World MS Day

II suppose I should spend the last 30 minutes of today to comment about World MS Day.

Today is World MS Day, one day where people should stop and give consideration to all of us who suffer from MS.

Aaaaaaaaand.... the moment passed.

I won’t go on about how it’s ludicrous to devote one day to raising awareness about anything, breast cancer, diabetes, MS, whatever... One day where other people stop and think about a disease they know nothing about but are glad they don’t have. I wish I could spend one day thinking hard about my disease and then push it aside and it isn’t there anymore. It’s up there with Mother’s Day or Father’s Day... One day out of the year to appreciate your parents who’ve spent the other 364 days appreciating and caring for you. 

Where is that fair?

This time last year, I was just starting summer break with the kids. I had no idea that there was a World MS Day, and if I did, I didn’t give it much thought; I was too busy playing with my boys and enjoying the break from work. Now the idea of a World MS Day has a whole different meaning, but honestly, I still would have been just as fine not knowing a thing about it while I prepared for another summer hanging with the guys.

So, this is my moment where I give some thought and consideration about this disease that is wreaking havoc on my life...

Aaaaaaaand, we’re done.

Wanted: One brain, it’s grey, kinda wrinkly. I must have left it somewhere...

I am seriously starting to lose my mind, and not in the my kids are diving me crazy, I’ve got a boat load of work to do and not enough time to do it in, losing my mind. I seem to be losing cognitive functioning.

For example:

I’ve been saying wrong things with out knowing that I’m saying things incorrectly. I’ve told the kids to rinse off their dishes and put them in the microwave. I ordered a hot ‘n sour soup in stead of an egg drop soup at or favorite Asian restaurant on my birthday; I hate hot ‘n sour soup.

When I write, everything looks normal, my spelling is correct, no typos, but when I go back to something I previously wrote, it will be full of typos, wrong words, etc.

Today, I had an appointment at 10:30 in the morning. I finished a few things around the house, dishes, laundry, etc. Went up to dress, I did my hair, make up, and when I went downstairs and looked at the clock it was only a little past 10. I had plenty of time before I had to leave. So, I balanced my checkbook, contacted a potential client, packed my bag and left at 10:15. I got to my appointment, I sat in the waiting room, opened my book and started reading. My cell phone starts going off, but I don’t recognize the number so let it go to voicemail. Curious, I check to see who called and it was my doctor saying that we need to reschedule because when he came out to get me I wasn’t in the waiting room. Confused, I checked the time and it was 11! I thought I’d gotten to the appointment on time, but when I checked the call log from the call I made before leaving the house, and it was at 10:34. Somehow I looked at the clock, saw 10:15 and when I got to the office I saw that I was indeed on time.

I’d spent the whole morning thinking that I was on schedule and yet time had completely gotten away from me and I had no idea that it had; which really freaks me out.

I have a test, I scheduled a couple of weeks ago, to have a neuropsychometric exam. For awhile I’ve been having issues finding words and losing words, plus now using wrong words, so my neurologist wanted me to have this test that should determine if it’s my medication that’s causing the issue, or if it’s apart of the MS.

That’s right folks. Not only can the MS cripple me physically, it can also cripple me cognitively. Apparently it has something to do with the lesions in my brain, how many I have, where they are located, but cognitive loss is not a good sign. According to my reading, people who’ve had MS for years will start to have cognitive impact as the condition slowly progresses. It’s scary to think that after less than a year, I’m having cognitive issues.

I really hope that it’s the medication because then there’s something that could be done. First of all, I quit what’s causing the problem, and that’s easy because I don’t think it works anyway. I still have pain, I still have neuropathy, and its all getting worse.

Did I fail to mention that?

Yes, my symptoms are not only still present, they are worsening. Along with the worsening symptoms, the cognitive issues seem to be worsening too, especially if I add losing time to the list of brain issues I’m having.

If it’s medication driven, we quit the meds I’m taking and possibly try new things. If it’s MS, the damage is irreversible and well I don’t really want to go there at the moment...

They say first steps are the hardest... But sometimes you just have to jump in.

On Sunday I got back on my bike for the first time since I was diagnosed. Hobbes was driving me nuts and I figured the best way to appease him was to take him outside to ride bikes. I wasn’t sure how I would do, but I was willing to give it a shot. We ended up taking a bike tour around the neighborhood with Hobbes showing me where he likes to bike and where his friends live.

It felt good to bike again, and we had a lot of fun.

Today it’s warm and sunny out and I decided that I wanted to take a walk. I packed my iPod, sketch book, some pencils, writing journal, and a book. I went out, taking it slow, and after awhile I sat down to sketch. It was so great being outside in the sun, listening to music, and drawing. It almost felt like none of this MS stuff had happened.

I’ve come to the conclusion that I’m tired of talking about MS. 

I’m tired of talking about my health. Somedays are good, somedays are bad, on the good days I’m out and about while on the bad days I’m hibernating. When I feel good, I don’t like being reminded that I have something not right with me. Even coming off a bad episode, when I feel good I want to put the bad episodes behind me. 

I don’t want to look in the mirror anymore and see MS, and I don’t want people to only see that part of me as well. It’s like the nondescript music that plays in a department store; it’s there, you hear it, but it blends into the background and you forget that it’s even playing. I want MS to fade into the background; it’s there, I know it, but I want it to blend into my life. 

This song has been overplayed, and it’s has long worn out it’s interest. It’s time for MS to become the muzak in my life. 

This is the picture I sketched while on my walk.

Making a Comback

So, I’ve come to the conclusion that it is time for me to stop feeling sorry for myself and actually try and deal with the MS instead of letting it take over. For the past eight months, my life has been on hiatus. I’ve not done much, or wanted to do much, I’ve been holding myself back. 

Lately, I’ve started to become fed up with  myself. I’ve been sitting around waiting for something to change, waiting for the MS to settle down, but I’m starting to realize that I could potentially be waiting forever. Change doesn’t happen when you sit around and do nothing. The MS may go into remission or it may not, but sitting around waiting to see if it does doesn’t help anything. All I’m doing is wasting time, and if it isn’t going to go into remission what am I going to do, sit around and be miserable forever? The best thing I can do for myself it to make my body as strong as possible so it can last for as long as possible when/if the MS continues to progress.

So, I’m staging a comeback.

I’m not going to just sit around anymore feeling every ache and pain, wishing that it would just go away. I’m not going to stare forlornly at the array of prescription bottles, lamenting over the number of pills I have to take in a day... week... month. I’m going to have to get used to the lack of feeling in the fingers of my left hand; silver lining, I now have a barometer of how bad the MS gets. I may be verbally impaired but at least I’ll be amusing when I tell someone to wash their dishes in the microwave, or spew obscenities in order to jiggle out a word I lost. That’s just going to be apart of me, and people are just going to have to deal. It's time to start living again.

Empathy

It seems to me that a useful technological development, that has yet to be developed, would be a virtual reality simulator for doctors, giving them the opportunity to experience what their patients have to go through.

I get to go back to my neurologist this month, and as the appointment draws near, I’m feeling very anxious about seeing her. First of all, my symptoms haven’t stopped. The past few weeks I’ve had a lot of pain and discomfort, dizziness, fatigue, but when I tell her she’ll shrug it off as a natural part of having MS.

Well, thats great but it doesn’t change the fact that I’ve been in pain and will be in pain again until this stupid thing stops wreaking havoc through out my body.

I honestly believe that to specialize in one area of medicine or another, doctors should have to walk a day in a patient’s shoes. That way, they would have a little more empathy when a patient walks in and complains that their condition is causing major discomfort and, as a byproduct, upheaval in their lives. Doctors wouldn’t be able to dismiss the patient’s issues as easily.

Since most illness is internal, and outside of giving doctors cancer or diabetes or MS, a virtual reality program designed to simulate all of the symptoms and aspects of life a patient may go through, would be a helpful tool. There is a huge push to research diseases, find cures, develop better medicines, however there really isn’t a push to engender more empathy to the pain and suffering of the patient. 

New treatments are great, better medications are awesome, but the bioengineer or pharmaceutical rep or doctor aren’t going to be the ones taking said medications or treatment. Therefor, they won’t have to suffer the consequences or side effects. A doctor is like a general contemplating a battle strategy; they have to weigh the benefits against the deficits, and it there are more benefits to a course of action the deficits don’t really matter. But say that the patient who is made to feel sick by their medication. Sure, it’s supposed to help in the long run, but what about in the meantime? It’s it fair that life should stop because you’re waiting for the medication to do what ever it is it’s supposed to do?

Since there really isn’t a way to instantly get what you want, you do have to endure a certain amount of discomfort before achieving the desired outcome. This is where empathy on the part of your doctor comes in...

They may have to hurt you to help you, but they don’t have to be heartless bastards in order to treat you.