I've put off writing about this for a while, but I think it's important to document it. It's long.
On July 15 I had my first MS relapse since being diagnosed 3.5 years ago. This was not entirely unexpected - there is a documented increase in likelihood of relapse within the 3-4 months after having a baby. Kira was born at the end of April and was just shy of 3 months old when the relapse hit. I'd also been experiencing an increase in the little MS symptoms I live with every day ever since giving birth. I'd just been commenting on how quickly those came back this time around.
I woke up on that Thursday morning feeling a little numbness in my left hand and foot. As the day progressed, my entire left side became numb, from the top of my head to the bottom of my foot. It's a very bizarre feeling that is difficult to explain. I could feel temperature and touch, but movement was awkward. At that point, I could still do what I needed to do with the babies - change diapers, feed and carry Kira, etc. But the numbness was ever-present.
We went in to see my neurologist the next day, Friday. He confirmed I was having a relapse and started me on a course of IV steroids (the same ones I'd done back when I had the optic neuritis in 2006). I did the first dose in his office. My mom had met us there, and since she'd been visiting with her sisters, my 3 aunts were with her as well. We made quite a scene in the office - Raph and I with baby Kira who was very upset and cried the whole time, Markus who just wanted to run and explore everything, and my mom + 3 aunts. All I wanted was to get better. It was very stressful.
That night the rest of my IV meds were delivered by courier. A visiting nurse came on Saturday to set me up with the next infusion and fill out a ton of paperwork. Then Brenda had to drive me around to get my hair and nails done because...
To complicate things, this was the weekend of Kira's Christening. The meds were to last 3 days, so Friday, Saturday and Sunday. The Christening was on Sunday at 1:30 and we wanted to be done by then so that I could remove the IV and no one would know. We were able to do that, but not without a little drama. The nurse had to come back on Sunday. Raph usually handles my infusions (he's AMAZING) but the IV was in a bad position and shifted painfully overnight so it needed to be removed and a new one placed. With the IV in (really, it's just a super-thin plastic catheter that is inserted using a needle), I need to be very careful with my movements so it won't shift out of the vein - so doing things with the babies, lifting, etc. had to be very limited. I needed a lot of help.
The emotional impact of all of this was...a challenge. Obviously living with MS there is a certain amount of uncertainty that we have to accept. But for the past 3.5 years, I have done so well that I guess I was lulled into a deeper sense of security. After Markus was born, I happily noted the end of the 4-month "danger zone" and went about my business. This time around, I knew there had been some disease activity based on the MRI I had last July, but I was still optimistic that I would deal with the everyday symptoms and not actually relapse. The timing was unfortunate as well, because I was so focused on my daughter's special day and hosting the party afterward. I didn't want to deal with a physical setback and the discomfort of the treatment itself.
My condition improved with the 3 days of steroids. The day after the Christening I felt better and was on my own with the kids as usual. Then Tuesday, everything fell apart again. I was so weak and exhausted, I could barely get off the couch. I had to ask Raph to come home from work early so he could take on the kids and I could lie down. The numbness, which had been steadily receding, returned. I called the doctor and he ordered me another 3-day course of steroids. Another nurse, another IV placement. My mom and aunt came on that Wednesday and helped me out so much - they cleaned the house, cooked a huge pot of spaghetti to last us several days, did the laundry, and took care of the kids.
Along with the numbness is a feeling of inflammation. My leg, especially, feels like it's swollen, particularly around the knee. This makes walking feel awkward. Climbing stairs is pretty uncomfortable.
On Thursday, my sister Natalie came to stay with us, and was such an awesome help. She truly loves taking care of the babies, and did a lot around the house as well. She ended up staying here for weeks, leaving only when necessary. It was the only way anything got done! From grocery shopping and cooking to cleaning the floors and making me breakfast, Natalie was invaluable. Also, the emotional support during the days was great.
The doctor put me on a tapering course of oral steroids after the IV was done. Over the course of the next week, I took my meds every morning along with a Prilosec because all those steroids can wreak havoc on the stomach (along with some other unpleasant side effects like being hungry all the time, insomnia, and loss of taste/smell) and was improving gradually every day. But the ordeal was not over yet. On Saturday July 31, I started to feel worse again. I spoke to the doctor the next day, and he increased my oral steroid dosage for 5 days. This time, instead of getting better, the numbness got worse to the point where it was worse than it had ever been at the beginning.
Back to the neurologist. He did an exam and was satisfied that although this is a stubborn relapse, I still have my strength. It was reassuring. The numbness was very widespread and intense on the left side. I felt it under my arm, my torso, my ear/side of my face. Everywhere. Movements felt muffled and strange. My clothes felt too tight on the left, but
weren't, which is the weird thing. They were the same, but
felt different.
The doctor ordered me a third round of IV steroids, which I started on August 5. The IV placement was a nightmare. The nurse couldn't get a good vein. She had to poke me 4 times, very painfully. I had to actually take a break in the middle because I was starting to feel faint. I should say that at this point, my friend Gina started working with me as a mother's helper. We had discussed this for a while, and now that I was out of commission in a way with regards to baby care, she started coming in to take over that stuff while I had the IV in.
Throughout everything, we kept up our routine of daily injections of my maintenance therapy, Copaxone. At the end of the day, after an hour-long IV infusion, it was all I could do not to cry sometimes when I still had to do that shot. As grateful as I am for all the available medications and therapies out there, it's been tiresome and getting more so the longer this relapse drags on.
This all brings me to today. Right now. The third round of IV steroids have been over for a few days and I'm back on a tapering dose of oral steroids. Improvement has been MUCH slower this time around. I didn't start feeling better at all until after all 3 infusions were completed. I feel better today than I did at the beginning of the week, but am by no means healed. This process is frustrating because I want to do things. I have lots to do around the house, regular maintenance things but also special projects, and I want to enjoy my son and daughter. I get tired easily. I had some energy yesterday morning and did some things around the house, then felt my condition getting worse as a result - so that's frustrating.
I am trying to remain prayerful, hopeful, and positive. I have to acknowledge that this is an arduous and challenging event in my life, but it is just one event and it won't last forever. I'm learning a lot about myself and about my family and friends during this time. The people who know what I've been going through - what we've been going through as a family - have been incredibly supportive. Ericka took a day off work this week to spend with me and the kids when she found out I'd have to be on my own. Natalie has been here every day she possibly could be. My mom takes time from work as often as she can as well. Those that haven't been able to come see me have been praying for me and checking up on me and sending their love and positivity. For all of this, I am grateful.
