Tag Archives: gilenya

My Future’s In My Hands

Posted in Just Life., Multiple Sclerosis, Paleo Diet, Recipes by

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.”)

To celebrate this, I created another board on the Paleo Compendium just for paleo cheeses.

The one I’m looking the most forward to trying is this Velveeta-wannabe.
vegveeta

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. ❤

Thoughts…

Posted in Just Life., Multiple Sclerosis, Seizure Disorder by

About being an inspiration…

It’s been a weird and difficult few days. I’ve just been acting normally, but for some unknown reason, I’ve been told by 4 separate friends in separate conversations in the last 2 days that I’m “an inspiration” to them. They usually follow that up by saying that most people are so fake on Facebook, and that it’s refreshing that I’m so real, showing people what it’s really like to deal with MS…

On the one hand, if reading about my struggles makes them feel empowered to do more with their lives and to be appreciative of their health, I think that’s a good thing.

On the other hand, when you’ve been having an MS relapse complete with complex seizures that you’re handling alone while your husband is working 13-14 hour days, the words, “You’re an inspiration,” sound a lot like “I feel so intensely sorry for you that I can’t contain it, but I don’t want to make you feel worse.”

I remember, as a kid, actively wanting to be an inspiration to others. I always thought that it would occur because I’d done something noteworthy or genuinely helpful to humanity. I made sure to do all my homework. I practiced my instruments. I spent hours of my life writing up business plans for enterprises that never saw the light of day.

I never considered the possibility that simply maintaining a constructive attitude while continuing to exist with a disease that is often painful, lonely, and depressing would be how I made a positive difference in the world.

When I think about people thinking about me with that level of pity, it hurts… and yet, I remember the “hero” paper that I wrote about my grandma Gilda when I was in 12th grade. I didn’t pity her. I thought she was incredibly strong.

Grandma died the summer before my senior year. It was probably 3 months before I wrote that paper for AP English, but I thought about her every day. She had leukemia for 12 years, despite the fact that when she was diagnosed, they gave her 6 months. To put it in a way that will help you understand my point of view of her life, Grandma had been living with leukemia since I was 4. For all intents and purposes, I didn’t know her without it.

I didn’t find out about her illness until I was 8 or 9, and I found out accidentally. My mom was talking with her on the phone, and I overheard. She was not happy that I knew. Grandma didn’t tell anyone about her disease because she didn’t want anyone to treat her any differently. But anyone who has lived with an autoimmune disease can tell you — you need people to treat you differently for your own good. They don’t need to be coming over while they’re sick to visit you. They need to have more patience with you. They need to understand that sometimes hugs can hurt, and that it doesn’t mean you love them any less.

There are times when I wonder what Grandma would think about my blog or my raw, honest Facebook updates. I think she would be glad that I was reaching out for the support that I need, but I don’t think she’d want me to feel like I was only an inspiration because I am doing my best in spite of bad health.

The only thing I know for sure is that she always wanted me to feel safe and loved and happy. That’s what I wrote about in my paper… how even though she struggled with autoimmune disease, she still tried to do everything as if she were fine. She danced with Grandpa in the kitchen. She made good food. She was constantly making craft projects. She played with me, my brother, and our cousins, even after chemo. She didn’t let leukemia make her any less of a person. And I worry that I’ve let the seizure disorder rob me of some of my dignity and some of my self.

About being boring.

One of the things that’s very difficult for me to cope with is feeling boring. I can’t drive anywhere, so if I’m going somewhere, I have to take public transportation… but that costs money, and if I’ve had seizures within a week of the time I’m thinking about going somewhere, I get afraid that I’m going to get lost. The combination of my frugality and fear means that I usually don’t go anywhere if I don’t already have a purpose in mind.

To put things in context for you, since I was diagnosed with seizure disorder in 2008, I’ve left the house by myself and taken a bus somewhere exactly 3 times. Once, when we were living in Romeoville, I took a special shuttle to the mall for 3 of the longest, loneliest hours of my life. Since moving to Chicago proper, I’ve gone to an ophthalmologist appointment that Adam couldn’t get off work to take me to, and to the mall that’s 20 minutes from my apartment. I enjoyed the time at the coffee shop that came with that trip.

When I was younger, I did so much different stuff that my parents actually sat me down and made me drop several extra-curricular activities because they were worried I was going to have a nervous breakdown. Band, choir, BBYO, teaching Sunday school, Memphis Youth Symphony, confirmation classes, and that’s just what I can remember off the top of my head. I also was almost constantly online… but back then it was before the WWW. I would chat online with teenagers in my town for hours at a time. I didn’t care that it blocked the phone line.

In college, I started and ran a chapter of Phi Beta Fraternity. When I was in law school, I was part of the student bar association. I did community service projects. I spent endless hours reading case law and writing papers. And in my spare time, I went hiking with amazing people and tried my hand with performance art.

But since I’ve become disabled, I don’t feel like I do much at all. I foster kittens. I try to keep up with all of my FB friends and be supportive. I grocery shop and cook. I do laundry. But I’m not satisfied.

I know there’s more to life than this. I just feel like it’s just outside of my grasp.

Practicing guitar, piano, percussion, or voice seems agonizingly pointless, since there’s no one to play with… but I consistently want to do it until my inner monologue talks me out of it. I’m giving myself points for wanting to want to practice. It means I care enough to be uncomfortable with my lack of motion.

The thing that’s tough about it is that music has always been something that was both challenging and joyful. It meant sharing the experience with other people. It mattered that I practice because my individual performance affected the group’s performance as a whole. Now, it just feels like a way to remind myself about how isolated I am and how much my chops have slipped. I’ve done the Craigslist thing and have abandoned the idea of being the singer of a band. I mean, who wants to watch an overweight unknown 30-something woman trying to belt out rock n roll? I wouldn’t go to that show. I missed my opportunity there.

The only thing I can think that’s positive is in regard to learning guitar, because I’m hoping that eventually, I’ll songwrite for my kids. Having already mastered technique necessary to self-accompany will bring joy to my kids, in theory.

But what makes people interesting? It’s the things they do. And I’m not doing much besides housework, FB, and pinning things to the Paleo Compendium.

I think I need to find a good volunteer opportunity other than just fostering kittens. I need to get out of the house. I need to meet kind people. I want to help, and I know that one of the best ways to show gratitude for the good things in your life is to help folks who are in need. I guess I’ll hit up Volunteer Match.

About being realistic.

Of course, I wouldn’t be me if I didn’t try to take a step back and figure out why I’m such an emotional monster today.

First, I still have steroids in my bloodstream. A medrol dose pack stays active in your system for about a week after you’re done with it. Corticosteroids make you crazy. They just do. Add to that the chemical changes that come from stopping Gilenya and cutting my nortriptyline in half, and you’ve got my current craziness.

Don’t worry, I wasn’t having a bad reaction to Gilenya. I actually stopped this month so that Adam and I can start a family. Gilenya takes 2 months to completely wash out of your system, so there’s no thoughts of even trying until May at least. Adam wants me to keep everything regarding the impending pregnancy hush-hush until we’re actually 12 weeks pregnant. I think that’s totally reasonable. We don’t need an audience to our family planning. I just also think it’s important that I acknowledge that I’m not on any disease modifying drugs right now.

I think that I can reasonably say that I’m handling things mostly well. Rather than crawl into bed and mope, I’ve been cleaning, writing, and actively not self-harming. I thought about day drinking for a half a second today and decided that it would be the equivalent of feeding the beast. Instead, I dyed my hair and am slowly tackling the ginormous mountain of clean clothes that need folding.

Oh, and taking care of the dog, who needs to be taken out right now. I’ll never need to question whether I make a positive difference in Brisco’s life. 🙂 He’s a good dog.

Change is scary… but scary is good.

Posted in Just Life., Paleo Diet by

This year has been very important to me. I learned many lessons that I think will help me live a better life overall.

I learned about Automatic Negative Thoughts and how to challenge them. I learned about the importance of staying busy, even if it means doing things that I don’t particularly enjoy (like doing dishes or folding laundry). I was able to break my cycle of suicidal thinking, and I have learned that it is not only safe, but sometimes completely necessary to get out of the apartment and rely both on public transportation and my own direction sense.

If you don’t like something, change it. If you can’t change it, change your attitude.
-Maya Angelou

Since January, I have experienced far fewer seizures than I did during 2008-2012. When I finally stopped taking Cymbalta and Abilify in December (which was very difficult), I went from having 30+ seizures in a day to having them only when I’m dealing with a relapse or pseudoexacerbation of my MS.

At first blush, and in truth, this seemed like a wonderful thing… but it created a strange emptiness that was immediately filled with obsessive thoughts of my worthlessness and a desire to end my life. Don’t get me wrong, I’m not pining for seizures – but suddenly, I saw what my life had been for 4 years — primarily Facebooking and doing very little else, sitting on the couch — and often sleeping through days. I suddenly had a lot of free time where I wasn’t either shaking or needing to sleep. And that was a good thing.

Nowadays, I am able to be a mostly-effective housewife. I do dishes. I do laundry. I clean. I grocery shop. I cook. Having the ability to do these things has made me feel as though I am finally a productive member of this family, and not someone who simply needs to be cared for 24/7.

Thanks to working with a great therapist, I’m now able to say (and genuinely believe) that I am worthy of life and happiness simply because I am a unique human being, and there will never be another one of me in all of time and space. I no longer think that what I do for other people or how much money I earn is an appropriate test for how “good” a person I am.

For several months this year, I tried to get back into the working world with no success. I sent out at least 3-5 resumes a day, and I got 1 phone interview in 6 months. 1. I could blame the economy… I could blame the fact that it’s been 5 years since I had “real” work. I could blame this blog “outting” my MS status to the world…but at the end of the day, I really believe that things happen the way they need to, as opposed to the way that we want it. Adam’s job pays enough for us to live comfortably, without me needing to add the stress of work (and getting to and from work) into the equation. As a housewife, I’m able to make the act of coming home into something genuinely pleasant for Adam, and I appreciate that he values my efforts.

The changes in our life must come from the impossibility to live otherwise than according to the demands of our conscience not from our mental resolution to try a new form of life.
-Leo Tolstoy

One of the good things about my lack of employment is that I won’t have to worry about when to go on maternity leave. I don’t have a job dictating when Adam and I can start a family. Unfortunately, I am on a lot of medication… and none of those medications are pregnancy-friendly.

When I stopped taking Cymbalta and Abilify, it was for 2 reasons – 1.) because I wanted my Video EEG to be as accurate as possible and 2.) because I wanted to get pregnant. If I hadn’t wanted to have a baby, I might not have had the willpower to quit, and I’d still be having seizures multiple times per day. Wanting to be a mother has helped propel me to do things that have been very good for me.

Now that Adam and I are really serious about it, I’m looking at what else I have to quit, and I have to admit I’m a little scared.

I have to quit Gilenya and wait at least 2 months before even trying to get pregnant, or else it will negatively affect the fetus. …so no DMD slowing down my MS during the pregnancy. I also can’t take it after the baby is born if I want to breastfeed (which I do). Fortunately, MS is supposed to be better during pregnancy. I can only hope. I just received my Gilenya for January, so I am planning to stop taking it either at the end of this pack or the next.

The daily omeprazole that I take for GERD has a category C rating by the FDA. This rating means that it is not known whether a particular medication will cause harm to an unborn baby if the medication is taken during pregnancy. This also means that, if possible, other alternative therapies should be tried. So, I’ll be asking my doctor about finding a new drug. I really hope there’s something to help with GERD that is pregnancy-friendly. I also know that breastfeeding while on omeprazole is a no-no.

The nightly 50 mg of nortriptyline that I take for MS pain has not been formally assigned to a pregnancy category by the FDA. Limb reduction anomalies (meaning babies being born with short arms or legs) have been reported in humans exposed to nortriptyline, however, no firm association has been made. The prevailing wisdom is that nortriptyline should only be taken during pregnancy when there are no alternatives and benefit outweighs risk. …so I need to get off this too. I also know you can’t breastfeed on it. I’m not sure how I’m going to manage the sometimes intense pain that I have in my legs and back without this, but I’m willing to hurt if it means that our baby will be healthy.

Then there are my hypertension medications – Hydrocholrathiazide and Amlodipine. Hydrochlorothiazide is considered category B by the FDA (same as Tylenol). Retrospective reviews of data have shown an increased risk of malformations associated with thiazide diuretics, so the drug should be used during pregnancy only if clearly needed. Amlodipine has been assigned to pregnancy category C by the FDA and should only be given during pregnancy when benefit outweighs risk. This means that I need to stop taking both of these medications, but I still must have my hypertension in check if the pregnancy is going to go well.

I am trying, right now, to get my blood pressure under control through diet and exercise. That’s a big part of why Adam and I are doing a Whole30 in January and are committing to 45 minutes of daily exercise. Science suggests that by eating less than 2000 mg of sodium a day and increasing my physical activity to 45 minutes of cardio at least 4 times a week, I should be able to conquer my hypertension. My cardiologist wants me to try to aim for 1500 mg if I can. I’m going to do my best.

And then, lastly, and most obviously, there’s my birth control pill. I think I’m most excited (and least afraid) about quitting this. I’ve been on hormonal birth control since I started getting ovarian cysts when I was 12… so it’s been 20 years. It feels like time. I am not, however, going to stop taking it until after I’ve already been off of Gilenya for 2 full months. I’m 2 weeks away from the end of my current 3 month pack, so I figure I’ll get it refilled one more time, and we can start trying in April, if everything goes as planned.

For everyone playing along at home, that means that at the absolute earliest we’d be due in January or February of next year, which feels like forever, even though it’s only a year out. To be really honest, I don’t expect to get pregnant in our first month or two of trying. Thinking this way is the only way I can convince myself that I’m on a good schedule and that I won’t be due during the coldest months of the year. However, since God has a totally sick sense of humor, I’m fully expecting that I’ll be due in late August or early September, in 100+ degree weather. I’m praying for a due date in October or June. I’m pretty sure those are the only 2 months that are genuinely nice in Chicago. Then again, I’m also pretty sure that the baby won’t care what it’s like outside, and it’ll come when it comes.

Sometimes if you want to see a change for the better, you have to take things into your own hands.
-Clint Eastwood

Aside from taking a disease modifying drug to slow progression, there’s not a whole lot that a person with MS can do to improve their physical condition. Sure, exercise is good, and it definitely helps with dealing with muscle spasms and weakness, but it won’t slow down progression. The same is true of diet. For several months in 2011, and a few months here-and-there since, I kept a paleo diet in an effort to reduce inflammation in my body and to be healthier. In early 2011, I was without Copaxone and was trying to manage the disease through diet. I found out that the paleo diet doesn’t stop progression either, but it did help me lose weight and have less pain.

Because of this, Adam and I have made the commitment to a January Whole30 and 45 minutes of daily exercise in an effort to both jump-start our fitness and to help prepare me for coming off of all of these medications.

The secret to making it through a Whole30 is good planning. I’ve created a 30 day meal plan to help us (and others) have a successful month. It’s not 100% finished yet. I still need to add a few meals to the last week. I’ve also left lunches open because I figure that we’ll either have leftovers or a salad of some sort. I’m not sure when we’ll have leftovers and when we won’t, or whether I’ll eat the leftovers for lunch or Adam will, so I didn’t add anything there. The emptiness is intentional — a feature, not a bug! 🙂 I also left off dessert/snacks because I figure everyone who is doing a Whole30 knows that they can have fresh fruit or veggies whenever they want them. I thought the plan needed some wiggle room for spur-of-the-moment personal desires.

As for working out, I’ve been dividing my cardio time among the elliptical trainer, the stationary bike, and walking on the treadmill. I’m not sure if we’re planning to weight train during January as well. That’s kind of up in the air at the moment. I’m also hoping to add swimming to the mix.

When I finish with the meal plan, I’m going to create weekly grocery lists, and I’ll share those here too.

The most difficult thing is the decision to act, the rest is merely tenacity. The fears are paper tigers. You can do anything you decide to do. You can act to change and control your life; and the procedure, the process is its own reward.
-Amelia Earhart

When I think about the life I’ve lived so far, the best and most important things I’ve ever done have made me truly afraid. And rather than the acts themselves, it was the experience of conquering the fear that made me feel truly alive. I remember a time when I couldn’t sing in front of people without throwing up afterwards. I remember when I was terrified of living in an apartment by myself. I remember how scared I was the first time I drove a car… So, when I think about actually giving birth, and the earnest thought alone gives me goosebumps and makes me queasy, I’m pretty sure that means it’s going to be one of the most important things I will do in this life.

And every step towards it is another opportunity to kick fear’s ass.

Time Travel – Without The Doctor.

Posted in Just Life., Multiple Sclerosis, Seizure Disorder by

Prior to last night, it had been a long time since the last time I had time travel seizures. Yesterday, however was full up on wonkiness.

On the one hand, I’m very lucky that since I quit taking Cymbalta and Abilify in December of 2012, I’ve had several good weeks without any seizures at all, and that on the other weeks, the few seizures I did have were primarily simple partial seizures that made muscles in my face and neck behave incorrectly, as opposed to complex seizures that leave me feeling like I’ve been picked up and transported to another location while drugged.

On the other hand, there are some really good things about experiencing “time travel.” It gives me perspective on my life that I wouldn’t otherwise have.

For example: Yesterday, I remember the post-ictal confusion from one of the seizures fairly clearly… I thought I was 9 years old, that I had both Wordly Wise and long division homework to do (which was important!), and I had a very hard time accepting that my body was this big, that I was married (and my parents knew about it!), and that technology had come as far as it has. I was sure that Adam was super-rich because he had the biggest computer screen I’d ever seen. This was, of course, our television set which is hooked up to a desktop computer.

I actually asked Adam if his computer had Alf’s Geography Jam, because that and Carmen Sandiego were the best games we had on our computer at “my house” (otherwise known as my parents house, circa 1989), and I was pretty good at them. Needless to say, he laughed pretty hard at that one.

Anyway, getting back to that whole “perspective” thing: there were important lessons contained in last night’s episode for me.

1.) I was sure we were very wealthy, just based on looking around the living room.  Do you know what that means?  It means we are rich. We may be saving for a house, constantly checking and working on our budget, and living in an apartment in an area of town that is not the best… but my 9-year-old self’s idea of what it was to be rich has been achieved. I mean, we have more than 1 computer, a TV that fills most of a wall and also plays computer games, comfortable couches, and a dog who actually comes to me to snuggle when I call him. 9-year-old me thinks she hit the jackpot of possible futures…and that makes me happy.

2.) My husband is just unbelievably amazing and handsome and loving and perfect. During the whole situation, he didn’t once treat me like I was losing my mind. He spoke with me respectfully and patiently. He gave me hugs when I couldn’t stop crying because I was scared. (I didn’t know where I was or how to get home! Or why my back was tingling and burning. Or why my head and stomach hurt so much.) and apparently, I went through time travel multiple times yesterday.  (I only remember the last one.) I can’t begin to understand where his patience and compassion come from, but I am immensely grateful for both.

3.) “Little me” was very disappointed in the distinct lack of chocolate chip cookies in my home. I remember saying, “But I promised myself that when I was old enough and had my own place, I’d bake chocolate chip cookies all the time so I could have them whenever I wanted them.”  This morning, even though I know that it’s not good for my diet, I still feel compelled to bake them. (Don’t worry, I’m not going to walk to the grocery store today.)

4.) Seeing myself in the mirror, even after I’d been brought back to present time, felt like looking at a stranger. Inside I was like, “OH NO! I got old!” but I also thought that I had gotten a lot prettier. So, there’s a plus.  I didn’t judge myself negatively for my weight. It’s a practice that I’d like to continue.

5.) Cell phones are MAGIC. I think we’re all so used to them by now that they seem mundane, but from a 1989-1990 perspective, they are the coolest things ever. Adam tried to show me my phone when it was ringing, and I was like, “That’s not a phone.” Really, we have handheld computers that happen to be able to make phone calls from anywhere. (And of course, since I have my own and Adam has his own, we’re clearly bazillionaires.)

I titled today’s post “Time Travel – Without The Doctor” because yesterday, Adam didn’t use the Doctor Who theme song to help bring me back out of my confusion.  When I first began experiencing this kind of post-ictal confusion, it was the Doctor Who theme song that got me back to present-day Rae.  Instead, he used Spotify to play pop music that had just recently been released, to try to bring my memory back to present times.

I marveled at Spotify. I absolutely gawked. The ability to play whatever song you want, whenever you want to, on your TV? It blew my mind.

What really hit home for me from yesterday’s experience is that we are living in amazing times, where technology exceeds anything we could have imagined 25 years ago.  It makes me very hopeful for the future. It makes me very grateful for the present.

Surprisingly enough, this relapse isn’t being treated with solu-medrol… just a medrol dose pack. It’s been nearly 3 years since my last time with IV drips. I’m fairly certain that’s a good thing. I just am really hoping that the oral steroids kick this relapse’s ass.

This morning, my back is tingling/burning like crazy, thinking is like wading through a river of pudding, my left foot is numb in places, the top left part of my chest is so numb that when I touch there, I can only acknowledge pressure, and I’m still just happy that I’m living in today’s day and age and that I was able to get out of bed. (Even if I’m seriously considering a nap in a few minutes.)

For anyone that’s concerned, I’m still on Gilenya. I’ve almost finished my first month on it. I don’t know if it’s doing any good at all yet, but the few side effects that I’ve experienced are still better than the intense pain I experienced on Tecfidera. I’m also extremely grateful for the efficacy of a small amount of marijuana. It makes my back hurt a lot less and decreases my anxiety over numbness in other places in my body. I’m really looking forward to January, when it becomes legal for medicinal use here in Chicago and I can get a mini-vape like a Cannacig.

Hello, Gilenya…

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Gilenya

Hello, Gilenya!

Thursday, August 29, 2013, I started a new MS medication – Gilenya.

So far, the most annoying part of being on the once-a-day drug is that it required an initial observation period.  During your first dose, for your safety, you must be monitored for 6 hours.  For me, that meant being at the University of Chicago Medical Center infusion suite at 8 a.m. By 8:30, I had taken my first dose, and was sitting around waiting for anything to happen… anything at all.  Every hour, the nurses ran my vitals to make sure that my pulse wasn’t dropping to a worrisome level. The whole time I was at the hospital, my pulse stayed between 90 and 99 and my blood pressure remained in that annoying place where it tends to stay — just high enough to be considered high, despite taking medication, but not high enough to cause any concerns. By 3 p.m., Adam and I were back on the road to get home.

A few hours after Adam and I left the hospital, we went to the gym to do our regular Thursday afternoon cardio session. We both figured that if nothing had changed at the hospital, there was no good reason to take the day off from our physical fitness routine. Despite that hope, I started feeling really awful about 5 minutes into my usually 20 minute long jog on the elliptical trainer.  When Adam saw how hard I was pushing just to stay on the machine, he called it a day.  We went home and checked my pulse with the blood pressure wrist cuff… 68.  Now, 68 is a totally healthy pulse to have. It just happened to be 30 beats per minute less than what my regular resting heart rate was, so it made sense that I was dizzy and very tired. The Gilenya literature had let us know that pulse slowing could occur up to 24 hours after taking the first dose, so we followed the procedure we’d been given.

Adam called the Gilenya Go! program help line for me, and the nurse said to call my doctor… so we called. We were connected with the neurology resident that was on-call and were told that if my pulse dropped to close to 50 to call them back.  Thankfully, the lowest that my heart rate got that evening was 59.

Since that first night, I haven’t had any problems to speak of. My “normal” resting heart rate is now in the low 70s, and I figure that’s probably better for my body overall.  I haven’t had any other side effects that I can think of, and I’ve been enjoying having a medication for my MS that doesn’t appear to be negatively affecting me at all.

Of course, nothing in life can be totally simple… the Universe had to spice it up.

FDA warns of PML case connected to Gilenya

It was literally the same day that I started this drug that a warning came out from the FDA that Gilenya may cause PML, a rare and often lethal brain infection caused by the John Cunningham (JC) virus that damages the fatty covering of the brain called myelin.

PML had previously only been associated with Tysabri, because developing PML is a known risk of taking the drug, and 2,582 Tysabri patients have been recorded as developing the infection.

Fortunately, Novartis, the maker of Gilenya, does not believe that the diagnosis of PML occurred because of the patient’s use of Gilenya. In a quote from MedPageToday.com, Novartis said “‘MRI reviewers’ had examined brain scans taken before the patient started on fingolimod and determined that the patient might already have had PML, [prior to starting Gilenya] because lesions seen in the scans were “atypical” in MS.”

So, I’m not worried about developing PML.

Side Effects?

Gilenya has some serious potential side effects: slowed heart rate, increased risk of serious infections, macular edema, breathing problems, liver problems, and increases in blood pressure. The most common side effects of Gilenya are headache, flu, diarrhea, back pain, abnormal liver tests, and cough.

So far, for me, I’ve only experienced a slowed heart rate. It makes working out a little more difficult, but overall, it seems benign.  The only thing I’m actually worried about is increased blood pressure, since I’m already hypertensive.

I’ll be sure to keep everyone in the loop and let you know if anything changes, but for right now, Gilenya seems great. 🙂