Gilenya, Day Thirty-Six

First of all I just need to say, I have the best boss in the whole world!!! You might think you do, but no, I do. I am completely out of all my paid leave time, both vacation and sick leave.  I haven't been able to get back to a normal work schedule since I started the Gilenya because of the crazy Sleepiness. I can usually get in a 6-8 hour work day, which is a bit short of our 10 hour day. I have been working on the Annual Report at home, on the weekends, but I was still short hours last pay period. Financially, I can juggle, being short a few hours, but I was going to be really short for this pay period. Then my boss donated 100 hours of his sick leave to me. His incredible generosity has left me completely speechless, has reduced my stress levels immeasurably. I can begin to believe the affirmation that I have been whispering all week: "Things work out. It will all work out."  

Wednesday, we had our first Board Meeting since I have been on the Gilenya, and it didn't go well, at least for me.  My boss thought that it was a good meeting.  I was not on top of things, and halfway through the meeting I got ran into the M.S. fatigue wall. In the ten years I have been doing these monthly meetings, I have been able prepare and balance my responsibilities, as well as postpone or skip the interferon shots so I would never bottom out during a meeting, or a retreat, or a grand opening, or a city council presentation. Wednesday afternoon I ran into the fatigue wall so hard that even the simple act of typing hurt. At one point my ears started buzzing and I was seeing stars I was so lightheaded.    


When the meeting was over, everyone was out the door before I could blink, and so I couldn't ask anyone for help clearing the meeting away. Usually, my coworkers are really good about volunteering to help me with both the set-up and clean-up. I really do have great coworkers, but this meeting went late, and everyone had places they needed to be. I did it myself, which is not a big deal, it's my job and I usually can do it myself, but I had to stop and rest so many times it took twice the time is should have. I was at work until 8:30, which isn't even close to the latest I've ever been there, but as it got later and I got more tired I became concerned about driving home. Home just felt so very far away. I cried the whole drive home. When I got home I realized that I still needed to call my mom, because it was her birthday. Something that should have been happy, felt like one more hurdle I had to get over.  Now, I'm realizing that I missed a whole bunch of birthdays this week.  I'm such a bad friend. What is the statute of limitations on writing Happy Birthday on someone's facebook wall? 

Impressions: This has been an emotional, stressful, joyful, exhausting week. I have been letting myself get stressed about my fears: letting people down at work, letting my friends and family down, the piling medical bill, and I have been hyper-focused on my weaknesses, my extended sleeping schedule, the piling medical bills.  However, I am beginning to get a flicker of fear that the sleep issue and the reduced stamina might not get much better as I continue with the Gilenya. Every time something like this happens I go through the process of accepting that Multiple Sclerosis is disabling, and my abilities will be constantly changing. What I could do yesterday, I might not be able to do today.

Valentine's Day & Gilenya, Day Twenty-Seven

I had my one-month check-up with my neurologist. (Just a few days early.) He seemed relieved that I haven't dropped dead from the Gilenya, and quite frankly, so am I.  :) I think he is concerned about all the press around the 11 deaths (or 84 deaths, depending upon your sources) related to the Gilenya. Most of the deaths were apparently unattended, and since I live with only a cat, he is concerned.  Since my heart rate is still dropping for an hour or two after I take the Gilenya, my doctor thinks it would be best to take it in the afternoon, while I am still at work. That way if I do have an emergency medical event, I will be around coworkers (who have been so supportive through all of my absences, love them!) who can help get me to medical attention, at least during the work week. He's a smart man, my doctor. I have been told, a few times in the past that, I always think up the worst possible scenario, and I have to admit, I have been letting my imagination go wild, so it was nice to have this logical (rather obvious, but I couldn't see it) solution presented to stop the "what ifs" that were floating around my mind on dark and stormy nights.    

  Unike Toonces, Myfanwy can't drive me to the emergency room.  

My blood pressure is too high, but he wants to wait a week or two to see if it drops back down to normal on it's own since it is very obvious that the Gilenya is causing it.(At my previous visit, when the MA took my blood pressure he told me it was "perfect, just like it always is- and I am annoyed that I no-longer have a medically perfect thing to brag about.)  My liver levels are scary high, and he wants me to get them checked every two weeks, and then see me in another month.  He said that if the liver levels don't get much lower soon, I will need to stop the Gilenya. 

I have been playing the elevated liver levels game for over a year now. Rebif was just as bad for my liver as Gilenya is. I have read quite a bit on how to lower liver levels with diet, and have had moderate success the last couple months of the year (2011). I kind of forgot to keep it up with the new treatment.  So, back to beets (yuck) and artichokes, asparagus, avocados, garlic, grapefruit, fennel (yum), and warm lemon water first thing, even before breakfast, in the morning. I need to investigate juicers. There are so many juice recipes for liver cleansing that I want to try.


Additional concerning information from my labs, my Lymph % is 5.2, and the normal range is 22.0-44.0, and Lymph Abs is 0.4 and the normal range is 1.2-3.4.  This has something to do with the percentage of white blood cells which are Lymph cells. There are two types of Lymph cells, T-Cells and B-Cells and they work together to protect the body from disease. With a Lymph cell percentage this low I am extremely vulnerable to disease.  My doctor said that these results are lower than he likes to see, but it is how Gilenya  works to modify the immune system so it will stop attacking the nervous system.    

Impressions: I like my doctor. I am one of his first patients on Gilenya, so we are learning about all this stuff together.  He reminded me that I need to be careful about public places, and being around sick people. He told me again that I need to stay away from public places. It was a good reminder, but I am going to really need to go to the grocery store soon. I am running out of food.


Side effects: Sleepiness, high blood pressure, slight dry cough, occasional heart fluttering that goes away if I do my yoga breathing. 

Gilenya, Day Twenty-two

I haven't gone anywhere but work and doctors' offices since January 19th (but I have done drive-thru for dinner on the way home from work) and am beginning to feel a little... not lonely, SO not lonely, but detached from the rest of the world. So detached am I, that I have stopped watching the news, and that concerns me. I've never been one-who-must-be-around-people-to-be-happy, and so feeling detached from the world isn't sad per se, (please, friends and family, if you ever read this, I do love you, but I am really enjoying my it's-okay-to-say-no-because-my-doctor-told-me-to time), but I recognize that the way I'm livings isn't the best way to be a citizen of the world.

 However, I also recognize that I haven't gotten sick at all, not sniffle or a sore throat, since I started on the Gilenya. My neurologist told me to treat myself as if I were a new-born baby for the first six months on the Gilenya, or until I know how my body will respond to lower white blood cell count, and I have, and it worked! Everyone should be as isolated during cold and flu season! Imagine a world without any colds or the flu!  

Even though I have been staying away from public places, I have felt well enough to go on a few walks around the neighborhood, just to get away from the apartment. It's been about a year and a half since I felt confident enough to walk any distance away from my home without fear of being struck immobile with fatigue (remember the M.S. fatigue wall?) and unable to get myself back. So, woo hoo Gilenya!

Impressions: We have had a pretty mild winter so far, no real snow, and I miss the snow. At this moment, I ache for it. I want to hear the squeak-crunch of boots breaking through the crust of a large snow drift. I want to walk in the muffled silence of falling snow.  Walking around in the grey-brown Utah winter doesn't inspire me to spontaneously quote Robert Frost, and all winter walks should inspire Robert Frost moments. It makes me so happy that I am complaining about something so ridiculous as no-snow-winters-are-not-poetic issues rather than M.S.-is-hard issues!    

Side effects: Sleepiness, still sleeping 10 hours or more a night; high blood pressure; pain in left shoulder, arm and wrist from return of previous M.S. flare-up. Tongue numb (can't taste anything) from return of previous MS flare-up.

Gilenya, Day Eighteen

I have become suspicious that at least one person on the Facebook Gilenya Support Group is a plant from Novartis. The reason I am suspicious is this person constantly proclaims that she has never had any side effects from the Gilenya, AND she almost always counters anyone's claim that they are having any side effect with with something like: "according to documents published by Norvartis, that isn't a side effect" or "M.S. causes that, it's not the Gilenya" or "How old are you? I have this problem because I'm getting old/going through menopause, it's not the Gilenya." This has really been upsetting to me for three reasons:

1. If I'm feeling something that I haven't felt before, or in a way that I haven't felt before, I usually try to find a reason for feeling the new thing, by eliminating the things that haven't changes and identifying the things that have, therefore I have already explored options related to other medications and/or symptoms of M.S. 
2. M.S. patients get enough discrediting of how they are feeling by doctors, nurses, friends, family members, coworkers and everyone else that I really, really think that it is important to have a safe place to share experiences and concerns. or ask questions without having to worry about someone saying "No, your experience is invalid." *
3. I can accept that my experience with Gilenya is not every person's experience with Gilenya, why can't you!?!

(* For the record, I don't believe that any of my friends, family, or coworkers have intentionally made me feel like my experiences aren't valid. It just happens... with the best of intentions. I understand that the various people that have done this are just trying to find a common ground, to make me feel not not-normal, which is nice of them but... Generally, when someone has asked me about how Multiple Sclerosis effects me and I tell them fatigue/word loss/mild stuttering/clumsiness/adverse reaction to heat/occasional numbness/vertigo, and their response is: "I feel/everyone feels that way/has that some of the time or all the time" which makes me feel like they think I'm just being a big baby and I that I need to get over myself already because what I'm feeling is not a big deal, because apparently everyone feels the same way from time to time.)

Impressions: I feel good overall and happy with Gilenya. I still don't think it is a miracle drug, but it improved my outlook. It is nice to not have to do shots anymore, and FINALLY, I only have a few  injection site reaction scars left. They have almost all faded away. Woo Hoo! I would post a photo of my injection-site-reaction-free thighs, but I'm not going to. :)

The larger-than-the-quarter puffy red spot on my thigh is an injection site reaction from when I was on Rebif,. Every time, I did a shot I got an injection site reaction. With three shots a week, my thighs were covered. As they fade, they would change from red and puffy to bruise-like.

Side Effects: Still Sleepy with a capital "S"; short-term memory loss; and vivid dreams.