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.
Thursday, December 27, 2012
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.
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