You are a man/woman first. Right? You happen to have MS. You are not MS first and then a person. MS does not define me. I am a woman who happens to have MS, just like a woman who happens to be pregnant, or maybe a woman who happens to have depression–maybe a woman who happens to have debilitating migraines.
I doubt any of these people disclose these things. They are looking for work, so why disclose it? That’s what sick pay is for. Everyone gets the flu now and then. Or everyone gets a cold now and then. They don’t put that on their resume….Oh and I happen to get migraines sometimes. No. They don’t do that, so why should we?
You are a person first. You are not disabled. You ARE able to get the job done most of the time. These people who have MS and are able to work are very fortunate. I can’t work outside the home, but I’m still not disabled. I am a woman who can’t work outside my home, but I work. I still clean my house, do the dishes and laundry etc. That’s on good days. On bad days, it just doesn’t get done until a good day rolls around again. So what!
A person who defines themselves as disabled is a person who is using the “Self Fulfilling Prophecy”. If you think of yourself as disabled, you will be. It’s as simple as that.
I am an ill person, but I don’t define myself as that. I am a person who is ill.
So get on with getting on. Go get the job you deserve or need. Do the best you can just like everyone else in the world. If you can’t hack it, find a different job you can do. The point is, don’t stop trying. If you stop, nothing happens. Right?
So come on guys and gals who are still able to get out there and fight the cause. Yes indeed, working and spreading the word is fighting the cause. You can and should get a job, and then go out and find places that are not amenable to people with disabilities! You can tell the owner of the place you’re eating at or wherever else you happen to go. That’s a good fight. That’s what I do when I’m taken out. I’ve actually done that several times, particularly about bathrooms in small restaurants. I’ve told owners, “Now how do expect me to use your bathroom when I’m not able to get in there with my wheelchair?” That owner, when I went back months later, had changed their bathroom a bit. I at least could get in there with my wheelchair. It needed more work done, but I appreciated the change. I told the owner thank you.
Come on guys, fight for yourselves and the right to work and fight for the cause at the same time. Be our voice!
Will you be my Valentine? Honest! Will you be my Valentine?
Valentine’s Day is an occasion for people to express love to one another.
I remember, as a child growing up in an orphanage, that boys would leave secret cards on my desk. I was a cutie back then.
I was angered by their attention. I had no interest in boys, at that time. I was very focused on becoming something more than I was. I wanted to be a ballerina. Can you imagine? There I was in an orphanage but I wasn’t an orphan. I had two parents who separated and went off to have children on their own. For some reason, my sisters and I were, for the most part, ignored and left to grown up without love.
Why am I asking you to be my Valentine? Because I love you, of course! I sit here time after time typing to you and telling you my intimate secrets. I share with you my deepest thoughts. I feel at peace with you. You don’t judge me and many of you have supported my website. I write with love in my heart because I know you. I know you because I know me. We share the same body and frailties, but there is more to us that connects us other than being disabled, right? We try to make the most of our lives as well.
We are people who struggle each and every day. Getting up from a chair and taking that first step is often daunting. Sometimes the pain is so horrible, we just sit back down. Someone walks by and asks us if we’re okay. We smile pleasantly at them and say, “Sure”. But everything is not okay. We put up a good front.
So when I sit here typing at my computer imagining the look of you, I feel my love pouring out of my fingers onto the screen that stands between you and I. I don’t know you, but I know you. All i have to do is stand in front of a mirror and see you there. You are knocking at the pane that stands between us. I sit here knocking at the computer screen that stands between us.
Sometimes I cry and sometimes I laugh as I type. You save me each and every day when I feel depressed. You keep me from self loathing. You make me shake with laughter when I turn a negative into a positive. You keep me busy and when I’m so bored that I could literally scream and never stop, I see you there in my computer screen, beckoning me to write for you.
You have done so much for me. I sincerely hope that I have done the same for you.
So I ask you again, will you be my Valentine?
Disclaimer: Here is additional reading material for you. I do not in any way claim that any of these methods work. I found them of interest and I am sharing them with you.
I hope you are doing well. What if you’re not? What happened? How did you deal with it? Are you okay?
These are words I seldom hear, and right now, I wish I heard them.
I have had a difficult morning.
I hope you all understand that I blog about my life for you. I hope you understand that it is difficult to chronicle the things that happen in my life because as you all know, some things are very personal.
I give you my life in detail in order to help you and by doing so, it helps me.
This morning, I was working at my computer when I felt the urge to use the bathroom. Being alone, I allowed myself to pass some gas, only it wasn’t gas. I said to myself, “WTF”.
I stood up and the minute I did, I lost control of my bowel. I had no protection because I normally only wear protection at night or if I’m going out. Not for bowel problems but for bladder, in case there isn’t one around.
I tried to get to the bathroom and tried to control the loss of my bowel. I did not succeed. Instead, it came pouring out of me as I tried to walk faster. You know how that is. You can’t walk faster. You can only walk as fast as your body allows you to.
The path to my bathroom is through the kitchen. I left a trail of feces behind me on the kitchen floor. I was still letting go of my bowel when I stopped at the doorway of my kitchen. I did not want to go any further because there is an area rug in the family room. I did not want to ruin it.
I began to cry as I felt the remaining remnants of my bowel empty out running down my legs and onto the floor.
I turned around and looked at the mess I had created. I took off my nightgown, trying not to allow it to get on my face or hair. I managed to do this. I tried to use my nightgown to wipe things up but my nightgown was saturated. I grabbed for the paper towels and left a mountain of papers in the kitchen.
It still wasn’t completely clean but I just had to take a shower first.
My tears came flooding out of me as the water merged with them to create a river of sadness. I could not believe what just happened. It came out of nowhere and I had never experienced this emptying of my body.
I stood in the shower desolate and alone. There was no one to talk to. Then I remembered you and my promise four years ago, to document my life as a person with MS.
As I left the shower, I still could not stem the flow of my tears. What happened and why? The answer to that is no one really know, right? It is just part of our disease.
How am I dealing with it? I am crying as I sit here at my computer admitting to such a personal event in my life. It’s the hardest thing to do, but I do it because of my love for you and my promise to you.
It’s time to stop crying.
Shit happens! Right? For us, it is literal.
What to do? Clean it up!!! That’s what you do when shit happens, no matter what the situation. I’m not talking literal anymore. Bad things happen all the time. I can see you nodding your heads. You can walk away from the problem or you can deal with it, throw it in the garbage and consider the problem resolved right?
What’s the point in crying? Yes do cry because it t washes out the fear, and the tension, but stop crying and deal with it.
Like I said before, shit happens.
I have a few words to say on this topic because, right, I’ve been having falls. It doesn’t help that I have myoclonic jerks which can sometimes jerk me out of a chair or even out of a bed.
This happened to me about 6 months ago, where I jerked so hard that I was knocked out of bed, and in trying to protect myself from the fall, I reached out with my hands and broke my left wrist. No fun, except that I had a good time painting my cast, but come on—I can buy a canvas for that kind of fun.
More recently, I find that I’m falling right out of my chair. It happened four times in a row just last week in one night!
I usually am asleep when it happens. Yeah, I know I shouldn’t sleeping at my desk, but you all know what it’s like to be on a ton of drugs, mostly sedative, right? You fall asleep even when you’ve paid to go see a movie! I often say to people, “Sometimes I go to the movies, pay for popcorn, and then take my nap.”
This is a serious issue, however, especially if you have lost bone mass due to inactivity. Our bones are not the sturdy bones we once had. They break easily.
I want to say something to our caregivers, those of us who have one and most do. They can be spouses, children even friends.
Don’t chastise us for having fallen because we wore the wrong shoes, or we shouldn’t be sleeping at our desk, or whatever the reason. What is needed is consoling. It’s frightening to find yourself on the floor from a dead sleep. It’s also frightening when you’re walking along and your legs give out on you out of the clear blue. This has happened as well.
Many of us suffer from the heat in the summer. It seems to be one of the various symptoms that we all share, then of course, we vary according to the location of our lesions. This heat exhaustion that we have, for lack of a better way to explain it, will often bring us to our knees, or cause our legs to buckle from underneath us.
Here again, don’t chastise out for being out in the heat too long, or not wearing a hat, or cooling vest.
What is this? What happened to, “Are you okay?” “Do you need help?” Huh? Can someone please tell me why there is this lack of comfort from the people who love us? Okay, maybe I’m being too general here and lumping everyone into one big pot of non-comforting people. I’m sure there are folks out there who would not react this way. But you know what? I find that strangers are the ones who run around wondering if they can be of assistance to me when I fall.
Sure I fall in public as well. Going up a curb, going down a curb, trying to get up the steps of a building, and so on. These good people have such concerned faces when they approach you to help you up and believe me, I need help.
Alright, I’m going to end this politely and say this. Whether you have MS (Multiple Sclerosis) or not, people fall every now and then. They get tripped up or whatever. It just so happens that people with MS often have a condition called drop foot as well. (Click on the link if you don’t know what this means.) We often get tripped up. Some of us have myoclonic jerks which may contribute to falls. Some of us with or without MS just fall every now and then. Right?
Don’t go yelling at us! I would not yell at you if you fell. The first words out of your mouths should be words of comfort.
Tomorrow you can yell at us.
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.