New to the Forum and Scared
Posted 04 September 2007 - 02:46 AM
I'm 34 too and was diagnosed with limited scleroderma (initially) two years ago. At that time I didn't really take it all in until last year when things started to go downhill with a hypertensive renal crisis occurring (now diagnosed with systemic scleroderma).
Yep things are tough to start with, but you learn to love the little achievements you make with great passion. Determination my friend is the best thing you can have on your side. Determination and positive thinking gets you a very long way.
Like you I have two beautiful cats who are like my children. Don't know where I'd be without them.
I may not be a regular poster on this website, but whenever I do log on, you can always guarantee to get a smile from the posts. This forum is a wealth of information and you realize you are not alone. Doctors speak a lot of jargon which can be very confusing and frightening- this is a great place to sound out your thoughts and get a better understanding of what is going on.
Keep up your spirits.
Posted 04 September 2007 - 05:49 AM
I am so sorry for your diagnosis. I know your pain. When I was diagnosed, I was told that I had a 50% chance of being dead in 5 years because of my lung involvement. I have no advice for you other than you should talk to your doctors about having a stem cell transplant. Personally, I am partial to Northwestern's SCT program, but there is also the SCOT program. Or you can have it done outside of a clinical trial. In any event, I was approved for Northwestern's program (make sure you have a good heart) but I could not get insurance to cover the SCT as it is not considered a normal procedure but rather experimental (I have Blue Cross). In the meantime, I have been on the cyclophosphamide IV. I am not sure if it is working but at least it doesn't hurt to breathe. Best of luck. You will get through this. If I find that I cannot control the disease, I will opt to pay for the SCT out of pocket but right now I am on the fence hoping that something will slow the disease progression. Regards Gidget
Posted 04 September 2007 - 06:07 AM
One more thing, I lived in CT until recently. While I am sure that the Columbia doctors are experts, I do not recall there being a Sclero expert in NYC -- but I could be wrong. In any event, you will want a sclero expert to direct your local rhuematologist with regards to administering your day to day treatment. So when I was in CT, I went to Johns Hopkins for both the sclero expert and the pulmunologist. They directed my local rhuematologist with regards to what my treatment plan would be and at times we have made slight changes from the recommendation based on my wanting a more aggressive treatment. All my PFTs and BAL tests have been done at Hopkins. I have been very blessed to have great medical care. Now that I have moved to FL for the warmth, I have a local rheumatologist and a local primary care physician "just in case" I need local care as I still fly north to CT and Johns Hopkins. In any event, I am sure you will figure out what medical arrangement works best for you but somewhere you need to be connected with a sclero expert. Regards, Gidget
Posted 08 September 2007 - 04:57 PM
amazing responses everyone - and yes, I will ask the rhemy if he can confer/refer with a specialist in sclero......
I am having an esophagram I think its called, I am supposed to drink a chalk like substance wjich is the first step in diagnosing if there is any diffulculty swallowing.....
I dont know about you, but I would think that putting on 80lbs in eight months should be an open and shut case!!!
Thanks to each and every one of you.........my biggest battle right now is the depression more than the diasese....
Posted 08 September 2007 - 11:47 PM
I'm sorry you are having to deal with depression. Been there, done (and doing) that. I am also sorry your wife has left you at such a hard time in your life. I am also separated from my husband, my chioce however. I didn't need the extra stress he put me through.
It is hard being alone with this disease. I envy everyone who has caring supportive spouses. That's one of my greatest dreams, to have a kind, caring, suportive, team playing, committed, life partner. It would take away a lot of the stress and worry and bring comfort, a sense of security and some peace.
I started my own divorce support group and it has been a sucess. I have met a lot of warm, friendly, caring people, made some new friends and we've helped each other out a lot. Maybe you could find or start your own support group? I just reserved a room for free in our library, put an ad in the paper and posted fliers. If you're not up to it right now, maybe soon.
I'm thinking of ya,
Posted 09 September 2007 - 05:59 AM
Posted 09 September 2007 - 07:20 AM
today I did it!!!!!
i forced myself and my depression( since it won't go away, I invited it along!) to for a walk together in Prospect Park Brooklyn.......
15 minutes, beautiful and somewhat out of breath.........but I am glad I got out the bedroom that is slowly turning into a luxurious prison cell....
Did some healthy shopping - fruit and fish and was glad to get home though back on the oxygen.......
But a step in the right direction I believe......
Posted 09 September 2007 - 07:51 AM
Please let us know about your next walking excursion, which I imagine might be in another day or two?
There is hardly anything more uplifting and refreshing than fresh air and a pleasant stroll, is there? And, is there any reason you can't take your oxygen with you?
My husband wears his 24/7 (per doctor's orders) -- so you would hardly ever be able to catch him without it, and I love him all the more for taking such great care of his health. Oxygen is even more important during exercise, so please make sure your sats aren't falling too low when you are out.
May you have some increased moments of happiness, each and every day. We work very hard at increasing our happiness quotient all the time in our household, figuring that all of our idle time is up for grabs to be converted from blahs or fatigue into joy and pleasure, even if it is savoring a crisp apple or listening to a lovely symphony, writing a thank you note, doing some artwork, indulging a hobby, or escaping into a good book.
I know people think it is odd and counterintuitive, but I've found that welcoming everything (even pain, fatigue or depression) and then facing it head-on -- such as you inviting your depression to take a walk with you, which was a wonderful idea! -- bypasses some sort of block in the brain that helps us cope with the situation better.
So I no longer fight fatigue. Instead, I figure out how I can get the maximum enjoyment along with it! If I can't hardly move, well fine, then I can still listen to music or savor the silence. Or do my nails. Or take a nap. Or just sit on the patio. When I was bedridden for months on end, I made a list of 100 things I could do in bed. Not a single one relied on television, either, as I found through trial and error that tv increases my overall fatigue, instead of refreshing me as other activities do.
Oh, here I am writing a novel. All I really wanted to say is mucho kudos to you!
May you gradually make your own list of ways to increase your happiness quotient, while gladly welcoming depression (or fatigue or pain or whatever) to explore the new paths along with you.
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099
The most important thing in the world to know about scleroderma is sclero.org.
Posted 09 September 2007 - 11:41 AM
Hey James, I applaud you!!! That was a HUGE step today. You have inspired me, I'm going to get up after typing this and prune a few roses.
Thank you, and much love to you!
Posted 09 September 2007 - 01:31 PM
this wearing the oxygen round the clock thing is the question I will be putting to the rhemy on the 8th october - if he says yes - so be it.....
i dont respond to all the advice - I couldn't possibly find the time, but I am grateful for everyone who helps me feel worthwhile