A Big Thank You
AnonymousJune 4, 2007 at 4:45 pm
For those of you who dont know me yet. My name is Jenn and I was DX with CIDP about 3 months ago and im only 19. Ive been through a bunch of tests and have been treated with IVIG, Steroids, and now im on Lyrica for pain. Some people dont experience nerve pain with CIDP. But apparently, im the lucky one who gets all the bad side effects. However, im not writing to complain or talk about how unlucky I am. Because everyone on this site is unlucky. We all have some form of bad luck. Whether it be dealing with someone with CIDP or GBS. Or having it ourselves. I just wanted to say thank you to everyone on this site. To me, its like a second set of friends, and even a family. To our friends and family, its not understandable. Its so hard to explain what GBS and CIDP is, over and over again. Everyone wants to know, but you dont. You dont want to repeat it and re-live it over again. Its flat out, not fair. And there is nothing we can do. But being on this site makes us look at everything a little better. It shows us that we aren’t alone and it helps us deal with problems. I cannot explain how much certain people have stood out to me, and reached out to me. You know who you are, but dealing with this at such a young age is terrifying and you took the fear away a lot. I feel more comfortable with myself and I dont hate myself for being weak, or sore, or even useless. This disease should not happen to anyone, and I truly hope we can all continue to support one another and hopefully all of us can be treated and feel better. Its a long and drueling process, but if we all stick together….it makes it easier. A major thank you to everyone, for being my support. Im forever grateful. I hope I can help any of you, even just by talking. I know it helped me.
AnonymousJune 4, 2007 at 5:44 pm
Hi Jenn welcome to the forum. Have you registered with the Foundation and received their package? I am glad that you are getting treated with IVIG that is a miracle treatment for some. Also have your DR fill out the registration form for Muscular Dystrophy of Canada. They will send you information also.
Thank You for your email 🙂 I replied back.
June 4, 2007 at 9:48 pm
Welcome to the family!
AnonymousJune 4, 2007 at 11:26 pm
We do become a big family here and it helps you to know that you’re not alone. If you have not already done so, you could also join the UK site. Remember that you can email me anytime you want to.
June 5, 2007 at 6:55 am
Welcome Jenn! I’m with you on how great this site is. Whenever I’m cranky or feeling sorry for myself all I have to do is get on this site and it’s like an instant pick me up. It’s nice to have some where to go where there’s a sense of friendship and understanding. Kinda like having your very own cheerleaders. Life with CIDP is hard but the people here make it easier to deal with.
AnonymousJune 5, 2007 at 7:16 am
Welcome Jenn, as you say this site it’s a great one, and we are all here to help each other with our own experiences and feelings, we understand you and never get tired of listening you.
I agree with Sue, the IVIG treatment is a miracle, it allow us to be “normal” again.
Write as much as you want, we certanly answer you.
AnonymousJune 5, 2007 at 3:37 pm
Welcome, Jenn 🙂
This is a great family and you’re welcome to vent anytime you want — we all do at some point. I, too, struggle with chronic pain. I’m on lyrica right now and cymbalta — something new we’re trying. It’s great compared where I was when I first started but it’s so-so compared to where I am right now!:D
I try to take it one day at a time and enjoy each day. I don’t make many long term plans because I never know how I’ll feel. I also feel tired every day — I can’t seem to get enough sleep — I’ve been known to sleep 20 hours straight through!;) (when I get the chance!)
Welcome from all of us!
AnonymousJune 8, 2007 at 1:41 pm
I relate totally to your feelings of being able to express yourself here, like nowhere else. It is nonjudgmental here. No matter what kind of day I am having, I don’t have to turn on the filter here. When my father calls to check on me, he cries if he can tell I am in a lot of pain. So, often times, I fib so they don’t have to hurt like that. This is my safehouse. Everyone opens up to share the good, the bad, or the ugly of WTF is happening. No matter how good or bad my days are, I feel uplifted here because even people who are all torn up themselves that day reach out to give you some help. Paying it forward is what makes this forum a place I am glad to have.
Jenn, I hope you have as many friends that are grateful for you as I think you should. I know I am grateful for you. God bless.
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A Big Thank You
AnonymousJanuary 1, 2007 at 5:34 pm
I would like to introduce myself…my name is Frank Palazzolo.
I was diagnosed with GBS in April 2006. As a result of the disease, I was continuously confined to four hospitals over a six-month period. Throughout the ordeal, many of you gave advice, guidance and support to my sister, Rose–for that, I thank you all. It’s truly nothing short of a miracle that I lived to tell about it.
I’d like to provide you with an update on my condition…
I’ve been home since November 2, 2006 and have been doing fairly well. I’m continuing to see a neurologist and a wound care specialist (to deal with my pressure sore). I’ve been told that due to severe axonal damage, it might take several months or even a couple of years before I will be able to walk again.
I go to outpatient physical and occupational therapy twice a week. I have regained some strength and movement in my legs and can now lift my arms over my head. Also, I am able to use my right hand in a limited capacity to eat and pick up small objects. At this time, I am using voice-activated software, because I can only type with one finger.
Again, I thank you for all of the advice and support you provided to me (through my sister) over the past few months. If any of you have specific questions, please contact me through this site, and I’ll try to answer them as soon as possible. If I could assist anyone in any way, just ask and I will do my best to help.
AnonymousJanuary 1, 2007 at 6:11 pm
Hi Frank, welcome to the family. glad to see you are doing better. please get plenty of rest and give rose a big hug for me. if there is anything any of us can do to help you please let us know, ask questions, yell, talk or just vent-feel free. take care, and its good to see you here.:)
AnonymousJanuary 2, 2007 at 12:10 am
I hope you come here often to read the posts & to post again yourself. I had a severe case of CIDP, but I don’t know how I would have gotten through the first few years without the support & advice of the people here. You are still early on in your GBS, I would expect you to see a lot more healing. I believe that the majority of healing comes in the first two years after the illness has been arrested. I am just curious as to how the doctors can tell someone that they have axonal damage & then tell them that it will heal. It is really axonal damage to begin with, as I didn’t think the axon could regenerate?
AnonymousJanuary 2, 2007 at 8:52 am
My neurologist diagnosed axonal damage after looking at results of an EMG about two months ago. He said he believes my nerves have remyelinated–but axon reinervation(sp?) takes longer–approximately one inch per month. Maybe he’s just trying to give me some hope…
AnonymousJanuary 2, 2007 at 9:49 pm
Glad you voice activated so you can let us know your progress. I have axonal damage, dx 5/2005. Started driving up town and back today. Hands, feet, legs strong. Still can’t walk without assistance, but can now type with both hands and all fingers. I remember when I could only use index fingers. Keep up with pt and ot and when and if you can, add water walking. I do it 3x wk. I may even drive there tomorrow and have my husband assist me with walking to the gym. Have faith, it helps a lot.
AnonymousJanuary 2, 2007 at 10:23 pm
Happy New Year, Frank! Please give Rose my regards! She loves you so much and was so strong while you were in the hospital! You should feel very blessed to have a sister like her! It’s great to see you on here! So many of us were quite concerned about you!
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