MS Life

If you are new to this site this is the last post. Please read from the bottom up so that it will make sense to you.

Well Hello Again Everyone!!!

I am back from my trip to Miami to help a friend of mine who also has MS. She went to Florida to complete her move from there. She still owns the property but is leasing it out, and will keep the property until it reaches the value it is worth again. I think that’s a pretty smart move but I’m no expert in the field. I also think it may be a long wait before it reaches what she paid for it.

I’m not here to talk about economics am I? I don’t know the first thing about it really and it’s mainly because I don’t want to know. Strangely enough, I’m a day trader in currencies among the many things I do, and guess what? I’m not very good at it. Does this disinterest in economics and trading currencies go hand-in-hand? Yup! I’m thinking maybe I should drop day trading? I don’t know. It gives me something to do other than the norm and I truly enjoy it. We will see, but many days you will see me watching one computer for a trade I made while watching another computer listening to something I’ve composed for errors. Then guess what? Of course I find errors in my music. I get busy correcting the error and forget about the trade. When I’m finally done correcting the error, I remember the trade. Sometimes I am happily surprised and it’s gone higher than I would have let it go and I’ve made a profit and other times just the opposite. To top it off, I often fall asleep at the computer and land up staying there all night with the keyboard imprinted on my forehead in the morning only to find that I’ve left a trade unattended all night long. Again, I am pleasantly surprised or I’m kicking myself in the butt for forgetting to place a stop/loss. I’m still talking economics aren’t I? Okay, hold your horses, I’m moving on.

Luckily, I had an appointment with my GP prior to going on the trip to Miami and I told him my concerns about having myoclonic jerks on the plane while being confined with a seat belt. I didn’t want to be throwing myself into my neighbors face every few minutes, or scare the airline into a screeching halt thinking they had an emergency nutcase on the plane. He understood my concern and prescribed some Ativan for me. Taking one of those and having a teeny drink was enough to knock me right out. I didn’t feel a thing. I know, I know, I shouldn’t be having a drink with all the medications I take, but desperate times call for desperate measures.

Once I was wheeled out of the plane, I was placed in a seat along with six other people who were waiting for wheelchair escorts. I don’t know what was wrong with my compatriots, but most looked like they could take a trolley and be done with it. We were told that if we left our seats that if the chairs came and we weren’t in our seats, then we would have to fend for ourselves. So we waited, and waited. Every single one of us complained about needing to use the rest room. We didn’t know what to do, so we waited and jiggled about.

We saw chairs coming and going to other airline waiting areas but none came to us. After about 40 minutes of this, I had enough of waiting. I told them sit tight that I was going for help. They all repeated the warning about leaving our seats and I looked at them jiggling in their seats and said, “Don’t you see? Something is wrong here. Planes are coming in after us and people are getting wheelchair escorts, so something is wrong here.’

I took off with my purse in hand (a huge one) and my carry-on bag that was actually a very large knitting bag stuffed to the gill with all my stuff including my laptop. It had no wheels on it. I quickly found out that I could not carry this bag because it was too heavy. Not only that, I was still reeling from the effects of the Ativan with the drink. I was never so happy to approach a walking sidewalk, as I dragged my bag and me towards it. I didn’t see anyone on my side on it but I did see people on the other side of it. I just assumed that no one was coming in my direction at the moment.

Every few minutes I had to stop and drop my bag to answer my phone because my friend was driving around in circles wondering when I would arrive at the outside so she could take me home. She was sounding harried and I was so tired of dragging that bag and then having to stop every few minutes to answer the phone, that I told her, “Stop calling me already. I’m trying to find the wheelchair office!” She responded angrily with, “Well I’m driving around and around and I have to pee!” Not a good way to start a visit with a friend that I just made several weeks ago. We were both angry and tired with full bladders.

When I got to the walking floor, I realized why no one was on it. It wasn’t working. At that point, I was on the verge of succumbing to the tears I was holding at bay just behind my tired and wasted looking eyes. I spotted a person with a uniform and a walkie talkie and went up to him dragging my bag with me.

Um guess what folks? I was in the middle of typing this blog and got distracted by these three little boxes that were sitting on my desk. From there I went to my phone. I get easily off topic these days and forget what I was doing and move on to something else, like the boxes. I had some old nail polish sitting here and I thought I should paint the boxes and like I said, that wasn’t enough, so I attacked my phone. One thing led to another and I haven’t been to bed yet and it’s now 9:30 a.m. I just now remembered that I had not finished the blog.   I’m back……

Ooops spoke to soon. Okay, now it’s 11:22 a.m. and I got distracted again. Such is the life of an MS girl with pretty severe cognitive function disorder. This time I remembered that I wanted to start a portrait of my grandchild. So that’s what I was working on, when my husband woke up and found out that I had not been to bed. But I’m back now. Here, let me show you a picture of the boxes. Oh and did I tell you I attacked the phone as well? I don’t recall and I’m too tired to look at the paragraph above. Someone want to read it to me? LOL. Okay, here are the pictures.

Back to business and a normal font. Where was I before I digressed? I guess now I really do have to look back above the italicized paragraphs to find out what I was blogging about. Sheesh. Oh yes, the long walk down Miami airport to save six other stranded wheel chaired people from sitting around having to pee.

Once I discovered the walkway wasn’t working, the phone rang yet again. I was getting ready to tell my friend to leave me alone while I tried to get to her when she told me that she found an angel of a cop who was allowing her to park her car to wait for me. She told him she had MS and that I had MS and that she had been driving around for so long now and wondered if she could park for a bit. Sweet guy allowed her to. So at least that was one less worry for me.

I started walking again and I spotted this store that had these real pretty suitcases in there with wheels. “Ah hah”, I thought. Maybe this bag I’m dragging on the floor of the airport would fit in one of those bags. Isn’t it funny how no one offered to help me with it now that I think about it? I mean, I must have looked ridiculous dragging this bag around. I spotted that store in the nick of time because my hands and legs were cramping up on me. You know how it is when your hands cramp up and won’t release for a bit? My fingers were locking on me so I had to do something.

I went into the store and noted that it seemed to be a pretty high-end store not a kiosk type of place, when a woman came up to me and asked if she could help me. I asked her about the pretty bag with all the colors on it that was proudly displayed on the stand that I saw from outside the store. I pointed to it and asked her if she thought my bag would fit inside of that bag. She willingly and happily pulled down the bag from the display and opened it up for me and we placed my bag inside of it. Sure enough it fit with a bit of room to spare. I was so relieved and asked her to take the tags off of it because I would purchase it. She wheeled it over to the counter and I grabbed my cane and purse and whipped out my credit card and handed it to the cashier. She rang it up and put the tags in a bag for me and handed me the receipt to sign.

I almost fainted dead away. The receipt said $375.00!!! I looked at the bag and then looked at the women and I said “what, why is it so much money?” Then they looked at me and each other as though puzzled and said, “Well it’s a Britto!” Like I was supposed to know what that meant. I stood there a second and not wanting to appear dumb, I signed the receipt and thought to myself, how am I going to tell my husband that I paid $375.00 for a rolling wheel bag and I wasn’t even out of the airport yet. At the moment though, relief won over my trepidation of confession to my husband and I signed the slip and walked out of the store with my gaily painted bag.

I asked one more official where the wheelchair office was and found that I was finally near it and found it in short order. I stumbled across the threshold and at that point I lost it. I started in on the people behind the counter and told them that there were seven people stranded off of flight 1632 for over an hour now without wheelchair assistance and who were afraid to leave their seats because they were told if they left, they would not get a wheelchair. I was shaking and close to tears and they had me sit down and got right on the phone. All of a sudden wheelchairs came out of a room and people were flying out the door to rescue my compatriots.

They gave me some water and sat me in a wheelchair and took everything out of my hands. Then my bladder finally let go, but I didn’t say anything. I was wearing protection and I just dealt with it. They took me all the way outside and there was my friend waving at me. I was so relieved to see her even though we both looked haggard and worn out. She pointed out the nice cop to me and I tried to tip him, but he wouldn’t accept a tip. So I gave him a hug instead and thanked him for being so kind.

There is more to this story but I will continue it on the next blog.

So what do we make of this? Now to most people this isn’t such a horrific story, but they don’t have MS. They don’t know what it’s like to have a neurogenic bladder and cramping of hands and legs nor of tremendous fatigue. They also don’t know about the types of drugs we take to combat this disease and its effect on us. They don’t understand how difficult it is to walk through what feels like walking against an ocean’s tide, the insurmountable fatigue that we have, the ataxia and what it’s like to try and walk carrying a purse cane and carry-on bag.

What got me through this is this. The words——YOU CAN’T!!!! YOU CAN’T leave your seat from the man who placed us on our chairs. YOU CAN’T from the other stranded people who sat there and said, “It’s such a huge airport, and YOU CAN’T walk all that way to find the office. But worst of all the ‘I CAN’T take another step coming from within me, and of course the YOU CAN’T from my friend telling me to just wait that the airport was too large to walk around in.

I can’t stand those words, YOU CAN’T.   Keep in mind what this blog is all about. I may be disabled but it only enables me to still do what everyone else does but differently. Sure it’s painful, it’s awful and can be embarrassing but I DID do what I set out to do. It cost me dearly. I didn’t want to go out for dinner and I had spasms all night from the ordeal. Even my friend with MS said YOU CAN’T. Well damn it all, I CAN, I DID, and six other people were spared from sitting on chairs like children in a classroom.

If it takes anger to get the job done, then get angry. Do what it takes, but do something. Don’t let people cow you into disability; at least try. If you can’t, give yourself a big pat on the big pat on the back for at least trying.

You can do anything……ANYTHING…….if you want to bad enough. It’ a matter of wanting to get on with life or wanting to capitulate into the world of disability. I’m not willing to go there mentally. Don’t get me wrong, I know that I am disabled, but my mind and heart continues to fight back. I am in no way putting down anyone who has arrived at disability both physically and mentally, but the longer you can put of capitulating to it, the better off you are in the long run in my humble opinion,

Until next we meet…………..YOU CAN!!!!

Welcome to MSLIFE  If you are new to this blog, please read from the bottom up so that it will make sense to you. This is the latest blog, not the earliest.

I’m nuts.  I’m crazy.  I hate heat!!!  How will I be able to sit in an airplaine confine by straps and not hit someone in the face because of myoclonic jerks?  These usually happen when I’m in a relaxed state.  Being confined to a seat in an airplane forces you to stop moving about and that certainly will bring it on.  So why in the world am I going to Miami?

I met another woman recently at the Health and Wellness Center where I go to exercise (if you want to call what I do exercise).  She has Multiple Sclerosis and is about my age.  We became fast and furious friends.  She is one of the most negative MS people I have ever met yet at the same time, one of the most positive.  I know……that doesn’t make sense does it!

This lady is brilliant of mind.  She is intelligent, bright, has a great smile and was left behind on the side of the road once she was diagnosed by a wealthy husband who couldn’t take the changes he witnessed in her.  He wanted the girl he married.  She was there, but changed. 

She grew up in New Jersey but lived in Florida with her husband.  When he first started out as an attorney, he was doing okay but she felt he would do better starting up his own practice.  She worked phenomenal hours to keep both of them alive and well until he was finally an establised independet attorney with his own practice.  Meanwhile, she began noticing changes and one of them was extreme fatigue.

When she felt secure enough to leave her job, all she did was sleep day and night.  Then a myriad of other things happened until she was finally diagnosed with MS.  This isn’t her by the way.

I am going to Miami because she needs help separating her past life to her present life.  She has dual state-ship?  Is that a word?  Her husband was at least decent enough to keep her in the style she was accustomed to at least to about 50%.  He left her a small but expensive apartment on an island that she owns and he left her with enough money so that she could live the rest her life if not in luxury, but in comfort.