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.

 

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 1^st born daughter was pretty ill with her own kaleidoscope of health issues and was in the hospital and clinic non-stop for the 1^st 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 2^nd 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. 

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.