Rambling and Whining

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snowdog
Regular Member


Date Joined May 2006
Total Posts : 137
   Posted 11/19/2007 4:36 PM (GMT -6)   
 
I haven't been on the forum for quite sometime. However, I decided to ramble for a minute.
 
I have never been comfortable with the MS dx I recieved from 2 Neruos, 2 opthamologists and my GP. (I think my dog got into the act at some point)
 
After all you go through to get the DX, and then the words "you have MS", you are relieved that you finally have a name to the misery. But then you start learning about the misery. You find out that although some symptoms are somewhat general to everyone.......everyone is different?
 
"Then what can I expect if symptoms and meds are different on everyone"  " How the crap do I deal with this" ......thinking of coarse that you can take Motrin, Asprin, Tylenyol for pain or the drugs like T-3,Loritabs etc for higher pain if you have headaches, stiches, migraines, broken bones, surgery and the like.
 
You can take arthritis meds (sometimes the same as above) for arthritis and anti-biotics for all kinds of things.
You suffer through a cold in 3-5 days, the flu....maybe two weeks, etc etc. We know what to take for PMS, and Erictile disfunction. It goes on and on.
 
How do we know all of this. Most of it because we all have had a cold, upset stomachs, headaches etc. And what we haven't had, the TV tells us about.
 
But I have to tell you that MS is a bit like a lone wolf. I have had this dx for now going on 3 years. Some of the original symptoms have quieted down considerable, some have NEVER gone away, and I have a fruit bowl full of new ones. But what are the new ones? Can I tell what's new and what is some other kind of disease, some other kind of flu, some other kind of getting old issue? No, and what's worse is.....although I have experts at MS, they don't always know either. Is an educated guess ok? Not with me.
 
I was thinking the other day that I could die of a heart attack. Why? Heck, I have pains shooting up and down my arm all the time....add an MS hug...which brings on shortness of breath for me.......TaDa....heart attack?
I can't be running to the hospital or calling the paramedics everytime something like that happens. The boy that cryed wolf comes to mind.
 
The weakness in my legs are still here from day one. And I still get the pins and needles but not as severe. Of coarse my left eyesight is still only half there because of the battle with ON. But the now daily "twitches" I get in my legs and arm muscles are annouying and I have only had them for 6 months out of the 2-3 years. Chronic pain in my arms and my legs has become a real pain (LOL) and new as well. (Never in my joints, just muscle ache. Sometimes I wonder if it is because of the muscle contractions....like an EMG) 
 
My once in a while hand trembling has become worse. I have had burning senstions in my face and sometimes my left side (arm or leg) but numbness doesn't seem to be with me noticeably like it was at the outset. The list goes on.
 
My doctors say, "you have MS. what did you expect?" I guess that is the reason for the rambling......I didn't know what to expect. Now after years of reading the wonderful messages of brothers and sisters that have this
mess, and talking to doctors, as well as ....what adds up to months and months of books and articles........I still don't know what is coming.
 
I work everyday, but it is getting harder and harder to deal with the consquences of 8-9 hour days. If it wasn't for Anti-depressents and sleeping pills, I would be in a coffin. But I am guy. I continue to gut it out, just like before I was dx'ed. I can't stop working, I couldn't make enough on disability and I have a years before retirement. I have seen and read the horror stories of people trying to get on disabiltiy. Although I feel disabled most days, I am not in a wheelchair, I can walk but not without my portable cane. I can still feed myself, and type on a keyboard........
 
Am I in awful discomfort every day.........ya, I am, and it is getting harder to deal with.......is that a disablity? I don't know........because wheelchairs and such are so visual. And as I am constantly reminded....we are all different.
 
Getting answers is what we all do when we write to forums......that and some comfort that we are not alone even if we are different like they say. Thank you for letting me ramble a bit.
 
Dog

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 11/19/2007 5:47 PM (GMT -6)   

Hey Dog,

You said a mouthful.  When I was diagnosed, my docs had me sitting on pins and needles with "well it might be brain cancer." When I first got the MS diagnosis I was relieved.  Slowly it started to sink in that though I was not going to die from this disease, it has the potential to really makes things bad.  I had lost my normal way of life forever.  I had such a rough time with that and I still struggle with it off and on.  I am like you.  I need to work in order to maintain my standard of living.  I do not qualify for disability because I am a teacher.  I do quailify for disability retirement through my employer but that is less than half of my salary now ( and half of a teacher's salary is not much ).  We would have to make drastic changes to afford this crazy life we lead. 

I too have symptoms that remain fairly invisible to everyone but can be rough to manage day to day.  It is so hard to keep a positive outlook when you see how your life has and is going to change. 

I count my blessings though.  I have a wonderful and supportive family.  I have the best friends I could ever imagine.  And for now I am working and keeping up.  I am worried for the future but I try to take it one day at a time.

You have my sympathy and my prayers.  We are siblings in lesions.  No one understands this like another with MS.  Hang in there, Dog and try to live one day at at time.  Find joy in the things you can do and the people you can love. 

Love and prayers,

 


Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 11/20/2007 9:23 AM (GMT -6)   
Hey Dog,

I wouldn't say your rambling, more like getting alot of your chest, which I'm sure felt good. You opened my eyes a little when I read this, I never thought about the Heart Attack thing, I have shooting pain also and guess if I did have an heart attack I would probably never now. This is an ugly thing we go through every day and we all need to stick together and hopefully soon we'll have better answers. Hope everything get's better for you- Tertle.
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