Waiting for Something?

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Waiting for Something?

Postby rdm73 » Tue Dec 11, 2012 3:03 pm

Read this in an article: ” Syringomyelia is considered a terminal disease that causes a person to literally waste away. Ultimately, it is the complications that people eventually die from. Arms and legs become atrophied due to immobility; organs begin to fail because the body’s dramatic deformity causes them to over work. Stroke and aneurysm is a common occurrence for people in the later stages of syringomyelia.”

The arthur's view is that no data is kept regarding the relation of a death by stroke or aneurysm to SM or to anything else other than a stroke/aneurysm. I thought a lot about this and it makes sense I suppose. I've been spending my time waiting for something. I don't even know what that something is. The article did give me a new perspective. Pain or not...I must find peace and happiness now. It may be as good as it's going to get right now and time is wasting. Look out world (when I wake up from my nap) here I come!!

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Re: Waiting for Something?

Postby reedy » Wed Dec 12, 2012 8:25 am

Good point, Pop.

Maybe I'll get busy on some things that I need to do to be happier, instead of waiting for happier to arrive so's I can get busy on tasks.

Grin-N-bear it! Muscle on through! Stiff upper lip! And all that.
With gratitude that there is a forum we can come to when we need information and a place to let down the guard...
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Re: Waiting for Something?

Postby rdm73 » Wed Dec 12, 2012 12:41 pm

Good Reedy...I hope you can find the strenth to do some things that make you happy. It's a little easier this time of year for me, with the holiday activities. I was kind of absent last year, skipping much of it because I didn't feel up to it and veging on pain-killers when I did attend. This year, I'm committed to enjoying as much of it as I possibly can. Even if I'm sitting in the background just watching the activities. I don't have to hands on participate to enjoy the warmth of family.

I havn't been that mobile lately, except when it has been absolutely necessary. Today, I pushed myself out the door and to the local mall. The Christmas music and decorations were so uplifting. Watching the hustle-bustle of the shoppers brought a little bit of joy to an otherwise routine day. Today was better than yesterday and I'm looking forward to an even better tomorrow. I might try decorating the house a little bit more.

I feel your pain

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Re: Waiting for Something?

Postby syrinx48 » Thu Dec 13, 2012 10:56 am

I can totally agree with you both!

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Re: Waiting for Something?

Postby JeffinMI77 » Mon Dec 24, 2012 12:31 am

I feel the same way, like i'm always waiting for something. I'm always referring to "well when this happens". I've spent the last several years "waiting". First I was unemployed and was waiting to finish school so I could get a job. Then I got the job and waited for insurance. Right after I got insurance I was diagnosed with SM. My symptoms progressed rapidly do to the nature of my job so I was forced to apply for SSD/SSI. Now i'm waiting for approval from disability both at the state and federal level. My friends and family are always telling me to get out and not stay in my room or the house, but how can I go and do anything with out any money? I even gave up my car just to survive. I'm single and haven't been on a date since I don't know when, but how can you ask someone out when you have no money to pay? I'm living with my parents AGAIN and using their car. It's pretty bad when you can't even visit friends/family cause you can't afford the gas. My parents spend evey extra penny so I can see the Dr. once a month.

So I guess I know what i'm waiting for lol. I hope things change to because i'm tired of waiting. I want to live my live to the best of my ability. I need to be on an antidepressant, but I cannot afford another med.

Sorry for the rant. I am really not this person. I can't believe what this has done to me mentally. I'm the one who wants to make everyone happy, not bring everyone down.
syrinx x2 T7-T8 to T9, and T11-T12 to T12-L1...also bulging disc at T4-T5, T6-T7, and T8-T9.
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Re: Waiting for Something?

Postby rdm73 » Tue Dec 25, 2012 3:11 pm

Thank goodness for your understanding parents!! SM is a difficult journey and it's limited how many friends and family will understand what you're dealing with and that are willing to stick with you on this journey. I know it must be more difficult for a young person to understand what really matters in this fight. Many or most of us in this fight are limited more by the debilitating symptoms than they are by the financial difficulties. Yes...finances have been an issue, but I'd trade any monies or things for freedom from the pain. What I'm trying to say is you have a roof over your head, I assume food to eat, and parents that are willing to spend their last penny to get you the medical help you need. So, count your blessings. Focus on learning to live with SM. The SSI stuff can be slow, but it will eventionally get straight.
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Re: Waiting for Something?

Postby wildfyr » Tue Dec 25, 2012 4:03 pm

Great advice RDM 73. Right on the money with your thoughts on this. I agree totally . Family is more important than money. SSI will come thru eventually. Good luck.
sm T-4 thru T11,3 hemangiomas T11&T12, scoliosis, in respiratory failure Jan: 2010 now terminal, Voice effected, ., being put on portable ventilator and soon a feeding tube due to aspirating into my lungs. December, 2010, colostomy pending
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