Hello you lovely people out there! Many of you have asked me about my tree and I have to admit that I did not put one up. Today is Christmas Eve. Who knows, maybe one will be put up today but I doubt it.
Why? It’s a very complicated story too long for this web site. In fact, it would take a book to explain it all. In short, over the years I developed a distaste for the Christmas hoopla. When my children were very little, I did do Christmas for them and I enjoyed it very much. They are grown now and far away. They can’t afford to come to me and I can’t go to them because at the present time, I would not do well traveling. Yet that still doesn’t explain my lack of enthusiasm for this holiday. Grant you, that’s part of it, my children and my MS, but it’s not all of it.
You’ve probably heard some people say that Christmas is all year round? Many of them say that as an excuse to not put up decorations. I say that because I mean it. I honestly believe that Christmas is a season for shoppers and merchants alike. This includes me in part, because I do buy gifts for my children and my husband. It’s a good time for bargains and an opportune time to get my husband to accept the gift of clothing and such, things he otherwise does not allow himself.
Christmas is and should be every day of the year and no, you don’t have to purchase something in order to celebrate it. The gift of giving is not material, but is in the actions we perform each day towards and for each other. Christmas is the gift of love. It is the quality time we set aside for each other to do nothing other than to be with each other.
We all have a gift each and every day of the year. We have the gift of the people in our lives who love us. All of us can provide this same gift back to everyone in our lives. I believe that love is the best gift of all and I’m certain that I’m not alone is this.
There are some who feel as I do, in fact many if not most, but they also believe in Christmas. I don’t know. I guess that I gift the people who are far away and that I can’t do much to show them how much I love them now that they are grown up.
I enjoy the season just like everyone else, but I don’t feel compelled to do as everyone else. Many years I do. I do put up a Christmas tree and all the trimmings but it’s mostly because I think that Christmas trees are so lovely all lit up. It is also a good time to invite people over for dinner and companionship.
This year, I have not put up a tree. It doesn’t mean that I’m not celebrating the season. I am, but in my own way.
I am spending this day, Christmas Eve, completing a song I’ve written for some special people in my life as a thank you Christmas Carol. That is ultimately how I feel about Christmas. I feel grateful for the people in my life. This includes all of you.
So to all, I wish you a Merry Christmas. I thank you from the bottom of my heart for all of your support and love. I give to you the result of all this love, the person you have made me.
Merry Christmas and have a beautiful New Year!
Guess what? I am turning this blog into an E-Book. The cutoff date is December 31, 2012. If you would like to see your comments in a book, please hurry and put them in!!! I can’t promise that all of yours will be in the book, but chances are they will be.
Those of you who have already submitted a comment need to contact me and sign a release. Any new comments must sign a release as well. Please contact me at firstname.lastname@example.org
Once again. Happy Holidays.
I wish you a happy holiday season, but I don’t care for Christmas much. I prefer New Years. I believe that many of us who have been around the block more than several times, probably feel as I do. Christmas is very stressful.
Take the stress of Christmas shopping then add Multiple Sclerosis to it and you are bound to find me in a heap in the corner of my living room. At least long ago you would. Over the years, I’ve learned to protect myself from this stress by removing myself from the “Christmas” crowd and sticking to the home front. Don’t get me wrong. I am not a Mrs. Scrooge, in fact just the opposite. I am a generous gift giver. I just don’t make it so that Christmas is the only time I do it. I give all year round.
Surprisingly, I have found that many people don’t gift give until Christmas. That makes little sense to me. To each their own and I’m not here to criticize. I am just stating that Christmas can be counterproductive to a person with Multiple Sclerosis.
I am urging you to take care, take a lot of breaks and if you feel you need to end your shopping day, do so immediately. If you are feeling this way when you take a rest, it is probably already too late to fend off the fatigue that will set in. Try and sense where your breaking point is, recognize it, and then go home before it completely takes over.
Once again, MERRY CHRISTMAS AND HAPPY NEW YEAR TO EACH AND EVERY ONE OF YOU. I am looking forward to the New Year with you. We will travel a path that is our own and happily do so. We will be here to help each other out when we fall, and to bask in delight when we don’t.
I like to think of us all as a family here.
Merry Merry Christmas wishes I send to you and in the New Year. We will look forward to it knowing that we have each other as a family.
Your Magdalena O.
I went to a party last night with my husband. It was the annual corporate party at his work. It is held each year at different locations that are high end and stuffy. I don’t do stuffy too well. LOL.
Picture a free spirited person (me) with a bunch of quiet and reserved people. Mathematicians. I didn’t feel like going and I almost begged off. I do try and attend at least one event that the corporate bosses throw, and I had not been to one this year. I felt that I should go to the party, so I went.
Here is what’s difficult about events such as this. It happens at night, the absolute worst time of day for a person with Multiple Sclerosis. For me, my day starts to end at about 3-4 pm. I don’t voluntarily go out after this time. There is too much fatigue.
Fatigue? It’s different for each one of us as far as the details of it all. What is common, is that we all feel it to different degrees. The trigger for each one of us may be different as well although what is common is that the onset of it appears to happen later on in the day. When we are having a relapse, it is never ending, at least for me.
So there I am at a party with mathematicians whose tongues have loosened due to cocktail hour and those lovely little appetizers on the trays. People came up to me who apparently knew me. I smiled and pretended that I recognized them. There was something familiar about them but the memory escapes me. For the most part, they are men and not a one of them has movie star looks. Now mind you, I’m not making fun of the way they look. I’m only stating that the group has an industrious and intelligent look about them which borders on being dweebs.
Did I just say that? Well it’s the truth, at least in my opinion. The fun thing about mathematicians is that they know it and they willingly laugh at themselves. These are happy people. They have found a job doing what they do best. They get paid to play with their numbers. Not many of us can feel as they do. I was once told that the definition of happiness is to find work at what you love to do and get paid for it.
I lasted till after dinner. I could not sit still. The conversations around me was very little interest to me but only because I was not feeling well. It was so loud in the room. Why is it that restaurants, even high-end ones are so loud? What happens is that after a short period, I lose my ability to concentrate and it’s as though my brain short circuits from so much input. I can’t separate one conversation from another. It truly is unnerving and aggravating. I literally can’t understand what is being said to me.
This is why I don’t go out socially very much. I have a low tolerance for crowds especially crowds who have been drinking.
I feel good about the whole thing though. I wanted to represent my husband at work. I did. I did myself up with makeup, hair and nails. The day before, I went shopping for something to wear. The event that I dreaded did me some good.
You see, if you do something for someone else that you love, inevitably you are doing something good for yourself. At least try. If you don’t make it to the very end, you still did it.
I gave myself a pat on the back and the smile on my husband’s face made it all worthwhile.
I am going to do something highly unusual for me. I am going to promote a product. It is a product I own and I promise you, you can earn an income with this.
I think that there is only 35 copies left.
Why am I doing this? My primary reason is this. I know that you are living, more than likely, living on Disability. I also know that Disability checks do not provide you with an income that you would like to have? There is a problem though. If you work, then you lose disability payments, or so you think. However, you don’t lose your disability unless you make a certain percentage of what they will allow. What happens is that payment adjustments are made. The more you make, the less you get but ultimately, you still make the same. So you’re not losing Disability, you are deducting what you made from what they will allow. It also depends on whether you pull profits or not. When you pull your profits, then it is income. If you allow it to stay and use it to make more money, well then you haven’t increased your income. You are still using the funds to make more money. Does that make sense?
You are my primary concern and that is why I am doing this. The second reason is that I know Russ Horn from a previous system that I purchased from him. I have been a member of his group for over a year now and I can promise you, that if you follow his system step by step, you WILL make money. Read the review below that I found on the internet. If you like what you see and go to the website, you may balk at the price. I am here to tell you that you MUST spend money to make money. No question about it. Think of yourself opening a store. Well you have to put something in that store. In order to place merchandise in there, you need to purchase it. It is precisely the same here.
You don’t have to have experience in Forex to benefit from it. All you need is Russ Horn’s guidance and he is with you every step of the way. You need to check it out for yourself. If you want to do this before reading the review I’ve posted below, then click here.
Russ Horn’s Rapid Results Method
What Exactly is Rapid Results Method? The Rapid Results Method Members Area – Where You Can Download The Software & Full Course Rapid Results Method is the latest & greatest product by the multi million dollar ‘Russ Horn’ Team of product creators and Forex Traders. The Rapid Results Method product shows you step by step exactly how Russ Horn makes over $100,000 every month using this amazing Forex trading strategy. Forex Trading is a great way to work from home and make huge sums of money online, sometimes only trading a few minutes or hours each day, but there’s just one problem… So many people try and fail, losing their initial investment and often there second and third investments and then giving up. Some actually believing that this Trillion Dollar Market is all some sort of internet scam because they cannot succeed in it! Of course this is ludicrous idea but it is understandable when frustration and financial loss take their toll.. Can Forex Trading Really Be Successful & Does the Rapid Results Method Really Work? I’ve got a confession to make. Even I THOUGHT at one point, that direct Forex Trading was a mug’s game. I mean, I was trading on and off for years and at best broke even period and often took losses.
Quite frankly, Russ has made me and every other wanna-be Forex trader look like a dumbass…. Why? Because Forex Trading is NOT a mug’s game, it is NOT only for the massive financial institutions and it can be profitable, extremely profitable to the wee man wanting to work from home and have a substantial income! This incredibly simple (yet potentially revolutionary) system that is the Rapid Results Method does work – and it does more than just work, it’s amazing. Step by Step – Here’s Exactly What Rapid Results Method Gives You… “Basically, you’re getting a physical product containing – 6 DVDs – A manual – 6 Cheat sheets – The Dynamic Positioning Indicator (DPI) – The Signal Automation Recognition Alert (S.A.R.A) – Private member’s only area – Support with Live Chat, Skype, Email, Telephone. This is a how to, for implementation of a step-by-step winning Forex strategy that consistently allows you to minimize your losses on the few losing trades you may have, which are not many and maximize the profits on your numerous winning trades.” Click Here to Go To The Official Rapid Results Method Website.
Here’s exactly how the system works: First of all, no prior Forex Trading experience is required – at all. I know, I was as shocked as you probably are. But seriously, you set up a trading account and can quickly start trading successfully with what feels like a lifetimes worth of knowledge and experience. The reason I can say this confidently is that after evaluating the product myself, I actually had to through out a lot of what I already thought I knew and replace it with the invaluable information and strategies offered by this program.
Before I was happy to make a few pips and to lose a few pip, believing that as long as I was not taking a loss then somehow I was succeeding. That may sound strange but after years of losing and trying strategy after strategy only to have my balance wiped again and again, I started to believe that now that I am breaking even, then I am on the right track. Of course to an extent I was but the Rapid Result Method has shown me that I would have never really moved beyond this point. My way of trading, the things I was looking for to enter or leave a trade were simply so tight, had to be so exact before I acted, I was losing all my profit potential. The Rapid Results Method expands not only my trade opportunities but also greatly expands my profit potential whilst within a trade! Note: This method does do much more than that but I’m unfortunately not allowed to reveal it, this is for several reasons. Obviously at the time of writing (during Rapid Results Method’s launch period) and secondly the scale of this product is beyond the scope of this review and my trading knowledge. I am not Russ Horn and I cannot even come close to properly explaining the depths and nuances of this method the way he can… … but believe me when I say that after putting into practice Russ Horn’s Rapid Results Method and started thinking the new way he coaches you to think, the results are almost immediate. If it sounds like the simplest thing in the world, well it really is. Think the way you need to think, do what you need to do (as this method shows you) Then you produce it again and again, trade after trade. Rapid Results Method is focused on doing the same simple but advanced strategy over and over. Why? Because it works and it makes money, a lot of money.
The Bad Points
Obviously, Rapid Results Method’s not perfect. Here’s what caught my attention: ?Although no previous Forex Trading Experience is required, there is quite a lot to take in and for those who have absolutely never done any Forex trading at all, some of the terminology may lose them and as such although they will learn the systems and methods, of this I have no doubt at all, it will take them a little longer than people with at least some trading experience. ?You will need money to start. This is not a free system, you will need to spend money to make money so to speak. However, in my tests of the trading method I found that the cost of Rapid Results Method was already covered after just a few winning trades.
The Good Points:
Most importantly: It works and it doesn’t matter what your experience level is, if you implement the system you WILL make money. Maybe not $100,000 per month but a full time income is certainly and easily achievable. ?You don’t need anything else. While I recommend you pick up all the bonus material and packages Russ offers to help your overall understanding of Forex Trading you certainly don’t need to. Everything you need to trade successfully and make money from scratch is included. ?Anyone can use it. It doesn’t matter if you’re completely new to Forex trading or an expert. Obviously the more experience you previously had then the faster you will take in what is being shown but everyone who wants to trade the Forex will succeed following Russ’s Methods. Do what he does everyday as a professional Forex trader himself and replicate the results he gets everyday also. ?A completely different system than anything you’ve ever seen. While this is great for relative newbies, even if you’re an expert it’s worth getting. Rapid Results Method and it’s way of making trading the Forex work is amazing, I personally learned so much and I’ve been at this game for a few years now. If you’re already making money online trading then this can be yet another winning system for you, seriously, I guarantee you won’t have seen anything like this before…
And so we come to the end of my Rapid Results Method by Russ Horn review. Overall, this is one of, if not thee, most impressive and complete Forex trading strategy products I’ve seen in a long time! When you look past the flashy ‘Russ this and Russ that’ sales page, when you click on one of the links provided, what you essentially have is an amazing, unique, simple yet powerfully advanced systems that’s a sure win for any trader to make money online Forex Trading, no matter what you’re experience is. Heck, I’m going use what this method has taught me and get to more trading (successfully) the second I finish this Rapid Results Method review. Stewart,
Click Here Go to The Rapid Results Method Official Website.
Who is Russ Horn,
Russ Horn is recognized in the financial world as one of the leading men within his field, the Forex market! He has been for over 11 years and still is an active Forex trader, has written many books on the Forex market and Forex strategies. Absolutely no-one would argue with the fact that he has proven himself to be a very successful and profitable trader and has an unrivaled history of passing his knowledge to his students.
Every Forex System he has released has been hugely successful, first was the Forex Rebellion, then in 2011 his sold out Forex Master Method, which is the system he was using himself to be a successful Forex trader. Now after 17 months of development he is finally ready to release Russ Horn’s Rapid Results Method. The physical product is already causing a huge amount of interest and is expected to sell out fast.
ClickBank is the retailer of this product. CLICKBANK® is a registered trademark of Click Sales, Inc., a Delaware corporation located at 917 S. Lusk Street, Suite 200, Boise Idaho, 83706, USA and used by permission. ClickBank’s role as retailer does not constitute an endorsement, approval or review of this product or any claim, statement or opinion used in promotion of this product.
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.
Well hello everyone. I know that I’ve not been very good over the past six months about posting in here, but I promise this will change. I think that you all get it. With MS one has to take the time to heal when one is not feeling well. It took ahold of me and tried to squash me into a helpless pulp but I won. I’m here with you and that’s where I want to be.
The last time I posted here was November 13, 2012 and now it’s the 24th. That’s not so bad, but not good enough. Allow me to tell you what has been happening inclusive of November until this past week.
Has anyone here suffered from extremely low red blood cells? I’m talking about anemia? If you have, please let me know in the comments. Does anyone know if this is an MS symptom? I don’t. Why don’t I find out for you. I will post a link here if I find something, Why don’t I check now? Okay, hang in there. I’ll be right back.
tick tock, tick tock, tick tock……………………………………..
Both vitamin B-12 and iron play a role in neurological function and the development of myelin.
Look at the above!!! I honestly didn’t know this. If you go to the link, on the side panel are other links that will lend well to research. I plan on going back there to do some research. Vitamin B12 plays a role in the onset of MS. Would you believe this? It’s no wonder my hematologist has me on B12 shots as well. Oh, I’m getting ahead of myself. But I have to tell you this. I love love love the internet. You can find anything here.
A few years ago, I was extremely short of breath. I craved eating crunchy foods, in particular things like almonds. I was freezing cold even though it wasn’t cold outside or inside. I was even more tired than ever and I just couldn’t catch my breath unless I was sitting perfectly still. I lived with this for about a month or so never realizing that perhaps there was a problem. I thought it was just MS.
I finally mentioned all of this to my family doctor and he decided to do some blood work. It came back with hemoglobin of 5 and the normal for hemoglobin is 12-13 depending on where you have your lab work done. He sent me to an oncologist/hematologist specialist. She was concerned about my levels and started me on a oral medication, of iron ferrous. It took nearly a year to get back to normal and I also had B12 shots at that time as well.
Around August of this year I became increasingly tired. Then as days rolled by, I experienced shortness of breath again. It’s an ugly type of shortness of breath. It’s where you can’t even take a deep breath in what is commonly called a cleansing breath. You want it so badly but you can’t do it. You’re starving for air. You hunger for it. Walking across the kitchen floor or just a few steps was enough to get that sensation. If I sat still and didn’t move, I could breathe, but the minute I swung my legs off the chair or bed it would begin. Sometimes I couldn’t finish a sentence or the sentence would end in a whisper.
Duh……I started to put 2 and 2 together and realized I’m probably severely anemic again. Did I tell my Doctor? No not yet.
I went to the Wellness Center here. I was a member of the club. I signed up with my coach and off I went to have my personal training. I do this twice a week. She was called away and I decided to do the treadmill. There were things I forgot to do or wasn’t instructed on how to do it. I didn’t realize it at the time though. You see, I was hoping that if I worked out, maybe I could have one of those deep breaths. To make a long story short, I fell off the treadmill and injured my back, leg, toes and neck. Ambulance came and hauled me away to the emergency room. While in the ambulance I kept saying I think I have whiplash and sure enough, I had whiplash. I’m still hurting from it.
So as you can see, I have been busy with a return of symptoms of MS unusually severe this time along with other maladies, falls, and ambulance rides each time. It’s not been a lot of fun.
During times like thsese, I have a tendency to hide out. I do very little but mostly lay around and try to recover. I began to realize that I was in a state of depression as well. All the more reason to hide. But you see, hiding; at least for me, is not a good thing. You just wallow in yourself and then you become depressed. The more depressed I became, the more I wallowed in my disease. A pity party began and lasted for quite some time. The very thing that I hate about some not all, blog sites on the internet.
While I’m at this, I should explain my last sentence, the one I said about hating some blog sites. I have visited many sites to see what is going on. For the most part, I would have to say about 90% of the blog sites, are heavily involved with throwing those “pity parties. This is not to my liking. As a member of some of those sites, it is difficult for me to hold my tongue and not start attacking some of the posters not in a mean way but in a kind way. Actually, what I want to do is tell them to stop all this bull s–t and get off their asses and get on with living. But this isn’t fair. They are not me. We are who we are and I just happen to be very strong of mind, not of body.
My defenses were down this time and I too joined the parties for awhile. I must admit that to you. We can’t always be strong. It’s a tough lesson for me to learn. I don’t know why my defenses were down this time, but there you have it. You see, this go-around, my Doctor decided that I needed transfusions in order for her to speed up the replacement of my iron. Every week I went in for a 5-hour ordeal of transfusions in the oncology center. It should have taken only three hours, but I became ill with the transfusions and had to take a bag of Benadryl first before the replacement started.
As time went by, I got bored with the parties and found myself again, but I still wasn’t ready to come out of hiding. Eventually I did and here I am again. A lot of things fell by the wayside during this time including this blog. Then I realized that I shouldn’t beat up on myself for having taken some time off from the real world. That it is okay to lie low and heal. I’m not completely back but I’m working on it.
So the reason for this particular blog today was to make you all aware that you should have your iron and B12 monitored at least every three months if not every month. You all don’t need any more problems than you already have. I’m here for you should you ever need me.
Well hello my dear friends. As you can guess, I am still at war with the hidden part of me. It is pushing and shoving at me. I push right back. I am sharing with you some of my deepest thoughts when I’m up until the wee hours of the morning. I wrote this one of those nights. I don’t feel that way any longer.
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.
The notes just pour out of my heart and into my fingers. My fingers tell me what’s in my heart. For instance, tonight, nothing I played came out happy. Everything came out in minor or dissonant chords that made a lot of sense to me. The longer I played, the harder the velocity until I was beating on the keys so hard that it felt like I was trying to push them out the bottom and into the hole with me. I realized then, it’s time to stop. A catharsis? Perhaps.
I’d forgotten how my fingers would traipse along the ivory keys telling me my own story, oftentimes unaware of the nature of my spirit until my fingers started their dance. There were times when I would sit facing the piano, start playing, and the music was so sad, that I would cry. Not tonight though. Tonight it was more of an extension of frustration. Frustration over the feeling that sometimes I can’t control the sensation of a wasted life.
I had such dreams. I reached for the stars and when I was just almost there, my fingers grazing the tip, my life changed dramatically. I became a mother. Motherhood was an absolute delight since I was but a child myself. So my dreams refocused and I looked at the world through my child’s eyes. He was a happy baby and because he was happy, I was as well. I became the mother my mother was not to me. That’s another story. My dreams were on the back burner along with the stew. In fact, they stewed there so long that they sort of fizzled away into blackened and charred remnants of a life that I gave up.
I am not resentful of my decisions. They were the right ones at the time. The resentment and complete and utter despair came when my children were no longer with me. I stood there with empty arms and no clear path to take. I tried to fill those arms for many years but I was stuck between a rock and a controlling woman, and to this day; I can’t forgive her. I don’t want to. I know who she really is despite the changed persona she puts out there. She slips in and out of people’s lives. She slips in to assert her position and when that’s accomplished and the recipient with blinded eyes acquieses to her manipulations. She slips out again. She is like water in your hands that no matter how you try to keep it from running out, it eventually does and you are left with empty hands and empty promises.
I digress and I will regret this posting tomorrow. Right now at 1:30 a.m., I just don’t care. I’m tired, and I’m sick and tired of being sick and tired. I fluff over how I’m feeling to people around me because I can’t stand listening to others go on and on about their aches and pains. I therefore choose not to divulge the true status of how I’m feeling from day to day. What’s the point? It never changes and that brings me back to my frustration. But it seeps out through my fingers when I sit in front of my therapist, my piano.
I’m vulnerable tonight and my fences are down. All the hurt and pain, past, present and future, psychological and physical looms in front of me and it’s doing it’s best to get in my way. For the next few minutes, I will let it keep me company. I’ll feel better tomorrow. It’s the weekend and I’ll have a real person to talk to instead of my dogs. Perhaps then, for a transitory moment, I won’t feel the frustration of lost dreams, and of the insignificance of my life.
Ugh. I really need to go to bed. I’m just ridiculously morbid tonight. I’m pushing aside these thoughts. Onwards and upwards.
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.
Here is how an average day goes by for me.
I’m usually awake before anyone else is in the house (2 dogs and one husband) primarily because I haven’t been to bed, or because I’ve been there and I’m awake already.
I look for my glasses, usually on my head, and head for coffee after I deal with the bathroom.
While the coffee is brewing, or if it’s being made on the K-cup machine, I let out the dogs and holler up at my spouse that I’ve let the dogs out. I can’t stand dog food, so he feeds them.
My walker and I head into my office along with the coffee, although most mornings, it’s my spouse who makes the coffee because I forget to. He hands me 11 or 12 pills that I take most of which are relaxants for my muscles. Of course then I sit at the desk nodding off after a few minutes and abruptly waking up. Drives me crazy.
You already know what I do next between my little cat naps. I play my games. I do this so that my brain wakes up and it also tells me how I’m doing cognitively, since I’m strongly affected in this way. If I do poorly, I know I need to keep my thinking hat off to the side and just work on light things. For me that is creative things.
My spouse goes off to work and I’m alone with the dogs. If they are inside, I send them back out so that I can have some peace and quiet as I get ready for the day. I don’t think much about anything as I lay in my whirlpool tub. I just have to concentrate on taking things five minutes at a time. If I think further ahead, I get confused.
Getting dressed is always a major hassle. I have to think about what goes on first and so on. I often forget to put on something vital, like my panties or a bra. Trying to lift my leg to get pants on is a trick since I can barely lift my legs. Getting dressed takes a long time.
I let the dogs in and we are all set for the day. I grab another cup of coffee and try not to spill half of it on the floor on the way to my desk. Once there, I check my calendar and see if I need to be anywhere. If I do, I set the alarm clock on my desk. Then I promptly forget about it.
Now decisions must be made. I have stickies all over the place and notes in notebook that I need to read through in order to wrap my mind around what needs doing. I try to get my phone calls done and anything else that is important like arrange for a test or what have you.
It’s very quiet in the house because that’s the only way I can think. The computers go on, I have three of them and so do the keyboards, I have two of those. I then try to figure out what has priority for the day if any. If nothing has a priority then I split my day between everything that I do. What might that be? I day trade, I compose music and have session work, I compose my own music, and now I have a business in the works with the internet so I have to study for my next coaching lesson.
I have not let go of my dreams or my ambition. I want to make lots of money so that I can pursue those dreams. I also do the things I do because I feel it’s important for my self worth. I need to feel like a vital and important person on my little patch of land.
I struggle through my days half asleep because of all the pills I take. The mornings are fairly quiet and the phone seldom rings. The afternoons get pretty busy but I try and curtail all appointments to end before 4:00 p.m. because then the fatigue sets in.
If I decide to work on music then the day and night is lost to it. Nothing else gets done. No food nor anything else. I fade away. So I do try and keep my musical work till late at night when everyone else is asleep.
If I pass something on my way to the bathroom for the 100th time, I try to take care of it.
If I can’t then it has to just sit there till my spouse gets home. My days are plagued by my attempts to get something done only to realize that I can’t do it, BUT I TRY FIRST.
Admittedly my afternoons are a fiasco. It’s as though I can’t make 1 + 1 = 2. My logic defeats me and I start on something, get distracted and start on something else and so on. By the end of the day, there are multiple piles of things I had been working on that are not finished. I take out my pad and make notes for each pile although those notes won’t make sense to me in the morning.
Sometimes my doorbell will ring. I try to get there quickly but people don’t realize that I walk very slow. Most of the time I watch whoever was there walking away. I’m disappointed because I want the company and I’ve not spoken a word all day half the time.
Besides the work where I try to generate an income unsuccessfully, I mostly write or compose, two areas where I’m completely at ease.
I drink a lot during the day but I normally don’t eat because I can’t reach anything. You would think I would be a skinny girl, but I’m not. Too many drugs prevent that and half the time I’m swollen from them.
The highlight of my day is when I have a Doctor appointment. Yipee, I get to go out. I have a car which frightens me. What if I fall asleep? But I like having it there to remind me of freedom, and I do take it out once in a while to run various small errands all within a 5 mile radius.
I am in pain from the minute I wake up to the minute I wake up again. I can’t get away from it and I can’t run away from my body. The pain sometimes paralyzes me into inactivity where all I can do is concentrate on making the pain less painful. I succumb to drugs if I have to.
The day ends with my spouse coming home to a dinner or bringing dinner home. It all depends on how I’m feeling. He turns on the TV and I run away to my office or my bedroom. Sometimes I watch TV, but not for long. I much prefer movies. There are no loud commercials.
I am but a fraction of the person I once was. I wear a mask of smiles and cheerfulness. When in conversation with other people it inevitably turns to their turmoil’s, problems etc… I try to encourage them the best I can. I write this blog for the same reason.
Now here is my point. That fraction of a person that I am, is still a person. She has needs, desires, ambition, sexuality, vanity, and a need to be loved not only through kind acts but through desirous acts. People don’t understand it. They treat us like we are disabled, we are; but we are not. Our bodies have betrayed us. My mind plays hide and seek with me. NOTHING absolutely nothing can be done in the old way. EVERYTHING is a struggle. EMOTIONS are more acute because you see things you didn’t see before. You see who cares and who don’t.
People want you to be a good patient and pat you on the head as they walk by. I’m not a dog although I can be a bitch. They don’t expect you to think or to verbalize what is on your mind. It doesn’t matter to them anymore. They have a mindset of you as a patient and take every thing you say with a grain of salt.
Yes, life is shitty. Yes, life has changed. But now I’m inside out, or outside in. I see the world from a different perspective. I see more than they see. I understand more than they do even if it is a mixed up jumble in my head. I truly understand how they see me and I DON’T LIKE IT ONE BIT.
I have recently dumped a lot of funds into a group of people who may be able to help me get a project off the ground. I believe they will because I believe they believe in me and my dreams. However, they don’t witness being with me, and I sometimes wonder if they would believe in me as they do now if they did. But I brush that aside because to think that would be defeatist and I’m not a defeatist.
I truly believe that you MUST try and do the things you believed in before you became ill. Follow those dreams. Go get it. YOU CAN, but only if you try. Think of “trying” as a muscle that needs to be worked. The more you work on it, the stronger it gets.
Don’t sweat the little things you can’t do nor the big ones. If something doesn’t work for you any more, then leave it right where it is so that you can tell someone to make it work for you. After all, you are alone during the day and you need to be able to do for yourself.
I am a compassionate and loving person. I carry those things with me. I spread them around when I go out. I am well liked and loved by those who know me. They are amazed at what I have managed to do even though my blouse is on inside out. I even surprise myself.
I’m going to say it yet again. YOU ARE ENABLED BY YOUR DISABILITY TO DO THE THINGS YOU DID BEFORE PERHAPS EVEN BETTER.
The only person you hurt when you give in to it is yourself. Sometimes it can’t be helped, I know this first hand.
Do yourselves a favor. Look in the mirror. Study yourself. See the child? See the adult? See the good and the bad? FALL IN LOVE WITH YOU. You are worth it.
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. A word of caution: The topics discussed in this blog are adult topics for the most part. This particular subject is not for young eyes Read the rest of this entry »
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.
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.
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!!!”