Gilenya.

My last post was titled “It’s Been Awhile,” but who knew it would take me 15 months to get back into the groove of writing. I’m hoping to update more often because I have quite a lot to say.

In the past 15 months a lot has happened. I started working full-time, started taking Betaseron, stopped taking Betaseron, started Tysabri, stopped Tysabri, had flare-ups roughly every 3 months, developed 3 new lesions, and decided to start Gilenya, or as Dr. C calls it, The Pill.

Gilenya is the spark I needed to get my fingers back on the keyboard. I guess it’s the newness of the drug and all its big promises that has me ready to document the changes of my body in the hope of looking back in a few months and seeing actual improvement in my condition.

Over the next few days or weeks I will do more in-depth entries about the other occurrences, but this entry is about Gilenya.

First off, I’m terrified about starting a new drug. This feeling isn’t exclusive to Gilenya, but seems stronger because it’s not just new to me, but it’s new to everyone. Gilenya (fingolimod) was approved by the FDA in September 2010 and is the first oral disease-modifying treatment. It’s not a cure. However, it is designed to slow down the progression of the disease and reduce the number of flare-ups for folks with relapsing forms of the disease. It’s also believed to make day-to-day life easier, which is a major plus for the drug. Oh, and it’s a pill! Personally, I don’t miss the needles and I’m sure every person that has chosen to try Gilenya absolutely agrees.

But with all drugs, there are risks. According to the Gilenya.com Patient Medication Guide:

GILENYA may cause serious side effects, including:

· Slow Heart Rate (bradycardia or bradyarrhythmia) when you start taking GILENYA.

GILENYA can cause your heart rate to slow down, especially after you take the first dose. Your heart rate will usually slow down the most about 6 hours after you take your first dose of GILENYA. You might feel dizzy or tired or be aware of a slow or irregular heartbeat if you heart rate slows down. Usually, if you experience these types of symptoms due to the slowing down of your heart rate, they will occur during the first 6 hours after the first dose.

Your doctor will watch you for the first 6 hours after you take the first dose to see if you have any serious side effects. Your slow heart rate will usually return to normal within 1 month after you start taking GILENYA.

· Infections.

GILENYA can increase your risk of serious infections. GILENYA lowers the number of white blood cells (lymphocytes) in your blood. This will usually go back to normal within 2 months of stopping treatment. Your doctor may do a blood test before you start taking GILENYA.

· A problem with your vision called macular edema.

Macular edema can cause some of the same vision symptoms as an MS attack (optic neuritis). You may not notice any symptoms with macular edema. Macular edema usually starts in the first 3 to 4 months after you start taking GILENYA. Your doctor should test your vision before you start taking GILENYA and 3 to 4 months after you start taking GILENYA, or any time you notice vision changes during treatment with GILENYA. Your risk of macular edema may be higher if you have diabetes or have had an inflammation of your eye called uveitis.

· Breathing problems.

Some people who take GILENYA have shortness of breath. Call your doctor right away if you have trouble breathing.

· Liver problems.

GILENYA may cause liver problems. Your doctor should do blood tests to check your liver before you start taking GILENYA.

Evidence of these problems and minor side-effects include:

• dizziness

• tiredness

• a slow or irregular heartbeat

• fever

• tiredness

• body aches

• chills

• nausea

• vomiting

• blurriness or shadows in the center of your vision

• a blind spot in the center of your vision

• sensitivity to light

• unusually colored (tinted) vision

• nausea

• vomiting

• stomach pain

• loss of appetite

• tiredness

• your skin or the whites of your eyes turn yellow

• dark urine

• headache

• flu

• diarrhea

• back pain

• abnormal liver tests

• cough

With this very long list of (known) things that could possibly go wrong, I think I have every right to be terrified. Don’t I? I’m definitely going to start the medication tomorrow, but I’m still worried.

You see, I have a history of being allergic to or exhibiting rare side-effects of medications. In college I was prescribed a mood stabilizer that made me spontaneously burst into tears. No one believed it was the drug. Finally I convince my doctor to call the drug company and “spontaneous tearfulness” was one of the rare side-effects. It’s so rare that they didn’t have to list it in the prescribing information. Or, my weird allergies to gadolinium, Vioxx (this was before the recalls and both my parents and doctor told me that my symptoms were made up), Cymbalta, Avonex, and Tysabri. There are others of course, but these stand out because I was told that I wouldn’t have any real problems. Well, no significant problems, but I did.

So I’m terrified that Gilenya will join this group and leave me blind and unable to breathe.

However, I am going to my doctor’s office tomorrow morning and I’m going to swallow that little capsule. I’m gonna sit there for 6-7 hours, reading, writing, listening to music, and munching on snacks. Nothing is going to go wrong. I’m not going to be allergic, and this medication will work for me.

In spite of all my fears, I sincerely believe that Gilenya will make a positive difference in my life. I look forward to the changes and am excited to write about them here.

And that’s my plan. I’m going to do periodic posts titled “Gilenya: Day XX” that will include a list of medications, symptoms, mood, etc. I’d like to promise that I will post daily, but I’m aiming for at least weekly. Hopefully after a few weeks or months there will be definitive proof of the effect of Gilenya on my MS.

Fingers crossed.

The truth.

I know I promised a detailed post about all the tests and procedures that I endured during my last hospital stay, but I don’t know when or if it will happen. Even writing this has meant lots of deleting and restarting and giving up. And I know why. There are a few things about my stay at the hospital that I have been afraid of admitting and no matter how hard I try, I am incapable of composing anything post-worthy that excludes these facts. So, if I ever want to update this blog again, I need to be upfront and honest about everything that’s happening.

1. The doctors think there is something else going on. Not that I don’t have multiple sclerosis, but that I have something AND multiple sclerosis. Most of the testing was done to find this mystery condition (including lupus and vasculitis), but with everything happening no one bothered to tell me what they found, if anything. To make matters worse, last week I got a call from the office of a rheumatologist who couldn’t tell me anything other than “your neurologist wants you to see us about a possible autoimmune condition.” Um, I already have an autoimmune condition, is this about a new one? Silence.
2. I have had an excruciating headache for almost a month. It’s not getting better and not responding to any treatment. The worst part of this headache is that it has spikes and will suddenly become nearly unbearable. This means that even if I wake up feeling good, at any moment I could be struck with sharp, stabbing pains that last the rest of the day. It also means that I am spending more time in bed and things like eating, getting dressed, and doing chores just aren’t happening.
3. At this time, I am not treating my MS. While in the hospital, I spent a lot of time thinking about the progression of my illness and how much sicker I’ve been since I started treatments. I might be wrong, but I think all the drugs and vitamins may have something to do with how I feel. While at the hospital, they suggested I may be interferon-intolerant and stopped the Betaseron. When I got home, I stopped everything else. I can’t say it’s the best decision, but until I have more answers about what’s going on, I’ll endure my symptoms.
4. I’m more afraid than I have ever been before. I think this is the main reason that I keep putting off updating the blog. I can’t write about my time at the hospital or my life right now and hide the fact that I am terrified of what my life is becoming. Between the pain, fatigue, and sudden acute symptoms (blindness, inability to walk), I’m starting to question the plausibility of living a “normal” life. Seriously, how can I work like this? I also questioned whether I would make it home. I’m not trying to sound defeated or be overly dramatic, it’s just how I felt.

{exhale} When I got my diagnosis and started this blog, I never expected things to be so difficult so quickly, but they are. I’d be lying if I said that I’m handling things well, but I’m not. I have no idea what is going on with my body, I’m afraid of it getting worse, and my quality of life is pretty much gone. It’s not supposed to be like this and having the doctors agree with me but not offer answers isn’t comforting at all. I see the rheumatologist next Monday and my neurologist next Tuesday, hopefully I’ll know more then.

On being fat and temporarily-abled

I’ve been mulling over something for quite a while and I think I’m finally ready to put it all down. I’ve been worried about writing this because I do not want to offend anyone and if my language is hurtful, please tell me. This is something that I’ve been struggling with and I hope to work through this without alienating anyone. I’ve been having a hard time with being fat and needing a cane.

As a fat woman and a self-proclaimed fat activist, I am extremely conscious of my surroundings and the stereotypes associated with being fat. A very dear virtual-friend coined the term “death-fat” for those of us that the medical field call “morbidly obese.” I love the term death-fat because it sums up all the worries and stress that are wrongly associated with people of size. By looking at an arbitrary correlation of height and weight, doctors are ready to diagnose millions of people with diseases like hypertension and diabetes. Interestingly, there are tons of studies that have proven that weight has nothing to do with hypertension or diabetes, a fact that most of us have at least anecdotal evidence to support. Take me for example, I am about 300 lbs and I don’t have either disease. Moreover, the extreme fat-bias spouted by many doctors is a major reason why my diagnosis took so long. No matter what the symptom- pain, vision loss, fatigue, dizziness, etc- doctors suggested that weight loss would solve all my problems. Yeah, I’m still wondering how much I need to lose in order to see again!

Back to my original point, being death-fat has made me particularly sensitive to how others view me and I’ve taken great pleasure in beating the stereotypes. It is important that I appear healthy, nimble, and strong. So, imagine my difficulty when I started needing a cane.

Now, let me be clear that I try hard to be a full supporter of people with different physical abilities and challenges. I don’t think twice about giving up my seat, making sure a venue is accessible, or (in college) advocating for a more accessible campus. Before my current situation, I would not have considered myself an ablest. But when I think about my feelings surrounding needing a cane, I realize that something within me feels shame for being fat and needing a cane. Yes, I have good reason for using it, but it is hard to accept that others may see the cane and think I use it because I am fat. I have become one of those fat-activist who gets caught up on health or appearing healthy, and I forget that ability is not always in our control and there is nothing wrong with having physical differences, regardless of size or shape. I am not happy about this.

How can I call myself a fat-activist and a supporter of people with disabilities, when I have such strong emotions against being a member of both clubs? I can honestly say that if I had one or the other I probably wouldn’t be writing this, but since I’m not losing 150+ lbs overnight and the MS isn’t going away, I have to deal with what’s going on. I have to ignore what others may think of me and take care of myself. And I am. I love my cane and am grateful that I have it.

But there’s still this internal nagging. I feel so ashamed for all the years that I reveled in being 300+ lbs and not having any restrictions. Every time I subconsciously ranked my self higher than another fat person because I could walk without trouble or I was healthy, I violated everything I believe in. I am sorry for that. It is wrong to judge people for their ability or size. And now I know better. I know that abilities are temporary and I am grateful for each day I get whether I can walk or not.

I can’t tell you how awful it felt when I recognized what was going on within me and I hope that anyone who I have discriminated against directly or indirectly will accept my humble apology. I am truly sorry.

I also want to add, that now that my symptoms are so heightened and I often get dizziness or my vision is blurry, I am grateful for the assistance that the cane provides.

This all just became so real.

Despite knowing I had MS since March 5 and expecting I had MS since February 26, I guess I still hadn't accepted the diagnosis. I say this because I just signed for the first set of injections. They were delivered to my office by UPS, as expected, and when he had me the box it felt like someone had just punched me in the gut. I stood there looking at the box in total shock. I really do have MS and I really do have to give myself weekly injections.

The box itself isn't very big, 8 or 9 inches high and wide, and less than a foot long. It's sealed with "Tamper Evident Tape" and has "Perishable Open Upon Receipt" printed in big red letters on the side. The box is cold to the touch. I opened it and inside is a white foam cooler that takes up the entire box. I pulled the lid off the cooler and inside, sitting on top of two ice packs, is four pre-filled syringes of Avonex. They are in light-shielding packaging, but the contents are clear.

I picked it up to transfer them to the office fridge and immediately, the tears started. I couldn't help it. The whole scenario was so foreign yet I could feel my mind and body registering that behavior. Creating a habit. I slid the package onto the top shelf of the refrigerator and looked at it like a kid watching a popcorn bag inflate in the microwave. I closed the door and returned to the my desk and shame washed over me. Although I've been very open and honest about everything going on, I sudden didn't want anyone to see the injections or know that I needed them. I grabbed a paper bag, tape, and a Sharpie from my desk and proceeded to conceal the medicine. I labeled it "DO NOT TOUCH" and sealed it with packing tape.

And now I'm here, sitting at my desk trying not to think about the secret in the fridge and trying not to cry. But I don't know why. I've been so happy and so ready to tackle this head on and now I'm afraid and ashamed. I'm not a stranger to tough diagnoses or long-term treatment, but there's something about giving myself injections or even needing to do it, that has triggered me. Hopefully, this will go away before I meet with the nurse to learn how to administer the medicine (should happen next week). The nurse doesn't need to see me breakdown.