I haven't been able to comment on my blog, or anyone else's as well. Don't know if it's me, or if it's the site, but I tend to blame others so..... Damn this internet world.
I completed my 3 days of soli-medorol infusion. It's 1000 mg of steriod iv'd into you. This was done at home. Can you even believe it? A nurse came out to the house, put a port in my arm (which was FANTASTIC!) not one ounce of discomfort the whole time. He then taught Brent how to hook up the bags of IV and to flush the line 2x a day. Brent went at it like a pro. I can't believe it. I don't know if I would have been able to do it. I get all shaky etc.
I had no side effects with the exception of a bad taste when drinking liquids. We were able to go about our buisness all weekend long, and I even slept. I had read comments by others who had had the treatment and there were several bad experiences. I was prepared for the worst, but thankfully, didn't have it.
This morning I began a regimine of 20mg of prednisone for 90 days. This is alot, and due to my having active lesions. Why 1000 mg didn't effect me, but this pill has me doing jumping jacks I don't know. It's not too bad though. My doc said some people can tolerate it, others can't. If I find myself having a tough time, he'll take me off of it. I plan on giving 120% though.
That's me.
Then there's the real star of my show... Benjamin.
Ben's last day of school was yesterday. No more kindergarten..... whhaaahhh! Now I feel old. (Which I am!)
He'll go to day care, which I'm sure I've said in the past in nothing more then a holding pen for kids. Don't think he really gets very much out of it at all. There tends to be a turnover, and the help is not as trained as I would like. BUT..
Ben doesn't mind going. He does get out of the car happily which means the world to us. They do let him totally slack there, but summer is called vacation time.... right????
Ben will start his extended school year July 5th and take him throught the first week of August. Then it's just a few more weeks of slacking till we're right back in Sept again. Crazy how fast the time goes.
I've been seeing improvements in Ben daily. He has the best personallity. All of his aids at school and daycare tell me Ben's a favorite. When there's subs, or new people they gravitate to him. When he goes to his after school program the typical kids notice everything about him. And it's pretty much all postive. (At least that's what the steriods are telling me.... lol)
Thanks to all who sent well wishes. I can't tell you how much I appreciate it.
Any advise? Please feel free. I know we're all different... but... it helps!
Tuesday, June 21, 2011
Friday, June 17, 2011
so that's how it feels to be diagnosed...
I just was diagnosed with MS.
I swear I still can't believe it. I've decided the route for me to take is a factual business type road. I've read up on MS, treatments, prognosis's, etc.
None of these things make me freakin happy. Or devestate me either. Yes, you can have it both ways.
History: I felt numb on the left side of my body. From mid trunk down my leg. It was as if someone drew an invisable line around me. I work at a retirement community in HR. After conducting an interview for a C.N.A, I was talking to our Assistant Director of Nursing, and mentioned this oddity. I thought it may be a pinched nerve, or just that I was sitting wrong at my desk. Nothing to even begin worrying about. She on the other hand had STROKE going on in her mind. She didnt' voice that so not to scare me, but strongly suggested I call my Dr immediately. I did. The medical assistant who answered the phone declined to give me an appointment instead instructing me to go to the ER immediately. That's when he said it sounds like a stroke.
I went to the ER close to my home and was taken back immediately. Trust me, I was responsive, clear, functional, etc. The one thing that got me seen was as I was explaining the numbness, beneath my left eye became numb as well.
The ER doc decided to run the gamut of tests. CAT scans, MRI, X-Rays. After a bit of time, I did let them know I had to leave by 5:15 to pick up Ben from daycare. I left with a perscription for Percocet (I have no pain, but... what the hell!) and the suggestion to see an orthopedist for a suspected pinched nerve.
I was home with Ben for about a 1/2 hour when the ER doc called me to tell me the nueroligist had looked at my MRI and suspected MS. My reaction - Get the fuck out here. This does not happen to me or anyone I know. False alarm. Not worried. He wanted me to see a nueroligist right away. He's actually friends with my primary and had called him at home. He also got my docs' cell phone # for me to call first thing the next day.
Well..... I got to tell you, he was right. Is that what happened? no. but he was right.
My primary and I decided what's the big hurry? If I've had this, what's a few days going to matter. It does. but... live and learn.
I went to see my nueroligst. He's an old guy. Thinks he's funny too. He reviewed my MRI, tested my reflex's and decided I have MS. This news was delivered in a way I didnt' get. I thought he had given my a clean bill of health. When I asked him why he wanted me to get additional MRI's he said because you have MS. With a smile. My answer was "wait, what?"
Anyhoo.... I went lastweek, two different days, to get cervical and thorasic MRI's. as well as an updated Brain MRI with contrast. I had made an appt with my nuero for Wed, forgetting that I conduct trainings from 8:30-3:30. I called to reschedule. They gave me an appt for June 30th. That was cool with me. I had that appt for approx 20 minutes before the Dr's office was calling saying... a no... we need you in here. Sound silly? I then asked for a phone conference. Let's just get this over with. a no... you need to come in. Now I don't know about you, but at this point, I'm pretty sure this isn't going to be good.
Well I researched what I could, informed myself of the basics and felt pretty prepared. There are several types of MS. Some worse then others. I guess I'll eventually progress to those types, but for right now I have your basic MS.
My Doc told me I had developed new lesions in my brain since my original MRI three weeks ago. His exact words are "You're bad!" I said, "Oh, because I tried to postpone my appt?". His answer, and remember.... ALWAYS with a smile. "No. Did you read the results of your MRI? You're bad". Now again. I try to limit my profanity, but.... what the fuck! Is that your idea of bedside manner. Yet.... it works for me. I asked him something in a fog, and his answer was, "We'll fix it" well alrighty then.
The fix is tough. Starting tomorow, I'll have a one hour infusion for three days of high levels of steriods. A nurse will come out to the house, set me up, and then Sunday and Monday, they're expecting me to do it on my own. Great......
After that, I'll be on oral steriods for three months. Also, I've been perscribed an injectible med for the rest of my life. The cost is over 45,000 per year so my husband damn well better keep his job with his great benefits! otherwise... screwed.
I went on the web to research the med. There weren't any negative comments with the exception of the price. The usual side effects are site irritation. When you inject it hurts/stings for 5-15 minutes, and after a while it will leave indentations in your injection site. I'm 44, and have officially given up my bikini bod. That part I'll live with.
So.... MS, daily injectibles, unsure future.....
What else you got for me?
I swear I still can't believe it. I've decided the route for me to take is a factual business type road. I've read up on MS, treatments, prognosis's, etc.
None of these things make me freakin happy. Or devestate me either. Yes, you can have it both ways.
History: I felt numb on the left side of my body. From mid trunk down my leg. It was as if someone drew an invisable line around me. I work at a retirement community in HR. After conducting an interview for a C.N.A, I was talking to our Assistant Director of Nursing, and mentioned this oddity. I thought it may be a pinched nerve, or just that I was sitting wrong at my desk. Nothing to even begin worrying about. She on the other hand had STROKE going on in her mind. She didnt' voice that so not to scare me, but strongly suggested I call my Dr immediately. I did. The medical assistant who answered the phone declined to give me an appointment instead instructing me to go to the ER immediately. That's when he said it sounds like a stroke.
I went to the ER close to my home and was taken back immediately. Trust me, I was responsive, clear, functional, etc. The one thing that got me seen was as I was explaining the numbness, beneath my left eye became numb as well.
The ER doc decided to run the gamut of tests. CAT scans, MRI, X-Rays. After a bit of time, I did let them know I had to leave by 5:15 to pick up Ben from daycare. I left with a perscription for Percocet (I have no pain, but... what the hell!) and the suggestion to see an orthopedist for a suspected pinched nerve.
I was home with Ben for about a 1/2 hour when the ER doc called me to tell me the nueroligist had looked at my MRI and suspected MS. My reaction - Get the fuck out here. This does not happen to me or anyone I know. False alarm. Not worried. He wanted me to see a nueroligist right away. He's actually friends with my primary and had called him at home. He also got my docs' cell phone # for me to call first thing the next day.
Well..... I got to tell you, he was right. Is that what happened? no. but he was right.
My primary and I decided what's the big hurry? If I've had this, what's a few days going to matter. It does. but... live and learn.
I went to see my nueroligst. He's an old guy. Thinks he's funny too. He reviewed my MRI, tested my reflex's and decided I have MS. This news was delivered in a way I didnt' get. I thought he had given my a clean bill of health. When I asked him why he wanted me to get additional MRI's he said because you have MS. With a smile. My answer was "wait, what?"
Anyhoo.... I went lastweek, two different days, to get cervical and thorasic MRI's. as well as an updated Brain MRI with contrast. I had made an appt with my nuero for Wed, forgetting that I conduct trainings from 8:30-3:30. I called to reschedule. They gave me an appt for June 30th. That was cool with me. I had that appt for approx 20 minutes before the Dr's office was calling saying... a no... we need you in here. Sound silly? I then asked for a phone conference. Let's just get this over with. a no... you need to come in. Now I don't know about you, but at this point, I'm pretty sure this isn't going to be good.
Well I researched what I could, informed myself of the basics and felt pretty prepared. There are several types of MS. Some worse then others. I guess I'll eventually progress to those types, but for right now I have your basic MS.
My Doc told me I had developed new lesions in my brain since my original MRI three weeks ago. His exact words are "You're bad!" I said, "Oh, because I tried to postpone my appt?". His answer, and remember.... ALWAYS with a smile. "No. Did you read the results of your MRI? You're bad". Now again. I try to limit my profanity, but.... what the fuck! Is that your idea of bedside manner. Yet.... it works for me. I asked him something in a fog, and his answer was, "We'll fix it" well alrighty then.
The fix is tough. Starting tomorow, I'll have a one hour infusion for three days of high levels of steriods. A nurse will come out to the house, set me up, and then Sunday and Monday, they're expecting me to do it on my own. Great......
After that, I'll be on oral steriods for three months. Also, I've been perscribed an injectible med for the rest of my life. The cost is over 45,000 per year so my husband damn well better keep his job with his great benefits! otherwise... screwed.
I went on the web to research the med. There weren't any negative comments with the exception of the price. The usual side effects are site irritation. When you inject it hurts/stings for 5-15 minutes, and after a while it will leave indentations in your injection site. I'm 44, and have officially given up my bikini bod. That part I'll live with.
So.... MS, daily injectibles, unsure future.....
What else you got for me?
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