Saturday, December 29, 2012

The 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". 

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? 

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. 

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.   



What Congenital Lyme Looks Like Part2 - My 2yr old

So 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.

To date her symptoms have been and are:
Reflux/GERD (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), labial fusion (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), chronic yeast infections (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 frequent and painful urination (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), food allergies (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), chronic constipation (we give her daily prune juice and try to push fluids but it only helps minimally), rages, (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),  itchy ears/drainage, (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), sound and light sensitivity (cannot tolerate loud sounds or bright light, she will shield her eyes in sunlight and say, 'hot, hot'), nightmares/night terrors (which caused her to wake a lot in the night crying, since starting abx they seem to have diminished), night sweats (general temperature irregularity - both my kids can sleep in a t-shirt with a fan on them all night with no blankets), stomach aches (some from the constipation and some from the abx), insomnia/frequent night waking (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),  sensory processing disorder (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) recurrent bouts of high fevers (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), plugged sinuses (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 Hypotonia (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 separation anxiety (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), general anxiety (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, low grade fevers (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), OCD issues (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, migrating body pain and headaches (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 sensitive scalp (she will cry in pain whenever we have to comb/brush her hair).

There are some I am missing but will update when I remember them- I love having a Lyme brain!

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. 

Currently her antibiotic and supplement regiment is:
Nystatin (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. Clarithromycin – ½ tsp 2xday, Amoxicillin-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, Cod liver oil - 1 tbsp 1x day (Nordic Naturals Omega-3 brand), Multi-vitamin (Animal Parade Gold brand), Vitamin C (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), Probiotics – 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).

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. 

Thursday, December 27, 2012

Rant and purge, rant and purge


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.  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.  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.  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.  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.

I need a shit bat for all these shit balls, aka The big Christmas Crash of 2012

Had 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. 

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. 

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. 

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.

Saturday, December 22, 2012

What 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.

A little background on my 3 year old and my pregnancy with her:
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.  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.  The C-section was like a scene from a torture, horror film.  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.  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.  ‘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.  Her Apgar score was good and she was considered a ‘healthy’, albeit miserable, baby.  She cried constantly for the first 4 months of her life.  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.  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. 

To date her symptoms have been and are:
Severe eczema (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), reflux/GERD (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 food and environmental allergies (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), sugar sensitivity (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 stomach aches (after eating & from chronic constipation – her stomach aches have intensified since starting abx), chronic constipation (we give her daily prune juice and try to push fluids but it only helps minimally), recurrent otitis media, ear infections & itchy drainage (we are on our 3rd set of ear tubes and her ear infections have been better since having them put in), severe insomnia (much worse since starting abx and she is terrified to go to sleep because of her nightmares), nightmares/night terrors (since she was about 1yr), night sweats (general temperature irregularity), sound and light sensitivity (cannot tolerate loud sounds or bright lights, light intolerance has increased since starting abx), sensory processing disorder (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),  chronic general illness (constant colds, etc, although hard to tell because kids get sick a lot when they are young, since starting abx she rarely gets sick), sleep apnea from enlarged tonsils and adenoids (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), gross motor delay (she did not roll over, or sit up, or crawl but did start walking, unsteadily, at a year), Hypotonia (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), blocked tear duct and constant eye drainage (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 emotional meltdowns (she has constantly 'hurt feelings' and it takes a really, really long time for her to calm down when she gets upset), overly frustrated easily (she will even bite or hit herself when she can’t deal with what is upsetting or frustrating her), word finding difficulty (almost stutters trying to find the word she is trying to say and has gotten worse with tx), chronic anxiety (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.  Our pediatrician also agrees that it is a bit excessive but to just let her be if it helps her relax), low grade fevers (99.1-99.5), facial eye squint and shoulder shrugging tics (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 cough (that developed out of the blue but has gone away since starting abx), chest pain (since starting abx she has been complaining of chest pain, heart always sounds good with check-ups), migrating body and head pain (she has been complaining of body/head pains since starting abx), extremely sensitive scalp (she will cry in pain whenever we have to comb/brush her hair), J had a visible seizure on December 7th and the neurologist thinks she has Benign Rolandic epilepsy.  Luckily we wont have to medicate her unless she has another siezure).  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.  She has recently started to talk about death and blood a lot lately.  Not sure where this is coming from and it is worrisome.

Currently her antibiotic and supplement regiment is:
Nystatin (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.  Clarithromycin – ½ tsp 2xday, Ceftin – ½ tsp 2x day, Cod liver oil - 1 tbsp 1x day (Nordic Naturals Omega-3 brand), Multi-vitamin (Animal Parade Gold brand), Vitamin C (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), Probiotics – 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), Melatonin - .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 ‘lower the seizure threshold and increase the risk of seizure, particularly in children with neurologic disorders’. 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 Calcium with Magnesium – 1 tbsp 1x day (Childlife brand).

Upcoming changes in our protocol:
Supplements: soon I am going to introduce and add Inflamma Response (Herb Pharm brand), and try to figure out how to get her to start taking Milk Thistle (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). 

ABX: we are going to stop the Clarithromycin and Ceftin and start targeting the Babesia.  Her new abx protocol will be; Azithromycin – 1tsp 1x day and Mepron – ½ tsp 2x day.  We will start this in January, after her birthday, because I want her to have a good time and not worry about her herxing. 

Upcoming changes in our diet:
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.  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. 

Detox:
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.