I’m sorry. Really, I am. I know it’s been awhile since I’ve hung around in here, but I have been dealing with a whole lot of stuff in the past year, not that it’s been that long since I’ve written. I can only hope that 2015 will be a better year for me and for all of you.
Just to keep you up to date, it’s difficult enough dealing with MS but when you have a multitude of other problems it can be very distracting and you become mired in the dealings of all these problems. This is not an excuse for not having time to write, particularly since I know how cathartic it is for me to do so.
I’ve had 3 surgeries dealing with 9+ hernias. Can you believe that? I have all of these meshes inside of me trying to hold these hernias at bay. My stomach looks like it’s been run over by the tires of a truck multiple times. You know the tire treads? Then there were two bouts of pneumonia. First on one side, and then on both sides of my lungs. Still I sit here and light up another cigarette. How dumb can I be?
Oh and dealing with the Michelin Man of my legs. This pulmonary edema that I’m contending with. Can’t find a pair of shoes that will fit my size 5 feet. I have to go up two sizes to get my feet inside a pair of shoes! Now the latest….my hair and nails have stopped growing. Not only that, my toes are looking like there’s a whitish sort of fungus on them or something. I don’t know. I’ve yet to bring that up to the Doctors. I have looked it up on Google and it does mention that people with autoimmune diseases such as MS can run into this problem. They also mention anemia, which I have along with hypothyroidism.
By now you’re probably wondering “What happened to our Maggie? Who is writing this blog tonight? Maggie doesn’t focus on stuff like this!” Well you’re right. I don’t and I won’t. I do, however; write about the particulars of dealing with MS on a day-to-day basis whether it’s good or bad, and it if is bad, I try to give you a positive spin on it. There are enough other blogs out there that focus on “pity parties” and that’s all well and good, however; this site does not. Still, I have to relate the facts as they are and then tell you how I dealt with it or how I intend to deal with it. So today we are just going to hang out. I mean HANG OUT or should I say hang over? Let me explain.
For the past year or more, I noticed that my right side was getting weaker than my left. When I see my neurologist, my left side is always weaker than my right! Now it is right side weaker. That is a lot considering how weak my left side is.
This weakness has made itself evident, gradually, by the way that I was sitting. I started leaning to the right. I would straighten up and before I knew it, I was leaning to the right again. This went on for months. Now I have to have a pillow on my right side to hold me sort of straight. I still lean into the pillow.
At the same time, I noticed that I kept bumping into things when I was walking around the house. One was very painful as I walked into the end of the wall. I also noticed that when I was driving, the steering wheel appeared to get higher and higher. Once again, I would sit up straighter, but then the steering wheel did the same thing. I realized it was me. In addition, I realized that I was always looking down. I would lift my head up, but then my head would hang down again. It was a struggle to keep myself in balance.
When I walk now, I walk short distances around the house, I walk leaning to the right with my head hanging down and forward. It is totally confusing looking in a mirror and trying to straighten my head. I don’t know which way to tilt my head to make it straight. I try to use my hands, one on my chin and one on the side of my head to straighten it, but then I don’t know which way to push. I’ve tried lifting a shoulder to straighten my appearance, but then I don’t know which shoulder it is. When I finally figure it out momentarily, it slumps back down again. Not only that, it looks completely unnatural.
One more oddity is that now when I drink, I dribble out of the right side of my mouth.
As you can gather by now, this is the issue I’m addressing today.
It is a difficult thing to realize that your appearance has changed so much, as far as stature goes. It is so gradual that you don’t even realize it’s happening until it hits you all at once that things are not as they once were. My sense of center is gone. Even driving, if I drive a mile to the grocery store is extremely dangerous because I need to feel a sense of centering when I’m in a lane.
So your ever positive Maggie is saying to you all, “What the Fuck!?”
To be honest with you, I never thought that my MS would be that kind of MS, where I would look at others and say to myself, “Thank God, I’m not that bad.” I’ve been able to keep a positive light on things as long as things did not get too bad. However, when I started having bladder and bowel incontinence, I had a sense that things were escalating and that I would never be the same.
I am here to make this statement. This disease is devastating not just in the medical terms but in the physical term of it all. The psychological devastating effects it has on a person. It’s no wonder that many of us become shut-ins. I am pretty much that, for the most part. I don’t want people to see me this way.
How about you? Is this vanity? You bet it is! Not only that, to give ourselves a break here. It is uncomfortable and painful. The actual act of trying to keep my head straight or my body straight is actually painful. My body feels less pain slumped.
This is my life now.
My neurologist wants me to have Botox injections in my neck to see if that would help. My thinking is this, can he inject my entire right side as well? What is the point of having a straight neck if my body is still slumped to the right, so that I can see people staring at me instead of me looking at their shoes? I will try it and see what happens.
So what do you and I do about all of this? Stay shut in? Those of us who are still somewhat mobile, are we going to accelerate our (damn I can’t think of the word), our….you know what I’m talking about….? Okay, I can’t think of the word and you’re no help. Let’s rephrase. I’ll probably think of the word by the end of this long blog. Let’s forget the sentence altogether. Solution!
Is there a solution? Of course not! We are stuck with an incurable disease that is physically and psychologically demeaning in many areas. We ostracize ourselves from public because we no longer like our outer appearance.
Whoa! Stop there! What is this nonsense?
I’ll tell you the truth. All that I’ve written above is a stage I went through for about 9 long months, hence the reason I haven’t felt like sitting around trying to blog other’s spirits up. This is not the point of this blog entirely, but it factors in. It was a stage that I had to go through, learn from it, deal with it, and then go do what needs doing. In other words……
I’ll be damned if I sit around here groaning and bemoaning over what was. I did that these months past and I’m tired of it. This in no way is “Enabling” myself, which is part of this blog’s title.
I got tired of it. I’m tired of it all, but what can I do? I was tired of grieving over the death of the person I was. I was tired of my pity party. Like I said in a different blog, “pity parties are no fun because there is no one there to party with you.”
I had to “pull myself up” (pun intended), and figure things out. Well you know what? There is no figuring things out! It is what it is.
Okay, I’m going to be brutally honest and cut myself into tiny little pieces for you to see.
- I pee in public
- I crap in public
- I slump to the right in public
- My head hangs in public
- I jerk in public (myoclonic jerks)
- I scare the public when I suddenly jerk
- I even scare my nurses when I jerk
- I break parts of my body when I jerk (broke my wrist this year too)
- I sleep in public (narcolepsy) wake up, and pick up where I left off as though nothing happened
- I go to the movies to sleep
- I dribble from my mouth in public
- I have to ask for help to get up a curb in public
- I walk like I’m drunk in public
- I hold on to walls in public
- I knock down display racks in public stores
- I sound stupid in public, losing train of thought etc…
- I embarrass myself in public when I can’t remember my best friend’s name let alone anyone else
These are just a few of the things in public, it goes without saying that these things happen in private as well, with the addition that sex has gone the way of everything else. Bye bye. Well not entirely, but that is fuel for another blog.
Look, I wish you could hear me hollering right now or watch me stamping my foot if I could do it and keep my balance.
DON’T YOU DARE SUCCUMB TO WHAT I DID FOR THE LAST 9 MONTHS. DO IT, YES–FOR AWHILE BECAUSE YOU NEED TO COME TO GRIPS WITH IT, BUT THEN TAKE YOUR LIFE BACK!!!! DO YOU HEAR ME???? RECLAIM YOUR LIFE!
Many things change in ALL people’s lives. It starts out good, then it backfires on them. All people are just as susceptible to damaging events in their lives that can mortally affect them. We are no different than the next guy. STOP YELLING AT ME! WE ARE NO DIFFERENT THAN THE NEXT GUY!
It’s all a matter of taking control. Do I want my life to control me? NO! Do I want to take control of my life? YES. So what’s to stop me? NOTHING.
This is going to land up being an entire book if I keep going. Let me try and end this thing.
I’m here “hanging” around (another pun intended), but I intend to keep going and not give a shit about what other’s think. That’s not what my life is about. I still love me a lot. I’m a good person with a big heart and tons of talent. I know how to keep busy and I have learned not to place so much value on things that have very little value in the long scheme of things.
Tons of hugs to all of you!
I want to address Positive Change.
What does this mean to me? Well I write in another blog called Yobsn website,my new social network. In there I wrote about this.
We all go through harrowing times when it seems that nothing we do turns out right. You try and try and life punches you down yet again. You fall down and pick yourself up until one day, you find that you just don’t want to get up anymore. You lay down and fall into depression. I don’t mean lay down in a literal sense, but you just stop trying to reach for the stars anymore. You become accepting of your “supposed” lot in life and you go about your business.
Remember when you were a child? Remember when someone asked you what you wanted to be when you grew up? You would promptly answer, “a fireman, a policeman, the president, a nurse, an actress” etc. You said it with conviction and without doubt that you would be that person when you grew up.
So what happened? As children we received lots of “boo boos”. What did we do? We ran to mom or dad, were consoled, and then they kissed our tears away. We then continued on merry way the future policeman, fireman and so on. The “boo boos” and the tears did not change what we wanted to be. We were still convinced we were going to become what we said we were. We went to the right person for help who gave us encouragement and consolation.
So what happened? You want to succeed right? You want to make a game plan and take the steps it takes to become a person relieved of financial debt right? You fall down perhaps a lot of times like me, right? What should you do?
There is no Mom and Dad in business, is there? You’re wrong.
Whether it is a brick and mortar business or an online business, there is always someone to go to. In Yobsn, it is your mentor. In Yobsn, we are a family. There are people who believe you, the future success story. In Yobsn, you are not alone.
Unlike many other online ventures, Yobsn cultures the idea of family. In Yobsn, it’s okay to fall down. Your family members in here will lay down with you until you’re ready to get up. Then they stand and proffer their hands to give you a lift up. By laying down in the dumps, in here you can admit to having problems. You can admit to struggling or self doubt. It’s all good. Why? Because we are here to lift you up.
So what happened? Tell us about it. Let us mentor you. We are here to guide you and to help you, not judge you. It’s okay…no matter what the problem is, it’s okay. With our help, you will soon be thriving.
Admit you have a problem then make a positive change. You won’t make that change alone. We are good at kissing “boo boos” away!
Want to know more about Yobsn? Go Here.
My big one is losing bladder or bowel control in public, better known as incontinence. I hate to admit it, but this is happening to me more often than not. I am to a point where yes, I am wearing adult diapers. Sheesh, I never thought that I would admit that in a public forum.
The wearing of protection is not my pet peeve. Here is what it is. I don’t where protection 24/7. I usually wear them at night and if I sense I am going to have a bad day, like being on water pills, then I wear them more often during the day.
Here is what gets me. During the times when I don’t wear, them for whatever reason, is when I lose control! Now you tell me what’s going on her
The protection has saved me at night, but during the day when I don’t wear them, it happens. Isn’t that just too strange? So now I wear them more often than not.
Let’s rethink this. It’s a bothersome pet peeve. I don’t understand the accidents I have when I’m not wearing protection, right? This forces me to wear protection for longer periods of time, right?
Ultimately, when thinking about this and although a pain, I’ve saved myself some embarrassing situations by having protection on. This is a good thing. I’m also bringing out a somewhat hidden symptom to the public to show how we deal with it, right? This is a good thing. We also have to realize that this problem does not lie within the confines of MS alone. It also happens to others who are ill and to elderly adults. Right? This gives us an opportunity to educate others on what to do about it, right? All this is a good thing.
Rather than getting “pissed” off about losing control of our functions, we should go ahead and deal with it knowing that it’s not just us. It’s a given that as we age, we also lose control of some of our bodily functions. Unfortunately, for people with MS, this can and does happen sooner.
Hold your heads up high. Don’t get “pissed” off. Just let it all hang out, discuss it, educate others, and know that something that most people don’t talk about needs to be addressed. Once we go public with this, then others won’t have to suffer alone because they are too embarrassed do discuss it.
A funny thing happened to me on the way to purchase a birthday card in the grocery store. My primary Doctor saw that I had fluid build up in my legs and decided to put me on Lasix for awhile. Lasix is a drug that helps you get rid of excess fluid. How does this fluid come out? Well of course, through your urine!
As most of you know, with Multiple Sclerosis, we have a terrible problem with incontinence. The minute we sense that we need to go, we must go or it goes on us. Right?! Now think about it. Add Lasix to it? I was going every other second it seemed. At times, even when I thought I had completely voided, the minute I stood up from the toilet, I felt that pinch again, I had to go; and sure enough, I went even if it was a small dribble.
I hate wearing, for lack of a better word, diapers! I just hate it. I’ve learned that I have to wear one, for the most part, or leave behind a trail of urine for people to remember me by.
I’m not always incontinent. In fact, for the most part, I can make it to the bathroom before I go. At least once or twice a week, I am incontinent, particularly at night. In fact, I’ve developed a phobia about going to bed even though there is a pad on the bed. It’s just that I hate waking up in the middle of the night to find myself laying in urine. It doesn’t stay contained on the pads because I move about during the night. More often then not, it gets on the other bed clothes as well as my nightgown. I have to go through the whole process of stripping the bed and me, throwing the bed clothes in the washer and me in the tub, and when all is done, I am wide awake.
Back to the story about buying a card at the supermarket. I drove there and realized that in changing pads this morning, I had not replaced it with one. I wore a skirt that day and felt pretty safe since I had gone to the bathroom just before leaving home. I went about my business in the store, just getting a couple of things prior to card shopping. While I was looking through the cards, I felt that pang of needing to go. I thought, “Oh, No!”
I tried everything in my power to contain it but it just let go. I hung my head down pretending to read a card in my hand and hoping no one would notice. Who was I kidding? Had someone been there, they would have noticed. Lucky for me, when I looked up, I saw no one in my aisle. I realized that I could just walk away from it and no one would be the wiser. So I did. I walked a bit down the aisle then stopped. I looked back to see how much was on the floor and it was a lot. Too much. I couldn’t leave it there for some unsuspecting person to slip over. I swallowed my pride and walked over to the prescription area and told them what had happened. They were very kind and simply called for customer service.
I felt terrible as I continued through the store to check out. The front of my skirt was wet. I knew that no one else knew what had happened but I felt like there was a neon sign over my head.
OH NO EPISODES!
This is what I call “Oh No Episodes.” There is nothing I could have done about it. My body will do what it will do with my having very little control over it. In the end, I did the right thing. I reported it so that a bad situation did not get worse by having someone slip on it and injuring themselves. I feel that took guts. Nothing wrong in patting myself on the back.
We all have these episodes. On the one hand I was humiliated, but on the other hand, I felt relieved in more ways than one. Of course, my bladder had relieved itself so I felt much better physically, but I was relieved that I didn’t just walk away from this. This turned the whole unfortunate thing into something positive for me. I learned something about myself that day–that I had more strength than I thought to face up to unpleasant things and that I still thought of the impact this might have on others if I just didn’t do anything about it.
So what do you think you would do? Do you have any “Oh No Episodes?”
Let’s get this out of the way. Anyone on Aubagio? I am. It’s a new drug therapy. One of the things you have to watch out for is liver or kidney damage. Well during my hospital stay a couple of weeks ago there was a series of tests they do with lots of blood work. I got a hold of my blood work and it looks like my liver is reacting to Aubagio. So be forewarned. Get your blood work done monthly, as instructed, if you are on Aubagio. Medical
Update: I’m doing fine. I have home Nurses coming twice a week and my lungs are clear. Yipee!!! I have to get an x-ray for my primary Doctor to make sure all the pneumonia is gone and then have a visit with my Pulmonologist. I don’t want to talk medical stuff anymore so I will leave other details behind. This is not that type of blog as you all know.
Okay, so what’s new? It amazes me how the body deteriorates with MS (Multiple Sclerosis). Now you know that I am frank and candid on this blog so I will admit to having to wear diapers now. I have little control over my bladder or bowel these days. The second I feel that I have to go, I have to run. Imagine it. You are talking to someone and then suddenly you get that inkling that you have to go. You pale and then run away from the person you’ve been talking to and you frantically search for a bathroom. If you don’t find it within the next few seconds, you have to let it go. The person you were speaking to is left holding their glass of wine or whatever with a confused look on their face. You return and pick up where you left off as though nothing happened, if they are still there.
What can you do? Do exactly that! Who cares what they think. The point is, is that you came back and you continued as though nothing has happened. We have to do that. In every difficult circumstance, pick up where you left off once you deal with whatever.
I am so very proud of you. Life can seem so debilitating for all of us. I admit to this, particularly in light of some setbacks. However, in spite of dark clouds, there is a puffy white one behind them just waiting to break through and it does, it always does. Just be patient my friends.
For me, my white cloud came in the form of a beautiful petite woman by the name of Emily James. She reached out to help me with a program I’m working called Jeunesse. She is taking me by the hand and showing me, step-by-step, how to grow this system Now how many program mentors online not only tells you this but actually does it. Amazing. I feel so fortunate to be working with her. Thank you Emily!
If you want to know more about this program, here is the link. http://www.onlinewithmaggie.jeunesseglobal.com/ You actually should check it out. We need everything we can to make ourselves feel better about ourselves. I would go into more details here but this not that type of blog either. Just know that this is the solution to many problems that women have, particularly as we age. I have to say that men are getting on the band wagon as well. Trust me, you know I would do you no harm. Feeling good comes from the inside out. And why not? We all deserve to feel good! Enough said. Really, do yourself a favor and check it out.
Until next we meet,
Maggie signing out!
Oy vey! When it decides to rain on my parade, it pours! I last left you with how difficult life can be and issues of trust, right? Well isn’t it interesting all the twists and turns that life gives us to handle whether we like it or not?
Talk about difficult weeks, I guess I should be talking about difficult months.
Now I know that ordinarily I’m up, but I gotta tell you, it’s tiring trying to hold myself afloat these days. Here is what happened.
I have asthma and, of course, you know that I have MS. Oftentimes, towards the fall, it seems that the pollen, molds and spores or whatever is out there, attacks me and I come down with bronchitis or asthma. No big deal right? Except that mine always lands me flat on my back in the hospital. It settles in my lungs and just won’t leave. I’ve had pneumonia from this.
Well guess what? It happened again!
About two weeks ago, I landed up in ICU because I could not breathe. I had pneumonia. After 5 days of ICU and a couple on the step-down unit, I came back home. However, I had placed an ad in the paper for a Garage Sale. I wasn’t about to let that ad go to waste. So just a couple of days out of the hospital, I had my sale.
Both days went well as far as the sale is concerned but in between waiting on people, I decided that the hedges needed some pruning along with a couple of trees.
What was I thinking? Sure throw my head back and wave around the pruner and suck all the stuff in that the pruner cuts, right? Well you guessed it, back into ICU I went with bilateral pneumonia.
What was I thinking? I wasn’t.
It has been an incredibly difficult two weeks! I have been overtaken by an MS exacerbation. This is not a new one, it’s just one that has lasted for several months now. From day to day it ebbs and flows wreaking havoc with me. As you all know, the world does not stop when you’re ill, instead at times, it seems to escalate. However, all you want to do is crawl underneath the bed covers and hide.
In this episode of “Oh No, Not Again!” we find Maggie waking up to tortuous pain behind her eyes three months ago. Oh no! I won’t bother with all the issues that had to be dealt with, the medication changes or not, nor the lengthy list of ailments that you will find on 99% of all other blogs regarding MS. You also should know by now, that I don’t dwell on these things. Instead, I DEAL with them.
But sometimes…….. Yes, I cowered, cried, slept, did not sleep, yelled, cried some more, complained, threw tantrums and on and on. My vulnerabilities were low. NO! Not my medical vulnerabilities but my emotional ones.
I think most of you know that I do online marketing. I have struggled with this for nearly 5 years. I have taken online courses and spoken or chatted to many people. I have tried many different programs and systems out there but there was always something missing. It was like I had a suitcase full of clothes but was color blind, had no sense of taste and a total disregard for the condition of the clothing, not ironed, dirty perhaps?
In this go-around with MS, I just lost it. I felt like everything was not under my control. I can hear you all shrieking right now. Oh no! Not you! Yes me.
A person gets tired, you know? Picture a notebook with tabs. All these tabs have different headings. The headings are all the different facets of your life that you juggle. When I opened up my notebook and looked at all that I had indexed, it overwhelmed me. Why? Because most of it was incomplete. There didn’t seem to be any cohesiveness to it. You read and you think, well I should put this in this other section of the notebook so that I can find it there too as well as here. Or you find that you took someone’s name to call, but no phone number. Worse!!! You took down a number but didn’t right down who it was for. The further I looked into my notebook or looked at my life, the less in control I felt. So what good is a notebook?
My notebook is my life. I’ve been handling it poorly of late. When I’m ill, I don’t have much energy but maybe just enough to crawl into a corner with my blankie and watch everyone go ahead with their lives. I want to be a part of it, sure, but it takes so much effort. And hey–I’m fractionalized. The pages of my life are askew, unbalanced, incomplete.
How does one get this way? Well, illness of course which leads to depression is a huge reason, but we all have our favorite little pills to help us with the depression part and what? Still no get up and go?
I thought and thought about how I was feeling. Why wasn’t I my usual combative self in fighting MS or in finding meaning to my personal and business life. Aha!
TRUST! I had lost faith and trust in myself and in others. I usually keep this blog very specific to MS, however I want to talk about trust in business as well. It’s all life anyways. One correlates to the other.
There is a thing that many if not all of us do or have done in the past. We keep a bit of ourselves for ourselves. This is good. It is healthy. When it becomes bad is when you know you have something that can help someone else, but you hide it. You don’t want to share it and that’s another whole new subject about why we would do that. This is not that kind of blog.
I realized that in my business as in my life, in certain areas, people were not helping at all. In fact, they were making situations more difficult than they should have been. Isn’t it often said that if you don’t know the answer to a question, that you should ask instead of making a mistake? Right? Well, I have been asking for help in many areas of my business from associates or I had to pay to get the help. The strange thing is this. Even when someone is answering your question, oftentimes, they still don’t give you a complete answer. Again, why? FEAR, COMPETITIVENESS, etc… They want to keep the whole bag of candy to themselves. How sad.
I can pride myself in saying that I am quite the opposite. You ask me for a piece of my bag full of candy, I will give you the whole bag. That is my makeup. I realized that I was worn down from trying too hard in too many areas without gaining any foothold in trying to coalesce everything that was splattered all over my world. So when I became ill, I BECAME ILL, in my thoughts and body. One contributes to the other, a symbiotic relationship.
I’ve been in ICU for 5 days last week with pneumonia and my MS. I’m on very high doses of steroids….well you know the dance. So I’m hanging around in my house when I was finally released, and looking over my literal tattered notebook, thinking to myself, “Am I stupid? Everything I need is right here! Why can’t I make this thing gel? I know that I’m cognitively impaired, but come on now. This is ridiculous.”
I met a beautiful woman online and I hope that I am not overstepping her boundaries by naming her. I name her because I am proud and delighted to know her. She is Patricia Selby. She is my mentor in a program that we are working together as business women.
When I first chatted with her in Facebook, she was everything I wanted to be, and once was, as far as insight and acuity. She knew what she wanted, how to get it, and what path to take. For some reason, this Heaven Sent gift to me decided to give me her bag of candies. She actually answered in detail, my questions. She made videos or mp4s to clarify things. In the space of a couple of days, she took a frazzled and bedraggled lady (me), and made me smile despite how sick I felt. Here I was feeling that I could not trust anyone again including myself, then along she comes and straightens me up, dusts me off, and tells me, “Let’s make money together and have fun doing it.”
Pat Selby deserves recognition. I realize that this is a tiny blog, however; even tiny blogs get read.
Hang in there folks and keep in mind. The kindest thing that you can do for yourself, is to give away your bag of candy, you’ll be all the more richer for it.
I’m sitting here with my nose two inches from my huge desktop screen, ( can’t see very well anymore), and wondering, yet again, why I couldn’t sleep. You would think with all the drugs I’m on, which normally makes me sleepy, that I would zonk out. Instead, I fall asleep all day long for a few seconds or a few minutes. Makes life very inconvenient.
For instance, I went out yesterday to see a movie I was looking forward to see. However, because my husband wasn’t with me to keep poking me awake, I bought all kinds of junk to munch on during the movie. Well….that didn’t work too well because I would suddenly wake up to find my food on the floor and all over me. Luckily I didn’t miss out on anything too important………except……the last five minutes. Darn it, wouldn’t you know it? Finally an answer to the story which was about to end. But no….my body decides it had enough of this story and off I went to dreamland. It had to be a good five minutes.
Next time I woke up, people were saying “excuse me,” as they tried crawling over my slumped body half off the seat. Someone even asked me if I was okay! I nodded still very confused as to what had just transpired. After most of the people had left the theater, I realized that I had no idea how the movie ended and I was so frustrated. I slowly made my way out into the muggy heat and sat down at the first bench I found.
While sitting there I looked around at people to see if there was anyone I recognized as being in the same movie theater as me. I finally spotted a group of three people about to walk past me and embarrassingly explained that I had fallen asleep and would they mind telling me how it ended. All three started to talk at once and wouldn’t you know it, it had one of those ambiguous endings where everyone thought it meant something different to them. So I received three different interpretations as to the meaning of the movie. I thanked them, but as they walked away, I could still hear them arguing, among each other, as to what the story meant at the end.
So you see? It’s always better to ask for help no matter what the problem is. Yes, I received three different interpretations but at least it was food for thought. I’m sure if I had seen the ending, it would have meant something else to me.
Back to my sleepless nights. So now if I were to ask my Doctor, yet again, why am I not sleeping very well, if at all at night, his pat answer might be, as it was before, “Oh that’s common with MS.” Not the answer I’m looking for because I really want to know, specifically, why I don’t sleep. I guess there is no real answer and thank you very much, but I don’t want yet another pill to help me to sleep.
Tying this up with the movie problem above, yes it’s better to ask for help or at least for an answer to a problem you have. You don’t always get the answer you’re looking for but at least you received an answer. Does this solve the problem? Quite often not. Yet again, it does in it’s own way. You now have food for thought OR you can continue to seek an answer. In either case the question left me with questions, but that’s okay.
Do you sleep at night? Do you know why you don’t? Hugs, Magdalena
I am so tired today that I can barely keep my eyes open. It’s all these darn drugs I’m on. I’m now a narcoleptic because of them.
This morning, I was working on my computer and the next thing I new is that my coffee cup went flying off my desk, shattering on the floor into tiny pieces. Coffee was everywhere including my mouse and keyboard. Apparently, as so often happens, I had fallen asleep at my desk and woke up with a start. I knocked over my cup. It was a good thing that my kine and understanding husband was home. He came running with paper towels and helped me clean this mess up.
He keeps me smiling.
Yesterday, another MS friend of mine who hasn’t gone out in ages, was finally convince to come over to my house. Normally, it is me who goes over to her house and takes care of her. She is severely depressed and won’t seek help. I finally convinced her to come over by telling her that she could stay in her nightgown, which she does all day anyway, and told her I would drive over. All she had to do was walk out her front door into my car and no one would be the wiser that she was out in her nightgown. I was so proud of her when she walked out her front door. I half expected her to not comply with what I wanted her to do. She did not dissapoint me.
She keeps me smiling.
I’m so happy that despite the fact that I’m half blind, (I’m sitting here with my nose on the computer screen in order to type to you.), that I can still compose music. The cognitive areas of my brain that are leaving little black holes in my brain, have left this area of artistic endeavor alone.
This makes me smile.
So now you tell me. What keeps you smiling?
Hello sweet friends! I’ve had an interesting month! How about you? I am trying very hard to get back here as often as I once did, but life gets in the way sometimes and you have to prioritize events, tick them off your list as you reconcile them, and somehow my blog gets pushed to the bottom of the list.
My myoclonic jerks were so severe that one night it tossed me out of bed. I woke while on the way down, put my arms out to stop my fall, and proceeded to break my left wrist. Ouch! So there I went to another specialist who promptly put me into a cast telling me that I could not get out of a cast for 8 weeks.
What actually happened is that the cast was removed after four weeks but I had to wear a brace at all times for another four weeks. It was time to deal with, once and for all, my restless syndrome and my myoclonic jerks. It was also time to change neurologist.
When a Doctor and a patient wed, so to speak, you expect your Doctor to continue to show the same interest in you over the years as you do them. Right?! Okay, one has to take into consideration that you don’t see one another for months at a time, but heck; if I didn’t see my wedded husband for months at a time, I would expect him to pick up where we left off. If he didn’t and I didn’t, well then perhaps it would be time for a change as well, in that scenario.
I was feeling like I had to re-introduce myself each time I met with my neurologist. I had to clue him in on what our last conversation was about, my medications etc… Now get this! He is the head of one of the MS Clinics here in this state! I finally figured out what was up with him.
He heads several of the studies with the drug therapies offered to us. I had decided, during the last year, that I would not take any more of these drugs to see if I felt better on them or off of them. He did not like that and strongly suggested that I stay on the therapy. I stuck to my ground. Since then, it’s as though he is dealing with me because I am his patient, but I’m not a person of interest anymore. It was definitely time to move on.
I love my new neurologist. I think if I walked in disguised as Graucho Marx, he would still know that it was me. He too is the head of a well known Society for MS. I am not mentioning his name here because I always check with the person I write about, if it’s okay to write about them. I haven’t done so with him. He has tweaked and tweaked my medications to a point where my MS symptoms that were visually startling to a lot of people, has calmed down. I am no longer afraid to be seen in public. I’m not frightening people with a sudden jerky movement of my arms or torso, or twitching uncontrollably because my legs are crawling with ants. So it’s a change of seasons in many ways. I’m sure that some of you are going through your changes as well. Feel free to let me know and to share with others. Your comments are welcomed. You will notice that I’m not on as frequently as normal, but I’m also thinking about changing up the style and theme of this website. Continue to hang in there as we all progress, step by step into whatever the future holds for us. At least none of us are alone. We have each other.
I am sitting here listening to Norah Jones and thinking about you. I’m wondering how you are and if you are as tired as I am waiting for consistent warm weather–then again, dreading it and you all know why.
Heat! What to do about the hot days in front of us where we turn into wet noodles without a trace of musculature or spine. We succumb to heat and turn into people scratching at their bodies from pin pricks of fire tracing their way up and down our legs and arms as if it is rush hour in New York City. Our legs no longer hold us up and our heads become too heavy for the thousands of bones in our body structured to hold them up.
The inability to think straight nor caring if we do or not is another perplexity. The inexorably and inexplicable drainage of strength and motor skills hits many of us as well as a myriad of other heat-related symptoms, too numerous to mention in this short blog.
This blog does not sound like me at all, does it. IT’S NEGATIVE?!!! Not really. I am just preparing myself for what lies ahead, as we all should. Prepare for what lies ahead. This could be an event you are looking forward to or something you know that is going to be difficult. Right? Don’t we do so much better if we are prepared?
I’m just telling myself to shut up with the litany of where is spring or summer knowing full well that when it arrives, I hide like a mole in the middle of dead winter in my air-conditioned home.
I don’t know about you all or where you live, but here–the reluctance of a full-blown spring followed by summer is something I should be grateful for. Let’s enjoy this weather while we still can.
I went in to see my hematologist on Thursday. They do a quick blood test, in-house, to tell you what you’re hemoglobin is. Mine was fine on Friday. However, they do send the blood work out to get a complete CBC, and this morning I received a call that my Ferritin level was low again.
Now I’ve been fighting this anemia thing for about two years now, but I can always tell when it is starting to drop. I begin to crave nuts. Isn’t that strange? I think there is a reason for this that I’ve seen somewhere, but I don’t have the time to research it again right now.
I have to admit that, this usually happy-go-lucky person has been plagued these past years with numerous problems, let alone the myriad of symptoms with Multiple Sclerosis. I feel like the only thing I do when I go out, is to run to or from a Doctor’s office. That’s pretty sad if that is the highlight of each week.
On Friday, however; I was visited by a friend of mine who I met through a group online called Meetup! I started the group called “Flight or Fight” for MSers. We are a tiny group where the focus is on enabling ourselves and not focusing on all the negatives. You can find out more about Meetup here. It’s an interesting site where you can join an established local group or you can start your own. I have never been a follower, so I started my own.
Linda came over and she wasn’t feeling well. The fact is, despite not feeling well, she placed one foot in front of the other and came out anyway. She not only has MS but she has fibromyalgia as well. I was so proud of her and her accomplishment of getting out, that I took her to see another MS friend who has capitulated and become captive of MS. She lives in the dark and seldom goes out.
This lady is more than capable of getting out just like Linda and I do, but she doesn’t believe that she can, therefore she can’t.
So be careful, my friends, on how you think during the course of each and every day. Your thoughts can and will control how you lead those 24 hours. I refuse to sink down my rabbit hole. I, instead, stand outside of it and point people away from it so they don’t get swallowed up in it.
Trying is the right thing to do. You have to try. If you fail and don’t get out, you haven’t really failed. Each time you try, you get one step closer to accomplishing your goal. It’s in the trying, that strengthens you.
Until next we meet.
It’s around 6:26 a.m. here and I hear the early morning birds chirping outside my window trying to wake people up. I’ve been up most of the night, as usual, and maybe I should have started chirping myself way before them. Can you imagine? They would surely lock me up for good!
Kidding aside, I have so much trouble sleeping these days. It’s gotten so that I just stay up as long as I can because I know when I try to sleep, in a few minutes to half-an-hour, I will be back up pacing the floors or back at my computer. Then the attempt will be made to go to bed again, and rinse and repeat.
I have learned a lot about Restless Legs, Movement Disorders, etc… The reason why I include the general term of Movement disorders is because along with the restless legs, I get myoclonic jerks. They are also called or compared to sleep starts. You know? The feeling one gets just before falling asleep where suddenly, out of the clear blue, your body jerks? That’s what I get on and off all day long. Mine can be so hard, the jerks that is, that I literally almost feel like I’m giving myself a whiplash. On bad days, I sometimes wear a neck collar. I don’t go out on those days because I can frighten people. Imagine it. You are sitting next to this lady and all of a sudden, she grunts very loud and jerks through her torso and then she sits quietly again.
Here is a paragraph from “The Neurocritic” that explains restless legs quite well.
Restless legs syndrome (RLS) is a neurological disorder characterized by throbbing, pulling, creeping, or other unpleasant sensations in the legs and an uncontrollable, and sometimes overwhelming, urge to move them. Symptoms occur primarily at night when a person is relaxing or at rest and can increase in severity during the night. Moving the legs relieves the discomfort. Often called paresthesias (abnormal sensations) or dysesthesias (unpleasant abnormal sensations), the sensations range in severity from uncomfortable to irritating to painful.
I am taking several different medications for this but I seem to gain an insensitivity to these drugs as times pass by. This leads me to searching online for other possible methods of relieving these symptoms. They are quite horrible and leave you feeling utterly helpless.
Let me tell you about the most interesting one I’ve found that left me giggling. Again it was from the “The Neurocritic.”
The patient reported that he would get complete relief from RLS symptoms, granting him a normal sleep following sexual intercourse or masturbation. Pramipexole was introduced 2 h before bedtime with significant improvement of RLS symptoms, but whenever he was without medication, he returned to sexual behavior to get relief from RLS symptoms.
Now imagine this? All of us men and women going down to our local “adult toy store”, and buying the latest and greatest! We could then justifiably lay claim that it is for medical reasons as well! The online stores and the brick and mortar stores would see an increase in overall sales!!! Hmmm, I’m wondering if there is a potential business to be made from this?
Till me meet next. Hugs.
When you learn Internet Marketing, one of the things that are taught to you is “value”. You learn about value in a different context in a way. Usually, in this type of forum, it means of gift that one might find valuable. It could be valuable as far as a technique in Internet Marketing or it could be a method of self help, yet another way it might be considered is as an out-and-out gift!
Sure, it’s important to have context that creates a sense of “value” when you’re trying to make money online with an internet business. You want to attract people to you and one of the best ways to do it is to make them want you. Right? However, I want to talk about value in a different sense, the old-fashion sense.
When you’re talking about value in Attraction Marketing, it means one thing; to bring people into your website to have a look around. When you talk about value as far as people are concerned in the general public, I akin it to self worth. It is one way of looking at it. This is my topic.
The reason I went on about value in Internet Marketing where you can make money on line, is because that is what I do to generate a lucrative income. However, when I speak to you, particularly those with Multiple Sclerosis and other debilitating diseases, I speak to how you feel about yourself and how others feel about you.
Let me correct that last sentence. In business, how people look upon you is important; however, in my conversation with you it’s not. Only you need to care about how you feel about yourself today. Don’t give anything else a second thought.
Many of us who are ill, slide down, inch-by-inch and without fail in our opinion of ourselves. This has devastating consequences if not halted. If you think less of yourself, you will behave as less than yourself. If you behave less than yourself, you will think less of yourself. Get it? It’s a merry-go-round of self-deprecating insult to your soul. Not only that, as you go round and round, every time you get to the beginning to go around again, the level that you start at inches lower and lower. You still go round and round but now you’ve sunk down.
Get off the merry-go-round now!!!
If you stay on it, you will begin to enjoy it. It’s human nature. It becomes second nature until you don’t know of any other way to get through a day. I know this for a fact because I have a friend with MS who is going through this right now. However, she is refusing to get off the ride that is sinking her lower and lower. She doesn’t see it, and she doesn’t feel a need to get off of it, because she has become accustomed to it and doesn’t feel a need to change. She has no responsibilities to other people as her children are grown and so does not see how this might affect other people.
I am one of the other people in her life. Although I’ve tried and tried to tell her how I feel about the ride that she is on, because I am just a “friend”, her choice is to ignore it although her intelligence admits to me that I am right.
I want you to take a look in the mirror and see reflecting back at you a person of value. We are dizzy enough without getting on a merry-go-round. Stay off of it. The only person that matters, is you. The most important person in your life is you.
If you take care of you, then you take care of others in your life! It just happens that way.
It’s okay to feel down, but get “up” as soon as you can. Believe in you and the magic that you are to other people and to yourself. Take a hold of your life and start making positive decisions that has positive outcomes for you and others as a direct consequence of these decisions.
If you want to know more about me, please go to this link where we can meet. Here is additional information on me.
Hello everyone! I’m still here. I have so much to tell you and I’m sure you do as well.
It’s been a very difficult year but that’s not what this post is about. I wanted to let you know that in the next few months, you will see some changes on this site. I’m going to revamp it. It needs a change. You may see some ads here as well. Everything costs money either in time or hard cash. I want this site to support itself and this will help. Not to worry though. It may look a bit different but the feel and content and it’s philosophy will remain the same.
I’ve truly missed you and I will get to posting regularly in due course.
I have not abandoned you. I will explain in future posts what has held me up in postings.
I have missed you.
For the past 3 years, I have been searching for a way to make money in the comfort of my home not just for me, but for you too! You see, in a couple of previous blogs I made mention of SSDI (Social Security Disability Income).
Most of us are on it or trying to get on it. Yet whether you get help from Social Security or not, you are still receiving poverty level help. True, some help is better than no help, but there are some of us out there who heavily rely on this source as a primary source of income. That is just terrible! There are some of us who are not married and don’t enjoy a second income so they solely rely on SSDI. This forces them to live at home with a relative or live in some other circumstance that is not there preference. Add this to the myriad of disabling symptoms, one of them being depression, you get someone who is locked into a life of not many choices.
SSDI offers a work incentive. They allow you to work before taking away SSDI. You can work up to a certain monetary compensation before you are penalized with changes in your income from SSDI. I guess SSDI feels that if you make one dollar over their supplemental help, you are well on your way to having a normal monetary life. Not so! This places us in a position of fear. The fear is that if you work, you lose. It is illegal not to report your income. This bothered me so much that I went on a hunt
You see a lot of ads that say “Fire Your Boss!” Well I would like to be able to tell you to Fire Your SSDI. What!? Yes! Why not try and make an income from home where your disability is of no importance, and get off of SSDI to live a better financial life? Why not?
I spent a ton of money doing this. How? Well you see, I was gullible, innocent to the ways of the scammers out there, naïve, and uneducated with Internet Marketing. This is the source of where you COULD find the means to get work, Internet Marketing. As a result of being taken over and over again, I did manage to learn quite a bit about the workings of the Internet. Unfortunately, it came at a great price to my credit card finances, my personal finances, my family’s finances, and to my peaceful existence with said family, as well as my health.
I grow tired now because I’m not feeling well. I will continue this on the next blog. Stay tuned.
Please forgive me. It’s been awhile since I’ve blogged in MS Life and there is no good enough excuse for this, so I won’t question your intelligence by providing you with any. I have lost my focus, but I’m back.
Where to begin? Hmmm.
I will update you on my health situation. My MS has been surprisingly cooperative these last few months. It’s a matter of chemical control for me. Seriously! If I did not take the drugs I do, I would be a mess. No! It’s not any of the therapies because I have been there and done that. However, I do take many medications that control all my various ailments. Anyone who tries to take those drugs away from me, I will hunt you down to the ends of the earth!!! LOL
What is of particular annoyance to me is that I have a movement disorder. They call it Myoclonic Movement Disorder. Part of this Movement Disorder is that I have a Startle Response to everyday things. For me it’s auditory, although there are other forms of it. If I am startled, I react unreasonably startled and oftentimes it will set off a series of jerks that involves my trunk, head and neck. It is ridiculous at best. The other part of it is the constant jerking that I have during the day. Because I’m on a lot of sedative medication, I am in a state of relaxation that triggers the myoclonic jerks, once again, where I experience a series of the described jerks above. My head jerks to the right lightning fast and it is painful. This goes on all day on and off and gets worse if I’m sleepy or relaxed.
Top all of these movement disorders with one more called Restless Leg Syndrome and you will know why my medications are my best friend.
So far this summer, it has not been a bad year regarding the MS and I feel blessed. I have several other problems that I’ve been dealing with that indirectly are caused, in part, by MS. I deal with those things as they come up.
Strangely, even though my MS is doing okay, not rearing its ugly head, I have spent a lot of time both in New Jersey and PA seeing doctors. Such is the life of an MSer.
This is how I’m feeling these days. No matter what age you are, or what problems besiege you, or if you are feeling hopeless and helpless, follow my philosophy, and hang on for the ride of your life. Believe in you as I do. If you want to know more about my business click on this link Neucopia
This is my Multiple Sclerosis blog which has lived with me for 3 years now. I love writing in here about my disabilities or about “woe is me”. What I do emphasize as noted by my subtitle, is how I am enabled by my disabilities to lead my life the same as the next person, perhaps even better, because I view the world now from a different angle.
On other pages I spread my wings a bit further because I am not about M.S. It does not define who I am. I am also a musician/composer and an online entrepreneur. One site is http://www.trendyhandbags.net/
Another site is http://maggiesreviews.com/ where I either interview a band or write a review on a band that is either current or from the past.
There is also http://maggiesgreenworld.com/ which is not fully developed and several others.
My newest and most loved business is #Neucopia. If you have not heard of it yet, you will. It is spreading like wildfire all over the internet and yes, you will hear more about it from me as well.
My focus is on people who are living on SSDI and others who are struggling with their life. I truly want to introduce them to an online marketing solution that yes, even though you have probably heard it a million times before, IT WILL CHANGE THEIR LIVES.
Onwards and upwards is what I say. I’m a fighter only because my life has made me one. I’m strong even though I have felt powerless at times. I control my life and I am teaching others by example, how to change theirs as well.
It’s been an interesting few days and I have been gallivanting all around the Internet. I have been busy networking with other marketers who are in various programs of their own. I figure if they are out there searching for programs why not introduce them to mine? It’s a funny thing though. Most people react with suspicion because they have been taken, as I have, so often by systems that take you nowhere. They make it sound so promising in their initial capture of your attention, but after awhile, don’t they realize that we all become seasoned veterans?
Unfortunately, I am slowly coming to the realization that the later a person enters into a system such as Empower Network, the more saturated the Internet is with news of such an enterprising program. You then start confronting more and more people who are hesitant about joining up with the program. Isn’t that sad?
Here we have a program run by two enterprising men who have come from a long way off in life, literally changing their lives; who then turn around and want to help others change their lives as well with an innovative and unheard of compensation plan. It’s such a drag really. How does one change someone’s mindset who have been hurt once too often? I know because I have been there myself. Yet for some reason when I came across Empower Network for the third or fourth time, I decided to take a leap of faith. Why you ask? Because this time I took the time to listen to the entire audio instead of listening to it with a closed mind and heart.
Why did I listen this way at this time? I’m not sure. I don’t know how to explain it. Maybe I was feeling vulnerable that day. Maybe I was too tired to turn away from the audio. Maybe I was feeling kind regardless of past ventures. It’s a difficult question to answer.
I do know this. When I listened to both Daves individually and heard their stories separate from each other, I realized the depth of hurt these two guys had been through. You don’t experience life like this and not come out of it a changed person. It happened to me as well.
A person needs to be diligent when faced with an opportunity. You have to be able to recognize it when it comes along. If a person is completely turned off to the whole idea, then I wouldn’t even approach them. But if someone comes across my desk as actively seeking an opportunity, then I do approach them. They are still looking, like I was, despite the preponderance of bad experiences out in the Internet world. You have to be listening with your heart and not with your money.
Are you still with me? Good. I know you’ve been hurt. I know that you are tired and wary. I am too. Don’t lose your heart in all this. Keep it intact and safe so that when something like this comes across your path, you will be able to tell the difference between someone who is out to scam you and someone who truly cares about you.
That’s what you will find here at Empower Network. Lots of love, lots of effort to help you, lots of product to educate you not only in Empower but for any other venture you might have.
Take a deep breath and take a look see. Fill out the form on the right.