Just stoppin' by to say hi!

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Just stoppin' by to say hi!

Postby hartagold23 » Tue Mar 18, 2008 9:23 pm

Hi, ASAP friends!

Sorry I haven't been here in a while...but hello, nevertheless!

I continue to get PT since my surgeries and have regained a little bit of strength, but not much. Still using a walker to get around but haven't used the wheelchair in several months. I guess that's a good sign. The PTs tell me my hip muscles are extremely weak and cannot help hold me up very well or balance me, but they show a tiny bit of improvement since last July's surgery. Also, I still have moderate spasticity in my left leg. Stretching helps with that for a few hours. I don't have much pain except now my scar is sore and sensitive...I wonder if that "means" something? The PTs said it is probably just catching on the skin and being overly sensitive and that I should just massage it. Do you all massage your scars? Just wondering...my doc never told me to do that.

I read a recent post on here that some of you don't go out much...that it's easier to hide things if you avoid the public. I have to agree; I haven't been going out much either; but then the cold and snow don't help. I have, however, been trying to start an at home business, learning all I can, and I find this is very good therapy for me and my spirit.

Anyway, I go back for my one-year checkup in May and I'll let you know what is seen on the MRI. I'm keeping my fingers crossed that I haven't re-tethered. Seems to me I would know if I had, but then maybe not.

Just know I have been thinking about you all here and I'm glad I finally came back and posted. Sorry I've been so lazy with it. (And, by the way, I think I'm going to call this "the year of the teeth, " I've suddenly been losing teeth (via fracturing) and fillings and have needed several root canal treatments and crowns since about October! They're threatening to pull my teeth and put in dentures--I'm too young for that!! Sheesh, does it ever end?!)

Take care and thanks for listening.

Barb :wink:
SM/TCS/SB-lipoma/B12 def/Scoliosis/IBS. Had TCS surgery May 24 '07-syrinx totally drained! CSF leak repair--July 16 '07. Currently using a walker for short distances, probably permanently. Surgery was worth it to kill most of the pain!
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Postby georgiagal » Tue Mar 18, 2008 9:33 pm

Hartagold, I'm so glad that you're doing so well. Good luck with starting your business, it really sounds like great therapy.

Look forward to hearing your mri results.

GG
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Postby Sandy » Tue Mar 18, 2008 10:38 pm

Barb!

Good to see you! I've wondered about you several times.

You really caught my eye when you said most of us avoid getting out because it's easier to hide things.

I don't go out hardly ever except for groc. runs but it's not to hide things. When I go out I get hyper-stimulated with all my symptoms. I know that's not the right word but you know what I mean?

Lights are too bright, sounds are too loud, in a restaurant the clanking and the loud talking. I just can't take it.

And when it makes my symptoms worse, that's when I'm apt to say stupid things that make no sense. THat can be really embarrassing.

But anyway good to see you and hear how you are doing. I'm really happy to see you.

love,
sandy :D
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Re: hi

Postby hartagold23 » Wed Mar 19, 2008 12:08 am

Thank you, GG!

And Sandy--I know what you mean by hyper-stimulated...my spasticity goes into overdrive when I go out. But the worse thing for me is that too many people stare rudely at me and my walker, probably because I look way too young to have one. Anyway, the stares embarrass me, so I don't like to go out much. You might remember that I used to go out singing at a club, but unfortunately it closed down in February due to lack of business (I'm guessing). The open mic was hosted by my favorite local band, so I'm waiting to see where they will go next for an open mic, then I'll go out again singing. Can't wait! In the meantime, I'm trying to start an at-home business to raise money to pay for my much-needed dental work, which Medicaid is not covering. But I'm also doing it to become more independent and improve how I feel about myself and my disabled condition. I don't want my disability to define me, as it were.

Thanks again for your kind words! Missed you, too!

With love and hugs,
Barb
SM/TCS/SB-lipoma/B12 def/Scoliosis/IBS. Had TCS surgery May 24 '07-syrinx totally drained! CSF leak repair--July 16 '07. Currently using a walker for short distances, probably permanently. Surgery was worth it to kill most of the pain!
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Postby Ryzing » Wed Mar 19, 2008 6:04 am

Hey Barb!

Good to see you again - I was wondering about you the other day. I'm glad you came on and posted an update.

Diane
Syringomyelia - C4-T12, Fibromyalgia, Scoliosis, DDD
"If you don't change your beliefs, your life will be like this forever. Is that good news?"
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Postby Janice » Wed Mar 19, 2008 9:27 am

I just left you a note on another post. It's definitely good to see you posting again. :D

Thanks for the update and I'm happy to hear that things are still working out. It's hard to believe that it's almost been a year. You sure are keeping busy.

I wish you well with your new adventure in business.

Take care and welcome back!!!
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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Re: Hi

Postby hartagold23 » Thu Mar 27, 2008 7:31 pm

Thank you so much, Keesha, Diane, and Janice! Sorry I'm so late in thanking you, but I forgot to check off "notify me when a reply is posted!" So I just saw these now...

Hope you are all okay...

Love,
Barb :)
SM/TCS/SB-lipoma/B12 def/Scoliosis/IBS. Had TCS surgery May 24 '07-syrinx totally drained! CSF leak repair--July 16 '07. Currently using a walker for short distances, probably permanently. Surgery was worth it to kill most of the pain!
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Postby kiminfla » Thu Mar 27, 2008 7:41 pm

Barb, I've thought of you often since your surgery and pray you're doing well. So nice to hear from you! 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 bri23t » Thu Mar 27, 2008 8:14 pm

hi hart...i too find it 'easier' to stay home rather than face the world and the weird looks as i get about w/ my walker...being all of 27 i do get some sideways glances and it pisses me off and is annoying so i have found hangin at home suits me better...

ok well i am glad for u that ur improving be it slowly (better than backwards) since ur surgery...hope u check back in to the site more often...have a good night:)
dx CM and SM 09/05, failed PFD 10/05
VP shunt 11/05
removal of cerebral tonsils 1/07
SM (through entire spinal cord)
TCS and EDS dx at TCI 4/08
TCS surgery 4/08, pfd revision and VP shunt revision 5/08
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Postby cash71 » Thu Mar 27, 2008 8:23 pm

Barb!! I'm so sorry I missed this last week. I was off the boards due to ongoing nausea issues. So justed wanted to say hi and that it's great to hear from you. I'm glad to hear you are doing well still and that you have had such good results from your surgery.

hugs sent your way,

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 Snoozie » Thu Mar 27, 2008 9:53 pm

Hi Barb, good to see you here again. I hope you continue to see some improvement with the PT.

Good luck on the home based business, I hope it is very profitable for you. Dental issues are hard, I have a bunch of crowns and need some more but last time at the dentist did not go well.

A friend of mine got a dentist to do some work for her for free because she is disabled and medicare did not pay for her dental that she needed. Maybe you could ask some agencies around you if there are any dentists that work with them. Dental work is crazy expensive even with insurance so I hope you find some help.

Good seeing you here again. ...Sue
Seek peace, and pursue it. (Proverbs 34:14)”
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Re: hi

Postby hartagold23 » Thu Mar 27, 2008 11:08 pm

Kim, Bri, Caroline, and Sue--thanks so much!

As for the dental work--I have a kind dentist who allows me to make payments that are affordable despite how much work he is doing on me. I have gone to this dental practice for 30 years, so they know I'm good for the money! I think there are not enough nice people like my dentist in the world. He does excellent work and is very understanding about my situation.

Thanks again!

Barb
SM/TCS/SB-lipoma/B12 def/Scoliosis/IBS. Had TCS surgery May 24 '07-syrinx totally drained! CSF leak repair--July 16 '07. Currently using a walker for short distances, probably permanently. Surgery was worth it to kill most of the pain!
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