Saturday, November 13, 2010

Dear Right Hand

Dear Right Hand,

I miss you. I know it has been only 2 weeks and I just started the steroids 3 days ago, but could you start to get better, not worse. I miss being able to zip my fly the first time and not the 7th. I miss holding a pen without it falling out of my hand as I write. And for that matter, I miss my handwriting. (I hope the bank cashes all the checks I have signed recently.) I miss being able to shave my legs, paint my nails, fasten my bra, drive. It has been 13.5 years since I was diagnosed and every other time, I have bounced back to where I was before. I just hope I will bounce back again this time. I have read that after 10 years, 50% of those with RRMS go to secondary progressive. I am trying to stay positive and hope that this is not my new norm. If it is, I need to do what I tell my kids, you get what you get and you don't make a fuss.

I just wanted to vent. I know I really don't have a right to vent because 97% of the time, I don't look or feel (except for those shots in the refrigerator) like I have MS. I do try to do my part to raise money and awareness since I have been blessed to have a mild form of the MS thus far. That should count for something, right? In the past after this much steroids, I have seen progress though, so now I am beginning to get worried that this may be the new me for good. I hope not because I really miss my hand.



PS - I would love to feel my foot too and for that matter, my whole right side. Thanks.

Monday, January 14, 2008

Are buttons getting smaller?

I have been having more difficulty buttoning my daughters’ outfits. Are the buttons getting smaller and more difficult? Or are the girls moving too much as I am trying to button? Or, is it the MS?

Have you seen the new MS Society advertising campaign? One of the spots is located at this link: Every time I watch it (and I have seen it A LOT since they show the full 3 minute version at every MS Society event), the part that always gets to me is hair braiding scene. For me, that is the part that hits home. What if MS didn’t let me braid my daughters’ hairs?

The video has something that hits home for everyone, I think. I know people who get choked up when they see people in wheelchairs. I know others who hone in on the scene where someone stands on tippy-toes. The whole point of the videos is to get anyone watching to understand the differences in how MS stops a person from moving.

The most frustrating thing to me about MS is the unpredictability. It can affect me one way and someone else, it can affect them completely differently. I attended an event for young adults 5 years ago and was sitting with some people I know, all of whom have MS and have no obvious visible symptoms. A woman joined our table in a wheelchair and was accompanied by her mother. Her mother was very surprised to learn that everyone except her sitting at the table had MS. She even commented that it couldn’t be because her daughter was so affected by the disease and we all looked fine. I felt for that mom so much.

I often think about the fact that this disease isn’t fair. For some, like me, it is the attacks where I may need assistance walking but at all other times, I just live with the unknown. For others, there really is no denying the disease because they are in a wheelchair or using a cane. And it really isn’t fair that it affects one person one way and another person a different way. There have been times when I am with people who are more able-challenged and I do not disclose that I too have MS because I feel like I am rubbing it in, which I am not but it feels like that. I think, “why am I walking and this person is using a scooter?” And I feel bad, not because of the person’s challenges, but because I do not have those challenges too. Not that I wish I was in a wheel chair too, I wish they were not.

I wrote about my participation in the MS Challenge Walk last September. I got a lot of notes from relatives and friends saying that they were proud of me for participating in the walk. And I had a hard time accepting that word, proud. I didn’t think what I was doing was something to be proud of, I just did it because I can. And as long as I can keep doing these events, I am going to. So someday, the people that need to use assisted devices for walking won’t need to anymore. Just like the MS video says, they exist so that MS doesn’t stop people from moving. I walk and/or bike for those people who can’t so that one day, they can join me.

I still don’t know what to do about those buttons. Maybe I’ll sew on snaps instead.