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.

Hello,

My Word Press Blog is very messed up.  Somehow, the blogs are out of order.  I don’t know how to fix it.  Surprise, surprise?  I’m no techie and I can’t learn new things.  So until I find someone to help me, for the time being, I will just leave it as it is. It doesn’t matter anyway, for now.

What can I say to you that you don’t already know? I am feeling the way many of you feel a lot of the time.  It seems that with MS you can go for periods where you are “with it” in this world, or you are “out of it”.  I have spent an extended time “out of it.”  So you see, even though this blog is about enabling ourselves to place one step in front of the other and just live for the moment, I can’t even do it myself all the time.  Sometimes you have to crash and burn.  I did.

Don’t get me wrong.  I don’t think anyone else who is not close to me could tell.  I didn’t get that far where I hid under the covers and didn’t come out.  I kept plugging away at my life going through the motions in order to keep the stares away from me.  What a way to live huh?

You see, I’m a person who doesn’t like it when people are walking around saying “poor Maggie”, or “did you hear about Maggie?”

I hate rumor mills because half the time they have it wrong.  It started as a small fish and turned into a whale or just the opposite.  So I try very hard not to give anyone grist for their conversations.  I don’t like ringing ears.  I’m very private and my business is my own.

“What?” you say.  “Then why in the world are you telling the whole world about your days and the things you go through?”  Well now calm down folks.  This is because I am writing the book that I could not find on the bookshelves in the beginning of my diagnosis. 

Recently, I have heard of others who are writing books as well, but its the same thing all over again.  What I mean about that is this.  They write about all their travails and it’s pretty much a book about what they’ve tried as far as ABCs etc…  I steer away from all that.  Oh sure, I write about the things I’m going through in order to inform the public what I wanted to know in the first place–HOW DOES ONE LIVE ON A DAILY BASIS WITH MS.  What next.  What happens to a person.  Do you keel over and die?  Do you go from standing to sitting in a wheelchair in short order?    What happens?

This is just one story.  There will probably be many others once this gets out.  I’m here to address my issues and yours whether it is MS, Parkinsons, or whatever; then I try to put a spin on it where we can do something about it instead of letting it take over our lives for as long as we can

It’s truly been a battle these last few months and funny enough, it had very little to do with MS.  I landed up with a kidney stone that they couldn’t smash up.  So they had to operate.  Then they didn’t take the catheter that was left behind to keep the ureter open for a week out completely after that week was up.  So I had to take it out myself without benefit of anesthesia (topical that is).

This caused a lot of stress………..and you all know what stress does for people with MS.  It exacerbates it.  I continued to have pain down in my vaginal area to this day.  Five months of pain and all the doctors do is send me between them.  “It’s not my department go see a gynecologist.”  Then, “there’s nothing wrong with you from a gynecological standpoint, go back to the Urologists.”

Test after test were done, all of them negative.  The funniest one was the sonogram of my uterus.  Huh?  What uterus?  I had a hysterectomy years ago!  So there we were with goop all over the place looking at nothing.  I didn’t have to call for the results of that test.

Measwhile, pain???  Hey docs I’m in pain!  The urologists gives me these pills that turns my urine orange.  It didn’t do a thing, so after two weeks of that, he gave me another pill that turned my urine purple.  Hey docs, I’m in pain?  I guess those pills were to make my urine less acidic so it wouldn’t burn when I urinated?  I don’t know.

Hey again.  It’s been hours since I started this blog.  I had another Doctor appointment with my primary.

TO BE CONTINUED DUE TO PERCOCET……………………………

I’m back again, but several days later.  Isn’t it fun not having your head on straight and not being able to remember what you were doing or where you left off?  It ocurred to me today that I had a draft going,  I’m here now.

Okay so let’s catch up!  As far as the pain I’ve been having?  It’s still here.  I sit this way and that way and twitch all the time because it hurts where it shouldn’t hurt.  Finally, my gyenecologist found what my problem is.  It seems I have a vulvar lesion and we don’t know why.  He sent in a smear and it came up negative.  I saw him the following week and he did a more painful smear and sent it for cytologic exam.  It too came up negative for STD, herpes, etc…

“Hey doc, I’m in pain?”  Finally, got some pain meds to help me get through this.  Meanwhile he wants me to see a specialist in Philly.  I looked up the Doctor’s name and she is an oncologist.  What???  I was told the good news is that so far, there are no indicators for cancer, but just in case………………..??????????  He wants me to have a biopsy and see this other doctor at a cancer center.

When it rains it pours.  Anyone have a spare umbrella?  There are dark clouds above me right now and I want to poof them away.  It seems the only way I can do that is to take it step by step, follow doctor’s orders and be done with it.  Perhaps then I’ll find my silver lining again.

Ok, ok, enough of this stuff.  So that’s what I’ve been dealing with medically.  It’s a lot of stress and a lot of pain but I deal with it.  My shower is a lovely and perfect place to cry.  The tears mix in with the water coming down and no one knows any better except for the redness around my eyes that I can easily contribute to shampoo or whatever.

You probably are wondering why I just don’t give in to my stressors and let the people around me cuddle me and help me through all this.  The simple but unfortunate answer to this is that I am stronger than they are, emotionally that is.  Oh they know that I’m worried and a little preoccupied these days and some who know me know my little games and second guess that I’m having some pity parties on my own.  This is okay with me, after all what is a party if you don’t have guests?

I just don’t want to have indepth conversations about the things I’m going through.  It makes it seem too real for me and that is sometjomg I just don’t want to have to deal with.  It’s my way of coping until I crash and burn.

I keep busy.  Keeping busy keeps all my fears at bay.  If I have other important things to preoccupy my time, then I’m jappy.  There has been a lot of construcion work going on at my place.  You see, we’re making a Master Suite on the first floor so that I don’t have to deal with the upstairs veru much.  We have turned a two-story home into a Rancher of sorts on the first floor.  Isn’t that a good idea? 

Alright, I admit to being under quite a bit of stress these days.  This leads to an exacerbation of symptoms.  I had become persona non grata for the past couple of months.  Right?  I don’t believe in inflicting the people I love with a litany of aches and pains or worries.  I do state them, but only once or twice.  The rest of the time I answer with a glare and they all know what that means.  It’s been difficult, to put it mildly, but gradually left to my own devices; I found myself bored with myself and my problems.  Mind you, nothing changed symptomatically but a lot began to change psychologically.  When this changed, I found my strength again.

I’m here to tell you, like it or not; people will not tolerate our problems for long and I don’t blame them.  Why?  Because listening to my internal self eventually brought me out of the doldrums and back into the light of day.  I hated being with me.  I was boring to myself and I didn’t do much of anything but suffer.  Which made me think about how dying would be someday.  It’s a personal thing.  Everyone will be sad and supportive up to a point, and then life goes on for them and you are left alone inside with yourself. at least that’s how I feel.  You don’t have to think the way I do.

Our disease is relentless, unpredictable, and altogether nasty.  Add to that the normal other medical things that can happen to a person, which is happening to me right now; well then, what a mess!  It doesn’t have to be that way.  However; it will be at first.  We all have our own way of dealing with a myriad of unexpected medical and emotional turmoil.  I just told you one way of coming out of the darkness of MS along with the possibility of cancer with the additonal turmoil of normal life that continues and whirls around you on a daily basis.  Either you throw your hands up in despair; I did at first, or you turn it around and learn how to like being with yourself again.

It’s a conundrum.  

Now I’m off to Word Press to find out how to get my blogs in the right order.  All my love and prayers are with you all because I know that only we can understand each other.  There is no way others will ever be able to understand what we go through.  You have to endure what we endure to understand it.

I will be back.  Until then, love yourselves and then watch the miracle of others loving you back.

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.

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 am sharing with you a recent letter to a very ill friend of mine.  I don’t know how long he has to live.  My hopes are that he will outlive us all.  But through him and others, I have gotten away from myself.  I have become a chameleon of sorts and taken on their identities rather than being myself. 

Please watch out for this.  It can happen to you as well.  I think it occurs when we feel pretty worthless, helpless, without control of our lives and out bodies.  We seek something that we think we can control.  The only thing that happens is that we enhance someone elses life and not our own.

We are important human beings but sometimes, even I, lose sight of that.  We want to be more and bigger than we are.  When I came to that realization and when I couldn’t figure out where all the time during the day goes, I sat down to think about it.  When I realized that the days were no longer mine but the emulation of someone elses days, I knew I needed to put a stop to it.

Hence this letter…………………………………………..

My Dearest:

I have come to a very difficult decision.  It’s taken a lot of thought and I have been pretty miserable thinking about it. It seems that I have taken up a bit too much on my plate over the past year and the things that I really love to do which takes an incredible amount of intense times, have fallen by the wayside.

I’m not the same person that I am meant to be out of the genre of my predetermined life.  That is; I am an artist.  I make music, I draw, I paint, I turn homes into cozy places that people love to come home to.   I do all sorts of creative things with objects that I find on the street or in second-hand stores.  I’m a writer, a poet.  I love words.  I love telling stories.  I love reading stories.  I help people look inwards and help them find the belief in themselves that they too can do this.  I help people take the ugly out of their lives and turn it into either something useful or pretty.  I turn things around for people.

I love.  I am a lover of people, even those who have hurt me over and over again.  When someone speaks to me, I stare intently at them and they know they are being drunk in by my attentive soul.  They know that someone cares even though they know I’ve heard it all before.  I hug, I touch, I invade the space that people protect for themselves and ask to come in.  If not invited in, if I feel they still need me in their life, I find a way to get in.

I live, I live ONE second at a time.  I don’t care about tomorrow and yesterday have slipped away even as I type.  I enjoy, or I did, enjoy the very second and space that my body resided in.

I’m ill.  I’ve been ill for most of my life, but I endure.  I have endurance and patience.  I take this and gift it to others in many different ways.  I was born to suffer so that others could see suffering and know that it was okay to have a life such as mine and come out on top.  In this very second, suffering is my shadow.  I tolerate the shadow and wish it to go away, but then who would follow me around?  I’ve grown accustomed to it.  Without this particular shadow, I’d only be half me.  So it is what it is and it was meant to be.  I don’t question it, I use it.  I use my life and give it away to others who might gain something from it or not.

There are takers.  They take and take and then abandon me.  I have loved them and they have left me behind.  But I’ve learned that this too is part of my suffering, not just the physical pain.

So in my long-winded fashion, I have come to the conclusion that all these things above are what make me, ME.  I have not been me for the past six months or so.

Don’t be mistaken by this.  I still am me, but I have not acknowledged or participated in all the things that make ME.  There has been no time.  I have mistakenly given away my time to new things when I should have stayed in the niche that I built for myself where I was a happy little camper.  Now I find myself overwhelmed, overwrought, in pain and feeling it, and strangely enough, lonely.  Not only have I been left behind by the takers in my life, I too am guilty of leaving behind the life I built.

To get to the bottom and the essence of this very long letter, I am taking my life back.  I am going back to where I belong.  Back to the happy days of painting, of making music, knitting, reading, loving, and giving, instead of growing inward and thinking only of things that have nothing to do with me or what I want in life.

What I want in life is a little corner of the world to call my own and to be as creative and inventive as I can be and surround myself with all my loves.  I’m taking back my time.

What this means is that I will no longer participate in other venues that have taken up so much of my time and that includes all the programs I have gotten involved with over the internet however, I have grown a family on the internet and those people are now part of my life and I bring them with me.  I will not leave behind anyone that I have grown to love.  One being my Star and the other being My _________among a myriad of others.

I am relieving myself of the stressors in my life and going back to a life of peace and love and in particular music.  I am a song.  I was born a song.

I will still occasionally participate in some of my programs, one of them which was gifted to me from you; but not in any of the other programs that takes so much of my time.

So I am now back to the girl sitting in the front row with the rose in her hand; but this time she hands the rose away so that she can go home and gather more roses to give away.

I know that I have written in circles but only because I know that you will understand the story I have written.  It is a story for you to let you know that I love you with all my heart and you are still a major part of my life and I expect to see you in here regularly as before.  Remember air goes in and air goes out?  That is your mantra. I will still be here checking on you constantly and I am going nowhere far from you.  I will always be just within earshot of you.  I want to be kept up to date on everything that is happening and I will continue to be a member of the family, only not participating in any meaningful way.  It is not my path to take.

So I want you to hurry home and be stronger and better and I pray for you constantly.  You have a place in my heart and there are not many people in there.  You have to help keep it beating.

Get strong and please get better.  I miss you very much.  We have so much more to talk about.  Oh, by the way—–you owe me my Christmas wish.  If you don’t give it to me, I shall have to find a way to get it on my own, and mark my words, I will. 

Take care of you for me and I will check on you later.  I hope you get home soon so you can tweet all you want and get back to Skyping with me.

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 saw my doctor the other day, and I greeted him, I called him “Dr. Reader’s Digest version”.

He looked at me with a guestion mark on his face when suddenly it dawned on him that he had said that to me on my last visit there. My husband was with me on that visit. You see, I was trying to give him an explanation of a symptom and there was no short way to tell the story. Becoming impatient with me he said, “just give me the Reader’s Digest version.” My husband quickly responded by saying “there is no Reader’s Digest version.”

Can you believe that? I couldn’t believe it! Apparently he was in a hurry as doctors usually are.  I was so glad my husband was there because in my usual reactive way, I probably would have gotten all flustered and then lose my train of thought.  But I tell you that stayed with me and my husband a long time after we left that office.

So when I saw him on this visit, I realized I would have to be a bit long-winded again. By calling me “Reader’s Digest”, it gave him a hint that I was unhappy with him and his attitude and to be prepared for a conversation and not just a list of this hurts and that hurts.  He caught on to my message this day and was respectful and let me fully explain to him what the issue was.

POINT:  DON’T LET ANYONE STOP YOU FROM COMPLETELY EXPLAINING WHAT YOUR PROBLEM IS!  No one has the right to cut you short.

I have been distracted of late because a good friend of mine is fighting for his life.  I thought I might share with you some of my posts to him.  Here is today’s.

*****************************************************************

My Dear________________,

Another day has  slipped away and still no word of you.

This is just a short note to share with you what I’m seeing outside my window.  It is as though the sky is ablaze with red fire and even as I type here, it is already changing into a warm pinkish-red.  Isn’t this what life is about?    Every second counts for something?

Change.

The blue is now trying to ovetake the now pink, and the pink is now turning into a mere shadow of what it was.

Change.

Read the rest of this entry »

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.

Hi once again.

It’s been a long time since I have felt like I had anything useful to say to anyone these days only because I have been so focused on myself, that I couldn’t nor did I want to think of you.  How honest is that?

I apologize to anyone who is a new subscriber to this blog, but you will need to get used to just plain ole me saying it like it is and not like I would like it to be.

It’s been several months of some pretty intensive pain, worry, and concerns around here and not just for me.  My husband found out he had prostate cancer and had surgery for that and then I developed a kidney stone from hell, and had surgery for that.  We’ve hobbled around each other for weeks now pretending that everything is not so bad so that the other won’t worry so much, but I’m here to tell you —-  IT’S BEEN BAD.

The negative monster chased me down and gulped me down for supper.  I was his willing victim.

So what?  I am entitled, and during all this; my son and wife gave birth to my grandson whom I have yet to meet, but of course the other half of the family (my son’s family) drove out there for all the festivities and excitement over bringing the new child into the world.

I hate to admit it, but I am so sick and tired of being the last person on the totem pole for everything, and to top it off; there are so many people on the totem pole above me that you can barely see me peeking between the blades of grass in the ground.

Okay, enough of this kind of stuff.

So here we are, it’s almost Christmas.  How do you celebrate it?  I hope someone answers me in a post that I can post on here because I love guest letters.

My most memorable Christmas was when I was first divorced from my son’s father and I lived in a studio apartment.  The kids were coming for the weekend and I neither had the room or the money for a Christmas tree.  On the way home one night, I stopped and bought colored paper (MS blanking out the word), you know the kind I mean?  The ones that come in all sorts of colors?

The kids arrived and they seemed all bummed out that mommie’s house didn’t have a Christmas tree.  But I told them we did and that I was just waiting for them so we could put it up together.  So I brought out the paper and they looked at me with their big brown eyes like I had gone over the deep end.  I told them to hold on to the paper and hand it up to me after we first pulled out all the green ones we had.

I stood on the sofa, we was also the bed we slept in, and they started handing me the green paper.  I reached as high as I possibly could and taped one onto the wall.  Then I asked for two more.  I centered them beneath the one.  Then it was five more, etc., until we ran out of green paper.  I asked for a black one and taped that the other way and on our wall we had taped a christmas tree.

The stood there looking at our funny tree and I could see they were happy with it but also a little disappointed.  I got a brilliant idea how we could decorate it.  I took out three cups and with all the left over paper we traced circles around the glasses.  I cut the circles out and with crayons, we decorated the circles.  When they started to get tired, I told them some ornaments were just plain colored so they were allowed to leave as many as they wanted as plain colors.

We sat in the middle of the tiny room with a myriad of pieces of papers where the circles had been cut out of.  So then I started taping them together any which way and they made garland.  Back up on the couch we all went with our tape, ornaments and garland and taped it all on our Christmas tree.  I wish I had a picture of it.  It was a three-dimensional work of art!

We got down and looked at it and were awe struck by it.  It truly was remarkable.  Then my little boy said, “but there is no angel on it!  Well, that got me a little stumped.

Then I remembered an old pillow I had in a bag to be thrown away.  It was full of this fuzzy white stuff, so we pulled it out and formed it into an angel, but a rather sad looking mess.  I took it to the sink and wet it down and with a fork, I formed wings from some of the fuzz.  Then another idea hit me.  I took down some food color that I had in the cabinet from making cookies and some sprinkles that you put on top of cookies.  I had read somewhere that if you put half a cup of sugar and half a cup of water together and melted them, that you could dip something you made and make it hard, a starch of sorts.

So we took the food color and watered it down and all three of us colored our angel.  I believe we only had three colors.  We left the wings white.  I used some of the sprinkles to make a face on the angel and I had the kids make a round rope for a halo.  Then we tested the water with the halo first and dipped it.  We colored the halo yellow.  We could feel it stiffening as it cooled, and it was at that point that we put a few little sprinkles on it to see if it would stick.  It did!

We then took the rest of the still boiling water and spread it out on a larger pan so our angel would fit, and we placed her gently in it.  I kept using the fork to keep the wings apart and to make the dress more layered.  We emptied out the water and the kids continued to decorate the angels but only when she was mostly cooled down so the sprinkles wouldn’t melt.  I kept on with the fork.  It took a couple of hours laying her over the radiator to get her to dry.

There she was, our angel.  James, my son looked so proud of us.  We had a big problem yet to solve.  I had made the tree as far up as I could reach.  There was no way that I could put the angel on top of it.  We were all bummed out.  But then I went next door to my neighbor’s apartment, a very tall gay man, and explained that we needed an angel putter upper.  He was glad to help out.

When he first walked into our apartment he stood there stunned and said, “That’s the most beautiful tree I’ve ever seen!”  The kids were exhausted by now but they jumped up and down and then showed him the angel.  He said he would be right back.  He returned shortly with a camera and asked if he could take a picture of it.  I said of course, but would he make me a copy of it?  He said he would, (he never did).

He put up our angel and we all stood there in awe.  I started chewing my thumb because there was something missing.  Then I realized there were no gifts underneath the tree.  I thanked my neighbor and finally put the kids to bed.  They both shared the same sofa and I slept in the other one.  They were made to be daybeds so when you went to bed all you had to do was take off the covers and there you go, your bed.

The kids went to sleep very quickly.  I made a phone call to my father whom I didn’t know very well.  He owned a sort of catch-all store in Chicago.  I explained what we had done and that there were no gifts underneath the tree.  I wondered if he could bring some flat little things to put under the tree so the kids would have them in the morning.

I can count on one hand, the kindness my father ever showed me and that was one of them.  He closed the store down and drove all the way up to the north side of Chicago with candy and other geegaws that I could tape underneath the tree.  We had to do all this in darkness with the exception of the little kitchen light and in whispers.  When he left, he gave me an envelope and told me to buy something for the kids and left.  In it was $100.00.  For me that was like a thousand.

My kids were delighted the next day.  Santa had come!

To make this long story even longer, the point of telling you this story was to share with you my fondest Christmas memory.  Those were difficult days at best as today’s days are difficult.  Those were days of great struggles, depression, and great sorrow.  Today is similar.

I didn’t have MS back then.  I was maybe 25 or so, but I was in a huge custody battle for my children and I had enough money to live from pay check to pay check and even then, I was usually still in the hole with one bill or another.  Rent was often late.  Those were days of loneliness and struggle, same as today.

But my children taught me that I could do something about it even if it only lasted a little while–but I could have some control over how I was feeling.  Even recounting this story is making me feel better, it’s that powerful a lesson.

Okay, so here we go.  The holidays are upon us and many of us, including me, don’t look forward to them.  I have many reasons for this but I’m not going into them here.

My family is spread all over the country and none of us can afford to fly to each other for a visit.  The economy sucks.  No one is getting Christmas presents from us except maybe some small gift certificates.  That’s all we can afford right now.  We had to go outside of our insurance for some of my medical problems and the costs pretty much wiped us out.  Everything we have done for our children and other relatives for the last several years has been done on credit cards, and now the credit cards are threatening to overwhelm us.  So that’s it.  From now on Christmas will be in-house for whomever chooses to come visit us and the rest will get gift certificates.  That’s all we can do.

But you know what?  Now I feel like Christmas.  Remembering that story makes me realize that there is truth in my own words and slogan for this site, “Enabled by Disability.”  So you see folks, WE are the ones who control how we feel for the holidays.

I’m in a lot of pain here from a recent surgery to remove a stone in my kidney and now there is a secondary problem.  My husband just had surgery for prostate cancer.  There is a lot going on around here besides those two things, but I can sit here and dwell on them or not.  My best friend is probably dying and that breaks my heart, but he has such a positive attitude.  He keeps saying “All is as it should be.”

Think about how you’re feeling right now.  Are you happy, sad, hum drum, Mr. or Mrs. Scrooge, out of control, helpless, disappointed, lonely, and so on.  You know what I have to say to that and only because I have to say it to myself as well?

SO WHAT!!!  BIG DEAL!!!!

I can do something about this, and so can you.  We will talk again soon.  I’ve been lax, but I’ve been busy running around from Doctor to Doctor getting things shoved in and out of me and so forth.  I’m waiting for the results of some things and I’m on so many pills, including pain pills that I can barely see any more my eyes are so bleary.

I’m going to make this a Christmas I can tolerate.  I’m not going to lie to you and say “I’m going to make this a happy Christmas.”  It’s not, but I will make the best of it.  I will do it because I can.  You can too.

Merry Christmas and Happy New Year in case I don’t get back to you before then.  I hope I will though.

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 been thinking alot these days about friends and family who are just not doing anything with their lives whether they are disabled or not.  Don’t they get how short every second that passes by is?  That when you take your next breath, the last one has already dissipated  into the past and can’t be recalled.

Don’t they get that that minute, two, 5, an hour, however many hours; that are spent in abject despondency is also lost to the past?

Aww come on now?  I’m not in the best of moods.  I have to pee. I’ve barely slept.  My stone in my kidney is playing with me, I have a ton of things on my mind.  What I am is exactly like you!

But I refuse to be robbed of my time.  Worse than that, I refuse to give my time away to my depression and despondency of what could have been or what might have been.  Yeah, it’s on my mind a lot too, but I’m not going to dwell on it to the point of becoming utterly useless and crawling under the sofa like some dirty lost sock that’s not found for weeks.

I’m not going to say much more.  Like I said, I’m in a foul mood.  But when you’re down, sick, despondent and the list goes on forever, the best thing you can do for yourself is————–wrong—————not go to bed and hide under the covers.  The best thing you can do for yourself is to absolutely grab yourself by the scruff of your neck and force yourself into the shower and then get busy doing something…..ANYTHING……but……..SOMETHING.

I don’t care if you give yourself a manicure, or you walk your dog, or throw dishes around the kitchen, or even fight with your spouse, but DO SOMETHING.

Here’s what I did in my bad bad couple of weeks.  That’s all I have to say for this blog.

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.

We have had a difficult few weeks in our home.  We all know what that can do to a person with M.S., but that goes without saying.  It began even a few weeks before this when we discovered that my husband had prostate cancer.  Grant you his Gleason rating was low, but our internist thought it should be checked out anyway.  After a series of Doctor visits, it was decided to remove the prostate.

It was a nerve wracking time.  My husband had never undergone surgery before and in fact, seldom became ill.  I went with him on his visit to the surgeon and what surprised me was that we were told, that once a cencer victim, always a cancer victim even if the cancer was removed.  In other words, there was no guarantee that the cancer had not already taken hold somewhere else in his body.  After all cancer are cells and they travel at will.

I never understood that.  I thought, well we can remove it and that’s that, but that is not the case.  He will have to be carefully monitored for the rest of his life.  That was a scary thought.  Something else to ponder over and worry over.

I was very proud of him.  On the day of his surgery, although  looking a bit pale, he  went in like a champion, ane cme out liek a sleeping baby.

I’m sorru, I’m havfing difficultu tim seing rjt now so ill get back to u in t morng.  see ya latr.  it’s abt 5am right now….sleep needed

Okay my dear friends, I’m back and so sorry I had to cut out on you.  Sleep is always helpful and curative in its own way.  Where was I?

oooh…..I should take that sentence out about not seeing very well but well folks………my promise to you was to always keep things honest amongst me and you so I guess I will leave it in.

Okay.  David came out just fine but very sore.  He came home in 24 hours so he was tickled about that.  He hates leaving me alone particularly since I just started having some strange pains of my own that I didn’t think were related to MS but more on that later.

The time that David was gone seemed like a month to me.  I just don’t realize how much he does for me until he is gone.  There was so much to think about and remember.  I am very spoiled by him and I thank God every day that he blessed me with a husband that is so kind and understanding.  He nurtures me whenever he can and shows his love that way.  He is a quiet man but says so much in a thousand different ways a thousand different times a day.  So yes, I sorely missed him and all the quiet “I Love Yous” that he says every day to me in his fashion.

I was excited to have him home.  I prepared the house for him the best I could, cleaning as though guests were coming over for the weekend.  Making sure the bathrooms were antiseptic and having everything else I could think of ready for him.

He hobbled in, and I thought to myself, (welcome to my world), but didn’t say it out loud.  I think later I did because he was so astounded at how incapacitated he was from having this surgery.  Every day is like having surgery for us as well and I think he began to have a more deeper understanding of what we go through on a daily basis when we can’t even reach for a cup sometimes from the cabinet.

He was so brave and tried to be useful immediately, but found he couldn’t, so he spent most of the first few days in bed sleeping and taking pain medications.  A Home Nurse came out and made sure that he was recovering okay and unfortunately introduced him to the world of pad protection in case of leakage.  I believe that’s when I said “welcome to my world.”

He’s now almost fully recovered after about two weeks and actually went back to work in about a week.  He took short hours at first but rapidly went in full time.   He said the most difficult time of his recovery was dealing with how long he had to keep the catheter in.  I’m not a guy so I can’t explain how that must have felt, but I do know that it was irritating and painful for him.

So all of you guys out there listen to me.  HEAR ME!  My husband was the sort of guy who seldom was ill so he seldom felt a need to see a doctor.  He only saw one when he had the flu but didn’t see one on a regular basis.  I kept pestering about getting a checkup which he kept putting off for several years.  This year I put my foot down.  I just made the appointment for him and told him to be there.

It was because of that visit that he discovered he had cancer.  His doctor and I argued over who saved his life, me or the doctor.  The doctor believed he did because he said most doctors would have ignored such a borderline Gleason score, but he didn’t and sent David for further testing.  True….alll true.  But then I argued back with saying “well if I hadn’t made him come in in the first place, none of this would have happened.”  LOL.

As it turned out, David’s pathology came back with a Gleason score of 7 not 6.  Right now he is clean as a whistle and let’s pray nothing further comes of this, but the rest of you men MS or not……..GET AN ANNUAL CHECKUP!!!!!

I would just like to add one more thing to this post.  Grant you, this is a blog for Multiple Sclerosis but it’s also about the life of one person living a life with Multiple Sclerosis.  With this comes all sorts of other factors and one thing I always stress is that when there is a patient in the house, THE REST OF THE FAMILY ARE PATIENTS AS WELL.  They too need help, understanding, guidance, etc.

Unfortunately, for many families, MS is enough to break up a family.  This breaks my heart.  I hear their stories and it just breaks my heart.  Go ahead, you can see for yourself on other blogs how these have happened.  But my focus on the outcome is different than theirs.  I have to look at it as then (perhaps rather coldly to some), the marriage wasn’t going to last anyway and here was the perfect excuse.  I’m sure I’m wrong about some but not about many of these family situations.  There are some people who just can’t handle such a dramatic change in lifestyle.

So in ending, as I always do–I am fortunate to have David’s Love.  This is what keeps me going.  Without him I don’t know that I could be the person I am today with this disease.  With his help, I can take my topsy turvy world, turn it inside out and this way and thay way, and figure out the best way to go from here.  That is all because of him and in part because of who I am.

So to my David I say, thank you for your love and protection (although at times it strangles me).  I know your heart is in the right place.  Without you, I could only be partly me.  You complete me and I am blessed to have you as my husband.

This ends PART I of our difficult few weeks.  I will continue with part two later today.

One last word.  Many newcomers have signed up to this blog.  I want to welcome you all.  I’m usually more prolific in writing in here but times have been difficult.  Please feel free to visit the “SHOUT BOX’ at the bottom of this blog.  You never know who you might find in there.

I tried to have a chat room going on a regular day and hour but found myself in there all alone.  So now I rely on the Shout Box and poke my head in there once in awhile.  Snif Snif, no one has come in.  Maybe amongst yourselves you could set up a time that is convenient for all of you and I will stop in?  Think about it.

Please tell everyone you know about this blog.  It is going to be published as a book someday, hopefully soon.  Please feel free to input your own stories and send them in to me.  Do keep in mind that this is a blog about how to try and turn your life that has already been turned inside out, upside down, and every which way.  I am looking for honest stories of sometimes the most difficult things one has to contend with as an MSer and very embarrassing as well.  Not just MSers but others as well.  I have received some stories already that have been of great help and the one entitled “A Friend Indeed” seems to be the one most commented on.  You can identify yourselves or call yourselves whatever you want.  I truly want to put a book out there that tells people, okay so now what? 

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.

Please pray for my husband today.  He is having surgery and I just had surgery.  I’ll tell you moren about that next time.  Today it is about him.

Your prayers are greatly appreciarted because I believe in the power of prayers.

Thank you.

i_have_a_wish_magdalena

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 was going to start this note by apologizing yet again, but it’s rather pointless isn’t it? With MS, one never know when one is up to placing their deepest thoughts down on paper.

So instead of doing this any more, just keep in mind that I am always with you and that you are in my thoughts all the time. I also feel a sense of guilt when I haven’t written in a while. I think that is enough punishment without including an apology to boot.

In saying all this, I am ill once again. My temperature is running around 103.? Whenever I don’t take aspirin to take it down. I don’t feel like I have the flu, yet everything hurts. All my bones hurt. I don’t have a cough, but I do have a mild headache. I also find myself drooling sometimes. Is that not strange?

I hope the link works for the song that I’ve included. It is my prayer to all people who are in pain and that includes you, although initially it was written for one particular person who was enduring a lot of pain at the time.

So I’m sitting here waiting for a call back from the Doctor’s office to see if they can see me today. I’m absolutely completely miserable. What is it about a fever that does one in?

Good News: I’ve joined the Robert Wood Johnson Health and Fitness Center. I have a personal trainer and I’m trying to prevent having to get locked into a scooter, wheelchair, or electric chair. I don’t think that I’m strong enough to do it though. She is a very good trainer, but if the brain doesn’t connect with the legs, add to that lymphedma where my legs look like two tree trunks part of them turning blue/black, and incredible weakness; fatigue; effects of medications; I just don’t know. One thing I do know is that I will keep on trying until my payment for my trainer runs out. Then I will reevaluate the necessity of having a trainer after 16 weeks of paid visits. I still have full membership to the club and I think that I can get along on my own after that.

Those of you who don’t know what a Health and Wellness Center is need to go find one and investigate it. I was nervous at first thinking there would be all these buff people running around with gigantic muscles and teeny tiny butts. Instead, I found people using walkers, canes, neck braces and every sort of paraphernalia you could think of for those who are injured or unwell. Then of course, there are just the aged people as well.

I felt comfortable immediately when I went to the heat controlled pool and saw all this sagging skin and no one was looking at anyone else with judgmental eyes. I had to get a release form from both my neurologist and my internist and there is a nurse on the premises who checks you over first. Ugh….she also tells you your fat to muscle ratio and believe me it wasn’t good.

Bad News:  Outside of the fact that I’m ill, my husband is ill as well. So when it rains it pours. He is having to deal with his medical issues alongside me and I have to tell you, for a man who has been healthy most of his life, this is quite difficult for him. Hopefully this will all be resolved shortly and then he will be monitored for the rest of his life.

There are other good news and bad news but quite frankly I’m sort of hunkered down in the Bad News hole. It’s like preparing for a tornado. You get your flashlights, water, food, radio, batteries, toilet paper etc…

I’ll be right back. I just got a call from the doctor’s office and they want to see me right now.

Well now I’m back to 103.7. It seems I have a urinary tract infection; they think. So I’ll start on antibiotics and go back in a week to see if I feel better.

Look, I hate to be blunt, but it has been a long day and I’m so hot right now that I’m turning into a puddle on my chair.

I will talk to you as soon as I can or as soon as I will.

Remember, this too will pass and look what I can do with it! I can share it with all of you so you know what to expect.

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.

The night before I went into the hospital, I was feeling unwell. I went to bed as usual in my hospital bed which is in the same room with my husband. During the night, I endured a multitude of painful spasms in various parts of my anatomy that made me cry out. My husband later told me heard me cry out several times but apparently he went back to sleep. This, of course, left me with a huge question mark on my face, like the Scarlet letter, that I wore all morning. Why hadn’t he approached me to help me, I wondered? Why just turn over and go back to sleep?

Later on, when things calmed down, I finally fell into a restless sort of sleep. I did see the grey of dawn approaching and did my best to ignore it. I succeeded although that must have disappointed the dawn as I’m usually so happy to greet it.

When I finally woke up a couple of hours after falling asleep, I found my sheets saturated in my urine as was my nightgown. I began to weep, and quietly started disrobing my bed, as if it were a person standing before me anxiously waiting for my next move as I unclothed it. Instead, I was like an angry lover, tearing away at the bedclothes as though meaning to do harm to it instead of quietly and languorously crawling into it and covering myself with it till every nook and cranny of my body was covered by it.

After the sheets and bedcovers were strewn all over the floor, my husband poked his head in and asked if everything was okay. He could see that I was in tears and said, “what’s wrong?” I then told him that I had lost complete control of my bladder after spending the night in pain. His response was, “Well it’s a good thing you bought the bed sack to cover the mattress with.” Since I’ve had Multiple Sclerosis, I have had other incidents such as these, and since I recently bought this bed, I had just bought the cover for it that week.

I stood there a moment preparing to take my nightgown off next and found that I couldn’t do it right then and there. Instead I looked at him and burst into tears and told him to go away, that I had already taken care of things. I felt ashamed, ashamed for having done such a thing during the night (not my first time).

When I finally went down the stairs I asked him, “Is that all you could say? How could you not come and comfort me instead of talking about the bedcover?” He had no answer for me, but I could see that I had hit home. He then continued preparing to leave for work, and left.

After he was gone, I finally let go of all the tension I had been trying to hide. Yes, I know that I had cried a bit upstairs but when I came down I was cool and collected, cleaned up and prepared for my day. I sat at my desk, and started shaking, and then the myoclonic jerks began. I tried to get them to stop, but they wouldn’t. They would occasionally abate but then start up again.

The jerks continued and were incredibly painful and made my neck whip around. I was already suffering from headaches with a very tender neck, add to these the myoclonic jerks; I felt that I was coming undone.

I wear a lifeline. It’s a gadget that people wear around their necks in case of an emergency. It’s a good idea to have one if you live alone or spend a lot of time alone. Every month the lifeline reminds you to reset it. It usually happens after a call, where you will hear an automated voice says “It’s time to reset your lifeline. Please press the lifeline button.” It repeats the message every time the phone rings and you hang up. I had ignored it for several hours because I was in the middle of my work and didn’t want to stop, but after awhile, there was no work to be done. There was only squirming and jerking in my chair.

The longer I jerked, the more unwell I felt. I decided to cal my neurologist only to find out that he was out of the country. When I spoke to the nurse at the office, she could tell something was wrong. I was continuing to jerk during our conversation, and sometimes when they are particularly hard, all the air whooshes out of me and a sound comes out of me. She heard me and asked what was going on. I told her and asked to see my doctor and that’s when I was told he was out of the country. She offered to schedule and appointment with him a couple of weeks after he returned. I hung up.

The lifeline message came on the phone after I hung up and I knew if I didn’t reset it, it would go on for hours that day. I decided to reset the button and when I did, the operator could tell something was wrong. He asked me if I needed help, I said not necessarily and explained what was happening. He wanted to send an ambulance, and I asked him not to. He then offered to call my husband so that he could take me to the E.R. if that made me more comfortable. Meanwhile Lifeline would notify the hospital that I was on the way.

My husband arrived and we went to the E.R. They took some blood work and put me on Dilaudid I.V. It is supposedly six times stronger than morphine. I went into a relaxed fugue state while waiting for the results of the blood work.

Upon the return of the blood work, it was decided to admit me. My CPK-MB (Creatine Kinase-MB) was three times higher than it should be. Which was of great concern to my doctors. (a high total CK could indicate damage to either the heart or other muscles, CK–MB helps to distinguish between these two sources.) This information can be found at:

http://labtestsonline.org/understanding/analytes/ckmb/tab/test

There was evidently some damage done to my internal muscles which includes my heart. I was told that it was probably the intensity and the repetitiveness of the myoclonic jerks that caused these levels to rise, and once they got them under control that they would normalize again.

After four days in the hospital, these values had reduced to double rather than triple and it was determined that I could safely return home.

Various specialized Doctors have been in and out to visit with me. I repeated my story over and over again.

1. Months earlier headaches and neck pains.
2. Return of myoclonic jerks.
3. Cramps
4. Loss of bladder control.

Could any of these have been circumvented? No not with Multiple Sclerosis.

Meanwhile the Neurologist replacing my doctors noticed all the different medications I was on and asked specific questions about the names of the drugs, the dosage, and why I was placed on that medication for what symptom. I was completely flustered and embarrassed because I could not remember the names of the drugs and why they were given to me nor for what symptom.

It astounds me that even Neurologists don’t seem to comprehend the extensive loss of memory a person can have with M.S.

To make this long story shorter…..because I’m just tired of writing about it.

In summary: I’ve been ill. Wasn’t sure why but have been having problems with headaches and neck problems. Last week it all blew up and I had a bit of a meltdown that landed me in the hospital.

I am home now. None of my problems have been resolved. There is very little anyone can do at this stage of the game except to treat the symptoms, tweak medications etc…. I wasn’t even placed on steroids. Major concern for this hospitalization? Major organs shutting down or damaged.

So onward and upward we go don’t we? I’m home, I’m still feeling unwell but hoping things will get better eventually. Meanwhile life must go on.
What do I always say on here? All together now!!!!

What was that? I didn’t quite hear you?

That’s right! How do we turn all this around?

Well yes, life can be real shitty and I’ve been dragging my butt around all day long feeling depressed. I’m entitled just like the rest of you. BUT NOT FOR LONG!!!!

I cannot stand feeling this way. I’m not the sort of person who loves living in the dumps and who enjoys having pity parties and you know why? Because no one will come to them eventually. At first your good friends do, but after awhile it’s just same old stuff, and boring even to me. So why have them? It’s a personal thing now.

So, fight like hell to find something to distract yourself. For me, I called today to start a yoga class. Yep you heard me right!!! I have terrible ataxia, but by golly I’m gonna go do some yoga. Something outside of the box is what is needed when times get tough.

Fight like hell. Cry inside, cry outside, but always fight your way out of it and live. Not only that, show other people how to live in a topsy turvy world of M.S. You’d be surprised how many people notice it and learn from it. If nothing else. Be an example of how disabilities can actually turn into abilities to make changes in the world around you and for yourself.

Fight.

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.

Well I’ve come full circle yet again this year because I am writing to you from my hospital room. I have been here three days going on 4 now and as usual, I am not a happy camper and everyone on this floor knows it.

We all know how difficult days are don’t we? How we have to struggle just making the smallest things work for us. The heavy duty thinking that has to go on before we are able to make the simplest of decisions. Sometimes those deicisons can become an impossibility so we lie to get out of making that decision and or we avioid discussing it right at that memoment.

I am having a difficult time writn I WILL WRITE BACK OTMORRWO.

Go into the SHOUT BOX and find me in there. If I’m not there find me on SKYPE under dididum2 and tell me to get my butt in there. I usually am working on a piece of music and forget about the time so that’s the fastest way to get ahold of me. I’m also on FB. I also have stickies everywhere so let’s hope I don’t forget.

Where did I leave off? Oh yes. I was struggling with the decision I had to make that I had kept to myself for three days. Here it is.

I was driving on my way to my Knitter’s group that I had formed ten year’s ago. I had stopped going recently for several months because I was having difficulty with a form of narcolepsy, where you suddenly and inexplicably fall asleep for a few seconds, minutes, or however long it takes. I was also begin to mistrust my visual acuity with seeing double, and with one eye behaving one way and the other eye looking in a different direction as confirmed my eye doctor who prescribed a prism for my glasses to help correct the muscles in that straying eye.

It was because of these problems, of vision, falling asleep, concerns over my reflexes and my slowly becoming aware that I was also misjudging distances between cars and the time it took to break between say a yellow light and a red light, that I imposed a no-drive-zone on myself. No one had to tell me to do this. I just did it. I simply told my husband that I didn’t trust myself driving too well and that I found myself straying now and then over the yellow line; therefore, I would give up my knitting classes as an obligatory commitment and would go now and then.

I didn’t go for several months and the group lost all its newcomers because apparently they missed me as their teacher. I do admit; I am a wonderful teacher because I love to teach.

Two weeks ago, although I had asked the girls to take down my sign from the coffeehouse window, a young lady called and was dying to learn how to crochet. She told me she taught middle school in a not so good neighborhood and wanted to teach them to crochet as an outlet as a means of managing anger. I told her that was a wonderful idea and told her how I taught at Riverside School for that same reason and the wonderful feedback I received from the parents. So I agreed to come in again for her.

My husband was not too happy about this. I told him I would be fine. I had recently drove into Princeton for a dental appointment and that went okay, so I had a bit of confidence back. I did not take any medications prior to going thinking that perhaps that was the culprit.

On the way there, I did fairly well. I did find myself drifting a bit to the left. I always drift to the left. I then concentrate on the right line, but then I over compensate and land up getting into trouble that way. But all in all it was good.

When I left the coffeehouse it was nearly 2:00 p.m., a bad time of day for me. That’s when everything begins to go downhill for me as far as energy etc…and after a day of teaching, well watch out! I was concerned about the drive home, so I stopped along the way at Target, then at Michael’s. What I didn’t realize was that I was just adding to my fatigue and I should have understood this. The last leg of the journey was all highway and about 15 minutes of it. So I got in and off I went.

I hear horns honking at me, looked up and realized that I had strayed into my left lane into oncoming traffic. I had fallen asleep. I corrected myself and made it the rest of the way home just fine. I rationalized it in my head and told myself it was a fluke and that I had accomplished a lot that day. I did mention it to my husband because I don’t keep things like that from him, but I made light of it. I made it sound like it was no big deal and to me, I had rationalized it so much in my head, that it was NO BIG DEAL.

You see, I had so enjoyed getting out and about again after several months of being locked up. I had real people to talk to and nonsensical chatter to listen to. I could say something and someone would answer me back. People looked at me and paid attention to what I said. I had a name, I had an expertise, I was “someone” outside my home. Inside my home I often felt like the plant that sits on the table top that waits for watering, although I get much more attention than that, so much more. What I’m talking about is the psychological aspect of how I feel. I feel like the plant.

That lady was so excited about the last and we made plans to meet this week just past again at the coffeehouse. I went through my books and found some crochet books to help her get going, I found a nice knitting bag for her and some extra accessories that I would give her to help her get started. Off I went.

I was in trouble almost from the get go, not so much from sleeping but from the ability to judge distance and speed. I was taking turns too fast and practically slamming on the brakes every time I had to stop. This was making me rather nervous. Everything had fallen off the seat next to me where all my knitting gear was and was strewn all over the car bottom. The strange thing about it is that I was visualizing myself in a nicer vehicle with deep concentration. Maybe that had something to do with? So I thought okay, enough visualization for me, stay in the here and now. Nevertheless, I continued to do my wheelies all the way there after getting lost several times. Now why in the world would I get lost going somewhere I had been to so many times before?

I was late, as usual. When I arrived there were two people in the group….TWO. Yes, I know, it’s summer; people have places to go families to be with and all that stuff I know nothing about (that’s a different book), but for crying out loud—my new student wasn’t there!!! She was the one I had gone to all this trouble for.

Here’s something I promised I would never do in here. Ready?

I am stomping my feet, pounding my fists on the desk and having a hissy fit and saying #$#$ %^%&&.

I feel much better. The reason I’m having a fit is that I’m finally getting to the reason why I had this dilemma in the first place and in my usual long-winded story-telling way, I’m getting to the point of the story. On the way home, I fell asleep but this time I had strayed to left two lanes over into oncoming traffic. This meant I must have slept longer. All sorts of cars were honking at me. When I tried to correct myself I jumped in front of a car and almost caused a major accident. I was in the far left lane and looked for a way to get off the highway with my heart hanging out of my mouth. There was no way to quickly do this, and while looking for a way out——I fell asleep.

Okay folks, now I’m crying. Again, the car horns were honking and again I was two lanes over, and yes again I had to get out of the way of oncoming traffic, and yes, I almost caused another major accident. This time not only was my heart in my lap now, but the tears were rolling down my face. I could see that a bunch of people were on their cell phones and I knew they were calling the police. I had to get off.

I found a way to get off and off I went. I found a nice quiet spot in a side road down some fields and sat there and coaxed my heart back into my chest and waited for the flood gates of my eyes to shut down.

I didn’t have far to go at this point to get home and I made it there in one piece. I’m ever so grateful that I did not hurt anyone.

WAKE UP EVERYONE. THIS IS MS. This is one way it can affect you. Many are afflicted physically and are intact mentally. Many are afflicted mentally and are intact physically. And joy for joy, there are people like me who are afflicted both mentally and physically.

I did not say anything to my husband about it because I knew that I would have to give him my keys when I told him. This would have to be a voluntary action on my part and I just couldn’t bring myself to do it quite then. I looked for advice from some friends, but none were available at the time. So I struggled with this.

Ultimately, after three days, it came to me that there was no decision to be made. Either I get in the car and kill myself taking some people with me, or I don’t. I took out my car keys and went in and talked to my husband and told him all the details of what had happened. He was understandably upset and said “You can’t drive.” I’m standing there holding my keys and license out to him visibly shaken and crying and he states the obvious.

I place them on the coffee table and go into my studio to do some work. He comes in and tells me I need my license for identification purposes. It was then that I ask him not to do anything with the car yet. That I could at least drive 5 minutes away to the surrounding stores to get small supplies safely enough. We agreed on that compromised only because of this. I seldom if ever do that anyway. He just goes right after work.

So here is something we can talk about tonight along with anything else you might want to talk about. How do we turn this around? This is a site about enabling ourselves. Right? I’m still a young and vibrant person to me but if you take away my wheels and leave me in suburbia I will be like a butterfly whose colors will fade and eventually you will have to pin me to a board someday. It will age me 40 years I think to know that I can never leave my house again on my own. That my identity and my ability to lead my life is by being led by the nose by someone else. I can’t have this happen. I simply can’t. I started out my life this way and there is no way possible that I will end my life under the control and decision making of someone else. I won’t allow it because married or not, this is MY life, this is MY body, this is MY heart, MY soul and spirit that is being locked up.

See you later tonight!!!