Time to Celebrate!

Happy Anniversary to me! Yesterday marked my 10^th anniversary since my first MS attack. It seems a little strange that this is an anniversary to celebrate, but for me it is. Someone who also has MS reminded me that it is a celebration that after 10 years, I am doing so well. And in thinking more about the comment, I think it is true.

When we first found out, we DEFINITELY were not celebrating. Even though the doctor said it could be years between attacks, we were more focused on the comment that it could be weeks or months. I remember driving with my husband a few days after my diagnosis and him suggesting that maybe we should move into a ranch house so I didn’t have to worry about stairs. But aside from some minor spasticity and minor fatigue (both brought on by my pushing my limits), I did go 4 years between the first & second attacks. And then 3 & 4 both happened within 3 years of attack #2, but they were special attacks brought on by being pregnant (a whole other story).

Let me think about all the things I have done in these last 10 years, in part because of the MS. First, the kids. When we first were approached about going on the ABC drugs back in early 1998, our first question revolved around getting pregnant because I was NOT going to take any drug that would hurt my chances of getting pregnant or hurt the baby. If that was the case, we were going to hold off on the medicine and start a family back then. When I was assured that the drugs would be ok, we decided to start a family as we had originally planned and we had our oldest in 2002 and the youngest in 2004. And in both cases (aside from the pregnancy itself) I have been healthy and able to do everything with them. At 2 ½ & 4, that has been a lot.

Scuba. When I was diagnosed, we thought of all the things we wanted to do that we should do sooner rather than later due to the potential for the disease to progress. So why not scuba, go 100 feet below the water. It is so much fun, although we have not been able to go in 2 years. It is a whole different world and I don’t know if I would have tried it when I did if ever had it not been for the MS.

Tae Kwon Do. When the doctor was going through the items I should add to my exercise regime (which was really not a regime, more of a every once in a while thing), he suggested Tai Chi and I thought that was a great idea. However, my husband had been talking to a guy he worked with about Tae Kwon Do and said maybe I could try that and it could be our way of exercising together. I do recall saying I would give it a try, but ONLY to blue belt. Well that was almost 10 years ago and I am a second-degree black belt. Again, something I would have balked at (I wanted Golf to be our “Couple Activity”) but due to the MS, I gave it a whirl.

Kilimanjaro. Some friends of ours had gone to Tanzania and climbed part of Mt. Kilimanjaro prior to having their first child and that became the “Big trip” before we had our first. And as much as I was not looking forward to the mountain part of our trip (we went on a safari & went Scuba diving in Zanzibar), the best part of the trip was the mountain. We did not summit because of the length of our trip and taking the MS into consideration (my neurologist had suggested I stay at the bottom for a few days while Scott climbed), but I went to 12,340 feet and I felt great. Again, we wanted to go before the kids, because if we waited until after, we ran the risk of the disease progressing. And it worked and I had a blast.

So after 10 years, I do celebrate that I have MS. It could have been so much worse. And I am thankful that the disease has not progressed in those 10 years. If anything, I am healthier because of it. So Happy Anniversary to me!

Time to Remember!

Well tomorrow is my anniversary! Ten (10) years since my first MS attack. I think I can remember it so well, but probably time has altered what really happened.

It was 6 am or so and the alarm went off. I went to get out of bed to take a shower. I needed to go to the office before I went to my client that day so I had to get up early. My husband (of 6 months at the time) wrapped his leg around mine and said that I didn’t have to get up so soon but I did. When I put my right foot down, there it was – pins and needles. And it was there for my shower, my getting ready for work, my driving to the office and my subsequent drive to the client. At the client, the sensation started to creep up my leg, then to my waist and finally to my bustline. And every time my sundress hit my leg, it would feel as if a hot iron or pot had just hit my leg instead.

Here is where the memory doesn’t make sense. I remember calling my sister on my car phone. I remember going one direction but in retrospect, I had to be going the other direction. She said I should go to the ER because I could have a blood clot. Well, being 24, invincible and stupid in retrospect, I went to Dave & Busters for the “End of Busy Season” party the office was having. But after having a great time at D&B’s, at 10 pm or so, I did go to the ER. Being that I didn’t look like I was serious, it took over 2 hours to get to go see a doctor. He did his tests and said I did not have a blood clot. It was probably a pinched nerve and it would work itself out. BUT, if I still had the tingling after a week or it went higher than my bustline or into my other leg, I should see my primary care physician.

Well one week later, I was at my primary cares office. My doctor’s hands were cold. But every time she touched me I cringed because they were hot to me. Thank goodness, she realized something was not right and referred me to see a neurologist. Insurance being what it was, two weeks later I got my referral visit with my neurologist. He ran his tests – touch your finger to my finger and then your nose and then back & forth, etc. and I passed with flying colors (I think – and why wouldn’t I, the problem was in my right leg & foot, not my hand or nose). But when he said, hold your leg up while I try to push it down. I couldn’t keep it up. And I recall saying something to the effect that I needed to exercise more. But he nodded and said he wanted to run more tests. He added that the fact the sensation had disappeared was a good sign.

That’s when I went in with the killer question. I then asked him if it was ok to ride in the MS 150K the next weekend because I was a team captain and I was feeling fine. Maybe memory is playing tricks on me but I could have sworn that he then glanced up with a surprised look and said that I could ride but if I was tired I should take a rest and not push myself. Well I did the ride the next weekend. Only walked ½ way up one hill and rode all 100 miles. And when I rode under the balloon arch at the end of the second day, I almost cried because I thought to myself that I could have just ridden for myself. Less than 2 months later, I found out I had MS.

The MS Walk

I am a very lucky person. I was taking with my mom today and she wanted to know if I was raising money for the MS Walk. I am through donations/fundraiser in my neighborhood. But, my response to her was - no, I will send letters for the MS 150K and Challenge Walk but the MS Walk is ONLY 8 miles.

Only 8 miles. Eight miles will be tiring, but not as tiring as the 50-mile walk I am planning to do in September. I know quite a few people living with MS that would slap me on the head for saying it was "only" anything. I know I am lucky that I am as fit as I am. But although my feet have no burden, there is a big one in my heart.

Many years ago (7 or 8 probably), I was asked by the MS Society to distribute MS Walk brochures to a support group local to my house and to see if anyone was interested in coming out and cheering on the walkers. I was running late from my job for the meeting. I went running in to the meeting carrying a box full of brochures. And what I was greeted with scared me, angered me, made me feel guilty & blessed. Most of the attendees of the group were utilizing some form of a mobility device. Many were older, but a few were in their 30s I would guess. After seeing everyone, I decided I would keep my own diagnosis to myself and only represent the Society. Except that I knew the support group leader and he questioned me in such a way that ended up "outing" me to the group. I wasn't trying to keep it secret, I just felt so bad. Here I was running where almost all of the attendees had trouble walking. Why was I so lucky and they were not? Did they hate me because I did not have any visible symptoms of the disease? Did I make anyone there feel bad without any intention of doing such a thing? Life just didn't seem fair. I stayed for the whole support group meeting but felt like aside from everyone being diagnosed with MS, that was where our similarities ended. I have the ability to walk 8 or 50 miles or ride 50 miles (due to lack of training time with two little ones). I was working full-time (60+ hrs a week) then. I was only married a couple of years. I didn't have any common MS problems.

I guess I decided back then that walking/riding will be my contribution since I know so many who can't. So next time when someone comments on the Walk, I won't say it is "Only" 8 miles.
I will tell them of the my friends who can't or who do the walk on a scooter. And I will try not to feel bad when asking for donations for my participation in these events. I feel bad when I ask because it does help me. But it helps so many others just as much if not more.