April 30, 2012 - Slaying the monsters

I am writing this little blog in hopes that I can share my experiences with taming the beast of autoimmune disease so that maybe we disease warriors can unite and bolster each others' spirits along the journey. Maybe some of my challenges can help others of you out there and in turn your trials can aid me and others like us in fighting the good fight and never losing hope, faith and our sense of humor. My wish is for this to be a safe place to leave your worries, questions, good times, and struggles and maybe leave here a little lighter, more informed and feeling good knowing you have helped someone else just by being open and honest. So share away :)

I'll start with a little bit about my journey thus far:

I just turned 30 and am ecstatically expecting my first baby. I have been diagnosed with Lupus and Sjogren's Syndrome since I was 20. Along the way I have encountered quite a few bumps in the road as many of my doctors have taken to calling me the "exception to the rule." You know everyone always wants to be extra special at something, I just had no idea that I would be so extra special at having health anomalies. It is definitely something I choose to laugh about now although I did and do still have my days when throwing a nice pity party sounds like a grand idea. My husband has helped me immensely in turning around my perspective on being "different." I had taken to calling myself broken and one day he said "you know Sarah what do people do with pieces of broken glass? They make the most beautiful mosaics and that is what you are: my most amazing, beautiful one of a kind mosaic." He always knows exactly what to say and it is always so genuine. So let's try to remember that while we may be comprised of some broken pieces, we are all unique and priceless mosaics.

Ok, so anyway, I also found out along the way that I have Factor V Leiden which is a clotting disorder. That led me to a brief, dubious dance with Coumadin which I refused to continue taking being as I was only 20 years old and really did not relish the idea of being locked into weekly testing and rigid INR monitoring for the rest of my life. I then went through two specialists before finding the perfect rheumatologist for me. Rheumatologist #1 put me on Imuran and neglected to check my white cell count as often as she should have thus leaving me dangling precariously on the precipice of sever leukopenia. However, rheumatologist #2 wasn't even on the same page as Rheumatologist #1 in terms of the accurate diagnoses and chose to treat them so mildly that nothing got better. So, just like in Goldilocks and the Three Bears, Rheumatologist #3 was "just right" in her treatment methodology. She was aggressive without being reckless. She eventually stabilized me on a treatment regimen of Plaquenil, maintenance Prednisone and Methotrexate which was added after a rousing bout with a very rare condition called Relapsing/Remitting Polychondritis that impacted the cartilage in  my ears in quite a disastrous way. It's never a good sign when the ENT who was called in for consult thinks you broke his machine because of the strange response elicited by my pressure filled ears. He tried poking a hole in my ear drum to try to relieve the pressure to no avail so after some discussion with her rheumatological fellows, my rheumatologist finally diagnosed me with the R/R Polychondritis and put me on Methotrexate which was the only drug that could finally get the inflammation down in my ears but boy did it quickly become the bane of my existence! I tried the pills and then switched to the weekly injections to try to avoid the terrible nausea associated with one of the oldest and crudest chemo agents but nothing eased the gut wrenching sickness. I would take the medicine and spend the next 4 days recovering from being sick only to have to take it again in 2 days. So, after a couple years of this vicious cycle I told my doctor I had had enough and would take my chances without it. So far, so good on that front.

That brings me to 2010 and the year that MS became a part of  my  illustrious autoimmune disease repertoire. My mom has had MS for the last 18 years most of which time she has been classified as the much preferred Relapsing/Remitting type with only a short stint in the Secondary Progressive camp. At this point I should also mention that although no true genetic links have been made in regards to the autoimmune issue as a whole, every female on my mom's side of the family has some sort of rheumtaological or neurological or combination of both types of diseases. Needless to say this wasn't my first rodeo so when I woke up that fateful morning and fell down trying to get out of bed I wasn't shocked beyond belief. I was frustrated and a little disoriented as to why the left side of my body would not make nice with the right side and help me up but I knew in my head that this was eerily similar to my mom's first exacerbation and so in my mind I already knew what the doctors would take months to finally confirm. After two stays in the hospital with paralysis and episodes of extreme spasticity I was finally diagnosed with Relapsing/Remitting MS by my mom's neurologist who she had been with for the previous 17 years. I was so grateful that he had such a thorough understanding of my mom's history and disease progression. We did several rounds of IV steroids to try to get me back on track and then he wanted to put me on IVIG for maintenance treatment. Now, I don't know how many of you have ever had infusions of IVIG but it's akin to infusing your blood with really thick insoluble glue. I was really sick after each infusion for about 10 days to 2 weeks and it was a monthly infusion so I decided that was not the best treatment protocol for me. He then put me on weekly injections of Avonex which I also couldn't tolerate so well. The flu-like symptoms just never went away in between injections so then we landed on Copaxone which was ok for the first few times but then as fate would have it I met the man of my dreams and we knew from the start we wanted to start a family together so the Copaxone had to go.

My doctors have always said that although I would be extremely high risk, I could definitely get pregnant and carry the baby to term but they always advocated being flare-free and as young as possible so I took myself off the Copaxone and we tried for about 4 months until we found out we were pregnant on Super Bowl Sunday :) We were over the moon excited and I couldn't believe that in spite of all that is seemingly wrong in my body, I could still be a viable home to this amazing miracle. I was doing extremely well health-wise when I conceived - all the autoimmune beasts had been sufficiently subdued for the time being. Knowing all the risks, I immediately enlisted the care of a very well renowned Perinatologist with whom you have to "qualify" to be seen as she is so in demand that she has to take only the most complex of high risk pregnancies. My list of autoimmune diseases got me in to see her right away - finally those pesky illnesses were getting me the red carpet treatment ha ha. And just because I enjoy being an overachiever I got to add a diagnosis of a bicornuate or heart-shaped uterus to my list of medical anomalies during the first visit with the Perinatologist. Awesome! This just basically means that I am at a much higher risk of having an incompetent cervix later on and possibly being forced to deliver c-section since the baby may not have enough room to flip into head first position at the end as she is only growing in about half of my uterus.  I started crying when the doctor found this on the initial ultrasound but my husband came to the rescue yet again saying how lucky our baby was to get to grow inside a beautiful heart-shaped home for nine months. Cue the tears and kisses he he. I am now 16 weeks 1 day pregnant and we know that we are expecting a beautiful baby girl sometime around October 14. She is such a fighter and I couldn't be more proud to be her mama.

I was doing relatively well in the beginning, only suffering a bit of extreme fatigue (a nice combo of disease fatigue and pregnancy fatigue) and morning sickness and headaches but then the day came recently when I woke up with that dreaded feeling (or lack of feeling as it were) in my left side. I could not get out of bed without assistance from my husband. My whole left side had seemingly left the building - it's a bad pun I know. So, after calling by Perinatologist and then my Rheumatologist who called in some low dose Prednisone in hopes of toning down any inflammation in my body, I began the waiting game for my sensations to come back thinking there was no way this could be the MS because I had heard that most women experience complete remission during pregnancy (my doctor later reminded me of that saying so often applied to me throughout my journey: "there are always exceptions to the rule."). I waited for a week all the while leaning exclusively on my husband for support both literally and figuratively. He selfishly took off work to deliver me to and from the restroom and bring me anything I could possibly want or need. I am truly blessed. After a week of trying to use the walker to regain my strength I lost all control of my right leg as well which really kind of threw me off because so far my MS has never strayed from my left side. So, then I knew it was time to call in the Neurologist and after much discussion with my Perinatologist he decided on an MRI (scary because I didn't want anything that could remotely hurt our baby)  and IV steroids for 5 days. I know we always have to weigh the benefits versus the risks but I am so protective of this precious little one that I had to really pray about all this. I am now in the hospital on day 4 of the infusions and our little girl doesn't even show signs that she even knows anything bad is going on. She's bouncing around and looking really strong - what a trooper!! I am slowly regaining some strength as the inflammation subsides in my body and now am looking forward to being able to walk around again soon hopefully. My doctors are talking about putting me back on Copaxone for the remainder of my pregnancy and I am feeling very uneasy about that even though it is deemed a category B drug. Congratulations if you have read this far. I know I wrote WAY more than a novel but I just wanted to get fully acquainted this first post and if you have made it this far my questions to all of you fellow warriors out there are: did you have any exacerbations during pregnancy? If so how were you treated and what was the outcome? Were you on any disease modifying agents such as Copaxone during your pregnancy?

Please feel free to share whatever is on your mind and heart and please come back. I promise to not always be so verbose :)