Thursday, February 28, 2013

"TODAY", FEB 28th is RARE DISEASE DAY 2013! The 30th Anniversary! Check this out!

  To go to this site, please click on THIS LINK:

  Feb 28th, 2013 - The "30th Anniversary!"

Today is "Rare Disease Day, 2013" across the WORLD! A time of CELEBRATION for all of us who have one of these AWFUL THINGS! This celebration does give us HOPE!

You will ALWAYS see this in the left side-column of my blog! You can click on it and learn MORE! OR, donate to help RESEARCH these ORPHAN DISEASES!

I am VERY lucky in that my husband is still with me! I love him VERY much, and he, me. In the beginning, it was NOT easy! As each NEW piece of medical equipment came into the house, he had a HARD time. I didn't because I needed it, but he was NOT happy. This hit me ONLY 4 months after we were married. Surprise, surprise. PLEASE WATCH THIS VIDEO AND SHARE IT! KNOWLEDGE! SPREAD THE WORD!

Why do I say CELEBRATION? Because it is. It brings AWARENESS to these so-called 'orphan' run-away diseases that have NO CURE and no one can figure out. Scientific studies have been done, studies on the diseases have been done, people have volunteered to have studies done on them - (guinea pigs!), and more, and still, NO CURES!
The most important thing of all about these RARE DISEASES is that the number of people they affect. VERY FEW, which is why SO LITTLE RESEARCH OR GRANT MONEY IS GIVEN TO HELP US.
I have Stiff Person Syndrome. Only 1 in 1 MILLION people get this neurological muscle disease, which is also under the category of Movement Disorders. Your Central Nervous System cause the muscles in your body to go rigid/completely stiff, (remember that woman in the Bible who looked back at Sodom and Gomorrah? That's what my body does - becomes extremely hard/stiff, to where I cannot move, then the muscles, since they are not supposed to be like that go into spasms. It affects the ENTIRE BODY, including the face and neck. The arms can be affected, too, but I've only had that every now and then. In my case, my 'core muscles' are affected the most. Our core muscles start in the stomach and wrap around to the back. They are the ones that give us strength. Often I will start to get nauseous, and immediately once that happens, my stomach will start twinging and my back will start pinging in the center over the spine, and the spasms will start. The muscles all contract against and move against each other, all of them going every which way, NOT SPARING ONE MUSCLE. (The WORST for me is over the muscles that cover the kidney area.) This knocks me down, literally. I cannot move. The spasms work their way into the small back, the thighs, calves and into my feet and toes. My neck may even feel tight, as if I'm being strangled. I've never been strangled, but I can only guess that is what it would feel like, and my cheeks start twitching.
There is a video at the end of this post that shows a woman going through the spasms that Stiff Person Syndrome causes. IT IS ALARMING - so I am warning you, it's NOT PRETTY. This is 'me' when the spasms are at their WORST. The ENTIRE time this woman is going through the spasms, you can barely hear her voice grunting, moaning, groaning, crying, etc., because of the oxygen mask. The oxygen mask is needed because we can BARELY BREATHE as the pain is SO SEVERE. "IF" you want to watch it, I urge you to. This IS what I suffer from, exactly like this woman. You'll see when her body curls up into the fetal position, that is when the muscles over the kidney area are spasming at their worst. Again, it is NOT a pretty picture. Later I explain in my post here I start in the recliner, but the spasms take over so bad, I'm practically hanging out of the chair NOT wanting to move back into it because "IF" I move, the spasms come on stronger and worse.
All I can tell you is it is the MOST PAINFUL disease there is. NOTHING takes the pain away of the muscles spasming.
Treatment: Medications/muscle relaxers, that don't work that well. Often I will end up in the hospital needing a couple of bags of muscle relaxer medication in an I/V drip in order to get them to stop. If I stay home, I have to crush the pills into a powder and let them dissolve in my mouth (YUCK!) so they are absorbed quicker. Do they work? No. Not all the time. I cannot do this normally, but when the spasms hit, I am curled up into the fetal position sideways in my recliner, then I end up half in the chair and halfway out 'trying' to get relief. I'm moaning, groaning, crying. They do not stop until they want to.
How often does this happen? Every day. They may not be 'this' strong every day, but they would be if I'm not careful. I am completely unable to control them, but do try with the medications so they don't go full-blown, but it doesn't always work. I must rely on that medication ALWAYS. Without it, I would end up in the hospital, and even with it, I still end up in the hospital. I don't like that because the hospital does not know OR understand what this disease it. (A RARE disease - WHO HAS TIME FOR THAT?) I generally have nurses, or, more commonly it's the ones who come in on the 2nd shift, after I've been on the I/V for one round and the spasms have settled a little by then, but I still need another round of medication. They'll make a remark such as, "Oh, I see here we have a drug addict. Another one." Ewwwwww! That makes me SOOOO angry! I tense up again, and muscle spasms return! They are SO IGNORANT of this disease, all it takes is to look it up on the internet and they could educate themselves. At times I WISH I WERE a drug addict just so it would NOT bother me when they say that! But I am not, and NEVER will be. IF I were to abuse that medication, it would NEVER work, and that is the ONLY thing that keeps me 'somewhat' able to function, and to be able to walk only 7-8 steps, as the rest of the time I must rely on a wheelchair. I cannot roll my own wheelchair, either, because it causes spasms as I'm having to use my core muscles. I need someone to push it. I have a power wheelchair, and need a new one, as the one I have won't hold it's charge for very long anymore, but it gets little jobs done. I need to get that done and get a new one. Another thing I cannot do is sleep in bed. I cannot lie on either side because the spasms put up to 6 TONS OF PRESSURE on your skeletal system, and my back is a train wreck. I have herniated discs galore, spondylolisthesis, facet joint disease, spinal stenosis - the spinal canal narrows and presses on the spinal cord, and many other things ALL caused by the muscle spasms. The ONLY way I can lay in bed is on my back propped up with many pillows and one big one under my knees, BUT, those muscles over the kidneys I was telling you about start to spasm when ANY weight is put on them. When I wake up in bed, with my weight on those muscles, the medication is worn off, and I cannot move and spasms start up. The 'only' way I can sleep is in a recliner. I can disperse my weight so I am not putting pressure on the muscles.
I did come up with a solution to being able to sleep in bed with my husband. My Dad. He is VERY good with woodworking, so I asked him to help build us a headboard that comes out on the sides like a Wing-Back style chair. That way I CAN sleep in bed while sitting up and dispersing my weight OFF the back muscles, but he won't build one. I don't know why? Thanks, Dad! ALL I want to do sometimes is be IN A REAL BED! That will remain a dream. (Not sweet!) We ALL have dreams, hopes and desires! They don't all come true, either, so . . . I was thinking of pushing the bed up against the wall, but then HOW can I get INTO bed? LOL!!!
I refuse to be negative about this disease and to be POSITIVE!
If you would like to learn MORE about Stiff Person Syndrome, you can do so by going here: What in the World is Stiff Person Syndrome It is the BEST paper on this disease. For a more scientific paper about this disease, you can visit
Meanwhile, we have Facebook Groups, Private Groups, Support Groups, and more! Websites that help each other out, people who help each other, we call each other on the phone for support and more! We STICK TOGETHER! Without each other, we have no one.
What helps ME the MOST? My Book Blog! I get to focus on the POSITIVE and read GREAT books, taking my mind OFF of this disease! It can be VERY TOUGH to keep up sometimes, but I TRY! I may not always keep up, but I TRY! I NEVER look at ANYTHING AS A FAILURE, BUT AN ATTEMPT! The mind has a LOT to do with EVERYTHING IN LIFE! Keep a healthy mind and you can go FAR!
Thanks for reading this! I hope you get a chance to read more about this and other Rare Diseases! If you feel like helping money-wise, there are ways to do so at those websites listed above!
Again, thank you for reading this!
Here's the video:


  1. Thank you posting about the Rare Disease Day. I have a rare skin disease called Nodular Prurigo. It starts with an intense itching and leaves horrible open sores. I have it on my shoulders, back, arms, one ear, legs, buttocks.When it heals, it leaves scars. My legs look like a battlefield. Some people have to get skin transplants. I am using special creams and taking light treatments every week. If I stop, it will get worse. There is pain when clothing or beds press against the sores.

    I have been interested in Stiff Person Syndrome ever since I saw it featured on the TV show Mystery Diagnosis. I have been on daily muscle relaxants for over forty years. If I don't take them, I can't bend. I have forgotten and my husband has to bend parts of my body for me to get out of bed. I have been telling my doctors for ages that without the relaxatants I walk like Frankenstein. They just nod and don't say anything. Also have lots of muscle spasms. I don't have. Sometimes a part of my body gets into a position and I have to really push it back. All that may not be stiff person syndrome but I think it has to be some sort of movement disorder! Will read that paper over very carefully. Thank you again for your great post.

  2. Thank you so much for this awesome post and sharing with me. I am late to the party, but so appreciate the message and will try to spread the word about all of us being more aware :)


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