MS Life

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 have made a terrible mistake and it is costing me today and I don’t know for how long. OVERKILL!!!

I was so damn stubborn about fighting MS that it is now wreaking havoc on me. I fell asleep in my office chair, not unusual for me. At 6:39, after a night in the chair, I woke up shaking and jerking. I stood up to use the bathroom and found my feet were wet. I tried to move and slipped and fell onto the floor. My husband didn’t hear me because he was where he should be, upstairs in bed.

I crawled over to my office chair and tried the old trick of using the chair to stand up by crawling up it; the chair rolled away. I fell again hitting my chin on the floor which reverberated in my neck. I made it up this time. I wobbled on my feet and felt myself wanting to go down again but quickly sat on the office chair to prevent it.

I looked at my surroundings and realized that I had lost control of my bladder during the night. That’s why the floor was wet and the bottom of my nightgown was wet, and its part of the reason that I fell. The other reason is that my legs were not holding me up very well.

I knew I had to get to the bathroom or get in bed. I sleep on the convertible sofa when I know I’m going to have one of those nights, which are most nights. My husband had set up the bed for me so I knew it was open because I had taken a nap earlier in the day (yesterday) in it. I saw the walker as there is one almost everywhere in the house, and wobbled over to it feeling my legs wanting to give out again. It’s a feeling like someone stands behind you and suddenly they kick out your knees from behind.

Half way to my walker, I felt it; I went painfully down hard on one knee. The walker was within reach so I crawled up it and leaned heavily on it. This walker has a lid you lift up on the seat where you stash your stuff, so I collected what I needed to get rid of out of the office and what I wanted in the other room.

I made it into the kitchen and dropped off my glass and my coffee cup at which point, my other knee brought me back down to my knees. As I crawled back up, I noted that the sun was coming up. The dogs stirred in their house but I ignored then knowing my husband would hear them and come down and take care of them.

I continued on my way to the sleeper sofa and dropped off the rest of my things. I realized I no longer needed the bathroom probably didn’t in the first place and looked at my makeshift bed. I have a perfectly grand hospital bed upstairs but knew I could not make it up the stairs. I knew I should clean up but again I could not make it up the stairs to the shower.

Indecisively, I stood wobbling and jerking (myoclonic jerks) and wondered if I had any appointments today. I knew I had to go back to my office and my date book; so I turned my back on the now appealing bed and started back through the kitchen and into my office. I checked my calendar and was happy to see I had no outside appointments. This meant that I could go back to bed and sleep for a while without interruption.

I sat down in my office chair and decided I had to write this down before I forgot to do so. I wanted a cup of coffee but the dogs were up and yapping to get out. I knew my husband would be down shortly to take care of them then I could ask him to make me up a coffee.

Sure enough, I heard him come down the stairs to release the dogs to the outdoors. I asked him for a coffee. We have a Keurig machine so one was ready in no time. He found me sitting here in my nightgown with a sweater and the hood pulled over my head; usual garb for being at home. My back was turned away from him and I saw his arm reach over and place the coffee in my coffee warmer and turned it on. He didn’t say a word to me and walked away.

Shortly, I heard him going back up the stairs to bed. He sleeps till he is ready to get up. He had let the dogs back in but I ignored them and kept typing on my laptop. I had my coffee and my weekday had begun.

I sat here and typed also ignoring the pain in my knees and the jerks and as I sat here I realized that there was much to be done even though I didn’t have any appointments. It overwhelmed me and now I’m typing in real time.

I have decided to take a break and check on an overnight trade I placed. I will be back and explain about what needs doing and why I’m so anxious to get this blog typed.

I turned and faced the other computer, the keyboard isn’t working for some odd reason, and realized that before I fell asleep last night I was playing a card game called “spider”. It was still up so I decided to finish it before checking on the trade.

Hi again, it is now 1:21 pm. I fell asleep at the computer. However, I’ve been upstairs, showered and changed so that accounts for some of the time lost.

I have no idea where I left off in this blog and you know what? I’m not going to bother reading back until it comes time to proof it. I would rather start from here.

I am feeling better now that I had some more sleep even though it was still in my chair with my soiled nightgown. Everything is ship shape and so am I as far as cleanliness goes, but it’s not as far as emotionally.

I am here to tell you about my life as an MS patient. The reason this all started was because there were no books that satisfied my curiosity 5, 10, 15 years ago about the disease. It was all very technical. Even today, there are some books worth reading but still the focus is on “What is MS” and blah blah. There are also chapters upon chapters about the different treatments for MS and chapters upon chapters about the various types of MS. Once you’ve read them once in one book, you don’t need to keep reading about it in other books although there are differing opinions etc.

Then there are the holistic books, the self-cure books, the “all in your head” books, the “go to a foreign country” books, and so on. All of these books are worth reading!!! But they were not the book that I was looking for, at least back then.

Recently books have come out about the disease where people talk about their lives with MS. For the most part, these books talk about the misery of it, the unquestionable fatigue issues, the family issues, etc. These books are all worth reading as well. Yet still, it was not the book I was looking for.

The book I’m looking for is being typed as I type. What I wanted to know was what is it? “Huh”, you are asking yourselves. Really, what is it? What happens to you? What happens from the moment you get up to the moment you go to bed? What is your daily existence with it? What can I expect? What are the doctors visits like? What happens to different people with different lesions? How are we the same and how are we different? Why are some in wheelchairs and others not? All the curiosities of the disease are what I was after. In other words for me, I wanted to know what to expect! Now I know.

There is no book that can tell you what to expect because there is no such thing with Multiple Sclerosis. It is uniquely different in each one of us. Sure there are similarities, but in the day-to-day living activities of each one of us, the variations in how we react to stimuli are as different as a face of everyone we meet. No one of us is the same. So how can there be a book that tells us what to expect? There can only be books on what each person’s life is like living with MS. There is no right book or wrong book. There is no book.

I am here to admit to you this day that what happened to me this morning was completely unexpected. I have lost control of my bladder before, that’s nothing new, but this falling over suddenly and without provocation came out of left field. The crawling up to stand, then the falling over again twice was beyond my comprehension.

I have been feeling as though I will suddenly fall and catch myself in the last week or so, but to actually fall was terrifying for me because I could not control it. When it happens once, okay, but it happened again and may have happened even more had it not been for the walker to hold me up.

Okay now. The purpose of this blog is to be able to say that “I am enabled by my disability to lead my life like yours, only different. That I am in fact ENABLED by my disability to look at life differently and I’m given the opportunity to be creative on how to handle any given situation.”

What happened left me crying like a child, hurting over my “boo boos”, and having nowhere to turn for help except from the strength from within. I had to literally pull myself together to get on with my day and do the many things I had on a list to do. I did none of them. Instead, after my shower I came down here and continued working on this blog.

This is the book I want on a bookshelf. This is the book that will be on a bookshelf because I command it of myself. For the first time I felt like my attitude towards it all was overkill to the nth degree because sometimes you just can’t or just don’t feel like turning it around and turning it into something positive. Today, I was little girl lost. Later I became a woman in charge of my life. Tonight, I will be as I always am, looking for the positive slant of things.

So tonight I say to you, because it’s taken me all day to write this, that sometimes I can overkill a subject to a point where I can actually do myself some harm. Tonight I say to you, it’s okay to be little girl lost or little boy lost. Sometimes there is no positive slant on things. They simply are.

Tonight I say to you, I was little girl lost this morning, but tonight I found my positive slant. Things are what they are. I am a sick person with Multiple Sclerosis.

Yet tonight I say to you “so what!” Let’s keep going and see it to the end. “So What!!!”

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.

This is a continuation of the blog from South and week about my trip to Miami.

I was driven to Brickell Island at the south end of Miami. It is a beautiful area and with the ocean is right at your doorstep. We drove up to a high-rise building and I was and I was very impressed. There               was a valet at the door and a guard in the building. We went up to the 16th floor and when I first entered the apartment, I saw the expanse of the ocean at the windows facing the door.

It was a small apartment, only three rooms; a kitchen, bedroom, and a living room. I had no idea that my friend had such a different life in Miami. She was very excited to show me around and wanted me to step out onto the balcony to see the ocean. I stared at the ocean then turned around and looked at the apartment and wondered why in the world she would leave this place. But living a double life is not healthy for anyone. She was making the decision to move back home to New Jersey. She has family in New Jersey and was raised there.

I saw some boxes packed in the corner of the living room. However when I looked around at the rooms, I could see that she had a lot more packing to do. That’s why I went to Miami. She sounded desperate and needy so I went to her.

I could see that I had my work cut out for me. With both of us suffering from multiple sclerosis it would be difficult at best to get the job done. She had acquired many beautiful things when she was married to an attorney. However, when the attorney could not deal with the fact that she had not multiple sclerosis and that it would change their lives, he left her. Unfortunately, this is not unusual.

Let me tell you something interesting.  I have never before come face-to-face with my own disease on a live-in basis and I have to tell you, it was a revelation.

She wakes up crabby while I wake up just like everyone else, groggy, looking for coffee and so forth.  She uses weed to stabilize herself and I use my drugs.  She also has drugs as well.  Don’t worry, it’s all legal.

In the space of one week, I learned so much about my own disease by watching and living with it through someone else.  It was quite a revelation.  I was only going to stay 4 days but landed up changing my plans and staying a week.  She was a mess and completely unorganized so I knew I needed to stay around and get most of the work done for her and get some organization into her life so that she wasn’t so frazzled.

My problems are physical and cognition.  Her problems are mostly physical and emotional.  Add to that, an interfering but loving family who still treats her like a child.

She receives dozens of calls in a day, mostly from her family.  I don’t want to go into all the details of this very harrowing week because it would take pages and pages to do so.  But I would like to go into one incident that had me totally flabbergasted.

One day, I was out in the living room and all of a sudden I heard “Oh God, oh God.”  She came running into the living room completely naked with a case of having lost her bowels.  She stood there as it continued running down her legs and onto the floor leaving a trail everywhere she walked.  I yelled at her to get back in the bathroom, while I started to clean up the mess getting it on my clothes and gagging the whole while.

I told her to get into the shower and let it run there as I worked my way from the living room into the hallway then into the bathroom where it was all over the small carpet.  I took that and threw it in the washing machine.

She managed to clean herself up and I managed to get the rest of the place cleaned up of her mess.  I ask you this?  Why did she run out of the bathroom?  Why didn’t she stay in there and sit on the toilet like anyone else would?  Was she not thinking straight or did she want attention?  I will never truly know.  I only know that her behavior was abnormal.

Before I left for Miami, she was so excited to have me there.  We made plans to go here and go there etc.  We did none of those things.  She had friends come over who would wrap a few things and then sit and chat about their lives.  I was a person they all wanted to meet because she had told them about me.  But they really didn’t help her out.  I would hazard to say, they actually helped her live in her depression and her negativity about everything and anything.

All week long, I had to endure countless phones calls and lots of yelling into the phone.  When she couldn’t cope with her mom or whoever, she would hand the phone over to me and I would have to calm everyone down.

The big issue was the move and everyone treating her as though she didn’t know her head from her ass.  In a way that was true, because she allowed it to be true.  I had to keep reiterating to her to stop listening to them and just get the jobs done.

While living in New Jersey for the past couple of years, I think it was a couple of years, anyway—she did not see a doctor.  What she would do instead is go down to Florida and see all her doctors there for an extended stay.  She had been told and was completely convinced that she could not get insured in the New Jersey.  Have you ever?  Even her brother, who is not a lawyer or of any authority to speak on her condition claimed that she could not get insurance.

She was also convinced that she could not get disability.  She tried once and was denied.  Oh come on!!!  How many times did it take all of us to try and get disability?  I finally got a disability attorney who won the case for me.  But she, on the basis of one try, had gone for years without disability.  So that’s something we need to correct.

Everyone had her convinced that what she was doing, leading a dual life, was what she had to do.  It was completely and utterly ridiculous.  This is a woman and not a young one, acting and behaving gullible and childlike in the face of her family.

I just had to reach her somehow.  It was difficult because every time I would get her confidence up, she would receive a phone call that would bring her back down again.  I literally had to teach her that she could be independent of everyone.  All she had to do was follow my instructions.  So I laid out a plan for her, a list of sorts, of what she had to do.  Well this overwhelmed her.

She had papers everywhere completely disorganized and could never find anything.  I bought some folders for her and started organizing all her paperwork.  Then I had her make some calls to get her medical records and diagnostic reports and films to her.  That was a huge problem for her.  I convinced her that those reports belonged to her and that all along; whenever she had tests done she should always have a copy sent to her along with any image studies.

She did have the latest MRIs of her brain with her and I looked at them on disk.  I could see that she had many lesions in her brain but we lacked the report so we couldn’t interpret what we saw.

Then she had a report that said there was a mass around her kidneys, something to do with the adrenals that should be further investigated.  This had me very concerned for her.  She made the mistake of telling her mother and her mother just flew off the handle.  She was convinced that someone knew what was wrong with her daughter.  I explained to the mother that of course no one knew until further investigation was made.  It was just something noted on a radiology report.  But I could not convince the mother.  So the mother intervened and called the doctors herself and my friend gave the offices permission to talk to her mother.  What a mess.  Of course the mother was told the exact thing that I had already told her.  It needed further investigation.

We never cooked.  We always ordered in and on occasion went out.  If we went out and I wanted to go into a store to look over some things, my friend would wither up and say she couldn’t handle it after about 10 minutes into the store and just wanted to leave.  Now this I could understand because I get this way.  However, I fight it.  I always fight the fatigue.

The longer I stayed with her, the more I became this fragile and helpless person just like her.  The less I felt like fighting and the more I felt like capitulating to a world that was out to get me because I had MS.  When I realized this was happening, I became angry at myself and her.  I started packing her up like crazy working into all hours of the night just wanting to get away from a lady that I had learned to love, but found I didn’t like.

Let’s just end this whole story.  It was a miserable week with a few sunny spots in it.  My friend did nothing at all but talks on the phone, scream, yell, and then complain all day long about how unfair the world was.  I did all the physical work and all the organizational work.  In a few words, I was miserable and couldn’t wait to leave this beautiful rich part of Miami.

Here is what I learned.  Some of us have the ability to fight MS and retrain our brains, but this “some of us” is not true.  We all can do this but some of us refuse to see it and don’t want to bother with it.  Some of us thrive on being debilitated.  I am not one of them and living with someone who was had a powerful effect on me.

This is not the MS life that I lead.  Mine is completely different.  I am very active although sedentary.  I push to get things done.  I fight the cognitive failures of my brain by trying to learn new things and reroute those circuits.  I do this to the extreme though and I need to watch this.  I ignore the people in my life who try to constrain me and index box me under MS.

YES, I have MS but so what?!!!  Life doesn’t end there.  I will not spend the rest of my life feeling sorry for myself.  I will and can do new things or at least keep the growing and changing lesions in my life at bay for as long as I can.  I am a believer in “I Can” as I’ve said before.

Those of you who surround yourselves with people who “poor thing you” and don’t want it, need to get away from it.  Those of you who thrive on it and relish it, you can stay.  I don’t judge either one.  I just know that I belong to the latter.

Those of you who want to fight then surround yourselves with warriors willing to help you do so.  If you don’t, you will fall into a dark place from which it is difficult to get out of.  I know this for a fact because I did it too.  I allowed myself to be pampered and babied until I couldn’t take it anymore.  But coming out of that hole kicking and scratching my way upward took a long time.  Sometimes I fell all the way back down to the bottom, particularly if I had an incident that frightened me and reminded me what a terrible and debilitating disease MS is.

It’ your choice, move forward or crawl into the hole.  I wish you well in either case and I’m here to support you up here or yelling down the hold at you.

Don’t get me wrong here.  I’m not a strong person.  I have to use my scooter.  I have leg braces and drop foot.  I have so many problems I can’t begin to count them.  I suffer just like you.  I’m not one of those people that when someone meets them they say, “But you look so well.”  It’ evident that something is wrong with me.  But I made a choice.  Now you make yours.

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.