Depressed here. For all this talk of rainbows, the glass half full and silver linings; I’ve looked everywhere today and haven’t found one. So it goes, the ups and downs of having a demyelinating disease that eats you up then spits out the remnants..
What gets to me is that I have a supportive husband and friends and yet can’t talk to any one of them. Why? Because I know they have heard it all before and I’m being polite in not sharing with them. If I should tell them there is no reason for it, they look at me like I’ve lost my mind. I get these nibbles of happiness and then they slip away as fast as they can. I have to admit that I don’t get it.
I think that loneliness plays a big part in all this. The only people who can truly understand what you are going through are others who are going through the medical nightmare that we go through, not just MS.
There is another factor that plays a role in our ups and downs. For me it is holidays. I pretend to not care about them and for the most part I don’t. What I do care about the holidays is that they don’t exist in our houe. By this I mean that one day is like another. My husband is a wonderful caregiver but he worries so much about me that I am literally gasping for air with wanting to do something normal and FUN. What happened to FUN?!!!
Caregivers need to understand that we have a medical condition/disease. Most of us don’t have one giant lesion in our brains that makes us incapable of doing many of the things we used to do. I don’t know about all of you, but I need to get out once in a while to have some fun and be around other people other than my spouse. It’s like the song, “People Who Need People”.
If you listen carefully to the words, they are beautiful.
Caregivers and MSers who just stick to their homes are depriving themselves of the wonders of other people. Sure you have to take the good with the bad, but the good far outweighs the bad and it’s wonderful. It does so much good for the soul. Even if you’re in a wheelchair, scooter or using a walker or cane, at least you are out there. Those of us with incontinence, put on a diaper. So what! Come on! Live!
What is the point of holidays for us if we don’t have holidays within our own homes. I was like this, this past Christmas. No one was coming and we could not go anywhere due to both of us being ill. But my spouse put up the tree himself. Then I got into it a bit and did some decorating myself, but at the end of it all, no one came and so I just gave up on holidays myself.
I realized how stupid I was being because after a while, I realized that oftentimes people didn’t come out to us for one reason or another, but we celebrated anyway. Our families are widespread and live all over the world. It’s impossible to get us together all at one time. So what gives here? Why the depression?
I think it is mainly pain. I’ve undergone several procedures over the past 9 months and I’ve been in constant pain. The drugs I take for the pain makes me unable to drive and/or gives me a narcoleptic syndrome where I fall asleep at the drop of a dime. My friends think it’s funny because I will fall asleep for a few minutes right in the middle of a conversation and then when I wake up I pick up right where I left off.
So to be completely honest with you, I don’t feel like analyzing myself right now. The next couple of blogs, I am going to introduce you to a couple of people who also have disabilities and they’re “Now What?” lives.
If you’re looking for me, just look up when you come inside. I will be climbing the walls somewhere in the house.
Let’s see. Where did I leave off.
All of this started almost 9 months ago. I am still in limbo as far as a definitive diagnosis is concerned, but at this point, I hardly care.
WOULDN’T IT BE LOVELY TO HAVE ONE DAY, JUST ONE DAY; WITHOUT ANY PAIN WHATSOEVER? To be able to dance and run, to have strength, to have endurance, to be able to have a true belly laugh without fear of incontinence, to clean the house from top to bottom instead of hiring it out, to play ball with the dogs, to have sex with abandon or for that matter to have a libido?
I am a lady who sits before you with a multitude of problems. I have been turned away by two neurologists who tell me I’m a too complicated case and that I need to see a specialist in MS. I have one!!! He wants me to have a local one who can deal with the day-to-day problems of meds etc…
I’ve had many surgeries. I almost died last year. Now I have the added fear of cancer just around the corner as a strong possibility. Where is the silver lining you might wonder. How is she going to turn this around this time? Right?
Yes, I still have dreams and ambition but they seem insurmountable at times, in fact; most of the time. My goals in life are not solely for myself but to help others. I am working hard on finding an alternative method of income for all of us. I write music that has made people cry and laugh. I teach. The price I charge is a hug. I’m an artist. I paint everything in sight including all my walking aids. I just figure if I have to look down at a walker, it better have a picture on it that makes me smile. I am compassionate and passionate. I have emotional strengths. I listen well, therefore I am good at helping others. I am not judgemental of people, only of what they do or don’t do. I am a gifted and humane person and I’m patting myself on the back right now because there is no one else to do so, yet I know that I am talked about all over the Princeton area with admiration.
What I am most of all is lonely. The second thing I am is angry. The third thing I am is resolute. All this leads to my becoming a fighter and a doer.
Where is the silver lining? I am here! You are here! I write the words, you read them. I can’t stand the words ‘YOU CAN’T.” I CAN. Do you hear me out there? I CAN, and I WILL.
Each and every day is a challenge. We don’t know what we will wake up as. Are we crippled today? Are we so spastic that we can barely move? Are we cognitive today? Can we speak clearly and not slur our words? Can we remember people’s names? Can we retain knowledge today? The list goes on and on and you know what my answer is to all of this? Yes, yes, yes, yes.
Yes, we all have our hardships. But think about it. It’s a new day! Every day is brand spanking new! Now you can make the most of it or you can hide beneath the covers and let it slip by. I’m asking you to try not to do that. Beautiful things can happen whether you are disabled or not as long as you are out there offering yourself to the world. Who cares if someone likes you or not? Who cares if someone looks at you with pity because you are using a wheelchairs, walker, cane, etc…? So what if they stare? Stare back and smile.
The other day when I was feeling like I was the most stupid person in the world, I received a phone call from someone I’ve never met before. As the conversation went along, suddenly I felt myself being lifted and gently placed on a pedestal. I couldn’t stand on it, but I could sit on it and swing my legs. By being placed on that pedestal and being only 4’10 1/2″ tall, I saw the world from different perspective. I was enlightened and my burdens grew small. I was on top of the world because one person, just one person decided that I was worth a pedestal to sit or stand on. Had I been hiding under the covers, I would have never met them. All of a sudden I had another fighter in my corner and strangely enough, he too has his own disabilities. So here you have two people with their burdens in a backpack on their backs, laying aside those backpacks, and suddenly feeling 10′ high.
I continue to go through everything I’ve been going through and now I have another added scare, but you know what? It doesn’t matter. When “like” meets “like”, the whole world makes sense. You have the same possibilities, but you have to be out there fighting. Fight for you and fight for the rest of us. We can get through each day, five minutes at a time. Don’t look at the whole day ahead of you, just look at those 5 minutes. Make the most of them.
I don’t feel so lonely anymore. I don’t have to cry and look into a mirror, touch my face with the tears streaming down, and comfort me with my own hands upon the mirror because there is no one else to do it. I consider every day a day of possibilities.
My silver lining? IT IS YOU!!!
Here we go with Part 2.
First of all, before I continue, did you sleep well last night? I hope you did. I hope you had lovely dreams of the person you were and the person you still are.
Our bodies have changed much more dramatically than others. But realize this, their bodies are changing as well. Whether its biological or emotional. We’re all in the same big boat but some of us are off in little boats paddling around in circles sometimes for fun and sometimes because we are lost trying to find our way home.
But we are home! Home is inside us. Home is what we make it. If you want a sad defeatist home, you may have that. If you want an uplifting home where your house is picked up by a tornado and plopped down in a different location, you may have that too.
Home, Church, God, lies within us. We make it what it is. So I hope you had sweet dreams in your homes.
Back to the story.
After I had the stone removed, I was left with a catheter still in me to keep things open and working. I was told it would be removed at the following office visit. I couldn’t wait to get that painful catheter out of me.
At the office visit, I was placed on a table and given a shot of some sort, I guess to ease the pain of the removal of the stent. There was a nurse present in the room holding paper towels. The Doctor eased the stent out and I felt a spasm in my bladder. I saw some blood on the sheet. It took just a few minutes to do this.
He said I should feel much better after this and to come back in two weeks. Then the nurse handed me the paper towels and told me I might need them to clean myself off. They both left. So there I sat, an MS patient on this very high table in pain trying to figure out how to get off of it without killing myself on the way down.
I did manage to get off the table but I had to turn over on all fours and ease my way off. The minute I stood up, I felt another strong and painful spasm and this time urine came flowing out all over the place. Hence, the reason for the paper towels I guess. I cleaned up the best I could, got dressed and walked out.
All the way home it felt like nothing had changed. When I got home I told my husband, “it doesn’t feel like the catheter is out.” I went online and checked to see what happens to people when they have a stent removal and their stories were similar to mine except they felt immediate relief.
The next day I crawled up the steps to the bathroom to take a shower and while crawling I felt something dangling between my legs. I stopped and looked and saw this strange plastic thing hanging there. I went up the rest of the steps and into the bathroom and looked again. I pulled on it. It was then I realized that it was the stent! He had not completely removed it! I was shocked. I decided it had to come out. So without benefit of anesthesia I gently pulled on it. It elongated and I realized it was plastic and had this strange curly end to it.
My hands were shaking but I pulled on it again until it came completely out! I had another bladder spasm and a mess to clean up. I knew it! I knew that stent was still in me. I was shaken and in pain but I cleaned up the bathroom and took my shower in tears. The other end of the stent had the same curly end to it. I showed it to my husband who couldn’t believe his eyes. I placed it in a baggy and put it in my purse. I have not felt myself since then.
I called the Doctor the following day and asked him about it. He fumbled over his words and told me he had removed the stent, then asked me to describe it. I did and I didn’t hear another word from him. Instead, the head of the Urology practice asked me to bring the stent in so they could examine it. I told him no. I went for a couple of follow up visits but never was allowed to see the Doctor who had removed the stent. I finally stopped going to that practice.
My MS kicked into high gear. I think it was all the stress and the continued pain I felt in my vagina.
Note: If there are any young readers in here, you must understand that this blog is about life with MS with all it’s ups and downs. Only truths are written here and sometimes strong and explicit words are used. If this offends you, please do not read this blog.
I complained about a pain in my vagina for months. Finally I went to see my gynecologist. He saw a small lesion or tear in there. He also took a pap test and prescribed a topical ointment because every time I peed it hurt.
I no longer had the pain of the stone but now it was all centered in my vagina. Months went by and I finally went back for a follow up with my gynecologist who demanded to see me. He said I had dysplasia cells (precancerous cells) in my pap smear and noticed that the little lesion had now turned into a sore about the size of a quarter. He decided to do a biopsy right then and there.
The biopsy came back with dysplasia again but he wondered how far down it went and if there wasn’t something else going on because I just wouldn’t heal. It was decided that I should see and oncologist in Philadelphia.
I went and she too did an immediate and more extensive biopsy and also referred me to another doctor in Philly. He took one look at me and sent me back to the oncologist suggesting a wide-excision biopsy to see how far down the dysplasia went.
This was four months ago. I underwent the surgical procedure and the Doctor came in and said that there was no cancer found, but that the biopsy showed Vin I or Vin II dysplasia. That’s just a grading system they use for these things. Because she didn’t seem too concerned over it, I didn’t worry about it and I thought that now everything had been done that could be done, I would begin to feel better. Wrong. I began to feel worse again. Every time I went to the bathroom I nearly cried in pain. I couldn’t sit, stand or walk without feeling pain. I was placed on a strong dose of Percocet, a pain killer. Between all the drugs I was taking for MS and now the Percocet, I was walking around like the living dead.
Once again I am drained of all energy so there will be a part 3.
I need to get off this chair and lay down because I just came home from the emergency room. I made a promise for part 2, and I will make a tentative promise for part 3 tomorrow.
Go and get some rest. I am with you always.
Well hello one and all! I bet you thought I stopped the world and got off of it. Wouldn’t that be nice in a way! No gravity, just floating around without a care in the world. Perhaps catch a dance with the man in the moon?
I wish things would be that easy, although that wouldn’t be easy would it?
It’s been a difficult 3-4 weeks for me. How about you? How do you fare? Better yet, how did you handle it? I would very much love to hear from you. Don’t worry, I won’t use your name. I will call you a color instead, such as Ms. Purple, or Mr. Green.
Where to begin? Hmmm….. We all know what multiple sclerosis is don’t we? There are some similarities between us but there it stops. The rest depends on where the lesions are in our brain. Now I know my MS is acting up because of an MRI I had a while back. There are lesions now in the pons of my brain. It affects the autonomic functions of your body, things you don’t think about like breathing, digesting etc. Strangely enough, I had surgery back there (the pons is at the base of the brain), because I had an Arnold Chiari Malformation. This is where the brain starts slipping down your spinal canal and spinal fluid doesn’t get up to the brain as it should, which causes all sorts of problems. A few months later, I had to have spine surgery because the spinal fluid had built up and formed and arachnoid cyst which wrapped around my thoracic spine and caused yet another whole slew of symptoms. But this was about five years ago.
I’m selling the base of my brain on Ebay! Any takers? I’ll give it to you for free even.
So here I sit undergoing all this stuff over years besides the havoc that MS causes and then about 8 months ago, going on nine I began having a pain in my left side. It turns out I had a stone in my kidney. Would you believe? So off to the urologists I go to have it evaluated and they decided they are going to blast that thing to smithereens so that I can pass it in my urine. Hah!
My body being my body, refused to get blasted. The stone remained and I was still in agonizing pain. It was decided that they had to take it out surgically and meanwhile all this time, I had this catheter in me that was supposed to stop my urine from burning me when I peed; but it still hurt. So they gave me this purple pill which turned my urine a lovely purple, but did nothing else. So then they tried an orange pill. Orange is a color that doesn’t suit me, so my pee turned orange and again it did nothing.
I sat on the toilet every time I had to pee and turned my crotch this way and that way to try and not hurt, but damn it all; it didn’t help. I would sit there holding my breath trying not to scream out loud.
My MS symptoms worsened as my stress level heightened. I literally bounced against walls when I would try and walk. I slurred a lot and my vision became very blurry. Then of course the incontinence worsened but as luck would have it, my body would fight having to pee because this body knew it would hurt alot. For once, I couldn’t wait for surgery.
The day arrived and as I sat in bed waiting for my turn the anesthesiologist came in to check on me. He saw the bed rattling around and me jiggling and ordered Ativan be given to me. I was so frightened of it all. Some dweebs had to take me into a room and put a needle in my back pointing to where the stone was. Well my stone was perfectly comfortable where it was hiding in one of the crevices of my kidney. Well let me tell you something. A blind person could have placed that long needle in better than those guys did. They had to keep sedating me over and over again because each time they tried, they failed. You could probably hear me in China the way I was crying and screaming at those guys. I finally came out of there and they took me right in to surgery.
I am very very tired. I will continue this story tomorrow. But be aware–there is always a silver lining in this room! Forgive the spelling mistakes, I’m on Percocet and I’m too tired to do a spellcheck.
Please go to the above and vote for my newest song? Please?
Tuesday, Junr 6, 2012
Before I start, I really want you to check out this link
The reason why I ask you to check it out. This is a way out! This is a wy you can make money from home.
I’ve been searching for us, and this makes sense. Sure there is an initial investment, but it’s an investment towards your future and perhaps your family’s future. I bought it and I’m waiting for the package to come in. There is a certain amount of risk inovlved, but you know what? That’s a risk I’m willing to take. Money always helps, unfortunate; but true.
Have you ever noticed how stuff for disabled persons seems to costs so much more than for people without disease? Does that make sense? Why? Does anyone know? It makes no sense to me. I was frozen by that fact for awhile. Then I became angry about it. So the search began and I’ve tried numerous things online and 90% of them were scams to take my money, and take they did.
So what this is; is a push for you to either feel willing to take a risk and learn a new trade or not.
Remember how I’m always talking about enabling ourselves? That goes for money as well. Living on Disability is not good enough is it!!!
Well I have become involved with this wonderful man who is going to help me make money and lots of it. I thought that perhaps you would want to get on the band wagon and join me. Come on guys, hurry up before they are all gone! It’s not too late yet!!! I’m really excited and you know that doesn’t happen very often, at least not this way.
Have the funds you need to purchase the equipment you need and do it right now!!!
Here is the link!!!!
May 22, 2012; Tuesday.
Yeah, you guessed right. I haven’t been to Word Press to get my blogs straightened out. There are all out of whack and in the wrong order. I’ll get around to it some time soon, but for now let’s just ignore it.
Remember the umbrella I asked for in my last blog? Did anyone come up with one? It’s still pouring here under my blue skies and my silver lining is just out of reach.
Look, I’ve been doing all the right things. I have been watching my weight, trying to cut back on the smoking, took up classes at Robert Wood Johnson Wellness Center, and am building an addition to my house so that I can get around it easier without the worry of the steps.
I have dropped my Thursday knitting classes though. You want to hear the story of this because it really has me pissed off. Nah….I think I already told it and it is best if I just let it go. However; I can still be pissed off about a group of women who absconded with my girls and moved it without telling me while I was in the hospital.
So face it men and women in here. No matter what your ailment is or your disease, ultimately everyone is out for themselves. You will not be treated any different in the long wrong. You will get a lot of “oh poor you,” and so forth. People may ask a lot of questions at first because they are curious or because and more than likely, they think maybe they too have it.
I’m feeling bitter. Can you tell? A dear sweet friend started this blog for me as a gift because he felt I was a good writer and people needed to hear my take on things. He was so sweet and I loved him very much. But guess what? He too has gone on his merry way either hiding underneath his own covers and won’t have anything to do with the site. But I need his help because I’m just a musician/composer/artist/writer and so forth. I have never claimed to be a computer wizard. He is disabled as well and has another whole set of issues to contend with and somehow I messed up that connection with him. I still love him as my friend and I wish he would come back to me.
But do you see why I feel bitter? In the long run, they all seem to run away. I can count on maybe one hand the people who would stick by my side to the bitter end. However; I can count on an auditorium of people who would come to my wake! Why? Because I have become known around here. I’ve been in the papers several times and I do work for the good of those who have less than me. So I’m well known. So there they would all sit talking about me or something else, but the minute they left the wake, life goes on. I’m just a memory of a good lady who once lived in Princeton. The lady who loved to hug.
Yes, I’m still in the dumps! I have a right to be just like you. But you know what? Right after I get off here I will begin my work with my music and my art. I will finish painting the kitchen and I will keep busy busy busy. It’s the only thing that keeps me going. I don’t need a psychiatist even though I have one. I need the meds he gives me. But I’m the one who could teach him what to say to a person like me who is borderline between climbing the walls and screaming my head off or walking around my garden calmly picking out the weeds with my two little dogs.
I know my own answers, I just choose to ignore them right now as I write to you. I want you to know the whole me, not just the pleasant person.
I’m frightened because I’m having a cancer scare right now. I had three biopsies done and I’m sitting here waiting and in horrendous pain. I had to go to the hospital the other day just to have an afternoon of morphine.
So there you have it! Me! The whole me! The happy, sad, angry, bitter, bubbly and mostly positive thinking me.
I don’t know if you’ve noticed but on top of this blog from now on, I’m going to date it and so when things get messed up again I can fix it myself.
Do something nice for yourself today. I’m going to do something nice for me as well. Perhaps that silver lining will show up again.
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.
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.
This is going to be a tough one for me. The reason why is that I know many of the people who have visited or plan on visiting the site and what’s up for discussion, is embarrassing for me. But I promised myself that I would be brutally honest with this site for everyone’s sake and so I will.
I went to bed, as usual, around 2:00 a.m. Some time around 4:00 a.m. I woke up to find that I had lost control of my bladder. So I jumped out of my nightgown and went into the shower and had my usual crying bout. Rather than going back to bed, I got dressed and went down to my music room to console myself. That’s right, I am a musician/composer and I will talk about this at a later date.
I will tell you another recent incident which was more difficult to deal with because it was out in public. I went to a craft show on my own several weekends ago. I didn’t feel like I needed a restroom until I got of the car in the parking lot. It was a cold and windy day. I stood there with my purse and keys in hand gauging how far I would have to walk to the entrance of the building. It was pretty far. Meanwhile, all these people were parking their cars and happily strolling towards the building. Several people in cars though that I was leaving because I was just standing there and I had to wave them on. There were no disability parking spaces left; otherwise I would have been much closer to the building.
I considered getting back into the car and driving to the nearest fast food restaurant. I would lose the parking space but that is just the way it goes. As I was about to put my key into the door, I felt my bladder let lose. There was simply nothing I could do about it. It ran down onto my shoes and onto the ground around me. I quickly opened the door to my car to shield me from prying eyes, but by the time I did that I had voided all that there was.
I wasn’t sure what to do next. I didn’t want to get back into the car because I didn’t want to mess it up. Luckily I had a long sweater on that went past my knees and that didn’t get wet. It pretty much hid what had happened. I began to tear up because no one was with me so I couldn’t ask someone what they thought I should do. I stood there thinking about it and because I had driven over an hour to get to the show, the wanna-be tears in my eyes hesitated and then receded. Instead I became angry. I was angry because I felt that I had no control over my body.
Okay, so I say I am enabled by my disability, I thought. So do something! Make a decision. I decided that I was going in to the show. This was not going to stop me. Grabbing my walker, I walked around the parking lot to gauge if anyone noticed that I was wet. No one seemed to notice. I continued walking quite slowly from fatigue hoping that the windy cold air would dry me off a little. It did. At that point I headed toward the building and the restroom to try and clean myself up. When I got into the restroom there were too many people there to do anything about it. I did my best, lowered my sweater down and left the room. I proceeded into the show. No one noticed, but my usual chipper self was downtrodden and felt beaten. I looked at items with a half-heart. As the afternoon wore on and I became dry, I avoided getting too close to anyone. This was not easy to do with hundreds of people walking all around me. I did feel good that I had at least not turned around and gone home. I did not feel the need to go again and I avoided getting any beverages while there.
When fatigue overwhelmed me, I decided it was time to go. I had made some purchases including a gift for my husband since it was his birthday. Rearranging my purchases in the walker’s basket, I headed for the exit. Several hours had passed and I should have stopped in the restroom before leaving. I noticed the long line an opted out because I didn’t feel the need to go anyway. Big mistake, or perhaps not.
As I approached my car, once again and completely unexpectedly, my bladder emptied itself. I was near enough to the car that I could get there in a matter of seconds, which I did. This time the tears also emptied themselves from my eyes. A few people noticed but said nothing. I opened the door to the car and just stood there until it was over. At that point I was so tired and disgusted with it all, that I threw the purchases into my car along with the walker and decided to heck with it I’m getting in. It was even colder than when I first arrived.
I sat in my car and just cried my heart out. My cell phone beeped at me telling me that I had an email so I checked it out. It was a message from someone that I normally looked forward to hear from. But when I opened it up and read it, I began to cry all over again. The message has nothing to do with this post so I won’t go into it. After a bit and still sitting in the parking lot, I became angry but not at my embarrassing situation, it was more about the email and the author who was being unreasonably stupid.
I was seeing red and I was exhausted. I drove out of the parking lots with my wheels spinning. I realized that I needed to stop and get control of my emotions and there was only one way I could do that. I decided to stop, park, and make a phone call. I called the author of the email and lit into him with ferocity, unusual for me. He could not get a word in edge wise. The entire time I spoke, I cried. I was completely overwhelmed by my day. After hanging up and waiting for a period, I then drove home with my sopping wet shoes that I threw away when I walked in my house.
I’ve told you of two recent incidents. There are many more. I had problems with urgency, a need to go immediately where my bladder felt ridiculously full but upon voiding there was no reason for it. Along with that urinary hesitancy, where when you feel a need to go but you can’t go at first. These problems occurred earlier in the disease and when evaluated by a Urologist, it was determined that I had a neurogenic bladder.
Perhaps you wonder why I don’t go further into the details of each and every symptom. It is because this blog is NOT about what MS is. It is about the book I searched for when I was first diagnosed with MS. How do I live with it? What happens next? You already know what MS is but what you may want to know is how to live with it.
I did what I set out to do!!! I found a gift for my husband. In my book, considering all that I went through; I am a hero in my own eyes. I went to bed that night feeling proud.
Hugs to all of you.!!! Feel free to comment or tell me about your own story like this and I will post it to the blog.
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!!!!
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.
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.
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…………………………………………..
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.
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.
HAPPY NEW YEAR TO ALL!!!
I noticed you cleaned up our place. Good job! So How has the first three, now four days of 2012 been?
Like I said before, I am now typing in the form of letters instead of Skype style because then I won’t feel like I’m talking to dead air.
My first few days have not been very interesting but they have been filled with yet another strange MS phenomena. Inexplicable and unexpected muscle cramps in every place you can imagine. It happens particularly when I am tired, and yet I’m always tired now because I can’t rest because of these. It’s a conundrum!
I’ve had maybe 6 hours of sleep in 3 days. I’m the walking dead.
[2:34:32 AM] Magdalena Obert: Strangely enough, I’m in pretty good spirits. It’s almost like being drunk. I’m afraid of my bed, so I stay up for as long as I can u till I collapse from the necessity of getting some sleep.
What happens is this, I will be asleep, then suddenly I’m awakened by a charlie horse. When I try to pull out of it, another one starts up. I write in agony. I know that if I can stand up, I could walk it off, but as I edge closer to the edge of the bed, it keeps happening. I cry out in pain, but David doesn’t hear me. He sleeps upstairs while I sleep wherever I drop off to sleep.
[2:38:29 AM] Magdalena Obert: We went out and bought a sleeper sofa in the hopes that I could at least sleep in a bed down here instead of the sofa or in my chair, but I don’t go near the bed because I’m afraid to sleep.
[2:39:14 AM] Magdalena Obert: 000000000000000000000000000000000000000000001
[2:39:34 AM] Magdalena Obert: oops, sorry.
[2:43:06 AM] Magdalena Obert: I tried to call the Doctor today, but they are off. Many places here in the States take the following day off if a holiday falls on a weekday, which New Year’s Day did. Instead I got a hold of his stand in and he told me there is something definitely off because it’s unusual to get one cramp after another. So I need blood work.
[2:44:59 AM] Magdalena Obert: Well all MS people are accustomed to getting spasms or cramps, but this is ridiculous. I tried opening a tube of toothpaste today and my fingers cramped up around the tube. I could not put the tube down. I actually had to hit my hand against the sink to loosen my fngers. That was it for me and when I decided to call my Doctor.
2:49:05 AM] Magdalena Obert: I take tons of muscle relaxants because many of my symptoms are Parkinson-likel but hey don’t seem to help. I’ve also been eating a lot of bananas thinking that I’m low in potassium, but that hasn’t helped either. Did you know that peaches and tomatoes are also riich in potassium? [4:52:03 AM] Magdalena Obert: oh noooo. I fell asleep! It’s been almost two hours. You see ____……you bore me!!!!
[4:55:22 AM] Magdalena Obert: Well so now it’s almost 5:00 a.m. and I started this letter at almost 3:00 a.m. You got me through another night. You have your uses. I may as well stay up now and finish some work. All I need is about 2 hours sleep at a time and I’m ready to go. Hey and no cramps! Aww gee thanks ____.
[5:01:46 AM] Magdalena Obert: I do plan on calling my Doc today and get the blood work done. Today is what? Oh Tuesday, so it’s a workout day with my trainer. I am now walking a 1/2 mile. Too bad it’s not as easy doing it on the ground as it is doing it on a treadmill. I asked my trainer about that and she said that the treadmill is doing a lot of the work for me, but that the results were still beneficial. But you should see them trying to get off the treadmill.
[5:03:47 AM] Magdalena Obert: Those things are high off the ground. So they have to run around looking for a step and then someone gets on either side of me to get off. They are used to it from other MSers in the gym.
[5:04:53 AM] Magdalena Obert: I’ve done very little trading because of the holidays, but the little I’ve done has not been bad. Yesterday was pretty good with NZD.
[5:06:01 AM] Magdalena Obert: I happened on it and it was definitely on an upward trend, so I rode the trend.
[5:10:17 AM] Magdalena Obert: My art work is going off in a different direction. I discovered mixed media! That’s right up my alley. You use whatever your heart desires to make your picture. You can use, oils, acrylics, water color, felt pens, whatever it takes, to make the picture and you can use other items around the house like paper towel or evem pictures! Whatever works and isn’t that what life is all about.
[5:14:09 AM] Magdalena Obert: It’s about constant change and it’s about adaptation to those changes. So when I’m doing artwork, I think about those things. That’s wjy it is important to have those venues in your life; artisitic ones. They make you appreciate all the possibilities in life. I believe in possibilities and I allow whatever happens happen and just work through thenm whatever t takes.
[5:15:18 AM] Magdalena Obert: Well, I should end this letter as my bladder won’t wait much longer. I will talkt to you soon.
[5:16:28 AM] Magdalena Obert: I hope that you are stayiing strong and that you will be back with us soon.
[5:17:07 AM] Magdalena Obert: Love Maggie.
[5:17:53 AM] Magdalena Obert: (F) (F) (F)
My sister-in-law sent me this link. I found it to be interesting enough to want to post it here. Have a read and perhaps something in this article may be of use to you.
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.
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?
The blue is now trying to ovetake the now pink, and the pink is now turning into a mere shadow of what it was.
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.