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.
Saturday, December 29, 2012
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.
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.
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.
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.
Friday, November 16, 2012
My Lyme brain is a bi-polar playground
The 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?
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.
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.
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.
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.
Thursday, November 15, 2012
Baby not tolerating antibiotics = panicked mama.
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.
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.
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.
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.
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....
Wednesday, November 14, 2012
Obsessing about Lyme on the Internet again
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.
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?
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.
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.
 |
| Bartonella aka Cat Scratch Fever |
Prayers for all of us to get well and reclaim our lives once again....and soon!
Tuesday, November 13, 2012
Bad Mother Blues, couch parenting at its best.
It has been a hard, hard week. The fatigue is unreal. I am neglecting my kids, rather it is really hard to be around them right now because it is sensory overload and my body hurts so much that I can barely touch my babies. I have been letting them watch too much TV lately, as I am anchored to the couch, because I cannot move to do anything else. I want so much to play with my own children and I have never been able to really do that since they were born. At least the kids are somewhat distracted by their TV surrogate mama so that they don't focus on me being so sick and scary looking/acting. I am consumed with what is happening to us. I am consumed with cyclones of rage, fear, and bewilderment. I spend a lot of my days, when I am couch/bed bound trying to research Lymes and treatments and any little thing I can get my hands on to try to get us an escape route out of this muck and Lyme mire but there is none, just more possible waiting horrors for me to panic about.
Just got the green light to restart the baby on abx, and after just one dose of ceftin her bowels are a wreck. She has had a bowel movement every couple hours and lots of bad gas. She cries owie and cries for lotion at every diaper change. Tonight is going to suck as I doubt she will be able to sleep and will just cry all night long just like she did when we introduced abx the first time. Right now she is curled in a blanket on the couch looking wiped out. My almost 2 year old, who should be buzzing around the house like a bee, is just lying there looking at me with those big hopeful eyes of hers.
I want to be the mother I know I can be, could have been, if it weren't for this illness. These last 3 years I have watched my children slide through their baby-hood in a distant fog. I want so much for the time to stop so I can just relish every cool and new thing they do and learn. I feel so little joy in my life, and it is hard to even feel it with my children. It is such a horrible thing to want this connection with my children and not have the energy for it that it shames me to the bottom of my soul. I love them so much but I have so little to give them right now, especially now that I have started treatment and am sick 1/2 the time. I am scared. I am scared. I am scared. It doesn't matter how much I say it, it never goes away. I have stopped being a wife, a mother, a friend, a daughter, a co-worker, a productive person....I have lost me. I want me back and sometimes I get a glimpse of the me I was, but these peeks are brief and far and few between. If I could rip my own heart out I probably would try, if nothing else but to squeeze some life back into it.
So for now I will sit on the couch and watch my children play and beg for my attention and try not to cry about the total waste of it all.
Just got the green light to restart the baby on abx, and after just one dose of ceftin her bowels are a wreck. She has had a bowel movement every couple hours and lots of bad gas. She cries owie and cries for lotion at every diaper change. Tonight is going to suck as I doubt she will be able to sleep and will just cry all night long just like she did when we introduced abx the first time. Right now she is curled in a blanket on the couch looking wiped out. My almost 2 year old, who should be buzzing around the house like a bee, is just lying there looking at me with those big hopeful eyes of hers.
I want to be the mother I know I can be, could have been, if it weren't for this illness. These last 3 years I have watched my children slide through their baby-hood in a distant fog. I want so much for the time to stop so I can just relish every cool and new thing they do and learn. I feel so little joy in my life, and it is hard to even feel it with my children. It is such a horrible thing to want this connection with my children and not have the energy for it that it shames me to the bottom of my soul. I love them so much but I have so little to give them right now, especially now that I have started treatment and am sick 1/2 the time. I am scared. I am scared. I am scared. It doesn't matter how much I say it, it never goes away. I have stopped being a wife, a mother, a friend, a daughter, a co-worker, a productive person....I have lost me. I want me back and sometimes I get a glimpse of the me I was, but these peeks are brief and far and few between. If I could rip my own heart out I probably would try, if nothing else but to squeeze some life back into it.
So for now I will sit on the couch and watch my children play and beg for my attention and try not to cry about the total waste of it all.
Why I love paying for an insurance that won't insure.
After having my insurance deny a crucial antibiotic Mepron, aka liquid gold, that I need to fight the Babesiosis (a common bacterial coinfection of Lyme's Disease). I took another slew of additional tests that they demanded after the slew of tests I already took and now they have finally come around. Happy day! I just got a call from my pharmacist, that I call Shaggy because he looks just like a total stoner crossed with Shaggy from Scooby Doo, and he said that my insurance is finally going to cover one of the most expensive meds in my treatment and I am freaking elated beyond belief. So instead of $1000, I will only have to pay $75 every month...which brings our total monthly RX bills to $200! ZOIKS!
The sad part is that this is the cheapest cost of my treatment. I think we pay something like $100-$300 every other month in supplements, and $350-$600 every other month for our LLMD. Another $150-$300 a month for the docs I have to see in order to get my pain meds and other non pain meds. This is not counting the lost wages for my husband or parents when they have to take care of my kids because I cannot do it, or the daycare costs when I am too sick to be a proper mother and everyone else has to work, and nor does it count all the wasted money on ER and UC visits that you rack up, when you are herxing so bad you think you are dying, even though you know they are not going to help you but you go anyway because, even though they will treat you like shit, they will at least have to save you if you are dying, right? My last ER visit the doc wouldn't even come in the room to give me an EKG because I mentioned Lymes disease and they think I am a crackpot. We ended up just walking out after a few hours so I never found out if my heart was okay. You see, you really need to be rich to have Lyme's Disease in my opinion....too bad we are not.
The sad part is that this is the cheapest cost of my treatment. I think we pay something like $100-$300 every other month in supplements, and $350-$600 every other month for our LLMD. Another $150-$300 a month for the docs I have to see in order to get my pain meds and other non pain meds. This is not counting the lost wages for my husband or parents when they have to take care of my kids because I cannot do it, or the daycare costs when I am too sick to be a proper mother and everyone else has to work, and nor does it count all the wasted money on ER and UC visits that you rack up, when you are herxing so bad you think you are dying, even though you know they are not going to help you but you go anyway because, even though they will treat you like shit, they will at least have to save you if you are dying, right? My last ER visit the doc wouldn't even come in the room to give me an EKG because I mentioned Lymes disease and they think I am a crackpot. We ended up just walking out after a few hours so I never found out if my heart was okay. You see, you really need to be rich to have Lyme's Disease in my opinion....too bad we are not.
Spirochetes are wreaking havoc in my body.
Sigh...got more crazy news from one of my docs. First my liver is tanking and now my thyroid is on the fritz. This Lymes is wreaking havoc in my organs, not to mention my brain. I know for certain I never want to have Alzheimers because I have gotten a special preview of what that will be like. Terrible! The Lymes has also gone into my brain, causing confusion, loss of short term memory, brain fog, etc. I literally can get lost in my own house. I can't tell you how many times I find myself in the hall, or in a room staring at the shelves or wall and wondering what I am doing and why. My favorite to date is being naked following a shower and having no idea what I was supposed to do next. I have stopped driving for the most part because I become confused and don't know where I am...pretty freaky feeling. On my good days I will only drive local, places I know really well. Hard to have conversations with people because I can't remember names, or recall what I was even going to say. The worst part is that I will completely forget everything I said, or did, or who I talked to, or where I went, etc, after a few days. I take a lot of pictures these days to help me remember things I have done. It is frustrating. My phone's calander alarm is going off every 15 minutes to remind me of what I am supposed to do during the day...husband hates my phone alarm!...I am starting to, too now. My baby, turning 2 next month so really not a baby anymore, is starting to show some of the same neurological problems that we noticed with my 3yr old when she was first learning to walk, which was mainly gross motor delay issues and weakness with her legs. Then came the falling flat on her face everytime she tried to walk fast or run. The started to get pretty serious after awhile so we finally brought her to a Neurologist at Children's who told me that he was positive that she had mild Cerebral Palsy. He was shocked that her MRI was clean of any abnormalities. Turns out, she has Lymes Disease. It scares me because Lymes can take kids and adults down overnight - all of the sudden they have paralysis in hours. I have to keep breathing or the fear of it all will consume me. There is such a feeling of panic knowing that it is a ticking time bomb and you never know what or where it is going to attack next, or how bad. I try not to get hung up on the increasing issues that my kids are having...but I want them to be in remission, and I want them to be in remission now, NOW, NOW! Kudos to all the parents out there who have kids with health issues because it is a gut wrenching, hard, helpless feeling road to go. Peace
Sorry...life is a bit disjointed right now too
I am pulling all of my entries onto this blog so some of them are a little out of order...sorry about that. Having a Lyme brain like mine this is probably really confusing, but no worries because you probably wont remember reading this blog by tomorrow. See problem solved! =)
My daughters herx has subsided and she seems to be doing really well again. Still working on increasing my one year olds anti-yeast dose, so that we can even get her on antibiotics - she is showing more OCD tendencies but has not been complaining of pain as much as she used to. (holding my breath on that one) After waiting since June I finally got into the pain clinic at United and now forced to see more specialists...a feat that I can barely manage with the 4 docs that I am forced to see monthly now. Yay more medical bills, yay more time that my husband and my parents have to take off work to drive me when I can't do it myself. Sorry for the rant but I am really frustrated with being on the doctor merry-go-round. All I want for christmas is pain relief so I can function and take care of my girlies. If I hear one more person tell me how great I look I will scream. Happy hollidays!
Back on my back
After a respite of pain and sick for a week I am back to being couch bound. bleh. Scary and bad news, I am temporarily having to stop my treatment because my liver is not doing so hot. =( It is hard to have to stop when I just got started again but I need to remember it will be about 3-5 years of this before I see any true light....I am coming up on 5 years of already being really sick now and with treatment that will be 10 years of my life, if I am one of the lucky ones that can beat this into remission, and I just need a break from the pain and sick ick. My 3 year old had her first serious jarisch herxheimer reaction last night at 1am and it was very, very scary; Her temperature dropped down to 95.6 for a few hours too. Until the last few weeks she has been doing amazingly well with her treatment but started to have mild herxing for the last 3 weeks which basically was an increase in the symptoms she has had since birth. Yesterday she got really sick and then whammo, middle of the night, we started almost convulsing (pulling her arms and legs to her chest and thrusting them out over and over), drenched in sweet but freezing cold. Her skin went chalk white and her eyes looked bruised. She kept moaning and scream/crying saying "NO, NO, NO!" and that her knees were hurting her. We temporarily stopped the antibiotics to let her system calm down and she is doing much better today. I am I am so grateful and relieved that the herx didn't get any worse. The thought of her going through the death-throe-ER-visit herxes that I do makes me sick to my stomach. She is so little and there is nothing I can really do to ease her discomfort or fear. Blah...bad night, very tired today. =(
Lovely Night Sweats and More
I am having a better day for a change but still feel like utter crap from my month long, marathon mother of a herx. The only relief I can get from the pain is sleep. Unfortunately one side effect of Lymes disease is horrific night sweats. I have to put out 2 extra shirts and jammy pants to change into, and I have to sleep on towels (one wrapped around my head) but it still soaks through all of ...
it and feels like I have peed the bed (GROSS). Eventually I have to migrate to the couch for some dry land during the night. Sometimes I hate the sight of my couch and bed so much because it reminds me of the endless hours of pain and misery that I can barely stand to be in my own house. Luckily I have my crazy tots to distract me from being consumed by this illness. I won't go into all of my symptoms but I will mention the latest one that is a real bitch: My altered sense of smell and taste. Lymes attacks your nervous system and alters all of your senses, taste, smell, temperature regulation, vision, etc. I have a constant taste of dirty bandaids in my mouth and everything smells like the inside of a dirty microwave - which is why I go for days without eating and have lost over 45lbs in the last few months. It is also known in some circles as the Pain Diet. The upside of today is that I was able to throw in a load of laundry and, even though I am completely wiped out from it, I am ecstatic to do something useful for my family. You would think you would never miss endless household chores, but when you can no longer do the things you used to be able to do you even get to missing being able to scrub out your dirty toilet instead of just staring at it in disgust.
My Story...a little belated.
I am a mom to two beautiful daughters (ages 1 and 3) and we
are all battling Lyme's disease plus the lovely co-infections that often accompany it which are babesia and bartonella. I have
a wonderful and supportive husband who is keeping our family’s ship from
sinking and I owe him my life. I have had Lyme's since I was 4yrs old and have
had a myriad of symptoms my entire life but never knew I had Lymes until this
last July, 2012. After a horrific birth
of my 1st daughter, an emergency C-section and tubal surgery without anesthetic
in 2008, at a local hospital, I got very ill physically (with what felt like
Malaria) and mentally with horrible anxiety, panic and depression. I was initially diagnosed with PPD, PTSD,
Anxiety and Major Depression and was hospitalized several times for what I
thought were nervous breakdowns. I had
always been a tremendously strong and all of the sudden I could not cope with
life anymore. Since birth, my 1st
born daughter was pretty ill with her own kaleidoscope of health issues and was
in the hospital and clinic non-stop for the 1st two and a half years
of her life. And like me none of the
doctor's or specialists we brought her to could tell us why. By 4 months following her birth I was so ill
that my parents had to step in and help us raise our daughter part time for the
first year of her life. Thinking I was
suffering from Post Partum depression I became very active in the PPD
community, and was perplexed when everyone on the PPD boards were getting
better and I just kept getting worse. My
husband and I decided that having any more children was probably a bad idea,
considering the bad shape I was in, but we got pregnant accidentally anyway; it
literally could have been an immaculate conception. A lot of family and friends even said
outright that they thought it was irresponsible of me to continue with the
pregnancy, but I couldn't go through with aborting her (I had already been
through 2 miscarriages and emotionally couldn’t face the loss of another baby)
and I am glad I didn't because she ended up saving my life. During my 2nd pregnancy I was the
healthiest I had been in 3 years, and almost all of my symptoms, both physical
and psychiatric, subsided and I had a renewed sense that I could continue on
with life. A few months after having my
second daughter all of my symptoms returned with a vengeance and I started
swirling down the drain of despair again.
By this time I had seen probably over 30 doctors, had been on over 35
different medications, had countless therapies, 10 different diagnosis - most
of which insinuated that it was all in my head – and started to feel hopeless
and fairly suicidal. I started to truly
believe that I was losing my mind, partly because that is what I was being told
by doctor after doctor, and partly because that is what it felt like. Even my husband, extended family, friends,
and co-workers were starting to believe the same because I was acting so erratic,
so unlike the person I used to be, so unlike the person they had always known. It was the most frightening thing I have ever
faced in my life...that is until I got diagnosed with Chronic Lymes Disease and
found out I had given it to my tiny little, precious girls and most likely my
husband. So now we are in the beginning
stages of treatment and submerged in the waking, walking hell that comes with
having Lyme’s Disease and the treatment of this scary disease. There isn’t a whole lot of information out
there about children with congenital Lymes and hopefully our journey to
remission, permanent recovery (?) will be helpful for others who are lost at the
sea of illness like we are. Peace and
blessings of heath to you all.
I wasn't crazy....I was sick with Lyme's Disease
So, it has been a long time since I have posted and a lot has happened. This blog was originally a Post Partum Depression blog but I found out this last July, after 3 1/2 years of being really ill both physically and mentally, that I have Chronic Lymes Disease, probably not PPD at all, and that I passed it to my two beautiful girls, who will be 2 and 4 this December, in utero, and most likely to my husband. We have made a family decision to treat myself and my girls first before doing any testing or treating on my husband.
It has been a raw, scary, painful, horrible waking nightmare so far. The bad has very much outweighed the good for me...plus I tend to be a bit pessimistic and that isn't helping matters either.
It has been a raw, scary, painful, horrible waking nightmare so far. The bad has very much outweighed the good for me...plus I tend to be a bit pessimistic and that isn't helping matters either.
I have to probably also say that I am not a bloggie person but purging this horror, that is now my and my daughter's life is somewhat cathartic. Part of why I am posting my journey about living with Chronic Lymes Disease is because it is a hidden epidemic, very much like AIDS was when it first appeared, and there are a lot of people out there, like me, who have no idea how to navigate this disease that has no exact cure, and that you can't get medical treatment for. Basically I have decided to make Lymes disease my champion cause, and want to force it into the public eye, in a way, so those of us that are deteriorating from this illness can get the help we deserve. The other reason is that purging the raw fear of what is happening to my body and brain (to my tiny little daughters' bodies and brains) helps me focus and keeps me in fighting mode, keeps me from giving up. So bear with me as I am still stuck in the 1st stages of grief; I feel like my daughters and I have been handed a death sentance and I haven't quite wrapped my head around the magnitude of it all. And so I am in the self-absorbed, whining, pity party stage, if you will, and haven't hit the ass kicking constructive warrior stage yet where I get the all positive and take no prisoners attitude. It is really hard to feel like a warrior when you can't even get off the couch to brush your teeth.
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