I've spent the last week thinking if I should say about what will follow, and this morning I've taken the decision to say what's going on.
It has been a bit less than a year that my health was strange, feeling a lot of different issues : breathing problems, pins and needles in my entire legs when I was bending my neck, blurry and double vision, difficulty to swallow and so on....All these things are going worse when I was feeling hot or under a hot shower). The worse of the symptoms is everyday I feel dizzy, in a kind of a vertigo.
I've said it to Winslow, Brendan and Waichiro (all promised not to say anything and they've been nice not mentioning anything) that I was sick, I though it was a cancer...
But it's not
Last week we had enough money to see a neurologist (the GP said that I had to see that specialist) it has cost us a lot of money since I'm not yet able to have a health insurance here in Australia
I know now what's going on: I've MS or multiple sclerosis.
I don't really know what will be the evolution of this new shit in my life, Jim Conway has one but I don't know if the form of MS I've got will prevent me for keep walking normally, neither the neurologist, he said that I can still have the symptoms but with a very slow evolution and not necessarily not being able to have "a normal life" (I loved it when he said that....)
So yes after the Hohner MS, there's the Christelle MS
This is just to inform you because I need to share it for some reasons, I hope there'll be no messages of pity or things like that.
Last Edited by on Nov 14, 2011 5:39 PM
Christelle, only my good thoughts and prayers going out to you. thank you for taking the step in courage and faith to tell your peers what's going on with you. I wish you the best. ---------- http://www.reverbnation.com/jawboneandjolene
Christelle, I send you my thoughts of strength and happiness. Treat it like your harp, when things start getting too low concentrate on the high notes. Those notes are hard for a lot of folks but, you’ve already proven you ability to master them.
I've known two people with MS, a man and a woman. Both were in remission. The woman took no meds that she told me of (apart from cannabis), but she walked a little bit carefully and had the occasional (once or twice a year) attack. The man injected himself once a day like a diabetic and had no symptoms. ----------
Andrew. ----------------------------------------- Those who are tardy do not get fruit cup.
Sorry to hear of your health issues, I'll keep you in my thoughts, best wishes for good health. Just to keep in perspective, my wife is now 15 weeks in bed, not able to stand, she had surgery on her left foot--now her company has put her on FMLA, so no salary--she's the breadwinner. And then there's Buddha--is it better to go fast? Who can say. I do know that you at least have your music, and this experience will come back out in a song . . . Gary Lehmann
To answer Ant138, for the neurologist, she thinks that its a secondary progressive...But she said that there is no way to predict how each person's condition will progress, so she recognised the specific markers but can't really know what will be the evolution....I can have the symptoms, sometimes more than usual, but never been really handicapped by it...
If one day I've to walk with a walking stick or in a wheel chair I'll not cope at all that's for sure....
I think you can whip it Christelle. If M.S. was just a fool on the subway I think you could knock him down and hurt him... and I think you can beat this stuff in whatever other form it takes.
Keep on playing that sweet harp of yours and get with a doctor who doesn't have his head up his butt, I wish for everything good for you.
Christelle, I have several friends with MS, not to mention my own great uncle Kevin. I know what you're going through. Keep your chin up and fight that bitch MS. Keep blowing the harp, its strengthening to the soul. God bless you, and give you a speedy recovery. And if you should, in worst case scenario, need a cane or walking stick like my uncle does, just think of it the way he thinks of it.
"This? Oh. It's the shillelagh I'm gonna use to beat the blithering crap out of me ailments." ---------- Hawkeye Kane
I'm always impressed when someone gets real and tells us what is really going on with them. I honor your courage to reach out by letting us know what you are facing! I believe that is one of the most important things that we can do to help ourselves. The last 12 months has been horrific for my small family: Terrible car accident, stage 4 cancer, newborn with a severe birth defect, etc. However, we're getting through these things one day at a time. My good thoughts and prayers to you, young lady. Keep blowin' your horn! Jay ---------- Music speaks where words fail.
Cristal I would touch bases with Jimmy Gordon. He's had MS for several years. Jimmy is a legend in the harmonica world and would be someone that could relate to you about what he's gone through. He put out a CD compilation MS Blow to help raise money. http://www.spah.org/index.php/news/175-ms-blows-for-jimmy-gordon
---------- Emile "Diggs" D'Amico a Legend In His Own Mind How you doin'
Christelle, this is a nasty card you have been dealt. I know you have a lot of guts and determination to fight this thing, because you couldn't have learned to play the harp like you do without them. Give Jim Conway a call if you feel like it. Just last week he told me he wants to meet you because he admires your playing. I think you have his phone number. If not I can get it to you. Hope to see you on the streets again, or wherever. Cheers Eric
One of my best friends has MS. He's at stage 2 and carries on running his own business and lives life to the full.
There are many amazing people with this illness. One of the most motivating statements I ever heard was from Montel Williams. He said 'I have MS. MS doesn't have me'.
He maintains his condition with exercise.
God bless you lady. You're a rare talent. Be one of those amazing people.
It's unfortunate. Yes, it's even "Bad". But, it's not the "end".
I've known several people with MS. Every word of encouragement from those that have posted above me is true. This is one of those tough goings that require you to go tough. Diet, exercise, positive attitude etc. It does make a difference. You've never struck me as someone to roll up in a ball and accept it.
No message of pity here.
Yes, it sucks. Yes, it will make your life tougher. But, a tough life can be its own reward. Grab it and own it.
And remember during the low times that you've got friends everywhere if you want them.
Cristal, I hope you find strength and hope for the struggles ahead. It appears there is another person, inside of you, yet to be dicovered. I and a lot of others believe you will become this, as yet, undiscovered person. We believe in you and wait for your good report!
Please accept my heartfelt sympathies. M.S. is a very serious condition. The good news, is that people like myself go to work every day to work on treatments for M.S. and all sorts of other diseases.
It's very easy to demonize the pharmaceutical industry. On the corporate level, I have plenty of problems with mine, and other Wall-Street-driven firms. However, I can tell you with certainty, that most of the people actually doing the work, really care about bringing therapies to patients. I write this while inside the facility that manufactures Tysabri (one of the best M.S. treatments to date).
I'm actually working on Tysabri and Avonex, at this moment.
I know this is a daunting challenge, but there is hope. 15ys ago, there wasn't much a neurologist could do with M.S. patients (kind of like A.L.S. today). Now, there are several therapies that actually work, with some potentially awesome therapies only a few years away. (and more coming behind those)
The standard of care comes in the form of injectable beta-Interferon. I can only ever remember 2/3 of the trade names. Avonex, and Copaxone. They're essentially the same thing, different company. The good news here, is that we're working on ways to decrease the frequency of injections, decrease flu-like symptoms, and on all sorts of nifty devices to make self-injection more tolerable.
An oral M.S. drug just went on sale within the past year, called Gilenia (sp?) The side effects aren't great, from what I've seen. However, we (Biogen Idec) have a compound going into Phase 3, that just publicly reported really good numbers with fewer side effects. http://finance.yahoo.com/news/Biogen-Leads-MS-Drug-Wave-ibd-3567102615.html?x=0
Then there's Tysabri. There's a lot of press on this molecule. The bottom line is this: After Tysabri was pulled from the market for safety concerns, the M.S. community demanded it back. It works, but there are risks.
Speaking of the M.S. community, do get involved. There are many people worldwide who have a wealth of experience and support, but without an interest in selling you something.
Finally, on the subject of affording care, Biogen Idec has a building full of people working on specialized customer service. Their goal: help people find the right therapy and stay on the therapy. They help folks with insurance issues, finding doctors, finding assistance plans, setting up assistance from the company, etc.
Your doctors will be the experts. I'm just a development scientist. Just, do your research, explore you options, reach out for the help that's available, and by all means, do take care of yourself.
You have been dealt a nasty blow but can take heart in the knowledge that there are many with MS who lead seemingly full & productive lives. Of course it impacts differently with each person.
JUst hang in there, girl! ---------- Sincerely, Barbeque Bob Maglinte Boston, MA http://www.barbequebob.com CD available at http://www.cdbaby.com/cd/bbmaglinte
Christelle, I am so saddened to hear of your bad news. I hope you have access to good health care in Australia. Hopefully you aren't caught in a holding pattern with that most important aspect of life as you seem to be in other areas after your emigration. I am sending you Godspeed for a complete remission.
Oh, and Jim Conway too? Please tell me it ain't so! I know about Jimmie Gordon, but I had not heard of Jim Conway being stricken as well. What is it with virtuoso harmonica players and MS?
Stay healthy and on point, Christelle, we all know that you can if you set your mind to it!
Great song Christelle. Sorry to hear about the MS. I can only imagine how scary it must be for you. Take refuge in your friends and in your music and never give up hope. I've listened to your songs for a few years and will surely be listening for many years to come.
