Good Day…Bad Day…just like everyday

I had my six month visit with my neurologist. We always talk about how I’m feeling, disease progression, insurance, next round of MRIs and what’s new in the world of Multiple Sclerosis. The good news is I’m doing really well. There are no signs that the disease is progressing and, until I have my MRI (which needs to be done by the end of the year), I will go on with this being my truth. My MS is not progressing….until it does. The bad part of the day was when the trial coordinator came in to talk with me about the trial I’ve been crossing everything for. I’m too healthy to be included. It’s strange being told I’m too healthy for anything and ,while I like hearing it, I’m kind of annoyed by it. Actually, I was really annoyed. Can’t a girl with MS get a break just because she has MS?! Actually, she can and I did. The trial coordinator left after she walked me to the checkout counter and told me to wait for her in the waiting room after I was done checking out. After about ten minutes, she came out and handed me a big bag and said a warm goodbye. I took a quick peek into the bag and without squealing, hurried out to my car. I drove home still unable to really look inside the bag. When I got home I opened one of the greatest, most appreciated gifts I’ve been given. Let’s just say I won’t be worrying about treating my MS for quite a while. So, while I often have bad days and just as often have good days, my day ended the way it usually does. I am thankfully blessed with wonderful reminders of how good things really are for me. It’s true that to see the good we’ve had to experience the bad. Multiple Sclerosis has proven to be a lesson of this principle in my life many times. I’ve decided that it will continue to do so because I will keep my eyes, ears and heart open to it.

I’m in! Well, I’m pretty sure I’m in! Ugh, I hope I’m in!

The trial coordinator called and talked with me about a Gilenya trial. I excitedly said yes and so she added my name to her list. She told me that she didn’t see any reason I would be excluded. Of course, like always, my brain only faintly heard her words because of all the worrying thoughts that have set up camp in my head like those snot creatures you see in the Mucinex commercials. I know that before you start Gilenya you go through a series of tests to make sure everything is working right in your body, except excessive clumsiness, forgetfulness, numbness and bladder voiding. Well, I should say excessive attempts at bladder voiding because if you’re constantly going you’re not really voiding, you’re just going. Anyway, all of these things are a normal part of MS….yay team! The things they check for before starting Gilenya are heart, eye and lung problems. There may be more but this is all my brain is coming up with right now. I haven’t noticed any eye or breathing issues and my blood pressure is always low so I should be good to go. The trial should start in about six to eight weeks so, until then, I pretty much have everything crossed that can be crossed. I’m thinking positive thoughts and hoping really hard that this will happen, all while trying to kick those annoying snot creatures out of my way!

Hello?

 

 

I’m trying really hard to be patient. This is hard for me. I bite into pizza before it cools and burn the roof of my mouth…every time. I always pull things out of the microwave and oven before the timer goes off. I could give example after example but I think it’s pretty clear. This is a test for me and I hate it!

I called my neurologists office and spoke with the trial coordinator.   I told her I wanted to enroll in a trial. My neurologist participates in quite a few trials so I’m thinking this should be an easy feat. Well, it’s been almost a week and I thought I would have heard back by now. I feel desperate about this so I’m sure that’s not making being patient any easier. I don’t know how long this process usually takes and I should have asked that question as well as a few others. I’ve looked on the government clinical trial site and found the perfect one for me AND my neurologist is on the participation list. Maybe I should have asked about this study specifically? Well, I’m whining and feeling sorry for myself but it’s so hard for me to wait for anything and waiting for this……argh!

 

Channeling Gilda

I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity. – Gilda Radner

Again, my life has decided to accelerate way too fast around a sharp turn and I’m suspended in that turn feeling dizzy from its brutal form. I thought things were going to go differently and that I could finally exhale slowly and effortlessly in this part of my life. I thought this was a part that I could control, even if only part of it. I was wrong and have been utterly surprised by life. I guess, to be fair, it is people or I should say persons that have me shocked and shaking my head. There are people out there who, driven by their want for success and financial aspirations, will lie, cheat and steal to get what they want. I’m bouncing between disbelief and anger and these emotions have me spinning, suspended in a place I don’t like. I know I will land safely and, although I may want to throw up for a while, I will be okay….well at least I better be. I’ve chosen to take what I see as control and try to join a clinical trial. This turn I speak of includes a definite insurance hurdle that I’ve had to jump too many times already and is the most stressful part of my situation. I don’t have the energy to go through it again! If I can get into a trial, I will have my medication and medical care with my neurologist. I am tired of someone behind a desk controlling a big part of my fate with MS. I want to feel like I have some control in this ride and right now I don’t and I’m spinning. I don’t know if this will happen because there is criteria that may exclude me. I also know that my MS can change at any time. Today, I can walk unassisted and see clearly. Tomorrow, both can be gone. So today, at this moment, I am feeling in control and it is liberating. I will hold on to this feeling until it is ripped from my grip. Here’s to today and to now! Oh, and karma…..please let there be karma!