Waiting

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Waiting

Postby dtyree » Thu Mar 27, 2008 5:19 am

Over the last 2-3 weeks, I have noticed a progression of symptoms. I cannot button buttons so wear pull over clothes, I can barely sign or print my name, I tried to scramble an egg and wound up just beating it. I limit my climbing up the stairs to twice a day, that's all I can do. I have to use a cane whenever walking. Scary thought, I am still driving, have to, and leave severeal hundred feet between me and the car ahead.

My arms, fingers and legs are just weak. I use to practice piano about 2-3 hours a day, barely made 30 minutes this week. I finished and my hands were just shaking.

I have been working with my NL who is great, I am glad I got hooked up with him. He is running several tests and will have an answer, but it will take some time. Neurological disorders are very intertwined with symptoms and it is like peeling away the skin of an onion until you finally reach a core. A diagnosis may take a year to come.

Last night at choir rehearsal, I shared this with the choir, they need to know that some decisions on my part may, will be coming in the near future. It was so comforting to know that they do care about my well being.

In the mean time, I am scared. I do not know what is going on and am fearful of the dx. I have related several of my symptoms to about 3 specific disorders, none of which are pretty. They all list a 3-10 year life expectancy.

So, I wait, until there is something definite, something to call all of this stuff.

Peace,
David
Been called a "walking medical dictionary".
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Postby dtyree » Thu Mar 27, 2008 5:36 am

Thank you Keesha. I did not know that you too have your hands full. I will keep you in thoughts and prayers.

I do sleep a lot during the day, which has messed up night sleep. This am got up a 3. Yuck! (And why are you up so early??)

Peace,
David
Been called a "walking medical dictionary".
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Postby dtyree » Thu Mar 27, 2008 5:51 am

Yea, that sleep deprivation thing is terribly ugly, you are so right.

I do have a walker sitting in the corner of the room. Right now, I admit, am too proud to use it even though I should. I do not want to admit something is wrong. Whatever is going on, I do have to come to terms with it. And for me, admittance is acceptance. I can't.

Peace,
David
Been called a "walking medical dictionary".
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Postby SMLady » Thu Mar 27, 2008 9:04 am

Hey David. Just wanted to let you know I'm thinking of you and you are in my prayers.

Hope you are having a nice day!
Proud Mom of One Son
Idiopathic SM T1 - T9, DDD, Scoliosis, Pinched Nerves, Bulging Discs, Spondylosis, Stenosis
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The Man who walks with God always gets to his destination.
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Postby ke4uzj » Thu Mar 27, 2008 10:07 am

I hope you are able to get some much needed rest .

I will keep you in my prayers!!!!

I wish I had more to offer though, I haven't learned to deal with this yet, so I am not much help.
TO BEAT STRESS:
LIVE BETTER, KISS SLOWER, HUG TIGHTER, BREATHER DEEPER, AND IF ALL ELSE FAILS THROW STUFF : )-

Give us a sense of humor, Lord,
Give us the grace to see a joke,
To get some humor out of life,
And pass it on to other folk.
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Postby Vagreeneys » Thu Mar 27, 2008 10:19 am

Hey David,

Sorry you are having a rough time. Do understand what you are going through with everything. I had to give up driving in november and now depend on others to get around and i was the type you couldn't keep down well guess what i am down but not out.

sleep deprivation is still hard to get use to last night was the first night in a week i slept more then 2 hours got a whole 6 hours wonder if that will keep me going for another week.

I will keep you in my prayers.

Heide
SM Syrinx c-5 to t-3 DDD t-10 and t-11 L-4 and L-5
Rhuematoid Arthiritis
Neck Fusion C-3 to C-6
Tavlor cyst
Tethered cord
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Postby cash71 » Thu Mar 27, 2008 11:28 am

Hi David, Sorry to hear that your symptoms are progressing. That can feel scarey can't it? I had a doctor ask me recently if I felt I was better or worse than a year ago....I'm definately worse and it wasn't until that question that I really thought about it. I try not to think how I will answer that question next year.....and the year after that........

I know that God has a plan for me (and you) but sometimes I wish he would get on with it!!!! :)

hugs to you,

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby SMLady » Thu Mar 27, 2008 11:29 am

Caroline, I hear what you are saying!
Proud Mom of One Son
Idiopathic SM T1 - T9, DDD, Scoliosis, Pinched Nerves, Bulging Discs, Spondylosis, Stenosis
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The Man who walks with God always gets to his destination.
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Postby cash71 » Thu Mar 27, 2008 11:35 am

Yes, I pray for patience...A LOT!!! :)

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby dtyree » Thu Mar 27, 2008 1:01 pm

Thank you so much everyone! The thoughts, prayers, words of encouragement, advice are greatly appreciated.

I was taught at an early age to be independent. Now I have to be dependent, an idea I am not familiar with. Now is hard to make plans, because I do not know what will happen. I have been working on a piece of music that I planned on performing 2009, that has changed. There is a host of music I had planned for this year. That too has changed. It is the not knowing where I will be in 6 months, 10 months, etc. Planning has no meaning.

My interaction with my son has changed. We used to play together, very little right now. He knows something is not right, but cannot verbalize what he is thinking. Last summer we spent a lot of time together at a water park and planned on doing it again this summer, that had changed. I do not know how much I can do.

So, a lot of changes, some I can handle, others no. And I do not mind change, but there are so many at one time. Whoa!!

Peace,
David
Been called a "walking medical dictionary".
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Postby Janice » Thu Mar 27, 2008 3:12 pm

Hi David,

I know exactly what you mean and it is so very hard. Especially when we do not know, even from one day to the next, how we will feel. I pray you are able to grieve and move on to make decisions that will be in your best interest, well-being and independence.

You stated that your plans have changed. We all know what that's like. I pray you are able to find solutions to your challenges in order to be able to still do the same things you planned last year, with adjustments that make it possible for you to be there if not completely involved.

For instance, I have the same concern as you about spending time with the two littles in my home. I loved taking them to Disneyland and Knott's Berry Farm. Last year, I had so many changes to adjust to, I didn't go at all. This year, I am experiencing even more difficulties than last year, however "I AM GOING THIS YEAR". I may not be able to do anything but "be there" but I know the kids will enjoy the fact that I did take them and will be there. In my life, I am learning that it is more important to just BE THERE.

You and your family are continually in my thoughts and prayers.

Keesha, I'm truly sorry to hear that you too are going through so many challenges. It makes me so happy to see that you are not letting your condition keep you from enjoying life however you can. I admire your strength and am encouraged by it everytime you show your life experiences with your family, despite all that you go through daily. I pray you always have the strength to enjoy life as best you can. Thank you also for sharing your experiences with us. I'm sure it's helpful to more than just me. You and your family are also in my prayers.

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Postby dtyree » Thu Mar 27, 2008 7:00 pm

I keep thinking on this, it has just about consumed me.

I have been a person that plans, looks into the future because of my church position. It takes time to prepare pieces and that is what I do. I know we just finished Easter, but I am looking at Christmas, is there something I want to play but have not. Also looking at 2009 our church's bicentennial celebration year. I had two large pieces planned and began working on them.

Now, the future has changed for me. And I do not know what it is that is changing it. That's the difficult part. There is no name, just symptoms. So, how does one deal with the unknown, how can you plan. (A lot of this is verbage that I need to get down on "paper" to help rationalize).

I read the 5 steps to chronic illness. How can you be angry at an unknown. How can you accept such? Do not know. It is as if I am in a state of suspension just moving forward. Someone mentioned living one day at a time. This thought is new to me. I have always looked ahead, now is the time to change something else. Several years ago, it was mentioned in psych class that older folks can accept change better than younger folks because of where they are in life and their amount of stability. Change is OK, but an overwhelming amount of change, I am not sure about that.

Because of the diabetes I live with, I have made several changes, in diet (changed that 3 times last year), and schedule. Having diabetes is so controlled by the clock, eating a certain time, checking blood a certain time, taking meds a certain time. So living by the clock is important for sugar regulation.

I had two surgeries that almost promised a new way of life. They did, but were so short lived. Now, it seems that they were an extension of life.

This will take a lot of sorting out, priortizing things, taking what is important and leaving a lot alone.

Thanks for listening.

Peace,
David
Been called a "walking medical dictionary".
dtyree
 
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Postby dtyree » Thu Mar 27, 2008 7:21 pm

A thought, I will probably need professional counseling on this one.

Peace,
David
Been called a "walking medical dictionary".
dtyree
 
Posts: 1383
Joined: Sat Nov 03, 2007 8:43 pm
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Postby kiminfla » Thu Mar 27, 2008 7:37 pm

David, I worked as a mental health therapist before the birth of my daughter almost 9 years ago...therapy/counseling can be a good thing...sometimes an objective ear can be helpful for achieving perspective. We're here for you too! Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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Postby dtyree » Thu Mar 27, 2008 7:43 pm

Thanks Kim. A little affirmation.

Peace,
David
Been called a "walking medical dictionary".
dtyree
 
Posts: 1383
Joined: Sat Nov 03, 2007 8:43 pm
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