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Private Message added 2010-11-16 |
| Date | 2010-10-15 |
| Message | I have read much of your profile with great compassion. I am 18 and just diagnosed with SM and am beginning what seems to be a long and scary road to treatment. They don't want to operate due to my age, so I guess I will be trying some non-surgical treatments and if that does not work, I will still have surgery. I feel this is terribly unfair, especially for someone who should have their whole life ahead of them, and no one seems to understand my position. I have not even started treatment and I am already losing hope overall, which is very unusual for some one as optimistic as myself. Any advise or wisdom would be so greatly appreciated. I have never had stability in my life, and this is just another and significant obstacle in my path, and I push through every day with no light at the end of the tunnel. I don't think I could do years, or even a lifetime of this, and I would love some one with experience and guidance to possibly help. I do not believe I have ever experienced true fear before this moment, and it is a feeling that I want out of my life, but it is an inevitable fear,and that is what makes is so fearful. |
| Date | 2010-09-09 |
| Location |  |
| Message | I thought I had a lot problems....Boy O Boy ! I really feel for you.I have SM due to CM1 had decomprsn surgery in 09 but SM has not gone away. I live daily (some days are better than others) with pain and weakness in arms,back,legs.I have recently started having twitching thoughout my body, but they are not painful like you have described. I have problems with my arms that I describe as Muscle Exersion.I have problems washing my hair, brushing teeth,typing,without my arms feeling exhausted.To much walking causes severe back pain as well as hip and leg weakness to the point they want to give out on me. I am afraid of taking pain meds. I have luekemia and take med for it and Im afraid to mix the meds. I would love to talk with you because I know how you feel to put on a smile for others...I do it too....Please if you can write me..I would love to have someone to talk too. Sincerely, Theresa (tbroad72@aol.com) |
| Date | 2010-05-16 |
| Location | |
| Message | Thank you for sharing your journey!!! Understanding your daily challenges more helps me to know exactly what to talk to God about for you You are always in my thoughts and prayers.Peace and blessings!! |
| Date | 2010-04-10 |
| Location |  |
| Message | A well thought through website Janice. I'll be logging in again when I need more info on SM. You'll be hearing from me soon, thanks for the info, have as good a day as your body will let you. You are in my thoughts, Danielle. |
| Date | 2010-01-17 |
| Location | |
| Message | I read your blog tonight with interest. I too am affected with SM. I have a cervical, thoracic and lumbar syrinx along with multiple bulging discs. I was diagnosed in May of 2006 after a 45 minute sneezing episode caused me excrutiating back pain. Although, I didn't realize it at the time, my life was forever changed, although my NS suspected my SM was congenital. As you mentioned, I also am at my best when I have distractions. It's obvious from your posts that you are a very social person. My advice to you is use that gift!! Get out, in spite of the chronic pain and get involved. I can picture you leading a group of seniors in a word puzzler, reading to preschool kids at your local library, leading a support group in your area for those with chronic pain, the possibilities are endless. One of my friends gave me the same advice and once I was past being offended and feeling she didn't understand.......I tried it and it helped. Do I still have daily pain and issues from the SM? Absolutely, but I have them if I stay at home too so I choose to get out and live. Life is short, enjoy the journey. Sincerely, Sue (RN, Retired but not by choice) |
| Date | 2009-11-18 |
| Location | |
| Message | God Bless You, Prayers and Hug's Our Son Kenny lives with Chiari and Syringomyelia. It is devestating for a Young Man. Yes, He lives wit much pain and is very limited. Truely Understand He is in His Early Thirties. We care for Him. Prayer's and Love Carol |
| Date | 2009-10-15 |
| Location | |
| Message | I loved reading your blog, my daughter is now 1 and was diagnosed with Idiopathic Syringomyelia. Her syrnix is at t9 to the base of her spine and is biggest at t5. It was 3mm but in less then 3 months it went to 8mm. ANy information you have or any support you know of please contact me. I am at witts end |
| Date | 2009-09-29 |
| Location | |
| Message | Hello Janice Im sorry you have to deal with the pain and suffering of having SM. My daughter was diagnosed at 8 months of age with it. She has no chiari and no other known reason for having it. My daughter is now 11 months old and just had her first surgery. Im scared and sad for her future. I will say a prayer for you |
| Date | 2009-09-29 |
| Location | |
| Be sure to sign my guestbook on the way out!! | Hang in there sweetheart!! |
| Message | Janice: Roz PM'd me and said to check out your blog. I looked at it recently and knew you had not updated in a few months. She said you need our support and boy she hit the nail on the head. Please, oh, please, don't give up the fight! You are stronger then you give yourself credit for. If I were near you, I would come get you and take you out. You know I would. All your ASAP friends love you and need you. Please hang in there. Your blog made me cry. I feel so bad for you! I hope just getting things off your chest or venting as we say was what you needed. I am here for you, just pm me. Wendi |
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