Me and the DMD's

Can you limbo? I have never tried but I once again find myself in limbo land with MS treatments. Therefore I have to assume that I'm good at limbo. This is a post about my ongoing relationship with the disease modifying drugs for MS.

At the beginning of September I finally gave up on Rebif, my second try of the "front line" disease modifying drugs for Multiple Sclerosis. There are four "front line" drugs, and three of them are pretty much the same. I had to stop Rebif because after months of on-again-off-again monitoring of my liver, my neruo decided that the long term health of my liver was more important than the minimally modifying nature of the Rebif.

Having tried two main treatments without success, I became eligible for a second line treatment - the daily pill, Gilenya or the once a month infusion of Tysabri. My opinion is that either of these treatments are considered to be secondary because they are newer and each pose certain risks to the patient (risks greater than the front line four). A screening process is necessary before beginning either Gilenya or Tysabri and I failed one for sure.

I am not eligible for the daily pill as an abnormal EKG, discovered during the screening process, is a definite contra-indication. I also tested positive for JC virus anti-bodies which is a warning for the once a month infusion (JC virus can lead to PML, a brain infection).

Are you confused? I am.

I have an MRI scheduled in December and a follow-up appointment with my neuro to discuss the risk involved with Tysabri. This means that Tysabri isn't completely off the table, but it can't be taken without dialogue.

Not all types of MS offer the opportunity to treat the disease course with a disease modifying drug. Having relapsing-remitting MS, I have the chance to lessen relapses with drugs. And I'm afraid that maybe my chances have run out. If you have been following along on my journey, you may remember that I don't like to not be on a drug. For me, as painful and scary as the drugs can be, they fit my lifestyle. I don't feel that I am in a position to research and introduce holistic or alternative options. These require energy, thought and financial resources that I don't have.

I'll let you know how it goes.

Emily

Keep a Lid On It

I'm working hard to keep a lid on it. The jar represents my life, a clear jar, so that I can look at it from the outside without getting right in the mix. The mix in the jar is all of the crap life serves up. The contents of the jar aren't packed in layers - it's all mixed around. Because the jar is clear, I am able to look at and think about the contents, analyze it, share it...I just can't dump the stuff (because then what would I do with my life?).

The key to keeping things in the jar is to not keep the lid on too tight, or too loose. Too tight and it could explode - glass and stress (crap) everywhere...really hard to put back together. If the lid is loose, it could fall off when I least expect it, releasing either a slow leak or a large spill.

So I keep the lid on...just right.

And right now the jar is full - again.

If you've been hanging around here with me for a couple of years, you may know that my jar always seems full. MS, infertility, life threatening infections, saying goodbye to work, saying goodbye to grandparents, depression...and that's just me. Jason has had his share of challenges this year as well.

Now we have a new challenge. As of last month, we (Jason and my family, Dude, Ladyfingers, Andrea, B and R&R) are facing cancer. My dad has brain cancer. As of today, he is not quite at the halfway point of what is considered his radical radiation treatment. Lots of radiation to his whole brain, with the goal of eliminating the cancer which has invaded major facial nerves.

I have added this to my jar...
and I keep the lid on...just right.

What Do You Do?

As of late, I've been mixing up the way I introduce myself to new people. I don't mean "introduce" in the basic sense of the word, but when a new person asks me what I "do" (when "do" refers to employment) I don't know what to say. Should I disclose my disease? I usually do, but lately I've wondered if it makes other people uncomfortable.

My response as of late seems to be a result of being "stuck" in the moment, and not wanting to leave the other person at a loss for words. For example, for a recent group gathering, I prepared myself ahead of time...I knew what I wanted to say.  But when my turn came to introduce myself to the group, I found myself "stuck".  My response, after cocking my head and looking skyward, was ..."Nothing".

Um yeah. Nothing.

"Emily" Antoinette

In the moment, it was entertaining to the group, but I didn't have a chance to backtrack or explain that it isn't as it sounds. I had wanted to say something about indulging my hobbies (indulging wasn't the exact word I had planned, and in hindsight I'm very glad I didn't say "indulging" as it sounds almost as snotty as "nothing"). But it's the truth - I don't do anything in an official capacity, and I couldn't if I tried.

How can I tell someone that I am home everyday because my days (even hours) are unpredictable and therefore prevent me from working? My MS is invisible to most people, so saying that I am on disability seems just as awkward as "nothing".

So does my answer of  "nothing" make the asker uncomfortable?

If I respond,  "I'm on disability" does this make the asker uncomfortable?

Does the answer, "I have MS and am unable to work" make the asker uncomfortable?

Does it really matter?

Maybe I think too much.

I am especially glad that I'm not in a position of deciding if I should disclose to my employer (current or future). I already feel bad that I had to leave my job when all of this came down.