Living with Multiple Sclerosis

I suppose that in some ways it would be easier to tell you what life without MS is like. But then again, most of you that read this will know about that. It seems on some days that I almost cannot remember what it was like. I get up in the morning and think about waking up feeling healthy and whole. I believe I could take the daily changes of getting older. The aches and pains of arthritis. The advances of the degenerative disk disease. The bits of memory changes. We must all go through these things at some point in time.

Last evening I had the realization that there are so many cures and treatments that actually work for so many different diseases. The medications, treatments and literally 'experiments' for MS; only seem to mask the symptoms. I have known people that were cured, whose surgeries worked, whose medications overcame what they had been diagnosed with. Of all the people I have known, or read of, I have never encountered one that was 'cured' of MS. Therefore, those of us that have this dysfunction, and that is what it is, at this point in time, see no daylight at the end of the tunnel.

My tunnel began on the evening of December 3rd, 2000. I didn't know at that time that it was something other than a regular migraine; which I had been having since my early twenties. I was leaving work headed to a Christmas concert at the kid's high school. I had promised to help serve pizza to several hundred youth. Since they had been practicing for several days, they had been served pizza a couple times already. My daughter had requested I bring here some Mc Donalds food. So, being the over indulgent Mom that I some times was, I stopped and picked up a couple burgers then headed on to the school. I kept thinking that I would get thru the evening and head home to medication and the bed.

The following morning when I attempted to get out of bed, my legs didn't want to work. I fell to the floor, crawled to the bathroom, finally managed to stand up and get a shower. My legs hurt so bad. I thought may be it was just a pinched nerve since I had some pretty bad back issues. I went to the kitchen, made coffee, took another migraine pill, got the kids up to get ready for school. Several times while getting ready, my legs almost gave out. I thought that this was going to be a really fun day!

While driving to work, I was thinking that I had not had a headache this bad for quite a while. But I would go to work, perhaps wrap up some things and come back home early. This was not some thing that I usually did. One has to do what one has to do. By mid morning I was losing my balance. Several times I fell into the wall so hard I bruised my arms. I left work about an hour early and headed home.

Then next day was even worse. While driving the kids to school, I was getting worried about my vision. Several times I asked the kids if the vehicle on the road was going in front of me or was in the other lane coming at me. There seemed to be two of every thing. Now I was getting worried. But I made it to work. Of course, it was rather difficult to do much because of the vision problem.

On the third day, my boss decided I should really get to the doctor. All my co-workers were getting rather concerned. So about lunch time I too decided the pain, vision, and balance had to add up to something being really wrong. I went to the emergency room.

After a battery of blood tests, a Cat Scan, and several other tests; the ER doctor decided there was nothing wrong that several days of rest wouldn't cure. I took the work note by the office and went home to bed. Of course then I got up and picked up the kids from school, came home and made supper, cleaned up, did some laundry. You know, all those mom things.

The next morning being Saturday, I made some coffee and rested for a while. Then I decided that if this was from a pinched nerve, stress, or any such related thing, there was nothing like a long hot bath. I had a great tub at the time. One that you could just sink down in and stay until you were shrivelled up! So I filled it up with lots of bubbles and lobster boiling hot water.

This was definitly the wrong thing to do! Almost as soon as I was submerged, the pain that came was and still is, totally beyond any thing I have ever been through. Every nerve ending,and every inch of my skin was on fire. My muscles started contracting and spasming. I couldn't breathe. My head felt like it was busting wide open. Even my hair hurt.

I started screeming because I was afraid if I didn't get help, I would die right there. The kids and thier dad came running to the door. With help I was dried, dressed and driven to the ER part of the doctor's office.

Fortunately the doctor on duty was one that I have really liked and respected for a long time. He knew right away there was something wrong. He called on a Saturday and got me an appointment for the nuerologist on Monday morning at eight am. Then, not wanting to affect what ever was going on, he gave me a mild pain suppressant, and told me to get complete bed rest and no heat! He also went over the possabilities of what could be the problem. One of the things he kept stressing was MS.

Monday morning found me at the nuerologists office. This doctor sent me for an MRI almost immediately with instructions to come right back to his office. The report was to be read right away and called and emailed to him. Within several hours I was back in the exam room with the doctor being pretty sue that the diagnosis was Multiple Scluerosis. He wanted me to go to the University of Charlottsville for a second opinion. That appointment would take a week or so to get.

After being home for about two days, I had a second episode. It was almost like a surge of the first symptoms only worse. I could not even walk without some one on each side. So Iwas agian taken to the ER. I was admitted right away. They got the IV's going and started steroids. It seemed that these had the right effect and I was soon feeling a lot better. In a couple days I could walk on my own but with a cane. My balance was still terrible and my right side seemed to be drawn up and would not work the way I wanted it too.

I went to the appointment at the Charlottsville hospital. My parents had come down from Ohio to go over with us. We had to get a wheel chair for me to get around. When we finally got to the area we needed, I was xhausted! The nurse took me to the exam room and the doctor came in in a little bit of no time. After a brief exam, she went out and talked to those waiting for me. When she came back in she said that I needed to go to the admitting department. I actually asked her why! She said that she was not sending me home in the shape I was in. That some answers needed to be found and treatment started. Needless to say, I argued that I had a job to go to and that with Christmas just around the corner I still had shopping, decorating, and baking that needed to be done. I didn't win that discussion!

The next week and a half was a blur. There are things now that I am remembering that I had no clue then. My speech became unitelligable. People were not responding to what I was saying, making me repeat myself. the words that were in my head were not what was coming out. I became very frustrated and aggravated. I once again was needing someone on both sides just to get up to the bathroom. Turning over in the bed made my head spin because my balance was so bad.

I was sent for more MRI's, Cat Scan's and other tests. Blood drawing was so regular I just held out my arm when the techs came in. Doctors and resident students, nurses, therapists, came and went. Finally a second year resident student was studying one of the Cat Scans and noticed something that had been missed. The initial onset of the MS, had left a lesion so large and deep that it had caused a right sided stroke. Something else to deal with.

Needless to say I spent a little over a week in the hospital. Once the meds were regulated; I was starting to come around. I was getting a little stronger and gained more control of my right side. The doctors decided to let me go home on December 23rd.

Finally I was going home. But I had to wonder to what kind of quality of life. I was a nervous wreck and totally exhausted. It seemed like all I wanted to do was sleep. I guess that is what I needed. Sometimes it was very frustrating to not be able to do simple daily tasks. I coulnd't even carry a cup of coffee across the kitchen.

One day I finally just got fed up and decided that if I didn't get myself going, I would be stuck like this. So I started walking. I started out with the help of the kids and then friends that came by to visit. I made myself do the household chores and got back into things slowly. Every day was like a brand new start. Eventually things seemed to get a little easier and the medications were evening things out. The pain level reverted to an acceptable level. It has never completely gone away.

Of course through all this, I did a lot of studying and learning about MS. I researched the treatments, talked to others with the diagnosis; and slowly learned to deal with the issues that my life had now taken.

I realize that every day is different and there is never any assurance that a day will be a "good" or a "bad" one, or change in the middle. I am still learning that even the "bad" days can be ok. I just have to take a break, sit down, and spend a little time in the chair. I try very hard to make the most of the "good" days. There have been days that are absolutely amazing, and I treasure them dearly!

I sometimes wonder what turns my life might have taken if not for this invasion of my body. There are times when my mind does not want to accept the limitations that MS and the stroke have put on the physical aspects of life. I still tend to get some what frustrated when I can't do certain things. But I will do all I can, when I can, and be grateful for the memories.

In these writings, I hope to encourage all who read this to be strong no matter what life throws at you. Make a come back. Find somthing that challenges you to get strong again and keeps you going. Don't give up! Don't give in!

Gypsy at Heart

I finally get to go and be that gypsy I have always felt inside and never got to let out. My wandering spirit shall wander. My inquiring mind shall experience and absorb. My eyes will finally see all those great places I have only seen in pictures. I will get to re-experience many things I saw and did as a child. I wonder what the difference will be seeing them as an adult. The appreciation of things, places, and people; I am sure be quite different.

There have been times in my life when I just wanted to pack up the vehicle and hit the road with no destination in mind. The thought of how far will this tank of gas take me. Where will I end up? What will I see? Who will I meet? I guess to some people that is a scary thought, not to have a complete plan. My thought is if you have too complete of a plan, there is no room for deviation. If I am driving down the road and want to stop and see some thing; then I want to stop. So many times I have had to drive right by a place that really seemed interesting to me. No more!

I wonder how many opportunties have been missed because a person was to busy to stop. How many paths might have taken a different turn if they had pulled into that little shop, senic route, old restraunt, and a lot of other places. How many lifes would have been changed? I guess I am just full of questions about the road less traveled. The intrigue of the unknown facinates me.

Getting ready to take this trip knowing that the MS could flare at any time, is really urging me to get on with it. I don't know how much time I have to do the things I want to do. Or how long I will be in shape to do them. I feel kind of like I am in a race with time. Some days getting up and around is so hard. Then the rest of the day is great. Sometimes the mornings are great and the rest of the day is pretty tough. For right now, most of the days are all right. As with any chronic disease, a person has to learn to get along. You just learn to tolerate certain things.

So, I want to take this trip and pack as much life into it as possible. I want to stand at the the Grand Canyon rim, take walks in the desert, do all the rock climbing I can, get married, meet people; not neccessarily in this order. That is the beauty of not having a fixed plan. You can change the details and not mess any thing up!

I am really excited to let this gypsy out and go for it! Life is sweet and there is so much more than what is here in front of me. I will go see, explore, and experiece. I am thankful to have some one to share this desire of getting out and seeing the world. Some one who is not afraid to go outside his comfort zone. Some one who looks after me and just wants me to have a good life!