Can you feel me?
This has been one heck of a week. It started on Monday morning when I woke up with absolutely *no* feeling in my hands. That was scary as hell. I could still move them… I just couldn’t feel them. Surprisingly, I could mostly type. Maybe it’s because I have it so hardwired into my muscle memory. I type most of the day 5 days a week.
I repeatedly asked Adam to take me to the emergency room, but he thought we should call the neurologist again (I had called prior to 9 am and again at 10:30 am) and wait to see what he wanted me to do. The answer came around 4 in the afternoon –come in on Tuesday to see him. So, that’s what we did.
Fortunately, when I woke up on Tuesday, I could feel my hands again. They were burning and stinging terribly, but at least they felt like they were *there.* Dr. J took out a safety pin and told me to close my eyes and let him know when I felt something. I didn’t really feel the pin until he was at the upper part of my arm. I felt a little pressure, but certainly no sharpness. I thought he was playing a trick on me or something. I really didn’t feel the pin at all on my hands. Adam, however, has assured me that I got poked repeatedly. This did not sit well with me.
Dr. J asked what I wanted to do. I told him that I’ve always had solu-medrol when I had an acute MS exacerbation, and was immediately told that there’s a national shortage of solu-medrol right now and that he couldn’t give me any without MRI proof that I have new, active lesions. (Maybe I’m being simple, but isn’t suddenly and completely losing feeling in your hands prima facie evidence that you do have new, active lesions in your spine?)
So, instead of putting me on an IV of corticosteroids, he prescribed a second medrol dose pack (I took 1 two weeks ago and it only got rid of the numbness on my left side.) and scheduled MRIs of my brain and spine for 3/21. I then see him on 3/25 to discuss what the MRI showed.
For anyone playing the, “How long has this shit been going on?” game, that means that it will have been 15 days between losing all feeling in my hands and a discussion about what my MRIs show. To me, that seems like a really long time for something as important as use of your hands. Moreover, I will have finished the medrol dose pack on 3/16, which, if it works, would make the new lesions inactive, right? I wish I understood his methods, but I have to trust that an MS Specialist knows more about this disease than I do.
He also was not pleased that this happened only 4 weeks after quitting Gilenya so that we can try to start a family. He said that depending on what we see on the MRI, we’d have to have “a very serious discussion.”
I said, “We haven’t even had the chance to start trying.” I’m not going to choose to not have a family because I had one ill-timed exacerbation. That’s just crazy. I’m guessing he might try to get me to go back on Copaxone, since you can be on it even during pregnancy. I only stopped using Copaxone because he said it wasn’t doing anything for me, but I felt so much better when I was on it, regardless of how much I loathed giving myself a nightly injection.
I have no idea what the right thing is to do, to be quite honest. The only thing I do know is that if he suggests that I should not get pregnant, after all the work I’ve done to prepare my body, I’ll be getting a second opinion.
Clean Bill Of Mental Health
During the time that I lost feeling in my hands, I also had a huge up-tick in seizure activity. I was so scared about how many seizures I was having that I actually contacted my therapist so that if any of them were pseudoseizures (like many were back when I was working with EMDR), I could do the work to stop them.
Well, it was good seeing Karolina for the first time in over 6 months if for no other reason than I enjoy talking with her. I was very pleased when she let me know that I am not experiencing pseudoseizures and that I am in such good mental health that she doesn’t want to hear from me again unless I am going through some difficulties and really need her or have some happy news to share with her.
I talked to her about all my worries (none of which were irrational automatic negative thoughts!) – about what could happen if I lose all feeling in my hands and I’m holding my baby, and she said that it’s a legitimate fear, so my best course of action is to be extra careful to pay attention to my body and be safe with the baby. You know. The baby I don’t actually have yet.
My current challenge is to only worry about handling things when there is actually something to deal with! No fighting ghosts. My real job in all of this is to be fully present in the now and to continue to practice good self-care. So far, so good.
Cheesy, gooey goodness…
On a completely different note: I’ve been thinking more and more about how I really miss cheese when we’re being strict with the paleo diet.
Don’t get me wrong — I know the plan was to be strict during lent, but when you’re dealing with an MS exacerbation, you don’t always have the time or energy to cook and clean the way you need to in order to be eating clean. I have to confess, I’ve had pizza this week… more than once. And I don’t regret it even a little.
I did, however, decide, on a whim to google “paleo cheese” and was surprised to see information pop up! Apparently, there are a kajillion different kinds of vegan cheese that also fall under our paleo guidelines. (Ok, so apparently a kajillion is a term in my mind that means “more than 20.”)
The one I’m looking the most forward to trying is this Velveeta-wannabe.
I’m hoping it’ll actually be melty and good to use when making enchiladas or jalapeno poppers.
I’ve also been thinking that I should create a graphic for the Paleo Compendium that folks can use to link to it.
MS Walk 2014 – Chicago Lakefront
It’s been a few years since I participated in the yearly fundraising efforts of the National MS Society because of seizures. For almost 5 years, seizures stopped me from feeling comfortable with exercising. Heck, I didn’t feel comfortable even walking anywhere alone. I didn’t feel safe. Fortunately, this year, I’ve overcome that fear.
Nowadays, I regularly hit the gym 4 days a week at least. Some days, I’m even so awesome that I can bike 12 miles in 45 minutes! 🙂 But I’ve also had a few days here and there where I’ve ended up seizing while on an elliptical strider or during weightlifting, and have had to go home. 😦 At least I tried! No matter what I’m doing when I’m at the gym, the goal is to honor my body, so I work out with Adam and am very careful not to over-do it.
Yesterday, I created a team for MS Walk 2014! It’s Team MS EL Redux, named after the support group that I participate in on Facebook. You don’t have to be in the group to join us or even in Chicago! You can be a virtual participant and help us raise funds if you’d like to.
I also personally registered both Adam and me for the walk. Here’s a link to my personal fundraising page. I’d really appreciate it if you would donate! And if you don’t have the funds to donate, don’t sweat it. I’ve been there. Please share the link! Every little bit of promotion helps!
Here’s a shorter link: http://main.nationalmssociety.org/goto/rachaelshapiromajka
Hope you’re having a great day! Thanks for stopping by. ❤