My disease...GONE???

I have the most amazing news ever!!!

I recently went for a checkup with my CIDP doctor. I went through the usual exam with him and then I brought up the possibility of future children. I thought this would embark a on conversation that would lead to high risk pregnancy talk, yet again. Well to my shock and amazement the conversation took a turn I never in a million years would expect.

Dr. sat me down and said in looking at all my recent test results, he believes my disease has dissipated. As in hit the road running from my body! My test results looked to him as normal as any other healthy individual, certainly not a CIDP victim! I just about passed out! Seriously! After almost 10 years of treatment, 2 of those spent hanging out paralyzed from the neck down and hospital bound, I am about to make a radical change and come off ALL the medicine that I have always thought would be in my life for ever. This is one relationship I am so ready to sever as quickly as possible! So Dr. says he would like to wean me off my IGG infusions first. The next one is due around Thanksgiving. We are just going to not do it and see what happens, and yes I will be seen by my dr and monitored closely. If all goes well without the IGG infusion we are going to move on to my oral meds of Imuran and see if I can come off of it completely as well. HOLY CRAP!!! Totally medicine free!! I am still in such shock!


So if this exciting adventure pans out to be my new way of life, then many new doors are going to open for me. I will not be a "sick" person anymore. A title I am more than happen to vanquish from my life as well as alert my health insurance company to. I will once again after 10 years be able to sink my teeth into BEEF!! OH!! How I long for a big old beef patty burger! YUMMY!! 10 years with no beef is a killer. Being pregnant with no beef is a killer. I literally drank bottle after bottle of A-1 sauce trying to compensate for my lack of beef while pregnant with Baby DIVA. ( oh if you are wondering there is a slight chance eating beef could stimulate the autoimmune response of my disease. And I am sorry I don't like being paralyzed from the neck down so I just didn't want to take a chance!!) Pregnancy will be an ease. No high risk precautions needed! And a really big option that will now be available for me to think about...if I have another child and I am not on medicine, Breastfeeding my child will be possible! Wooohooo!!! So awesome!! I will be NORMAL!!!!!! The fears of Hubbs-to-be getting laid off and us losing health insurance will no longer plaque me, and I must tell you this is a terrible fear for us! No health insurance for a sicky person basically is a death sentence!!! No more treatments or rather days stuck inside with an IV attached to my arm and Baby DIVA wishing momma could hold her!


The list can go on and on. most of all I am just thrilled we are going to try and pull me off the meds. If all goes well this time next year CIDP will be part of my history rather than part of who I am!! Keep your fingers crossed for me PLEASE!!!!!

Mommy Break

WOW!
10 weeks sure have flown by since i last posted this and introduced you to my little disease, CIDP, and My Battle with it. But here we are at another 10 week period gone by and yet another dose of medicine. I am taking a day off today from mommahood and the daily hustle and bustle to hook myself up to an IV and load up on some fabulous IGG. 500ml of fluid will flow through my veins today and deliver the goods to the needed cells and VOILA I am good to go and kickin' for another 10 weeks! Fabulous!!


Have a Great Saturday My friends!!

But I come with my own Sippy!!!!

9 years ago today I was admitted to the hospital at the ripe age of 21 unable to move my extremities and scared to death. After a battery of tests it was determined I had some form of neuropathy. I was treated with IV medication for 7 days and seemed to respond quite well. Strength began to return to my arms and legs and I was released from the hospital with the instructions to take care of my self. Well not even a month later the symptoms of not being able to move those arms and legs came back again! Back to the hospital I went.

I did not respond well to the medicine this time. I got a little worse then a little better. Then a little worse then a little better. Some more time went by and then by the time thanksgiving came about I was wheelchair bound and unable to do anything for myself but think and run my mouth!!! I of course kept my silly sense of humor running full force, I mean as long as my lips and mouth could move we were cool! I joked with everyone that I was a hot babe looking for a date and I even came with a sippy cup, stroller (wheelchair) and my own potty chair (you can figure it out). At Christmas I was still wheelchair bound and trying desperately to keep on laughing . It was tough be I manged to keep on trucking with a gigantic toothy smile.

The illness was finally diagnosed as CIDP. What is CIDP! Well it stands for Chronic Inflammatory Demyelinating Polyneuropathy. I interpreted it as some Crap the Dr's didn't really know or understand. I was treated with different types of procedures and medicines. Nothing really worked. Or if it seemed to work eventually it crapped out and we were back at square one. Even through all this over a 2 year period, I was able to keep on trucking with a toothy smile (for the most part). I secretly would cry at night to my pillow when i thought no one knew or could hear. My dumb butt self forgot that a woman who is paralyzed from the neck down has someone close by at all times, even if she doesn't think so. DUH!!

It was incredibly difficult to watch the faces of my family, friends, and caregivers. They did an awesome job in keeping their spirits lifted around me, but man I could read them like a book. Terror seeped from every muscle in the forced smiles at me. I have to say that was by far the hardest part of being sick. Not the inability to move. Not the having to succumb to someone doing everything for you. Not the constant wondering of what your fate may be. It was watching those around you be in pain. I hated it!

We pushed my stroller right on through the holidays and in to February. On Valentines Day 2001 I made a fabulous achievements. I moved my right pointer finger ALL by myself. It was the most awesome feeling I had ever experienced. We called everyone. The nurses, doctors, family and friends, People gathered around my bed to see Michelle the amazing Pointer finger moving girl. Circus freakish I know. But it was so good to move that finger. Soon after the finger movement, other muscles began to respond. In no time I was re learning how to walk. Frustrated that I could not instantly run marathons, i struggled with sound mind through intense physical rehab.

I learned to use my extremities again. I slowly began to resume a life of independence again as well. It was joyous. I returned to college. Got a job and began to live as a normal healthy person. Well sort of. Finding the right cocktail of medication was quite a chore and not something the normal healthy person endures on a daily basis. I take an oral medicine daily and an infusion of medication at a designated time point. The infusions started out every other day. And in 9 years we have successfully reached once every 10 weeks. During those early years no one knew if I would ever walk, run, care for myself again. It was pretty much understood that carrying my own children would never be a possibility. Well here we are 9 years later and what do you know. I carried a perfectly healthy baby almost to term. I was training for a marathon (reached 11 miles continuous run before finding out I was pregnant). And I am happy and doing great!!

I know this is just a glimpse or rather a very short summary of 9 years of illness and recovery. I don't really feel the need to go into all the gory horrible details. I really just want to recognize the date and look back at how far I have come. I am incredibly happy and thankful to still be here. I am grateful for every day. And I am so in love with my daughter Amelia Grace aka Baby DIVA and Alberto My Hubbs-to-be! I couldn't ask for a better life. Even if it was rocky in the past it has made me who I am and I think enabled me to be a better parent to my daughter!

Treatment Saturday

I love Saturdays.

Hubbs-to-be is home from work on Saturday. Baby DIVA always behaves in the perfect baby way on Saturday (fooling her daddy in to believing she is not a total DIVA during the week work hours). Our little Pink Haired Momma threesome visits family, friends and we have fun little outings on Saturdays, usually.

Not this Saturday though. This Saturday I am trapped at home. I have an autoimmune disease known as C.I.D.P. Pink Haired Momma and this disease have known each other for almost a full decade now. We have been forced over this decade to become the best of friends and luckily have worked out a very smooth working friendship. Well about every 2 1/2 months the disease wins and Pink Haired Momma has to slow down and get an infusion of medicine that keeps Mr. C.I.D.P. from being the alpha in the relationship. Not a big deal really. I get trapped at home on my couch (and I take remote control power for the day) with an IV of meds running in through my arm to my body for a minimum of 6 hours. I get to sleep and Hubbs-to-be assumes sole care of baby DIVA and all the housely duties for the day. I honestly kind of feel like my pre baby princess self on these days. Lounging all day. Hubbs-to-be slaving away with laundry and cooking and Baby DIVA demands. Except of course for the new accessory of an IV dangling from my arm, this is like a mini vacation right here on my couch!!! Fabulous darling Fabulous! Who would have ever thought getting an infusion of meds would be a mini vacay for a Pink Haired Momma!! LOL

In baby DIVA news we have some totally awesome advancements. Last night little Miss Baby DIVA discovered she has legs and that she can use them to her advantage. UH OH!!! She lifted herself from laying on her little tummy used the side of the couch and pulled herself all the way up to a standing position with no help!! She then gave me the cutest laugh and giggle when I begin to clap for her. Dumb move on my part maybe. A clap means Baby DIVA will master this new found skill today and by afternoon will be training for her first marathon because she now understand that those new found legs help her move at lightening speed. I tried to get a quick snapshot of her and her new found talent but failed. Instead I am providing for your viewing pleasure, Baby DIVA and her Zoom Zoom maneuvers across the house of Pink Haired Momma in her orange corvette. Also included is the fabulous video of Baby DIVA and her introduction to watermelon by Pink Haired Momma's momma on July 4th!! Two Totally fabulous Baby DIVA viewings!!!


Zoom Zoom in the Orange corvette: Please note Baby DIVA just got her license!!!

Watermelon Loving