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.   

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....   

 

 

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

Anyway, now I am losing my direction and need to get my kids outside (a daunting task as I am so fatigued and the pain is unreal) since it is so nice and we haven't been out of our living room for almost a week. 

 

Prayers for all of us to get well and reclaim our lives once again....and soon!

 

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. 

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!