you can believe I would still have all the unwavering support that should be granted to us now. I hate the Cancer comparison to be honest but having Lyme feels like a death sentance a lot of the time. A race against the biological breakdown of your cells and organs. <br />
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Anyway, before treatment, A, was a pretty healthy baby. She was not a good sleeper, had reflux like my 4yr old, was dairy intollerance/allergy and would spike really high fevers 102-103 for 5-7 days at a time, no other symptoms. We brought her to the ER twice for the fevers; the second time she had developed a petichial rash that was spreading before our eyes. All of her blood work, of course, was fine. She complained of migrating pains and headaches. Light bothered her in her eyes and she had a lot of anxiety/fears about things, nightmares, constipation. She was a week past due, great Apgar score, nursed fine, met all her infant milestones (could climb before she could walk), and walked at a year. She started potty training at 18mos and other than pooping in the pot, she does all her bathroom stuff herself with minimal help. She is finally starting to talk more. It is hard to compare because my 4yr old, J, was speaking in multiple sentences by 18months. <br />
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Once she hit a year was when I noticed her complaining of pains and headaches. We all got diagnosed with Lyme, Bart & Babs in Aug of 2012 but we could not get her stabilized on her abx until this December. Since she couldn't tolerate the Ceftin our LLNP switched her to Amocicillin - which our new LLMD feels is a pretty useless abx. <br />
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Our new LLMD things that bart is huge in the Midwest and needs to be dealt with 1st or people will never get over that initial roadblock. He is more old school in his Lyme protocol. A lot of people like him and trust him with treating their kids....at this point we have no alternative and so I am really hoping he will help us more than our other one did. <br />
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A is now on Rifamprin & Clarithromycin - plus some supplements. I want to start more green juicing. The more research I do on Lyme the more I think that repairing the mitochondria is what is going to eventually get us on top of the Lyme. I think the abx will help beat it back but they are also starving the mitochondria too and so you have to work double hard on getting the body systems repaired. But...here is a little snag. I can barely stand up most days and it feels like someone is asking me to step out in the cold and run 5 miles, that is about how monumental all this feels. <br />
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A's symptoms seem better since starting tx. She is definitely more fatigued and crabby, lately, and the dark circles under her eyes make her look like absolute death. A couple of times I took them off abx for a couple days to let their systems just have a break. <br />
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Everyone out there seems to be taking charge of their Lyme and their kid's Lyme and just forging ahead and kicking ass. I just can't seem to pull myself there when I am feeling so sick. I am trying to push myself to keep moving. I know I am taxing my system but if I don't stay strong I am going to just stop being able to keep going on. Would love to hear how others do it...really would. <br />
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Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com0tag:blogger.com,1999:blog-6348084712440863641.post-32607035444443247972013-02-18T05:45:00.004-08:002013-02-18T05:45:37.938-08:00I am tired of my life, the way it is.I know I have to finish up a post, I know I have to take a much needed shower too...but this life of mine just keeps getting derailed for weeks at a time in a blur of nothingness sprinkled with shit. I am baffled at the level of overall encompetancy in this shitty little world of rats scratching in the dirt. <br />
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The second I woke up this morning I had a placenta of misery and dread surrounding my body which then just kind of melted into a bad oozy mood. Since my great excommunication and royal screwing over by my Lyme practicioner I have been in suspended animation of fear and pretty much utter I-don't-really-care-to-see-another-day blankness. Oh I thank god for my kids the most. This is the first real bout of depression that my 2 yr old has seen me in. What makes me irate is this depression isn't coming from some kind of chemical imbalance...it is coming from life being so fucking cruel, and not even in a purposeful, spiteful way - something I could at least wrap my head around - I hate depression. <br />
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Does Lyme cause depression, or is just feeling like you are the walking, joyless, painful dead that kicks that baby into high gear?? <br />
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My husband has called an attorney about what *llina H&C did to me, their illegal dumping of a patient. Honestly, if we were the kind of family that good luck smiled on I would say we actually have a case of Med Mal. <br />
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"Regardless of the situation, to avoid a claim of "patient abandonment," a physician must follow appropriate steps to terminate the patient-physician relationship. Abandonment is defined as the termination of a professional relationship between physician and patient at an unreasonable time and without giving the patient the chance to find an equally qualified replacement. To prove abandonment, the patient must show more than a simple termination of a patient-physician relationship. The plaintiff must prove that the physician ended the relationship at a critical stage of the patient's treatment without good reason or sufficient notice to allow the patient to find another physician, and the patient was injured as a result. Usually, expert evidence is required to establish whether termination in fact happened at a critical stage of treatment." From the AMA<br />
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I have had to put up a lot with abuse from the medical commity. I have been bullied, made to cry, insulted, screamed at, mocked, forced to take medications and undergo proceedures, repeatedly, that didn't work, that made things worse, and once instance in the ER, having heart irregularity, I couldn't even get a doc to come in and check out my heart - my husband and I ended up having to walk out after over 3 hours of waiting. I evenutally started havingmade to bring my husband to every single appointment so the doctors would treat me better, and with some legitamacy - basic respect.<br />
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How do you other people in this world handle the destruction of your life and still learn to live it?<br />
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Okay...part II is coming up next. <br />
Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com1tag:blogger.com,1999:blog-6348084712440863641.post-31488282118126637272013-02-01T18:38:00.002-08:002013-02-01T19:00:49.079-08:00My life as I know it has crashed and gone up in flamesPart I<br />
I am not sure if I will be able to actually get through this entire blog post. My 2 year old will be waking up from her nap and my 4 yr old is painting her latest watercolor masterpiece (called The Bird's Nest) and we are listening to Janet Jackson on Last.fm. <br />
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I was recently dumped by an entire health system. Yes, that is what I said, the entire health system, aka A***** Hospitals and Clinics in Minnesota. Most of the specialists I rely on for all of my care are all within this health network. The psychiatrist I have seen for four years, the primary care provider..for a little over a year (actually, the only one who has agreed to help me), my pain clinic, neurologist, orthopedic, etc, etc. <br />
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Anyway - my primary has been managing my pain, reluctantly and badly, with narcotics, which so far have been the only medication that keeps me standing and taking care of my kids. The pain meds have not worked well and they have so far refused to adjust my dose, or give me a stronger med (which would take care of the pain), because of all the controversy surrounding managing pain with long term narcotics. I do understand the downside of narcotics for pain management, but I also know that when you I am in prolonged pain combined with severe fatigue I start to lose my mind and get suicidal. I am not a suicidal person for the most part but when every waking minute is agony it is hard to want to live. <br />
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Since starting my treatment I have been herxing more than not, and the pain has been unreal. I have often had to take extra doses and this has caused me to run out several days early. I have always been honest with my PCP about my struggle to make my meds last the entire month with herxing, and she has always been understanding and still signed off on me filling my meds a few days early. My contract says to use only one pharmacy or let them know if I am using an alternative, which I have always done and also with the blessing of my primary, as she told me a month ago that she doesn't believe I am abusing my medication or being shifty. <br />
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So....this brings us to yesterday. I had planned on having a conversation about pain management with my PCP for my afternoon appointment. That morning, however, I also was to have my monthly meeting with my psychiatrist in order to get my Lorazepam rx for my anxiety and panic attacks. I have learned to have my husband accompany me to my appointments because I, for some reason, get treated more respectfully and he adds credibility to the myriad of insanity diagnosis that I now possess. We arrive, let the front desk know, he makes a phone call, a security guard shows up and goes and stands outside my psychiatrist's door. Don't know why but we thought nothing of it. She ushers us in and before we can sit down she says, "I am sorry this had to come up but we have something serious to discuss", and hands us each an envelope. Before we can open it she says, "Here is a letter terminating our client relationship and you are not welcome to use our services anymore because you broke your controlled substance contract." I am still not quite registering what she is saying and my husband is staring at her like he has gone dumb. I can see him start to boil and I open my letter which states. <br />
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Dear Ms. W****<br />
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Dr. S.E., MD, and I have consulted with each other about your care. We have reviewed your prescriptions for controlled substances with the MN Board of Pharmacy database, and we are concerned with the following:<br />
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1) You frequently run out of medication prematurely. Prescriptions intended to last 30 days are being filled on average every 23-25 days.<br />
2)You have used at least 10 different pharmacies.<br />
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These are serious violations of your A***** pain contract. For these reasons, Dr. S.E. is no longer comfortable or willing to prescribe narcotics. You are also no longer able to be cared for within A***** Clinics, including Mental Health and the U***** Pain Clinic.<br />
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In order to transition your care, I will be tapering your lorazepam and your prescriptions will be sent directly to L**** Pharmacy. You will see Dr. S.E. today to start the taper of your narcotics.<br />
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It will be important that you find a new primary care provider and pain clinic in the Twin Cities as soon as possible. In the meantime, you have R.K, NP to provide interim care. <br />
sincerely, <br />
GVD, MD<br />
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And with that she stands and tells we need to leave her office. I am still sitting on the chair, but, but, butting like a motor boat because all of this has come completely out of left field like a bomb went off. A psychiatrist, who I have worked with for 4 long and painful and sick years, WHO KNOWS ME, who believes me to be suicidal, who believes me not to be sick but deeply depressed and emotionally fragile, is DUMPING me with no warning, and for reasons that are not accurate. Not only am I being dumped with no warning....I am being excommunicated from the largest health system in our state. Not only that, but the person they are saying I can get interim care from is my LLNP who lives in another state and doesn't even bother to call me back when I am in a crises. My husband finally found his voice and said, "But this isn't even true!". She just continued to look at me like I was some disgusting criminal and said coldly, "I am not at liberty to share any information with you and I think you need to leave now." Both my husband and I became frantic, peppering her with who, what, why, how questions and she continues to glare at me like I had murdered her dog. She informed us if we had any questions then we could take it up with A***** Legal department, but she didn't have to tell us anything and wasn't interested in hearing what we had to say. She told us again that we really needed to leave. I can't even describe how deeply I was fucking devastated, torched, slapped, stabbed, freaked out like I have never been before. My heart literally dropped into my stomach. I couldn't even see straight or have the sense to stand up and walk out the door. My husband grabbed my arm and helped me through the lobby and into the elevator - followed by the same security guard - which, by this time, I am sobbing huge cry baby sobs that are loud and probably scaring everyone in hearing radius. I can't even make my limbs move and everything is ice cold numb and I can't stop sobbing from the complete unfairness and coldness and rudeness and plain and simple assholedness of what this bitch of a woman just did. Someone who's job it is to keep people mentally healthy just cut me off at the knees without a simple sayonara, sorry to see you go. This woman who must have taken serious acting classes to have acted like she cared about saving my life for 4 long years only to turn on a dime and tell me to fuck off and die like she didn't even know who I was. <br />
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My poor husband didn't know what to do. He wanted to run and get the car for me but didn't want to leave me in the lobby crouched on the floor, bawling my eyes out and hyperventilating while people stared in horror, but he couldn't even get me to move I was so distraught. <br />
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Up until this point I have had moments of great sorrow and wringing my hands over the unfairness of friends and family judging me and turning their backs on us. I have had big, bawling cry baby sob sessions every time a lifelong relationship had come to a nasty end, out of the blue with no reason or warning. I have had a lot of this since telling people of our Lyme diagnosis. But all my prior experience with devastating abandonment and loss did not steal my bones for being dumped by my health system. <br />
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This is probably a lot to chew on so I will post what happened at the afternoon with my PCP tomorrow. To be frank, I am really trying not to think about this as much as possible because I came very near the end of my will to live yesterday and if I think about the enormity of what has just happened I don't know that I will be able to hold it together. I already spent 12 solid hours crying my eyes out (while the kids were not home) and I allowed myself to cry on the way to the pharmacy to get my step down pain meds today. My daughter held my teary face in her hands last night, and peered into my face with her eyes big and wide, and said, "Momma...sometimes the good days just turn bad, but it will be okay." And they do, and they will. My 4 yr old is a wise little soul. She has seen more suffering in her young life than many adults do in their lifetime. <br />
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I made the pinkie swear today to my children. That I will not take my life, and that I will keep fighting until we are all recovered from Lyme, and that I will grab as much joy out of life with them as I can....and celebrate every blessed moment that is good. Because the bad is a lot and it is really bad, so bad that if I didn't make this pinkie swear with my children now I may have not made it to this weekend. <br />
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For any of you out there that are struggling the daily life and death struggle, that Lyme is so good at forcing you into, please click on this link and join me in making the pinkie swear. <br />
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<a href="http://whatislyme.com/if-you-ever-feel-suicidal/">http://whatislyme.com/if-you-ever-feel-suicidal/</a><br />
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okay, now to put my squirrels to bed and finally rest my aching body until tomorrow. Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com1tag:blogger.com,1999:blog-6348084712440863641.post-26772893504008515492013-01-29T09:45:00.001-08:002013-01-29T09:45:09.132-08:00Fabulous remedy for Vaginal and anal yeast issuesMy kiddos have horrible issues with yeast, especially since starting the abx and we are not yet GF. <br />
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In a few inches of water add a cup of good quality Sea Salt (does not need to be the uber expensive stuff) and a cup of good quality Apple Cider Vinegar. <br />
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Soak bum and bits for 20 minutes. <br />
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This has helped my kiddos tremendously and takes all the red, rawness away instantly. Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com2tag:blogger.com,1999:blog-6348084712440863641.post-11078078187879910102013-01-29T09:42:00.002-08:002013-01-29T09:42:38.290-08:00I don't know what the hell I am doing.<div class="text_exposed_root text_exposed" id="id_51080612b30004a12392264">
<span class="userContent">Before I start my tirade about yesterday I want to mention that I started herxing, around 11pm last night, from my Bartonella sequence on the Wellness Pro that I did on Sunday. It definitely feels like a milder version of the Bart herx that I had for 3 weeks. The only addition is some pain in my back...almost feels like bad gas or kidney pains. I over did a coffee enema (did the entire litre by accident) and my bowels haven't been working very well since. I have also been living off of coffee so that isn't doing me any favors. I feel too worn out to properly care for myself and I am really struggling just meeting my kids needs right now. I felt really good for a couple days and now herxing. I am going to try the Yeast and Detox sequence on the Wellness Pro this afternoon. I was hoping that my kids could use this machine too but it says that people with seizure issues shouldn't do it so my 4yr old can't as she has recently been diagnosed with Benign Rolandic Epilepsy.</span></div>
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<span class="userContent">Ok - here goes rant:</span></div>
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<span class="userContent">2 hour appt with pediatric allergist for both girls. My 2yr old had lovely scratch testing on her back - was NOT happy. Additional blood work required by our insurance company before they cover a medication that 4yr old needs - 6 vials of blood, 5 of those for bullshit tests for the insurance company. J (4yr old) was utterly traumatized. I wish I would have filmed her screaming in agony and sent that<span class="text_exposed_hide">...</span><span class="text_exposed_show"> to my insurance company and had it to show all these doctors exactly what they are doing to my child all because of their ego and politics. This will be the last time I comply. I will not subject my daughter to torture to please the insurance company. I almost vomited from watching the raw fear and hearing Junipers begging and screaming in terror. I can't do this anymore, there has to be another way than this because my heart can't take it. I am so sad and feel like I failed my child. My heart goes out to all those children (and their families) who have very serious health problems and need a lot of hospitalizations and require a lot of invasive procedures. J asked me why she has to go the the hospital all the time, and then told me that this was the last time she would do it. She asked me could I just lie and trick the nurse next times so she doesn't have to have this done to her anymore. I hate this so much, and I hate that my baby has to suffer</span></span></div>
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I hope my these insurance companies and money mongers rot in hell forever. I really feel that this is going to far. I don't think tormenting my kids, to this extreme degree, in order to take a particular abx is a good thing for their mental health. My 4 yr old already has huge anxiety issues and she has been in and out of the hospital, more often than not, her entire life. If she doesn't get a break, if this kind of thing keeps happening to her it IS going to permanently traumatize her and I don't want that to happen. My friend who came with could hear her screams from the waiting room and he said that he almost had to leave because it was so awful to listen to. I saw her face, I saw how terrorized she was and I can't put her through that again, I just cant. People try to make me feel better about it by saying that it is always worse on the parents and frankly that is crap. If you saw my child's face you would know that is the biggest line of bullshit ever. The problem is that we can't get a lot of assistance from our Lyme practitioner between appointment times and this is when the emergent issues come up, so I am left having to make these decisions myself and I have no idea what I am doing....</div>
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I feel like I have to be so careful about questioning any thing my LLMD says because they are the end all be all of Lyme knowledge but they don't know everything either. I feel it is my job, as my kids mother, and as a patient, to weigh the pros and cons, and research, what we are being asked to do for treatment. Only, I am so worn out and I can't get answers anywhere, from anyone. Everyone has a different therapy approach, a million - no - a billion different supplements that help this or that parasite and mold organisms and I DON'T HAVE A BRAIN TO FILTER OR PROCESS ANY FUCKING INFORMATION ANYMORE. I really don't feel I am getting enough guidance from my practitioner and that scares the hell out of me. I am at a point that I cannot do treatment and take care of my kids at the same time so what are my options now? No one will help me, help us find a balance. </div>
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After re-reading what I wrote I really think I need to do more work with being positive because all this negativity is also not helping me heal. </div>
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Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com0tag:blogger.com,1999:blog-6348084712440863641.post-75323061139941545662013-01-28T10:38:00.000-08:002013-01-28T10:38:05.521-08:00My Marathon Herx, My Periods, and the Wellness Pro 2010, oh my!I am in a hurry because my husband and I have our 1st couple's therapy session today...hahahah, just kidding, we have our second. The first one was entirely erased from my memory so I am excited, today, like it is my first time meeting our therapist and what she will think. <br />
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Anyway, after a mother of a long herx, where the pain got so bad I went crawling to the ****** Pain Clinic for help as neither my PCP or my LLNP were available, or going to make themselves available. Anyway, they actually helped me after an hour of sobbing uncontrollably and telling them that I have already done all of the THERAPIES, in this town, that I can afford. So they gave me dilaudid and I can't even tell you the difference of pain relief between vicoden/percocet/methadone & dilaudid. I was in so much NOT pain that I was able to get down on my hands and knees and play with my children for the first time in four years! <br />
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Unfortunately those magic pills ran out after a few days, because of course the Pain clinic has no interest in actually managing my pain so I can function on a daily basis, and I went back to being completely immobile and miserable again. However a weird thing happened. A few days later I got my period and the herx basically abated, for the most part. I was blown away. Before Lyme my periods were as regular as clockwork with horrible hormonal fluctuations that always seem to take me by surprise, for some reason. I have always had horrible PMS, Post MS, During MS, and then I would get about a week respite where my body and psyche felt normal and good. I started my Lyme treatment at the same time I stopped nursing my 16 month old: I hadn't had a period for over two years at this time and lost all track of my hormonal cyclic destruction. Another thing I have noticed with treatment is that I have been getting horrendous 3 day migraines right before I get my period. All in all, the frequency of my migraines has gotten a lot less, as has the intensity of my 24/7 headache. I know the pain meds help, but I also think the abx have helped too. <br />
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So, for the last three weeks I have been in a desperate and horrible state with this last herx. I had tried doubling and tripling my pain meds and nothing. I tried gallons of lemon water, upping my milk thistle, drowning myself in Epsom baths and daily coffee enemas...and NOTHING! I ended up resorting to endless whining to the very nice people in my online Lyme support groups. They were patient and encouraged me to keep hanging in there...but even that stopped being very reassuring. I ended up getting pretty hopeless after week two and was starting to have some suicidal ideation. It was scary and very distressing. The tail end of week three, of this monster, marathon herx, pushed me into an embarrassing meltdown involving; some rum on an empty stomach, a Shakira album at top volume, my old coin skirt and bracelets, boas and faux fur wraps, green and baby blue eyeshadow over my eyebrows, belly dancing (badly) with my kids while sobbing uncontrollably, and the grand finale, my pièce de résistance, was me trying to escape my house in my socks in below zero weather and causing a possible 'domestic' scene on my icy front lawn. Thank god my good friend, who was over helping me, kindly manhandled me back into the house and put me to bed in all my Shakira glory where I blessedly passed out and woke with absolutely no memory of my night of shame. Sadly, very sadly, my kids did witness some of this and for that I am deeply, more, ashamed and feel like a terrible monster mother. What people don't understand, who are not me (or my husband), is the enormity of the fear, the pain, the hopelessness, the frustration, the anger, the helplessness, the sheer pressure of caring for sick kids while being practically bed bound 1/2 the month, the incredible loss of my life, the loss of being a wife and a mother and a friend and a productive person....all off this rolled up into one giant burrito that have to chew on non-stop; morning, noon & night...and plenty of hours that I should be sleeping but can't because of the insomnia monster who forces me to sit awake all night and think about how much of this hell burrito is left. While I don't really drink anymore, I badly needed to just have a release of all this negative weight that is slowly crushing me to death. Luckily my kids always have reliable and nurturing people around them at every turn....even when mama has completely fallen off the wagon and is being crushed under the wheels. I know I am beating myself up more than I should, but I don't want to scar them EVER....and as a parent that is a pretty impossible task even if you live in a normal and healthy household. <br />
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So back to why I originally wanted to post. Okay, the Wellness Pro 2010. A kind, kind, angel in one of my support groups has loaned me this very expensive machine/unit thing that sends vibrations into your body to kill the lyme bugs and for other nagging issues you may have, like pain and yeast. Because I am so desperate, albeit extremely skeptical of every and all treatments that claim to help pain and Lyme and related problems, I decided to just try it out and see what happened. Since I am currently not on my abx, because I only seem to only be getting much, much, scary worse, I am at a good place to actually see if this machine will help me. The Wellness Pro is not a rife machine, but more like a monster tens unit. I am still not clear on the difference between the rife and a tens, and trying to find a lot of really good, informative info has not really panned out well. That, and my attention span and ability to absorb info is not in great shape these days so it all just melts away into gibberish for the most part. <br />
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Saturday I did a sequence for Lyme and then the detox. I drank a lot of lemon water as instructed and waited...but didn't feel much difference. Maybe a little more energy but it was hard to say since I had just come off a three week, disabling herx...so everything felt a bit better by comparison. Sunday I did a bart sequence and felt like crap afterward. I followed it up with a lot of water and the detox sequence and then went to bed because I felt achy and headachey and anxious. <br />
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However, this morning when I woke up - I had to be up 2 hours before my normal wake time for couples therapy - and I was actually able to get out of bed and walk around without feeling completely crippled from the stiffness and pain in my joints! Normally, the first thing I do in the morning is have my hubby give me a pain pill and I lay in bed until it starts to kick in. Once it kicks in I am able to get up and move to the couch and have a morning cup of coffee and slowly get all my joints warmed up and moving so I can start taking care of my kids. Anyway, I think this is fabulous if it isn't a fluke. I will keep blogging about my experience with the Wellness Pro. I am really hoping that this helps, and that if it helps, other people can rely on this as a way to help with their issues. I am trying to finish this post fast because my kids are melting down and I have already spent more time on the computer than I intended....so, apologies that this post isn't edited for readability. <br />
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Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com0tag:blogger.com,1999:blog-6348084712440863641.post-75204453438115433312013-01-18T08:18:00.001-08:002013-01-18T08:18:52.919-08:00My Doctors are in an Ego War - My Healthcare, The Casualty
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<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">Just got a call from my PCP - who is
really angry with my LLNP because my LLNP wouldn't call her to discuss how to best help me when I am herxing and really, really sick. *My PCP knows nothing about Lyme, doesn't believe I have Lyme, and will not educate herself about Lyme - I tried to bring her some literature to which she just tossed aside and told me she had already read it so I don't bother anymore because it could cost me big time. I called my LLNP and repeatedly begged her to call my PCP (this was over a period of several months). Finally my LLNP called my PCP but got her voicemail. She then tried a coupld more times but everytime she called my PCP, my PCP was with clients or unavailable so she gave my PCP her cell phone number. So, then I begged my PCP to just please call my LLNP. So my PCP finally acquiessed and called my LLMD but was unable to talk to her because my LLMD was with clients or at lunch. I reminded her that she had my LLNP's cell phone number but she said that she wasn't going to use her off hours to call. So, now both of them are angry at the other and are refusing to call the other. What makes it even better is that they are both irritated and angry at ME because of this. Like it was my decision to choose asshole, egomaniac doctors for my care. My PCP even yelled at my husband and I at one visit because she feels if we are paying for private care than we should be getting more than we are. I tried to tell her that my LLNP was a one woman show and didn't have an entire clerical staff on hand to do all the busy, chart work and phone calling. She got so enraged that she basically threatened that if we didn't like the care she gave us we could just rely on my LLNP for my care. My LLNP lives 3 1/2 hours away, in another state....and I can't drive. However, her little threat made my blood run cold because if she cut me off from the pain medication I would be beyond screwed. The only way I can get out of bed and take care of my little girls everyday is because of those horrid little pills: pills that alleve my fatigue and pain enough to function like a semi-normal person....too bad they don't make my brain work better.</span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">Anyway, I can rarely get ahold of my LLNP and when I am lucky enough to reach her receptionist/helper I leave a message and hope I will get a call back within a couple weeks. Now for emergencies, that leaves me completely screwed. Same for my kids. Luckily my kids have not gotten as ill as I have so we have been spared that bullet so far. I dread that time because I am terrified that we will bring them to the kiddy ER and they will find out I am treating my kids with abx, and that the abx has caused them to be really ill and then they take my kids away for wanton abuse. </span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">So, with all this latest herxing and
feeling like death - specifically that I can't feel my arms, hands or feet and the nerve pain running rampant is absolutely, breathtakingly unreal. After stopping my abx and not getting better after 2 weeks I finnally caved and left a message with my PCP about the pain and what to do
since all the pills I have on hand are not making a dent: I already spoke to my LLNP and all I got was go 1/2 dose on my abx and detox more. </span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">I waited a for a call back and two days later my PC</span><span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">P's nurse called and told me that my PCP
said that maybe from here on out my LLNP should be managing my pain. Like I said earlier, with how strict they are on pain medications these days, THIS ISN'T A POSSIBILITY. I spent all yesterday curled on the floor in a fetal position sobbing my heart out. I am so glad we put the girlies in daycare so they didn't have to see me freaking out and get scared. Even while I write this I am starting to tear up from the complete lunacy and total UNFAIRNESS of it all. I am doing my part. I am jumping through all the hoops. I am putting my husband's job in jeapordy in order to try to make it to all these appointments, by all these specialists, just in order to satisfy my PCPs discomfort with Rxing me pain medication. </span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p>It is such a total waste of health care dollars it isn't even funny. And it all stems from the fact that my doc won't admit that I have Lyme. I just feel absolutely devastated by all of this. I just thank god that my kids aren't in this kind of pain and I really hope it never happens because I don't know who would help us. I have to laugh a very twisted laugh to think that the outcome of my care is at the hands of 2 medical professionals who are in the middle of an ego war...my life, truly does not matter to them and that make me feel so bad I dont' think I could describe it. Like I am worth less than nothing. They are going to kill me and they don'' even care....they don't even care.</o:p></span></div>
Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com0tag:blogger.com,1999:blog-6348084712440863641.post-4316778160131057912013-01-18T07:50:00.004-08:002013-01-18T07:50:50.488-08:00The Tales of a 1001 Drugs, aka More Whining about My Latest Lyme HerxThe fatigue has been unreal with this last herx. Normally my pain meds take away the fatigue - which is a great added bonus because that fatigue is a killer - but this time they aren't making a dent anywhere. I wish they had a better option for me than this. I would love to take anything other than the pain meds if they helped. I have tried probably over 40 medications in the last 4 years and the 2 pain meds I am on are the only ones that have helped at all. Really getting nervous that my next dx will be MS. Getting more and more MS symptoms, and while I know it is Lyme herx, I also know that the only way doctors will help you with your Lyme symptoms is by diagnosing it with something else. How ridiculous is that?? At this point I probably have over 12 diagnosis for what is wrong with me. Now doesn't that seem a bit odd why the doctors wont just admit it is Lyme? <br />
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There are a lot of diagnosis that I refused to be labeled with too. Initially when the doctors told me it was all in my head, that I was just depressed and anxious, they basically strong armed me into trying all kinds of anti-depressants and anti-anxiety pills. Most of these pills had such awful side-effects that I could see why mentally ill people would choose their mental illness rather than these horrible meds. 2 or 3 of them, I forget there were so many, made me literally suicidal and raging within hours....scared the crap out of my husband and my family. One minute Im a docile crybaby and the next the fire and brimstone devil himself. So...after months and months of this, my Psychiatrist kind of threw up her hands and said, "Do you think you could be Bi-Polar?," I was like, "WHAAAAAT!?" I have a step uncle who is Bi-Polar and I can guarantee you that was not my problem. I told her I really didn't believe that the Bi-Polar disorder fit me...even a mild Bi-Polar. She then told me that they often give people a diagnosis of Bi-Polar to patients when they cannot tolerate regular anti-depressants/anxiety meds. Now...who the flippity, how the flippity...I wanna know who is the Brains behind this moronic abuse of scientific thinking? Up until that time, I really had respected and liked my frustrated Psychiatrist. Now...I got really, really, really scared. It finally dawned on me that she doesn't know what the hell she is doing, either. I could be running the show for how much progress we had made in two years. Up until this point they all had me convinced I was losing my mind and that they could fix it with drugs that they couldn't really explain how they worked outside of the TV commercial soundbite you hear. 'My feel good brain hoses needed to be strangled so that my feel good balls would keep floating around and keep making me feel good...that sort of thing.' <br />
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It took me awhile longer to start to trust what I was feeling this entire time...that I was SICK, physically sick, and that it was because I was sick so long that it was causing me to be depressed and anxious. I did not know, at the time, that Lyme causes severe depression and anxiety. I do believe I truly developed PPD and PTSD with the birth of my first child because of the physical and psychological trauma I experienced, but I know that if I had gotten a correct diagnosis of Lyme earlier then I could have saved myself 3 years of utter hell and suffering. Of course I would have suffered anyway with the treatment...but I could have but I could have let my poor psyche off the hook and given it a break. <br />
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Sorry folks...this post was supposed to go somewhere and I feel like I am just rambling and rehashing everything I have already posted so I am going to end it here. <br />
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I am hoping for peace for you all...and also that you listen to your gut when you feel like there is something amiss. Our doctors, even our LLMDs do not know everything, nor do they have all the answers. You need to be an advocate for yourself in all avenues and that is really hard to do. If something isn't working then keep rattling your chains until these docs listen and help you change it.<br />
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Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com0tag:blogger.com,1999:blog-6348084712440863641.post-91040181512756383542013-01-17T10:28:00.000-08:002013-01-17T10:28:23.258-08:00My post to Katie Couric's query, "What was your worst health scare?"
I ran out of some of my useless, but better pain meds and now am having had to resort to using my less than better, but useless pain meds. I am in so much pain that I begged my husband to pay for daycare (really don't need to beg, I have a wonderfully supportive husband) for the next two days for our kids because I am really starting to lose. it. I am in a pretty bad and dark place. Prolonged pain and debilitating symptoms really start to get to you after awhile, and it truly is hard to think of reasons to want to keep your life going. Feeling like I am, right now, always takes me a LOT by surprise because I really never think of myself as a depressed or suicidal person, and it is very scary when you get so wor<span class="text_exposed_show">n down that ending your life feels like a better option than the physical and mental suffering you are currently enduring. I am truly and thankfully very blessed that I have my kids because, without them, I honestly don't know if I would have the inner strength to go through all of what I am in order to maybe, one day, years from now...get better. Anyway, one of the many bits of note-worthy info that swim by me on the vast internet sea was Katie Couric's quest for more knowledge...too tired to even be ironic. But since the Lyme community has been rallying to give this woman what she asked for, and I don't have the kids, I decided to do my part for the Lymie movement. Anyway, here is what I posted - sorry as it is pretty redundant from what I have already posted. Lucky for me that I have no short term memory - thank you Lyme - it is all fresh stuff for moi. </span><br />
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</span></span></span><span style="font-family: Calibri;">The worst health scare, bar none, is my, and my
two daughter’s (age 2 and 4) current battle with Chronic and Congenital Lyme
disease.<span style="mso-spacerun: yes;"> </span>I have had Lyme disease for
most of my life but didn't know what was wrong with me; my mom brought me to
all kinds of doctors while I was growing up and none of them had any idea either.<span style="mso-spacerun: yes;"> </span>I believe I contracted Lyme at the age of 4,
after having eight ticks imbedded in my back, and again at the age of ten and
again at 12.<span style="mso-spacerun: yes;"> </span>I developed strange and severe
symptoms after each incident but we had no idea Lyme disease even existed.<span style="mso-spacerun: yes;"> </span>My main symptoms in childhood were; a
non-stop headache (at no time do I not have a low-grade headache), constant
migraines, ear infections, allergies, severe eczema, anxiety, stomach problems,
fatigue, and joint pain.<span style="mso-spacerun: yes;"> </span>The severity
and frequency of my migraines has cost me a lot of jobs in my life.<span style="mso-spacerun: yes;"> </span>After a botched C-section with my 1st
daughter (I had no anesthetic) I got really, really sick.<span style="mso-spacerun: yes;"> </span>I got very depressed and anxious to the point
of mania.<span style="mso-spacerun: yes;"> </span>I was <span style="mso-spacerun: yes;"> </span>so fatigued that I couldn't stand up or hold
my newborn baby for long periods of time: It felt like I was walking through
neck high mud wherever I went, even brushing my teeth was a monumental task
that would take me hours to accomplish.<span style="mso-spacerun: yes;">
</span>I was initially diagnosed with Post Partum Depression and PTSD (from the
birth trauma), and spent the last four year seeing dozens and dozens of doctors
(literally), doing dozens of therapies, taking dozens of medications with
horrible side effects, all to help me get well and nothing has worked to date.<span style="mso-spacerun: yes;"> </span>The diagnoses that I have accumulated, since
the birth of my 1st child, are: Post Partum Depression/Anxiety/OCD, PTSD,
Anxiety, Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Major
Depression, Bi-Polar...and I am pretty sure my next diagnosis will be MS.<span style="mso-spacerun: yes;"> </span>I found out that I had Lyme disease and two co-infections,
Bartonella and Babesia, and that I had passed them to my beautiful children in
utero.<span style="mso-spacerun: yes;"> </span>We all found out we had Lyme in July
of 2012.<span style="mso-spacerun: yes;"> </span>My four year old daughter has
been very sick since she was born.<span style="mso-spacerun: yes;"> </span>She
has had so much wrong with her that it would take a book to describe it
all.<span style="mso-spacerun: yes;"> </span>Her major symptoms include;
extensive food allergies (allergic to over 40 foods that we know of), severe eczema,
gross motor delay, neurological glitches like tics and a recent seizure, anxiety,
Sensory Processing Disorder, Hypotonia, insomnia, rages that include severe
emotional meltdowns (multiple times a day) that go beyond normal toddler tantrums,
constant stomach aches, chronic constipation, joint pain and leg spasms,
headaches, chronic ear infections, eye problems, sinus issues, sleep apnea, and
extreme nightmares - <span style="mso-spacerun: yes;"> </span>Her Neurologist was
convinced at one point that she was going to show mild Cerebral Palsy on her
MRI but the MRI came back clean and he was flabbergasted!<span style="mso-spacerun: yes;"> </span>There are probably more symptoms that I am
forgetting to include, but I have no short term memory from my Lyme illness so
my brain function is really poor.<span style="mso-spacerun: yes;"> </span>My
sweet four year old has had to endure more pain and suffering in her short life
than a lot of people experience in a lifetime.<span style="mso-spacerun: yes;">
</span>My wily two year old seemed to be the healthiest of all of us
initially.<span style="mso-spacerun: yes;"> </span>She is the only one of the
three that has been able to get a CDC positive for Lyme disease.<span style="mso-spacerun: yes;"> </span>Since she was born her symptoms have been;
rages, anxiety, OCD, Sensory Processing disorder, nightmares, neurological
gross motor glitches that include falling episodes, allergies, bouts of
extremely high fevers with no other symptoms <span style="mso-spacerun: yes;"> </span>and then extremely low temperatures out of the
blue, headaches and joint pain.<span style="mso-spacerun: yes;"> </span>I don’t
know if there is anything more horrible than your one year old holding their
head or knee and screaming in pain.<span style="mso-spacerun: yes;"> </span>As a
mother I have had to watch my children suffer horribly and there is nothing I
can do to help them.<span style="mso-spacerun: yes;"> </span>You see we can’t
get a doctor to help us because they all say that Chronic and Congenital Lyme
disease does not exist.<span style="mso-spacerun: yes;"> </span>We are forced to
see a Lyme Literate practitioner in another state because she is the only
person that will help us.<span style="mso-spacerun: yes;"> </span>All of our
medical expenses are pretty much out of pocket, and we pay for health insurance
yet are unable to use it for any treatment related to our Lyme disease.<span style="mso-spacerun: yes;"> </span>We have spent over 30 thousand dollars since
I got really ill four years ago.<span style="mso-spacerun: yes;"> </span>Every
year we completely max out our Out Of Pocket expenses, and this is on top of
paying for all of our Lyme treatment out of pocket.<span style="mso-spacerun: yes;"> </span>Since I lost my job last year because I was
too sick to work, I am now a stay at home mom and trying to take care of two
sick girls while I am almost bed-bound for half of every month.<span style="mso-spacerun: yes;"> </span>I am in constant and excruciating pain, and
my cognitive abilities are so compromised by my illness that I don’t drive much
anymore, and rarely leave the house.<span style="mso-spacerun: yes;"> </span>We
are very lucky in that I have my parents close by to help, my husband and I, take
care of our girls.<span style="mso-spacerun: yes;"> </span>I have a good friend
that also comes over to babysit me when I am so ill that I am literally
paralyzed on my bed and unable to eat, drink or use the bathroom for several
days in a row.<span style="mso-spacerun: yes;"> </span>We don’t go to the ER
anymore, when this happens, and I will explain why later.<span style="mso-spacerun: yes;"> </span>My husband has been an incredible support
system through all of this.<span style="mso-spacerun: yes;"> </span>He is single
handedly keeping our ship from sinking.<span style="mso-spacerun: yes;">
</span>Because I am so disabled, my husband will get up in the morning before
work and get the girls fed, then will come home at lunch and feed them before
getting them ready for their nap, and when he gets home he will make dinner for
all of us and get our girls ready for bed.<span style="mso-spacerun: yes;">
</span>Because of the massive amount of stress and responsibility on his shoulders
he is also starting to crumble and it is taking a huge toll on him, mentally
and physically. <span style="mso-spacerun: yes;"> </span>Lyme disease is one of
the only diseases that also comes with incredible political controversy.<span style="mso-spacerun: yes;"> </span>In fact, the controversy over this disease is
so wide-spread that most people with this illness end up losing a lot of their
family and friends over it.<span style="mso-spacerun: yes;"> </span>It is one of
the most socially isolating and lonely illnesses I have encountered, because it
is so hidden, and because of the politics and controversy behind it.<span style="mso-spacerun: yes;"> </span>The controversy is so prevalent that it
affects all avenues of your medical/health care once you are diagnosed with
this illness. <span style="mso-spacerun: yes;"> </span>For Example, the first
time I needed to go to the Emergency Room for heart arrhythmia (caused by
complications of my Lyme disease), my husband and I were literally berated and screamed
at by my ER physician.<span style="mso-spacerun: yes;"> </span>I wish that this
incident was isolated but it isn’t.<span style="mso-spacerun: yes;"> </span>If you
ask any person with Lyme disease about their experiences with how they have
been treated while seeking any and all medical care they will tell you this
same story, of abuse and disrespect, over and over again.<span style="mso-spacerun: yes;"> </span>Well I have gone on long enough but I BEG of
you to do a story about Lyme Disease, and on those of us (our children
especially) that are suffering from this horribly debilitating disease. <span style="mso-spacerun: yes;"> </span>Please help us have a voice so that at least
our children can get the medical help they need to live and experience
life.<span style="mso-spacerun: yes;"> </span>Thank you for listening.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoListParagraph" style="margin: 0in 0in 10pt 0.5in; mso-list: l0 level1 lfo1; text-align: left; text-indent: -0.25in;">
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;">Here is the link if you want to post your story too. Go Lymies!</span></span></div>
<div class="MsoListParagraph" style="margin: 0in 0in 10pt 0.5in; mso-list: l0 level1 lfo1; text-align: left; text-indent: -0.25in;">
<span style="mso-spacerun: yes;"><a href="http://www.katiecouric.com/lets-talk/what-was-your-worst-health-scare/">http://www.katiecouric.com/lets-talk/what-was-your-worst-health-scare/</a></span></div>
<div class="MsoListParagraph" style="margin: 0in 0in 10pt 0.5in; mso-list: l0 level1 lfo1; text-align: left; text-indent: -0.25in;">
<span style="mso-spacerun: yes;"></span> </div>
<div class="MsoListParagraph" style="margin: 0in 0in 10pt 0.5in; mso-list: l0 level1 lfo1; text-align: left; text-indent: -0.25in;">
<span style="mso-spacerun: yes;"></span> </div>
<div class="MsoListParagraph" style="margin: 0in 0in 10pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"></span></span> </div>
<div class="MsoListParagraph" style="margin: 0in 0in 10pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"></span></span> </div>
Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com0tag:blogger.com,1999:blog-6348084712440863641.post-4119213958104024312013-01-13T20:01:00.000-08:002013-01-13T20:01:54.571-08:00Our Health Care System is Broken and It Definitely Can't Fix My Herx
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">It has been a week and 1/2 of hell
so far. After 3 nights of horrific searing, burning nerve pain and complete
icy-cold numbness in my arms and hands, some in my feet and ankles but without
the pain, I finally caved and went to Urgent Care. These 3 nights were some of
the longest and most torturous I have experienced to date. None of my pain meds
even touched what was going on in my body. <span style="mso-spacerun: yes;"> </span>Every time I would nod off my arms would go
numb then my nerves would start feeling like someone had taken a torch to them
and was burning the crap out of them. I even tried my old trick of binding my
arms straight and propping myself up with pillows to sleep upright but nothing
I did alleviated it except to stand up. Well, after 3 nights you really don't
have the energy to even do that anymore. I had debated at 3am the night before
if I should go to the ER but decided against it because I didn't want to end up
paying good money only to have them completely treat me like shit and do
nothing to help me. I am so glad I went (that is sarcasm there) because I spent
3 hours, surrounded by coughing, hacking people who were sick from the flu only
to be told they couldn't help me and I would have to go to the ER. The irony
was that the good doctor, who was assigned to my care, was the same one I saw
about 6 months ago who wrote, “Drug Seeker”, on the top of my visit summary, as
the #1 reason of why I was there visiting the UC. I was absolutely stunned and
irate to see this nut job but it gave me an opportunity to tell her off. When
she came back to discharge me I reminded her of what she did. She tried to
wriggle out of any culpability and I told her that her that, 'by dismissing me
and writing a falsehood about being a drug seeker, on my summary, I would most
likely get denied for disability'. She just kind of hemmed and hawed uncomfortably,
and mumbled “Sorry” before she rushed out of the room. <o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">I called my primary care doc (again)
to see if they could help me, or give me a referral for an EMG at my Neurologist's
office but her nurse called me and told me that my doc wanted me to do physical
therapy first, before she would write up a referral. What the?...how the
flippity flying eff does that make any sense at all?!? There are times that I
cannot believe I am forced to see these morons in order to get the meds I need
so I am not bedbound and unable to care for my children. I am not a doctor and
even I know that makes no sense. So...I can't sleep, or use my arms, and
waiting a month to get into a physical therapist for what, I don't know, before
I get a referral to see if my nerves are completely damaged is going to fucking
help my current situation...at all??!!?? I cannot believe this woman is a
doctor. The worst part of it all is that she is the best doctor that I have had
to date...and that is a sad commentary on our medical system. I told her nurse
exactly what I thought of that plan and she said she would call me back after
letting the doc know that I something a bit more, um, immediate. So my dad
comes and picks me up to bring me to the ER. So I spend another 3 hours
surrounded by people coughing and hacking and I feel like death. I have paid
$100 for my kids to be in daycare because if my husband has to continue to take
any more time off he will lose his job and then we will really be screwed.
Finally the nurse calls back and tells me that they have okayed a referral to
my Neurologist for an EMG and my appointment is for the next morning!!! At
least I don't have to wait any longer at the ER. My dad comes back to pick me
up and bring me back home.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">So the next morning we pay another
$100 for daycare, because I am expecting to have an EMG and still can’t use my
arms for anything useful, and set off for the Neurologist’s office.<span style="mso-spacerun: yes;"> </span>I finally get in to see him and he takes
notes of everything I say and then leads me out to the discharge desk and tells
me it was good to see me and that the lady will take care of the rest and to
just give her my name.<span style="mso-spacerun: yes;"> </span>I am left just
standing there in a stupor because I am so confused about what just took place.<span style="mso-spacerun: yes;"> </span>So I wait 15 minutes for her to get off the
phone and then I tell her my name.<span style="mso-spacerun: yes;"> </span>She
tells me that it will take about a month to get in for an EMG and another 3
months to have some cognitive/memory testing done.<span style="mso-spacerun: yes;"> </span>So I make my appointments and leave.<span style="mso-spacerun: yes;"> </span>$200 dollars on daycare and 2 days wasted on
seeing absolutely no one to get no help for my current situation….all I want to
do is go home and drown myself in the sink because that seems to be the most
logical and reasonable thing to do after what I have just had to endure with
our completely useless health care system.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com0tag:blogger.com,1999:blog-6348084712440863641.post-15206716216942528542013-01-08T20:12:00.001-08:002013-01-08T20:12:57.044-08:00I would love to tell you about my Therapy appointment...but I don't remember it.
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Lyme brain is a scary thing.<span style="mso-spacerun: yes;">
</span>It is like living the movie Momento.<span style="mso-spacerun: yes;">
</span>Who even knows how many times I have made this reference in my blog
because I have no short term memory.<span style="mso-spacerun: yes;"> </span>So
my husband and I went to see the therapist, who I had some reservations about,
and she actually wasn’t that bad.<span style="mso-spacerun: yes;"> </span>At
least that is what I told my husband because I remember nothing about going to
see her, or what we talked about.<span style="mso-spacerun: yes;"> </span>I
called my husband to ask him when we were going to see her and he said, “We
already say her on the 3rd, don’t you remember?”<span style="mso-spacerun: yes;"> </span>No, I didn’t.<span style="mso-spacerun: yes;">
</span>I don’t.<span style="mso-spacerun: yes;"> </span>I don’t even know how to
describe how absolutely terrifying that is to not remember things…and not just
details, I mean ENTIRE events.<span style="mso-spacerun: yes;"> </span>I have
noticed throughout treatment that my blackouts wax and wane.<span style="mso-spacerun: yes;"> </span>More than scary it is really
frustrating.<span style="mso-spacerun: yes;"> </span>I don’t remember phone calls
or get-togethers with friends or family, I don’t remember entire conversations
that were important.<span style="mso-spacerun: yes;"> </span>When you tell
people you don’t have any short term memory, after a lifetime of knowing them,
they completely don’t understand what you mean.<span style="mso-spacerun: yes;">
</span>To give a reference, it would be this: In my youth I used to be able to
knock back quite a few alcoholic beverages – I guess you could say I was a bit
of a binge drinker – and have black-outs, not remembering a lot of the evening,
what I said or did, or how I embarrassed myself, etc.<span style="mso-spacerun: yes;"> </span>Having Lyme brain is a lot like that only I
get to escape the embarrassment of how I might have made an ass out of
myself.<span style="mso-spacerun: yes;"> </span>Anyway, this is a short post
because I only got 3 hours of sleep last night and husband is not having an
easy time trying to get the kids down for the night.</span></div>
Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com0tag:blogger.com,1999:blog-6348084712440863641.post-63511353166873486952013-01-03T05:34:00.000-08:002013-01-03T05:34:25.851-08:00Anyone up for a cup of morning couples counseling?My husband and I have our first date since...well, I don't even knew when. Maybe his birthday last September? Unfortunately it isn't the good kind of birthday date, unless you are the type of person who LOVES seeing your shrink, counselor, head guy, whatever. I don't mind it actually, but I am not a morning person, and this is our first session with our couples counselor so I don't want to give her a bad impression of me, right off the bat, as the one who has issues to fix more so than her spouse. I want my husband to be the one that looks like he needs a huge mental makeover. I actually love almost everything about my husband....except for our communication differences, oh, and his inability to actually plan things in advance. Other than that, if he changed any of the other things, that I find mildly to super annoying, there would be nothing left to give him shit about when I am feeling wily.<br />
<br />
At least my parents were nice enough to keep our kiddos overnight so we could do this at the crack of dawn. Our therapist may have had a morning divorce already on her hands if we hadn't shucked the kids off to Grandmatown. A) My 4yr old is not a morning person either and isn't shy about letting you know that, B) my kids take FOOOOOOOREVER to do anything that doesn't involve honey on it (or in it), C) They can smell it when we are a crack away from falling completely apart and that is when they like to push us over the edge, like by peeing on the floor or something else time consuming. My poor neighbors probably are going to be really happy to know that we are finally going to see someone. I was sure they were going to give us a gift certificate for a buy 1 get 1 free Couples Therapy coupon card for Christmas this year. <br />
<br />
Anyway, my husband and I are staying out of each other's way until we have to get in the car so that our therapist doesn't get the wrong, albeit, correct opinion about how are marriage runs....our marriage is not a morning person either. I already hate to give up the only hour that is not 3am-6am (when I can't sleep) that is all mine, with no kids, researching crap on the Internet and having my cup of delicious coffee - no matter that it is a reheat from yesterday. <br />
<br />
My husband actually did the task of finding us a counselor. My husband is a very capable man in so many, many ways but this is not one of them. He has a lot lower standards than I do when it comes to someones competence of being a therapist/psychoanalyst, etc. He interviewed the person we will be seeing today and then she insisted on having a pre-session chat with me. This rang little alarm bells in my head but I did it anyway. She sounded like she was practicing her therapy techniques on me while we were talking, and that annoyed the hell out of me. Both my husband and I were psychology majors, ironically, and there is nothing worse than knowing what kinds of therapy tools they are using on you. I like my therapists to be confident in their practitioner ability to listen and reflect what they heard in a way that you can't tell they are doing it. I also like them to really listen to what we are saying and offer a unbiased viewpoint on what they think we could do instead of what we are doing. I also don't like a lot of constant 'affirmation'. Crap...I am getting myself all crabby and worked up before we go. Well...wish us luck as we may need be needing a different therapist immediately.<br />
<br />
Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com0tag:blogger.com,1999:blog-6348084712440863641.post-89706043034651087472013-01-02T12:28:00.004-08:002013-01-02T12:28:58.505-08:00To Cut Myself Off From Toxic Family - Trimming the Family Fat
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">So, as I posted earlier - or maybe I didn’t because
I have no short term memory and am too lazy to go back and read what I have already
posted – I cut myself off from my mom’s side of the family this winter.<span style="mso-spacerun: yes;"> </span>I went to Thanksgiving, because it was at my
mom’s and only one aunt came, but won’t be joining my extended family for
family celebrations anymore, period! <o:p></o:p></span></div>
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">A lot of us who are traveling the muddy streets of
our Lyme trek come across friends and family that range from silence (ignoring that
there is anything wrong) and disbelief (of Lyme) to being downright nasty and
rude about it.<span style="mso-spacerun: yes;"> </span>It seems like the majority
of family are in this negative spectrum which surprises me.<span style="mso-spacerun: yes;"> </span>I guess I could see a few nay sayers, in my
family, but the majority??!!??.<span style="mso-spacerun: yes;"> </span>The
thing that boggles my mind the most is that my family has purposely turned their
back on me (on us) when they know we need love and support the most.<span style="mso-spacerun: yes;"> </span>They are, for some cosmic reason actually viscerally
ANGRY at me for saying that I have Lyme and that I gave it to my 2 little
girls.<span style="mso-spacerun: yes;"> </span>It makes no sense at all.<span style="mso-spacerun: yes;"> </span>Initially my parents were in this camp, that
they didn’t believe me, and they just didn’t want it to be true…especially when
it came to their grandbabies.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">I think I also need to explain a little of my background
so it makes sense why my family has done this.<span style="mso-spacerun: yes;">
</span>I have always been the proverbial black sheep of my family.<span style="mso-spacerun: yes;"> </span>I was born out of wedlock, had an
alcohol/addict father who didn’t pay any child support so my mom was on welfare
until I was about 6yrs old.<span style="mso-spacerun: yes;"> </span>She met my
step dad when I was 4 and we moved it with him shortly after and he cared for
me like I was his own.<span style="mso-spacerun: yes;"> </span>I had Lyme since
I was a little kid, there is a possibility I was born with it too.<span style="mso-spacerun: yes;"> </span>I had a lot of health issues my whole
life.<span style="mso-spacerun: yes;"> </span>In my teen years I had extreme
anxiety and depression rear its ugly head.<span style="mso-spacerun: yes;">
</span>I felt out of control, my relationship with my parents was terrible and
out of control too.<span style="mso-spacerun: yes;"> </span>I started using
alcohol and drugs at 13/14 and it was a major part of my life until my early
twenties.<span style="mso-spacerun: yes;"> </span>I hated myself, my life and
was as self-destructive as I knew how to be.<span style="mso-spacerun: yes;">
</span>At some point I got sick of trying to kill myself through drugs and
alcohol so, in my mid- twenties, I cleaned up my act and tried to resume a normal,
productive life.<span style="mso-spacerun: yes;"> </span>I met my 1<sup>st</sup>
husband in my late twenties and got married.<span style="mso-spacerun: yes;">
</span>He was not a bad guy but we were very ill suited for each other and ended
up getting divorced a couple years later.<span style="mso-spacerun: yes;">
</span>I met my current husband when I was 33, got married at 35 and had two
beautiful girls.<span style="mso-spacerun: yes;"> </span>So, because I have a
checkered past, a lot of my family still sees me as the person they always
expected me to be; a failure, a drug addict, a liar, and basically a horrible
and bad human being all around. <span style="mso-spacerun: yes;"> </span>However on
my path of self-destruction I never did anything to directly hurt my extended family
(outside of the mental anguish I caused my parents) so it confuses me why they
still judge me as the person I was 20 years ago.<span style="mso-spacerun: yes;"> </span>Oddly, the problems with my family didn’t
start when we found out we had Lyme & Co in July, they started when we
found out my 4 yr old had extensive food allergies that could kill her I had to
ask some concessions for her safety at family gatherings.<span style="mso-spacerun: yes;"> </span>For example, I asked that there not be bowls
of loose nuts out, and I asked if we could make simple mashed potatoes so that
she could eat what everyone else was eating and feel part of the family.<span style="mso-spacerun: yes;"> </span>There is nothing more painful than watching
your toddler get repeatedly left out of things because she cannot eat any of
the food at parties or family gatherings.<span style="mso-spacerun: yes;">
</span>Anyway, because of this I pissed off a lot of people.<span style="mso-spacerun: yes;"> </span>To quote my Aunt, I “have no right to demand
that anyone go out of their way to make food that J can eat.”<span style="mso-spacerun: yes;"> </span>I know that my family thinks very little of
me.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">My mom recently had breakfast with two of my aunts after
the Christmas gathering, that I refused to go to, and they told her that I
couldn’t be trusted because I was a liar, and a drug addict.<span style="mso-spacerun: yes;"> </span>A liar because I proclaim to have Lyme and
that my kids have Lyme.<span style="mso-spacerun: yes;"> </span>A drug addict
because I am reliant on pain medication to function and take care of my
kids.<span style="mso-spacerun: yes;"> </span>They also said I am rude and
demanding.<span style="mso-spacerun: yes;"> </span>Rude and demanding because I
asked my cousin, who was hosting Thanksgiving, about the ingredients in the
turkey brine and mashed potatoes in hopes that my daughter, J, could partake in
eating with the rest of us. – My cousin told her mother, my Aunt, that I had
demanded she make special dishes for my daughter which I didn’t, and because I
am a liar/drug addict/abuser mother the rest of the family believes her side of
the story.<span style="mso-spacerun: yes;"> </span>My Aunts also insinuated, if
now outright said, that I am a negligent and abusive mother.<span style="mso-spacerun: yes;"> </span>Abusive because I am hurting my kids by
giving them long term antibiotics to treat an illness I am making up, and negligent
because I would wantonly risk my daughter having an anaphylactic reaction
because I would stupidly trust someone else to make food for her.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>One of
my Aunts’ even said, “I don’t give a shit about Kara, I only care about those
little girls of hers”.<span style="mso-spacerun: yes;"> </span>Funny because, if
she cared about my kids, she would care about helping to make them safe during
family gatherings by not having nuts out, etc.<span style="mso-spacerun: yes;">
</span>If she cared about my kids she would care that my daughter’s feelings
are constantly being hurt because she feels left out of what everyone else is
able to participate in and that is FOOD.<span style="mso-spacerun: yes;">
</span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">My mother was so upset about her own sister’s
bashing her daughter and showing absolutely no compassion for her daughter and
granddaughters that she actually broke out in hives that look like
shingles.<span style="mso-spacerun: yes;"> </span>They have always treated my
mom like crap, which I also don’t understand, and have made her feel unworthy and
like a joke her whole life.<span style="mso-spacerun: yes;"> </span>My mom does
not know how to stand up to her emotional bully sisters and therefore does not
do a lot to stand up for me.<span style="mso-spacerun: yes;"> </span>I feel bad
that she is being caught in the middle but I think their conduct at breakfast
was a real wake up call for her.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">Here is the email I sent to my Aunt before
Christmas.<span style="mso-spacerun: yes;"> </span>It is badly written because I
was so upset.<span style="mso-spacerun: yes;"> </span>I wish I was better at
letting all this crap slide off my back but it tends to consume me sometimes, a
lot of the time.<span style="mso-spacerun: yes;"> </span>Anyway here is the
email and I wish I would have edited it before sending so it sounded more
congruent.<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">****y,<o:p></o:p></span></div>
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">If you were that hurt about me not
coming you would have called and discussed it with me. You and (my cousin) have
told my mom and me on at least 2 occasions that you didn't like us and didn't
want to be around us. My mom remembers this pretty clearly too. Talk about
hurt. But we moved on and tried to keep that behind us and moved forward as a
family. We have been there time and again when you and (my cousin) needed
support. <o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">The fact that you are more concerned
with being 'hurt' that I am not coming, without even hearing me out about why I
have made this decision, just proves that you would rather be right than
actually have a working, loving family relationship with me or my kids. You
have all these judgments and disapproval about what I am doing, yet you have not
once called me to talk to me about it, nor have you even showed any interest in
what my family is going through. I don't want to spend time, or expose my kids,
to a family that would rather bash me behind my back than care enough to speak
directly to me about their concerns. And by speaking your concerns I do not
mean what (my cousin) said during our phone call, that I probably have
something other than Lyme. I am tired of fighting against all this negativity
and disbelief. It is too hard, too painful and it is tearing me apart. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">People DO have every right to talk
about me behind my back, have their own opinions, etc. However, I have every
right to respond to those often thoughtless remarks, made by people who have
done NO research on Lyme, nor have bothered to even talk to me about it, when I
hear from the grapevine what is being said. It is hard on my mom too, to feel
caught in the middle, and if you knew how hurtful and upsetting this has been
to her you all would stop it. But, many people in this family are far more
concerned with being 'right' than concerned about how this affects my mom’s
heart. She is so afraid of being cut off the family if she stands up for me
that it is tearing her apart and causing conflict in our relationship too. I
don't think you all care one iota about the damage you cause when you back stab
me to my mom rather than talk to me. It is apparent that you all care more
about hammering your poisonous judgments into my mom's ear rather than having a
two way, open minded conversation with her. If you truly cared at all about
her, or my family, you would find a way to give loving support and withhold
your stinging judgments. If you care more about proving your point then all you
are achieving is losing us as family. My mom does not make decisions about how
we have chosen to treat our Lyme disease and all this negativity she hears only
makes her feel more helpless and more torn apart. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">You have no idea what is happening
to my family, to me, to my kids - you made that glaringly apparent the last
several times we have been together. Whenever I try to talk to our family about
what is going on they also just act disinterested and uncomfortable.
Unfortunately our lives are consumed with this horrible illness and it is what
it is right now. We need people's support more than ever and all we have is
family that has pulled away. The only family that has reached out to us is the
W*******, the rest of you just want to believe I am crazy and want no part of
it. It is funny that the only loving support I have gotten so far is from them.
If you want to stay stuck in your own self righteousness then I want no part of
it, no part of a one-sided relationship with you and others in our family that
have chosen to ignore what our family is going through. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">Keep feeling hurt if you want to but
I can guarantee you it does not come close to the hurt I have from how little
this family has reached out or supported my family during this really scary and
really hard time. My duty as a mother is to protect my family from people who
do not have their best interests at heart, and that is what I am doing by
cutting myself off from that kind of family until it changes. <o:p></o:p></span></div>
Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com0tag:blogger.com,1999:blog-6348084712440863641.post-55934913982907236332013-01-02T07:40:00.000-08:002013-01-02T07:40:07.431-08:00Boring symptom gripe and my current med list/issues
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">I was back on my abx but had to stop again because
of my arms and legs going numb and I am having some neuro weirdness.<span style="mso-spacerun: yes;"> </span>I am on so many medications besides my abx
that I can’t tell anymore what is a true herx, or just plain side effects to
med combinations.<span style="mso-spacerun: yes;"> </span>I probably would not
stop my abx if I was still able to sleep but the numbness in my arms is horrifically
painful and that, with the insomnia from herxing, keeps me from sleeping more
than a few hours during the night and then I am in really rough shape then next
day.<span style="mso-spacerun: yes;"> </span>Mornings after I don’t sleep I wake
up in all over pain, some from the nightly withdrawal from my pain meds, and
the rest from lovely Lymie joint and muscle pain.<span style="mso-spacerun: yes;"> </span>My husband usually gets our kids set up with
breakfast before he leaves for work while I sit and wait for the pain meds to
kick in so I can move my body and function like a relatively normal person.<span style="mso-spacerun: yes;"> </span>I know I have said this a thousand times but
I will say it again, losing my independence is probably one of the hardest
things about this illness.<span style="mso-spacerun: yes;"> </span>Having to rely
on someone else to do simple tasks, do everything for you sometimes, is a real
bitch.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">I am supposed to be starting Mepron next week to
treat the Babesia but I need to be stable on the abx I take now and that isn’t
happening.<span style="mso-spacerun: yes;"> </span>I have already had to stop
for a couple weeks because my liver enzymes were elevated, and then for another
2 weeks because of the numbness in my body.<span style="mso-spacerun: yes;">
</span>If you have never experienced your limbs going numb it is a horrible
feeling.<span style="mso-spacerun: yes;"> </span>Not only are they numb, but the
pain from not having any circulation is unreal.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">My current abx protocol is Ceftin, Clarithromycin –
to lower general Lyme load, the Ceftin also targets Bartonella so I will
frequently get the weird cat scratches on my chest and back, or get little chigger
bite looking things on my stomach and neck.<span style="mso-spacerun: yes;">
</span>I take Nystatin & Diflucan for yeast.<span style="mso-spacerun: yes;"> </span>For supplements I take 500mg of Magnesium,
250mg of Zinc, 3 tbsp of fish oil, 50-200 billion probiotics, & vitamin C.<span style="mso-spacerun: yes;"> </span>I take Hydroxyzine (or 1mg of Melatonin) –
25mg 1-4 tabs at bedtime for sleep, Cycolobenzepr (Flexeril) 10mg 1-2x day for
back spasms, Lorazepam- .5mg 3x day for anxiety or to help me sleep, Methadone -5mg
3xday for pain, Metoclopramide for nausea from my abx or from the migraines,
fleet enemas for constipation (I got my coffee enema kit in the mail but I am
still working up the nerve to use it).<span style="mso-spacerun: yes;"> </span>Trying
to remember to take any or all of this has been a real struggle.<span style="mso-spacerun: yes;"> </span>I even forget to eat some days: I have a
terrible taste in my mouth all the time and no appetite.<span style="mso-spacerun: yes;"> </span>If I get hungry it is usually late at night
or in the middle of the night and I crave sugar (mainly chocolate) and carbs.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com0tag:blogger.com,1999:blog-6348084712440863641.post-12510572784120767862012-12-29T17:38:00.001-08:002012-12-29T17:38:47.437-08:00The guide to driving your friends and family away.I have been told that my facebook posts about the realities of living and breathing Chronic and Congenital Lyme Disease are a bit "off-putting" to some (all) because I sound so angry in my posts. I have been told that people get "tired" of always hearing me gripe about how hard and miserable things are. I have been told that maybe I "don't need to share so much detail" about what Lyme is doing to my family because it is "upsetting" to people and they "don't know how to respond or how to help me". <br />
<br />
Yes, the ugly truths about people's hardships are hard to hear, they are unpalatable, they do make you feel helpless....but that doesn't mean that they shouldn't be allowed, nay encouraged, to tell their stories, right? Maybe if I sugar coated the horror of what happening in our lives then it would be acceptable table talk about out loud? <br />
<br />
I am conscious of not dominating conversations with the negativity and trials and tribulations of our current situation. In fact I get sick of talking about it, thinking about it, breathing it night and day, being tormented in my sleep by it, living it, watching my children live it, watching my husband get more and more exhausted trying to hold us all together and function like a normal human being out in the real world too. I do make a point when talking to other people to focus on them and theirs and what awesome or mundane things they are doing in their lives. Yes, it is so nice when someone calls me to ask how we are doing....I can probably count on my one had the times this has happened. I feel I would be doing a disservice to my children if I didn't use my voice to call for help for them, for me, for our family. <br />
<br />
It is a lonely existance, living with a chronic illness. I try to put myself in other people's shoes and try to imagine how I would be dealing with someone in my situation, and I can say I honestly don't know. I know it is selfish to expect people to be thinking about us all the time, but what I don't get is how a lot of our own family will not even ask us how we are doing when they see us. It is as if this nightmare is not even happening. It makes me crazy and angry and resentful. Sometimes I feel so abandoned by the world and wonder why I even keep trying. I used to be a fun person, or at least not as irritating as I feel like I am now. I hate the person I am now...I am a shell, a rotting husk stinking of desperation and fear. <br />
<br />
<br />
<br />Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com0tag:blogger.com,1999:blog-6348084712440863641.post-65752019456539857042012-12-29T08:51:00.001-08:002012-12-29T17:31:11.753-08:00What Congenital Lyme Looks Like Part2 - My 2yr oldSo by the time I got pregnant with my 2nd (they are 23 months apart) I was convinced I was completely insane and I was not coming back. I still did not know I had Lyme at this point. I was so very sick, and every doctor I went to gave me a new diagnosis and/or kept telling me it was all in my head and referring me back to a psych doc. There were a lot of people, including me, who were appalled that I would get pregnant again in the state I was in - one aunt even told me to abort my 2nd child. However, my daughter, 'A' honestly could have been an immaculate conception, that is how often my husband and I were even intimate...ONCE since the birth of my 1st child, and I got pregnant! Even so, I was happy that we were going to have another child. Being an only child I did not want that for my daughter but, after 'J's horror of a delivery, and the issues that ensued, I really didn't think I could bring myself to have another child so I am so blessed that it happened. Ironically, as the pregnancy hormones surged, I started to feel better (even though I was pregnancy sick as a dog) and all of my psychiatric symptoms just melted away. I even had some energy for the first time in 2 years. She was due December 1st but I went into early labor on Halloween. Luckily they were able to stop the labor and she ended up going a week past her due date. I had back labor pains with both my kids, and again was in labor about 26 hours with failure to progress. This time I knew better and wouldn't let them give me Pitosin and eventually I elected to have a C-section before either the baby or I got too stressed from the prolonged labor. I was TERRIFIED to have another C-section, after having one with no anesthetic, but they got the epidural in right and everything went a lot better the second time around. She was a fussy baby that didn't sleep much and when she was unhappy she would rage like no baby I had ever seen. People would comment on how loud she could cry. Other than the rages and reflux and bad sleep she was a happy baby in comparison to my 1st. Since I was doing so well mentally, after her birth, I was not on any psychiatric meds and was able to breast feed her for 16 months until I found out I had Lyme and was infecting her with my breast milk. She did not want to stop nursing and it was really hard on both of us; I am still crazy sad that I had to stop.<br />
<br />
To date her symptoms have been and are: <br />
<span style="color: blue;"><b style="mso-bidi-font-weight: normal;">Reflux</b><strong>/GERD</strong></span> (since we had no luck with any of the reflux meds with my 4yr old we didn't even bother getting her tested or give her any reflux meds. She was worse when I had dairy so I stopped dairy while breastfeeding and it got much better), <strong><span style="color: blue;">labial fusion</span></strong> (at about 6 months her labia fused together over her urethral opening and we had to use progesterone cream to open it back up. I have a suspicion that it was from the irritation of baby wipes, that we were trialing from Costco, and it paired with the systemic inflammation from the Lyme), <strong><span style="background-color: white; color: blue;">chronic yeast infections</span></strong> (she has had problems with yeast since she was a newborn, and we have to use clotramizole a lot on her vagina to keep it at bay), bouts of <strong><span style="color: blue;">frequent and painful urination</span></strong> (she will grab at her vagina and say 'owie', and each time this happens we get her tested for UTIs but it always comes back negative),<span style="color: blue;"> <b style="mso-bidi-font-weight: normal;">food allergies</b></span> (to dairy, nuts & wheat; she could have more food allergies but we are on such a strict diet for J that A doesn't get exposed to a lot of foods so we don't know - luckily she did not have the eczema that my 1st had from her food allergies), <strong><span style="color: blue;">chronic constipation</span></strong> (we give her daily prune juice and try to push fluids but it only helps minimally), <strong><span style="color: blue;">rages</span></strong>, (I am not sure I could even describe the intensity she had when she was upset - even as a tiny baby - but it wasn't normal), <strong> <span style="color: blue;">itchy ears/drainage</span></strong>, (luckily she has had only one bad ear infection but her ears bother her often and every time I bring her in they are fine), <strong><span style="color: blue;">sound and light sensitivity</span> </strong>(cannot tolerate loud sounds or bright light, she will shield her eyes in sunlight and say, 'hot, hot'), <strong><span style="color: blue;">nightmares/night terrors</span></strong> (which caused her to wake a lot in the night crying, since starting abx they seem to have diminished), <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">night sweats</span></b> (general temperature irregularity - both my kids can sleep in a t-shirt with a fan on them all night with no blankets), <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">stomach aches</span></b> (some from
the constipation and some from the abx),
<b style="mso-bidi-font-weight: normal;"> <span style="color: blue;">insomnia/frequent night waking</span></b> (as a baby she never slept more than 2-4 hours until she was about 18 months and still comes into our bed every night, both of my girls do. I know it is a big parent no-no but they need all the comfort they can get so we don't force them back into their own bed), <strong><span lang="EN" style="mso-ansi-language: EN;"><span style="color: blue;">sensory processing disorder</span>
</span></strong><strong><span lang="EN" style="font-weight: normal; mso-ansi-language: EN; mso-bidi-font-weight: bold;">(can’t tolerate food if it has more than one texture, A doesn't seem to have the same level of hypersensitivity that my 4yr old, J, does, I can actually rub her back and touch her skin without her feeling any physical discomfort; not being able to touch my 1st baby (J) was really hard for me so I was over the moon to be able to lavish physical affection on my 2nd because she could tolerate it)</span></strong>, <b style="mso-bidi-font-weight: normal;"><span style="mso-spacerun: yes;"> <span style="color: blue;">recurrent bouts of high fevers</span></span></b> (since a few months old she would get these prolonged fevers, about 102-103, out of the blue, that would last 5-7 days without any other symptom. One time she developed a Petichial rash during a bout of fever and, fearing meningitis, we brought her to the ER for a CBC but it came back as a viral infection, not bacterial. The high bouts of fever have stopped since starting abx), <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">plugged sinuses</span></b> (she is always stuffy at night when sleeping, I use a lot of Vicks to keep her sinuses open, so she can sleep better, and we have a cold air humidifier in their room which also helps), mild <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Hypotonia</span></b> (as a baby she was a lot stronger than J - she was as sturdy as a mountain goat - but around 18 months had some episodes of leg weakness and falling, just like J, but it seems to have gotten better since starting the abx), bad <strong><span style="color: blue;">separation anxiety</span></strong> (the odd thing about this is that, she not only freaks out when my husband or I leave the room, or leave her in the care of someone else, but freaks out big time if ANYONE leaves the room - even a pet - or leaves our house after visiting. She gets very upset and lays down on the floor and sobs - it is really heart breaking), <strong><span style="color: blue;">general anxiety</span></strong> (she has a lot of fears of different things, some common like the vacuum and toys that move by themselves, but if she gets afraid of something, and/or has a bad memory about something that happened, she will obsesses on it daily for weeks to months ,and will get visibly upset as if it just happened, <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">low grade fevers</span> </b>(99.1-99.5 since starting the abx. Every time I think she has a fever, or she is really flushed, her temp is always really low), <strong><span style="color: blue;">OCD issues</span></strong> (examples: she would pull out a hair every time I changed her diaper, a need to wash her hands a lot, needing her blankets just so, and even, across her back and folded over her arms just so or she will freak out for as long as it takes to get it just right. She gets fixated on things - like needing a specific toy or baby doll and will be agitated and will not stop until she gets what she wants/needs - it is more intense than normal toddler gimmes, <strong><span style="color: blue;">migrating body pain and headaches</span></strong> (she has been complaining of arm and leg pain since she first learned to talk and could say 'owie', we thought that they may be growing pains but our pediatrician said that growing pains don't start until the age of 6. Since finally getting her on an abx regiment, that she can tolerate, she doesn't complain of pain unless having a herxy flare up), extremely <strong><span style="color: blue;">sensitive scalp</span></strong> (she will cry in pain whenever we have to comb/brush her hair).<br />
<br />
There are some I am missing but will update when I remember them- I love having a Lyme brain!<br />
<br />
1/2 of these symptoms she has had since birth and the other 1/2 she developed what seemed to be overnight. Even with all these symptoms she seems to be a pretty happy kid, and if she had been my 1st child I would not have suspected anything was really 'wrong', and chalked it all up to normal, weird, childhood issues. She is the only one of us that is CDC positive for Lyme, and I suspect that she has a higher Lyme load than 'J' because I breastfed her longer (only 4 months with J) and she was getting the bacteria from my breast milk. 'A' has Lyme, Bartonella & Babesia. I am worried about PANS/PANDAS with her, and I guess with my other daughter as well, but there is a part of me that doesn't even want to know because it is all so overwhelming already. <br />
<br />
Currently her antibiotic and supplement regiment is: <br />
<b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Nystatin</span></b> (for yeast) – 4ml 4x day, we
had a really hard time getting her up to a full dose because it caused her to have multiple, massive whitish colored poops and her but was so raw after awhile. It also seemed to cause her to have an upset stomach. We had to stop and start several times and eventually go really, really slow in increasing the dose.<span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Clarithromycin</span></b> – ½ tsp 2xday, <strong><span style="color: blue;">Amoxicillin</span>-</strong>5ml 3x day. She was on Ceftin – ½ tsp 2x day but could not tolerate it. We tried to do it twice and after only a day or two I had to stop because she had such bad mental aggitation (upset and crying constantly) and inability to sleep from the bad bowel upset, <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Cod liver oil</span> </b>- 1 tbsp 1x day (Nordic
Naturals Omega-3 brand), <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Multi-vitamin</span></b> (Animal Parade Gold
brand), <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Vitamin C</span></b> (Co-op brand
crystal powder C so it goes right into the blood stream and is more effective
than the chewables. It is a bit tart so I mix it with honey and apple juice), <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Probiotics</span></b> – 20billion 2x day (DDS
Probioplus brand, we give it to her ½ hour before breakfast and at bedtime on an
empty stomach and my kids don’t mind chewing the capsules up as they can’t
swallow them yet).<br />
<br />
Detox: Epsom salt baths. I am going to start giving my kids more lemon juice, and figuring out a way to get them to ingest the milk thistle or dandilion tea. After the 5th of January we are going to cut out all gluten and as much processed sugar as possible. Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com0tag:blogger.com,1999:blog-6348084712440863641.post-32107591631824383842012-12-27T19:24:00.001-08:002012-12-27T19:24:31.958-08:00Rant and purge, rant and purge
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Relived that everything is finally settling down from my
Christmas crash – I was so hoping to have normal as possible Christmas with John
and the girls and it just wasn’t to be. <span style="mso-spacerun: yes;"> </span>I won't lie people, things have been severely
rough lately and there are times when I just don't think I can make it through
this. We are barely into treatment and it is going to get even rougher than it
has been. Being sick for 5 years solid has already worn out its welcome. I am
in the process of applying for SSDI because we are financially f***ed from all
the medical bills from the last 4 years, and now in order to get treatment for
our Lyme disease we have to see a doctor that is practicing off the radar and
can’t take insurance or she will lose her license. <span style="mso-spacerun: yes;"> </span>I am tired of being scared and feeling like
crap. I am tired of seeing my kids suffer....most people wouldn't think there
is anything wrong with us, but they don't see us during the bad times, nor do
people see the day-to-day struggles that my kids or I are having. I know there
are millions of people who have it worse than we do, but this is my life and I
have to live it.<span style="mso-spacerun: yes;"> </span>I think the very worst
part is seeing my kids have it rough and being too sick to do a whole lot about
it. It is a waking, walking nightmare a lot of the time. There are many days
that I feel like everyone has forgotten us. I know, in reality, that people
haven't, and everyone has their own share of troubles and their own crazy lives
they are trying to live, but this chronic illness crap is a really lonely existence.
I am so thankful for my squirrely, silly monkey girls or I don't think I would
laugh at all. Also, a serious thanks to Uncle Shin for babysitting me yet again
while John was at the hospital, where I should have been, and driving me to the
doctor this morning at an ungodly hour in an ungodly temperature. <span style="mso-spacerun: yes;"> </span>Also a special thanks to my husband who is
still sticking it out with me even though he probably needs a vacation from
this more than I do.</span></div>
Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com0tag:blogger.com,1999:blog-6348084712440863641.post-90887999962373811142012-12-27T17:02:00.002-08:002012-12-27T17:02:39.173-08:00I need a shit bat for all these shit balls, aka The big Christmas Crash of 2012Had a big crash on Christmas. I wanted to badly to make it to Christmas and have a normal Christmas morning with my husband and kids. I did not make it and I knew I was not going to make it 1/2 way through the Christmas Eve party at my Aunt's. I also wanted to be functioning because my 3 year old was going to be admitted to the hospital for a three day stint to monitor her for Benign Rolandic Epilepsy. I did not make that either. I showed up today like some crazy drunk mother with my neuro shakes and way-out-of-it five mile stare. The staff was visibly nervous, I was not acting normal....but I don't when I crash. My daughter had a seizure on the 7th of December. The only thing I could think of was the Trailer Park Boys line about needing a shit bat for all the shit balls heading his way. I feel like I am going to crack wide open and go running from my house in my socks and never come back. <br />
<br />
My sins; I screamed at my husband, I screamed at my kids, I ranted and raved up and down the house. I am sure my neighbors are certain they will one day have a domestic on their hands. I had to switch pain meds and no one warned me that I would tank on withdrawal from the one while having a bad reaction to the other. I hate my life right now. My kids are scared...which makes me feel worse than the worst person on the face of this earth. I warned my husband that I was going down and he failed to heed my warning; telling people we did not need help when we so desperately did, do need it, and NOW. My very best, best friend, and loyal herx sitter, spent the night, while my husband was at the hospital with our 3yr old, in order to get my new meds at 7am....it is way too cold in MN to be up and out of the house driving around in this kind of nasty cold weather. I had no sleep from med withdrawal the night before. I am so sick of being physically dependent on pain meds I want to cry. Luckily I have no issues with psychological dependency...funny how different recreational drugs are from the ones you really need to stop the agony that is burning your body alive. <br />
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I am feeling very lost and just fucking done with life. I can't keep up this pace and I rely completely on my pain meds in order to function. They do fuck-all for the pain but keep the fatigue from burying me alive. That is not true, actually, they do help some of the pain but at a pretty big price. I have gone cold turkey off of them several times just to get them out of my system and see what my body is doing without them and when I find out that I am still in as much agony as I thought I go back on and resume my life. I honestly don't know how people do it without. I have taken every non-narcotic, nerve pain available and they did nothing for me so I have resigned myself to the narcotic pain meds. I feel like crap. I am currently taking methadone. My LLNP told me that it works better than the percocet for nerve pain but I have to wait about 3 weeks before it kicks in. What I like about the methadone is that I don't feel the highs or lows that the percocet gives me. What I don't like about the methadone is that it gives me a low grade headache on top of the constant low grade headache I already have and it is aggravating. Percocet makes me extremely crabby but it gives me energy to take care of my little girls and it allows me to function fairly normally. The methadone makes me feel constantly spacy and edgy and it helps a bit with the fatigue but not so much with the pain. <br />
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Sorry for the BS ranting post. I am feeling like everyone has completely forgotten about us and does not give a damn. I want to cry and freak out but I have done enough of that these last two days and the damage has been done to my kids...I can't afford to damage them more. How do you all do this? I stopped my abx for a couple of weeks because I was losing all feeling in my arms and legs and was having to sleep propped up in a sitting position and no sleeping from the pain of no circulation in my arms. I wanted to make it through Christmas and through my kid's hospital stay but no dice. Soon I am going to start the Mepron to treat the babs and I am scared shitless. I can barely tolerate the Ceftin and Clarithromycin that I am on currently and I am so exhausted from the fight of this. Please god(ess) please help me, help my kids, help my family, help us, help us, help us. I am too tired to fight anymore today. I want a break so badly from this. It has been five long years and it makes me sick to my stomach to think that it will be another five years before this is over....if we are lucky. I feel like the weakest person in the world right now. I am scared I won't make it through this. I am scared I won't get my kids through this. My husband and I are going to see a therapist because the stress is cracking our marriage some. Luckily we have a strong relationship but we are not functioning like a married couple anymore and that just sucks. I finally met a man who is a great husband, father, friend, lover....and it all came to a screaching halt when I got sick. I want to run away and forget about all of this Lyme shit. I just want it to be spring already.<br />
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Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com0tag:blogger.com,1999:blog-6348084712440863641.post-59025633039970601572012-12-22T10:05:00.000-08:002012-12-29T17:27:07.900-08:00What Congentital Lyme looks like - My 3 year old's Symptoms and Treatment Protocol Part I. My four year old 'J' gave me the highest compliment a mother can get from
her child yesterday. She said, "You are the best Mommy that I ever
have", to which I replied, "Well that's good because I am the only
mother you have. She then said, "Yeah, because you are the only Mommy that
I ever remember coming out of ". I laughed super hard at that, which
confused her, but I also had a twinge of rue because, even though I was blessed
that I got to have my two children, I have also infected them with congenital
Lyme, Babesia & Bartonella and the hell that comes with all of that. <br />
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A little background on my 3 year old and my pregnancy with her: <br />
My 4yr old was full term plus a full agonizing week. I was really sick,
constant migraines, and in a lot of pain throughout my pregnancy with her. I
was also an anxious mess because I had lost two babies, back to back – the
second loss (13 weeks) happened the day before my husband and I got married,
which is a real sucky way to start out one’s marriage let me tell you – and had
insomnia through the roof: I would lay awake all night watching episodes of
“Emergency Deliveries” on the women’s channel and sobbing my eyes out.<span style="mso-spacerun: yes;"> </span>I had a grueling delivery with her that
lasted 36 hours and ended up in an emergency C-section because of a failure to
progress – I never dilated past 2-3 cm.<span style="mso-spacerun: yes;">
</span>The C-section was like a scene from a torture, horror film.<span style="mso-spacerun: yes;"> </span>They screwed up the epidural so I felt almost
everything as I had little to no anesthesia for more than ½ of the C-section or
the removal of the cyst on my remaining ovary.<span style="mso-spacerun: yes;">
</span>I also ended up with extensive nerve damage and a rotator cuff
impingement from them holding down my arms down while I my body jerked from the
horrific pain.<span style="mso-spacerun: yes;"> </span>‘J’ came into this world
screaming a scream of complete agony and distress that no newborn should know;
she was screaming before they even plucked her out from my womb.<span style="mso-spacerun: yes;"> </span>Her Apgar score was good and she was
considered a ‘healthy’, albeit miserable, baby.<span style="mso-spacerun: yes;">
</span>She cried constantly for the first 4 months of her life.<span style="mso-spacerun: yes;"> </span>She nursed okay and didn’t sleep more than
1-2 hours at a stretch for the first several months and never more than 4 hours
for the first 2 ½ years.<span style="mso-spacerun: yes;"> </span>I became
extremely depressed and anxious, developed severe post partum depression and
anxiety and PTSD, as a result of the birth, and needed to go on medication so I
stopped nursing her at 4 months.<span style="mso-spacerun: yes;"> </span><br />
<br />
To date her symptoms have been and are: <br />
<b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Severe eczema</span></b> (accompanied by bleeding
sores and pustules that would take days/weeks to heal, since we have eliminated
all the foods that we know she is allergic/sensitive too her skin has almost
completely cleared up and only flares if she accidentally touches or ingests
something she has issues with), <strong><span style="color: blue;">reflux/GERD</span></strong> (we eventually had a endoscopy/sigmoidscopy to rule out Celiac and biobsied some of the tissues which came back pretty normal with just some scarring in her esophagus from the reflux), extensive<b style="mso-bidi-font-weight: normal;">
<span style="color: blue;">food and environmental allergies</span></b> (she had an anaphylactic reaction to her
6month booster and she is allergic to over 40 foods, probably more, but we don’t
introduce anything new to her anymore, she also gets a sun rash, every spring, when she is first exposed to the sun after wintertime), <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">sugar
sensitivity</span></b> (if she has processed sugar she gets crazy hyper and the sugar
crash sends her into an emotional tailspin, pure apple juice can even make her
seem like she is drunk), constant<b style="mso-bidi-font-weight: normal;"> <span style="color: blue;">stomach
aches</span></b> (after eating & from chronic constipation – her stomach aches
have intensified since starting abx), <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">chronic
constipation</span></b> (we give her daily prune juice and try to push fluids but it
only helps minimally), recurrent<b style="mso-bidi-font-weight: normal;"> <span style="color: blue;">otitis
media, ear infections & itchy drainage</span></b> (we are on our 3<sup>rd</sup>
set of ear tubes and her ear infections have been better since having them put
in), <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">severe insomnia</span></b> (much worse
since starting abx and she is terrified to go to sleep because of her
nightmares), <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">nightmares/night terrors</span></b>
(since she was about 1yr), <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">night sweats</span></b>
(general temperature irregularity), <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">sound
and light sensitivity</span> </b>(cannot tolerate loud sounds or bright lights, light
intolerance has increased since starting abx), <strong><span lang="EN" style="mso-ansi-language: EN;"><span style="color: blue;">sensory processing disorder</span> </span></strong><strong><span lang="EN" style="font-weight: normal; mso-ansi-language: EN; mso-bidi-font-weight: bold;">(can’t tolerate food if it has more than one texture, clothes need to be
soft & she can’t tolerate having her skin touched because it is irritating
& painful to her)</span></strong>, <b style="mso-bidi-font-weight: normal;"><span style="mso-spacerun: yes;"> </span><span style="color: blue;">chronic general illness</span></b> (constant colds,
etc, although hard to tell because kids get sick a lot when they are young,
since starting abx she rarely gets sick), <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">sleep
apnea from enlarged tonsils and adenoids</span></b> (she was constantly stuffed up and we finally had them both removed
this year and it has helped tremedously with the sleep apnea, sinus congestion, and eye drainage), <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">gross motor delay</span></b> (she did not roll over, or sit up, or crawl but
did start walking, unsteadily, at a year), <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Hypotonia</span></b>
(she has leg weakness and episodes of severe falling whenever she would walk or
run – this has gotten a lot better since starting the abx), <strong><span style="color: blue;">blocked tear duct and constant eye drainage</span> </strong>
(her right eye was slightly shut from birth - possibly due to her being jammed in the birth canal for so long - and drained tears constantly and irritated her skin and eye, we eventually had Nasolacrimal Duct required surgery to open up the eye duct), extreme<b style="mso-bidi-font-weight: normal;"> <span style="color: blue;">emotional meltdowns</span></b> (she has constantly 'hurt feelings' and it takes a really, really long time for her to calm down when
she gets upset), overly <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">frustrated
easily</span></b> (she will even bite or hit herself when she can’t deal with what is upsetting
or frustrating her), <strong><span style="color: blue;">word finding difficulty</span></strong> (almost stutters trying to find the word she is trying to say and has gotten worse with tx), chronic<strong> <span style="color: blue;">anxiety</span></strong>
(she still uses a nuk, and masturbates a lot, at nap and bedtime to relieve her
anxiety, and so she is able to get to sleep – we try not to make a big deal
about it but it is concerning because she rubs herself to the point of being
raw and getting yeast infections and vaginal rashes.<span style="mso-spacerun: yes;"> </span>Our
pediatrician also agrees that it is a bit excessive but to just let her be if
it helps her relax), <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">low grade fevers</span> </b>(99.1-99.5),
<strong><span style="color: blue;">facial eye squint and shoulder shrugging tics</span></strong> (that developed around the same time as the leg weakness and got better with abx, she now only gets the tic when she has herxes or is stressed), odd <strong><span style="color: blue;">cough</span></strong> (that developed out of the blue but has gone away since starting abx), <strong><span style="color: blue;">chest pain</span></strong> (since starting abx she has been complaining of chest pain, heart always sounds good with check-ups), <strong><span style="color: blue;">migrating body and head pain</span></strong> (she has been complaining of body/head pains since starting abx), extremely <strong><span style="color: blue;">sensitive scalp</span></strong> (she will cry in pain whenever we have to comb/brush her hair), J had a visible <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">seizure</span></b> on
December 7th and the neurologist thinks she has Benign Rolandic epilepsy. Luckily we wont have to medicate her unless she has another siezure).<span style="mso-spacerun: yes;"> </span>There are probably more symptoms that I am forgetting so I will update as I remember them. At
any rate, this is a lot for one little kid to live with and it breaks my heart that she is in constant discomfort.<span style="mso-spacerun: yes;"> She has recently started to talk about death and blood a lot lately. Not sure where this is coming from and it is worrisome.</span><br />
<br />
Currently her antibiotic and supplement regiment is: <br />
<b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Nystatin</span></b> (for yeast) – 5ml 3x
day, we used to do 4ml 4xday but LLNP wants to see if the Nystatin before bed
was making her insomnia worse.<span style="mso-spacerun: yes;"> <span style="color: blue;"> </span></span><b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Clarithromycin</span></b> – ½ tsp 2xday, <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Ceftin</span></b> – ½ tsp 2x day, <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Cod liver oil</span> </b>- 1 tbsp 1x day (Nordic
Naturals Omega-3 brand), <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Multi-vitamin</span></b>
(Animal Parade Gold brand), <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Vitamin C</span></b>
(Co-op brand crystal powder C so it goes right into the blood stream and is
more effective than the chewables. It is a bit tart so I mix it with honey and
apple juice), <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Probiotics</span></b> – 20billion
2x day (DDS Probioplus brand, we give it to her ½ hour before breakfast and at
bedtime on an empty stomach and my kids don’t mind chewing the capsules up as
they can’t swallow them yet), <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Melatonin</span></b>
- .4mg at bedtime (I use ZarBees cough syrup because it has a very small amount
of melatonin in it, and because there is a risk that melatonin in doses of
1-3mg may <u>‘lower the seizure threshold and increase the risk of seizure,
particularly in children with neurologic disorders’</u>. Our LLNP originally prescribed
1mg of melatonin at bedtime for J, for the insomnia, but when she had a seizure
after 2 days of giving her melatonin and so we decreased the dose in case that
was what had been the cause of her seizure), Liquid <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Calcium with Magnesium</span></b> – 1 tbsp 1x day (Childlife brand).<br />
<br />
Upcoming changes in our protocol:<br />
Supplements: soon I am going to introduce and add <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Inflamma
Response</span></b> (Herb Pharm brand), and try to figure out how to get her to start
taking <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Milk Thistle</span> </b>(Eclectic
Institute fresh freeze-dried seed meal brand – I will probably try to break
open the capsules and put mix it with a tsp of honey to get her to eat it since
she can’t swallow the capsules and hates the taste).<span style="mso-spacerun: yes;"> </span><br />
<br />
ABX: we are going to stop the Clarithromycin and Ceftin and start targeting the
Babesia.<span style="mso-spacerun: yes;"> </span>Her new abx protocol will be; <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Azithromycin</span></b> – 1tsp 1x day and <b style="mso-bidi-font-weight: normal;"><span style="color: blue;">Mepron</span></b> – ½ tsp 2x day.<span style="mso-spacerun: yes;"> </span>We will start this in January, after her
birthday, because I want her to have a good time and not worry about her
herxing.<span style="mso-spacerun: yes;"> </span><br />
<br />
Upcoming changes in our diet: <br />
Since we are already so limited with foods because of my girls’ food
allergies we haven’t been gluten free, but we will start our gluten free diet in January after my daughter’s birthday.<span style="mso-spacerun: yes;"> </span>We will also be making a greater effort to eliminate
ALL processed sugar in our diets (we don't really do much now because of my daughter's sugar sensitivity) but will allow the kids to have sugar and gluten for special
occasions and family holidays.<span style="mso-spacerun: yes;"> </span><br />
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Detox: <br />
So far we have only been doing Epsom salt baths for detoxing. I would love to figure out more things I can do for my kids for detoxing. Just found some lavender Epsom salt and it is very nice smelling and the kids love it. Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com0tag:blogger.com,1999:blog-6348084712440863641.post-87213504782373072602012-11-16T03:16:00.001-08:002012-11-16T03:16:35.663-08:00My Lyme brain is a bi-polar playgroundThe hardest part, no...one of the MANY hardest parts of this illness is having a broken brain. A brain that I can no longer really control. A brain that is similar to a boyfriend who is planning on dumping you and slowly stops calling and showing up but still sends promising text messages letting you know that he needs space but still wants to be together. Encouraged for the umpteenth time you keep trying to make it work like it used to and say, 'hey brain', I have a really important thing coming up and you said you loved me and would be there when I needed you most, well...I need you'. So your brain/boyfriend says, of course I won't forget because I know how much it means to you, blah, blah, blah. And then there you are, waiting for your brain/boyfriend who never bothered to call and just didn't show up, again, leaving you looking like an ass and a flake in front of your friends and family once again. Why don't I have any friends anymore? Why does my family treat me like they haven't known and loved me my whole life?<br />
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I shouldn't really feel that surprised or hurt that most of my friends and family have pretty much just stopped communicating with (dare I say abandoned) me for the most part. I really only have myself to blame; I have been a walking, talking lunatic for the last 4 years. Ironically, I think people were a lot more interested in keeping in touch when they thought I was losing my mind - Lets be honest, there is a little voyeur in all of us, and what is more interesting than someone you know who has completely lost their shit after being relatively sane and normalish their whole lives? I definitely would find it interesting if the roles were reversed. I love crazy people who do abnormal shit. Maybe not the psychotic harmful, psycho serial killer kind - however we can't all be choosy about how we lose it - but those people who just finally throw it down and revolt against the grain. I personally do know people who used to be sane and then grew to have a serious mental illness. That isn't anything to laugh about, and not a fun road at all for anyone involved, and I know this because I had first hand experience with the process. Anyone that has had the pleasure of losing their minds will tell you it isn't 'interesting', it is the most fucking terrifying, bottom of the earth dropping out from under your feet, kind of terror. And it is also the loneliest thing in the world because you are too ashamed to tell anybody that you MAY HAVE LOST YOUR MIND. At first people kind of treat you like it was something you did on purpose, like you went out and got super drunk at the bar on a work night and lost your mind along with your house keys. What kind of irresponsible person loses their mind? I will say that lots of us do it, in many ways, and to many degrees. <br />
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Chronic Lyme Disease is unique in that most of the Medical community views it as a 'crazy's disease'. According to the CDC, and other influential health organizations, it is a SYNDROME', which means 'all in your head'. Those of us who have had the honor of being diagnosed as crazy before we found out we were really, really sick with Lyme Disease, it is a label that will haunt and hinder us throughout the entire time we try to get treated for Lyme Disease. Since becoming really ill after the birth of my first daughter I was immediately forced to see a Psychiatrist who immediately started throwing meds at me left and right, most of which didn't work and made me worse, some even suicidal. When I had exhausted over about 30 different psychotropic medications my Psychiatrist told me that I must be Bi-Polar if medications weren't working on me. As much as I respected this doctor's opinion I knew then that there was something else going on....dare I say, I started to wonder if I were really crazy at all. During your course of trying to find doctors to help you with Lyme Disease, I assure you that you will hear your fair share of completely moronic bullshit statements like that at every turn. Try not to take it to heart, ever. Know that, even though you have no clue what is wrong with you, these "professional" know even less. You need to trust in your own self and know you aren't 'crazy'....you are sick with a crazy disease that also affects your mind. <br />
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Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com0tag:blogger.com,1999:blog-6348084712440863641.post-69392479965696391112012-11-15T06:38:00.001-08:002012-11-15T06:38:25.690-08:00Baby not tolerating antibiotics = panicked mama.<div class="text_exposed_root text_exposed" id="id_50a4f6f25b3812d49981780">
<span class="userContent">Scared for baby A. Had to take her off the antibiotics immediately after just one dose of Ceftin, as it just tanked her system. What to do now? The scary thing is that it is still another month until we can see our LLMD again, and NO doctor in our area will be able to, or will help us. A has started falling, just like J (my 3yr old) did, and I am in a panic to get her started on treatment so she doesn't end up with permanent paralysis or whatever other devastation the Lymes has planed to do to her sweet little innocent body. It is all I can do to keep from sobbing because right I might just lose it and start screaming the screams that have been parked in queue in my throat for months. Plus I have close neighbors that already think I am batshit and well...I am trying to keep the peace with them, for my kids, and to keep my mind/heart from fracturing into a thousand pieces. However, if I felt that my screams would do any good I would gladly sacrifice my vocal chords to them right now. </span></div>
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<span class="userContent">It is so unfair - life isn't fair, I know, my mom told me this a thousand times when I was a kid - that the majority of the medical community won't treat something that is treatable, and that my kids -and tens of thousands of other kids - have to suffer and sacrifice their lives and futures. I don't even care that I have to suffer...I am just sick of being so helpless as my baby gets worse and there is nothing that I can do to help her. I am so fucking rageful of the complete inhumanity of it all. Torrents of rage at the CDC, the NHI, and all the other organizations in bed with big pharmaceutical companies (that drive profit before people) and will not allow doctors to treat people, who get this devastating illness by a simple tick bite, adequately and long enough with simple antibiotics (and alternative non-abx therapies/treatments) that could save people, my kids, from a lifetime of suffering and an eventual early death. </span></div>
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<span class="userContent">Why doesn't our President step in and end this needless gambling of lives nonsense....oh yeah, he gets campaign funding from Big Pharma so he wouldn't dare do anything to change these laws either. </span></div>
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<span class="userContent">Damn them to hell and shame on it all! I can't stand this helplessness. I am their mother for crying out loud; I am the one who is responsible for protecting them and I can't do that, I can't help my babies. F*** now I am crying and what a useless use of my energy. At least I am detoxing through the tears though. Thank god someone said that to me awhile back or I wouldn't have anything to laugh about. </span></div>
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<span class="userContent">I need some light, some kind of hope to cling to right now. Herxing non-stop, in a lot of pain myself and just feeling really, really beat down. God/Goddess/Supreme Universal Being(s) please help my family, help those that are suffering our same fate, find light and recovery and a newfound joy in being able to reclaim our lives and live again with renewed purpose to help others who will come after us and need our help. Help us! Please.... </span></div>
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Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com0tag:blogger.com,1999:blog-6348084712440863641.post-21945990641717654992012-11-14T07:55:00.001-08:002012-11-14T07:55:47.924-08:00Obsessing about Lyme on the Internet again<div class="text_exposed_root text_exposed" id="id_50a3a4c2df7eb1e82964853">
<span class="userContent">Up too early obsessing on the internet and trying to find other families, like mine, who have made it out of this waking nightmare and went into remission for good, but I am not finding a lot of hopeful stories out there. See my kids were already born with Chronic Lyme's disease; They have been baking in parasites since conception and chances of remission are harder, treatment on their tiny bodies is really, really long and harsh. Not treating them, though, is a death sentance...at best they would/could live the rest of their natural lives in excruciating pain and horrific fatigue. As much as I want to be positive and trust that it will all be okay in the end, it is really hard to stay positive when all you see is unreachable mountain tops and you don't have any climbing gear.</span></div>
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<span class="userContent">I will be the first to admit that I don't know my ass from my elbow when it comes to all things Lyme and Co. Since our diagnosis I have definitely learned a lot but it is still such a confusing and overwhelming time. I do see some positive changes in my 3yr old since starting treatment so I KNOW in my heart we are at least now pointed in the right direction: If only we could get the baby stabilized on her protocol and doing well too. I even see a tiny glimmer of change in my constant 24/7 headaches and multi-weekly migraines that I have had since the age of 9 or 10. It seems like the migraines, that can lay me out for hours to days have been a bit less frequent - even when I am off my pain meds. This is a good sign, right? </span></div>
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<span class="userContent">Just now my 3yr old is complaining of bad leg pain behind her knee and thigh and it is hard not to freak out. The worst part is that I barely can help myself and have NO idea how to help my children through this. It is a horrible predicament. I don't want to be just starting our treatment....I want us to already have a year under our belt and actually have some real hope with diminishing symptoms. Starting out treatment just brings new and excacerbated symptoms so it is really hard to see the light at the end of the tunnel. </span></div>
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<span class="userContent">There are times that I question our Lyme's diagnosis - even though I am absolutely positive that we have it, plus the co-infections Babesia and Bartonella. I can say for certain that I have Bartonella because I periodically will be covered in cat looking scratches that bleed and swell and take weeks to fade and then I will get more. Freaky, freaky things those Bart scratches. I will try to post a picture of my back but it may not work since I am fairly computer illiterate. </span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_ltgXCXZ4G_nhvR3d6r2koZEXWPMyNBFLNSijacZwggf1sz90NKMnn2TAISkS1_v-TyCjyx0DhFgqZhCkp0AJ_SjLXHvxPwp0u28MzEFufawAw6aA_FCF6xCwW2soUC4qIHLl-R01MMln/s1600/013.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_ltgXCXZ4G_nhvR3d6r2koZEXWPMyNBFLNSijacZwggf1sz90NKMnn2TAISkS1_v-TyCjyx0DhFgqZhCkp0AJ_SjLXHvxPwp0u28MzEFufawAw6aA_FCF6xCwW2soUC4qIHLl-R01MMln/s320/013.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bartonella aka Cat Scratch Fever</td></tr>
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<span class="userContent">Anyway, now I am losing my direction and need to get my kids outside (a daunting task as I am so fatigued and the pain is unreal) since it is so nice and we haven't been out of our living room for almost a week. </span></div>
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<span class="userContent">Prayers for all of us to get well and reclaim our lives once again....and soon!</span></div>
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Karahttp://www.blogger.com/profile/06690431677493834255noreply@blogger.com0