Fabulous remedy for Vaginal and anal yeast issues

My kiddos have horrible issues with yeast, especially since starting the abx and we are not yet GF. 

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.

Soak bum and bits for 20 minutes. 

This has helped my kiddos tremendously and takes all the red, rawness away instantly. 

I don't know what the hell I am doing.

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.

 

Ok - here goes rant:

 

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... 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

 

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....

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.

 

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.

 

 

My 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. 

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! 

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.

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. 

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.

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. 

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.    

My Doctors are in an Ego War - My Healthcare, The Casualty

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.

 

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. 

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. 

 

I waited a for a call back and two days later my PCP'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. 

 

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.

The Tales of a 1001 Drugs, aka More Whining about My Latest Lyme Herx

The 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? 

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.' 

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. 

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.

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.

My 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 worn 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. 

          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.  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.  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.  I developed strange and severe symptoms after each incident but we had no idea Lyme disease even existed.  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.  The severity and frequency of my migraines has cost me a lot of jobs in my life.  After a botched C-section with my 1st daughter (I had no anesthetic) I got really, really sick.  I got very depressed and anxious to the point of mania.  I was  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.  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.  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.  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.  We all found out we had Lyme in July of 2012.  My four year old daughter has been very sick since she was born.  She has had so much wrong with her that it would take a book to describe it all.  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 -  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!  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.  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.  My wily two year old seemed to be the healthiest of all of us initially.  She is the only one of the three that has been able to get a CDC positive for Lyme disease.  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  and then extremely low temperatures out of the blue, headaches and joint pain.  I don’t know if there is anything more horrible than your one year old holding their head or knee and screaming in pain.  As a mother I have had to watch my children suffer horribly and there is nothing I can do to help them.  You see we can’t get a doctor to help us because they all say that Chronic and Congenital Lyme disease does not exist.  We are forced to see a Lyme Literate practitioner in another state because she is the only person that will help us.  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.  We have spent over 30 thousand dollars since I got really ill four years ago.  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.  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.  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.  We are very lucky in that I have my parents close by to help, my husband and I, take care of our girls.  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.  We don’t go to the ER anymore, when this happens, and I will explain why later.  My husband has been an incredible support system through all of this.  He is single handedly keeping our ship from sinking.  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.  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.  Lyme disease is one of the only diseases that also comes with incredible political controversy.  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.  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.  The controversy is so prevalent that it affects all avenues of your medical/health care once you are diagnosed with this illness.  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.  I wish that this incident was isolated but it isn’t.  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.  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.  Please help us have a voice so that at least our children can get the medical help they need to live and experience life.  Thank you for listening. 

Here is the link if you want to post your story too.  Go Lymies!

http://www.katiecouric.com/lets-talk/what-was-your-worst-health-scare/

 

 

 

 

Our Health Care System is Broken and It Definitely Can't Fix My Herx

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.  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.

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.

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.  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.  I am left just standing there in a stupor because I am so confused about what just took place.  So I wait 15 minutes for her to get off the phone and then I tell her my name.  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.  So I make my appointments and leave.  $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. 

I would love to tell you about my Therapy appointment...but I don't remember it.

Lyme brain is a scary thing.  It is like living the movie Momento.  Who even knows how many times I have made this reference in my blog because I have no short term memory.  So my husband and I went to see the therapist, who I had some reservations about, and she actually wasn’t that bad.  At least that is what I told my husband because I remember nothing about going to see her, or what we talked about.  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?”  No, I didn’t.  I don’t.  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.  I have noticed throughout treatment that my blackouts wax and wane.  More than scary it is really frustrating.  I don’t remember phone calls or get-togethers with friends or family, I don’t remember entire conversations that were important.  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.  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.  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.  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.

Anyone 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.

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.

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. 

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.

To Cut Myself Off From Toxic Family - Trimming the Family Fat

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.  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!

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.  It seems like the majority of family are in this negative spectrum which surprises me.  I guess I could see a few nay sayers, in my family, but the majority??!!??.  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.  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.  It makes no sense at all.  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. 
I think I also need to explain a little of my background so it makes sense why my family has done this.  I have always been the proverbial black sheep of my family.  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.  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.  I had Lyme since I was a little kid, there is a possibility I was born with it too.  I had a lot of health issues my whole life.  In my teen years I had extreme anxiety and depression rear its ugly head.  I felt out of control, my relationship with my parents was terrible and out of control too.  I started using alcohol and drugs at 13/14 and it was a major part of my life until my early twenties.  I hated myself, my life and was as self-destructive as I knew how to be.  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.  I met my 1^st husband in my late twenties and got married.  He was not a bad guy but we were very ill suited for each other and ended up getting divorced a couple years later.  I met my current husband when I was 33, got married at 35 and had two beautiful girls.  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.  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.  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.  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.  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.  Anyway, because of this I pissed off a lot of people.  To quote my Aunt, I “have no right to demand that anyone go out of their way to make food that J can eat.”  I know that my family thinks very little of me. 
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.  A liar because I proclaim to have Lyme and that my kids have Lyme.  A drug addict because I am reliant on pain medication to function and take care of my kids.  They also said I am rude and demanding.  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.  My Aunts also insinuated, if now outright said, that I am a negligent and abusive mother.  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.   One of my Aunts’ even said, “I don’t give a shit about Kara, I only care about those little girls of hers”.  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.  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.   
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.  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.  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.  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. 
Here is the email I sent to my Aunt before Christmas.  It is badly written because I was so upset.  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.  Anyway here is the email and I wish I would have edited it before sending so it sounded more congruent.

****y,

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.

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.

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.

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.

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.

Boring symptom gripe and my current med list/issues

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.  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.  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.  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.  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.  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.  Having to rely on someone else to do simple tasks, do everything for you sometimes, is a real bitch. 

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.  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.  If you have never experienced your limbs going numb it is a horrible feeling.  Not only are they numb, but the pain from not having any circulation is unreal. 

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.  I take Nystatin & Diflucan for yeast.  For supplements I take 500mg of Magnesium, 250mg of Zinc, 3 tbsp of fish oil, 50-200 billion probiotics, & vitamin C.  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).  Trying to remember to take any or all of this has been a real struggle.  I even forget to eat some days: I have a terrible taste in my mouth all the time and no appetite.  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.