Long time since I’ve written
-
-
December 1, 2008 at 1:50 am
Hello All,
It has been many many months since I have written though I have been reading. Seems like many are doing better than when I first started posting. I have been quietly allowing my healing process to level out. This past April marked the year anniversary of starting Methotrexate and in May I began to feel stronger and less fatigued. Slowly I have gotten back to walking without AFO’s (unless I walk for long periods) and being less preoccupied with my symptoms. I find that I am expanding my interests and have decided to reinvent myself. I have replaced my lost career with my long lost love of painting and am now focusing my energy on creating. I am taking this time in my life as an opportunity and letting go of seeing myself as a “sick” person. So for the most part I am well. I still struggle with symptoms, weakness, fatigue, pain etc. but it is managable and last month when I saw my neuro, he concurred that I am at a stable point and perhaps will be able to get stronger. They still want me to hold off on going back to work or seeking another job, but encourage me to enjoy what I can and do what I can until my body says differently. So, even though I am not “cured” as there probably will be no cure, I can enjoy this reprieve. I am still challanged with Diabetes, cervical stenosis, Apnea and CIDP related limitations, but life is better. Just wanted to update. I am curious to know if any of you who attended the symposium heard any updates on the latest trial completed in Europe using Methotrexate for CIDP??? I can’t seem to find data but would love to know if anyone else is finding success. Any input would be great. Thanks for listening and for all of your continued courage and determination. I hope all continue to be well.
Linda -
December 1, 2008 at 8:02 am
Hi Linda ! I was so glad to see your post this morning. It sounds like things are going so well for you and your mindset is just where it needs to be. 😀
And, you’re walking without AFO’s…I am SO happy for you !
keep in touch…and take care.
Stacey
-
December 1, 2008 at 10:02 am
Linda,
It sounds like you are doing great! I am so happy for you. Glad to hear from you again.
Dawn Kevies mom -
December 1, 2008 at 6:23 pm
THERE you are! I’ve been wondering what you are doing! I’m so happy to hear you are reinventing yourself as an artist. Art can be therapeutic – I’ve got a number of “paintings” entitled “meningitis day 1″… “meningitis day 33” … and “so this is what double vision looks like” 😀 Glad to see you back, hopefully you will keep in touch this time. Sorry this is so short but I’m feeling crummy at the moment. 😮
Julie
-
December 1, 2008 at 9:24 pm
Hey Stacey, Dawn and Julie,
Thanks for your responses. I have missed each of you too. Stacey, I hope you are feeling a bit better from Thanksgiving. It sounds like you really hit the ground running! Dawn, I hope you and your boys are well. And Julie, I am so sorry you’re having one of “those” days. I think of you often. Maybe I will post my latest painting of my sweet dog Michelangelo. I am kinda proud of it. Stay in touch you guys. Be well.
Linda -
December 1, 2008 at 10:53 pm
Linda,
You have to post the painting of your dog. I would love to see it.
Dawn Kevies mom -
December 1, 2008 at 11:24 pm
So glad you are feeling better and loving life again!!! Thanks for letting us know your creative thoughts are flowing — we all need to hear about happy days 🙂 !!
-
December 2, 2008 at 12:49 am
Hi Linda! You keep up the positive and you will see yourself get better. I am glad you posted and did notice that you were not around. But am glad things are getting better! Time will heal all wounds! Old saying that at times can be true. You are a fighter and that is all that counts. You go girl!!!!:D
I’m feeling better except for that nasty Rituxan treatment. Better get offline! Seeing double wrting and need to get to bed but will be posting more tomorrow. Wishing you my best! Missed ya in here! Good luck!
Cyber Hugs!
Linda H -
December 2, 2008 at 5:44 pm
hi linda,
nice to see you back. enjoy your time painting and share with us when you can..we love to see people’s spirit.take care
-
December 2, 2008 at 11:25 pm
Hey you guys,
Glad to be able to share some positive for a change too. I have to try and figure out how to post pictures now. As soon as I do I will post my boy. Hang in everyone and continue to be well.
L -
December 3, 2008 at 9:10 am
Linda,
I am the most computer challenged person on earth and I was able to figure out photobucket, try going there and see what you can make of it!!
Dawn -
December 13, 2008 at 4:35 am
Hi noticed you were asking about the methotrexate study
[url]http://www.gbs-cidp.org/forums/showthread.php?p=72308&highlight=methotrexate#post72308[/url]it did slightly better than placebo – your results seem good though
Im nervous about taking it more than ever especially if the odds are low it will help at all. -
December 14, 2008 at 11:23 am
Hi Linda, your post really hit home when you said you were “no longer so preoccupied with your symptoms.” I have been there and done that. Wanting to go at least one day without thinking about every little ache, pain and related issues. That was a wonderful post that said it all.
I haven’t posted for quite a while either. Found out that what I thought was GBS residuals were yet another odd medical mystery-Chiari 1 Malformation. The symptoms were so similar that the Chiari had been missed.
Long story-short- I had brain surgery in October and with therapy, things are starting to turn around. I’d love to get back to my job, as you mentioned you would, but after reading your post, I think I’ll look at alternative options instead of dwelling on the inevitable.
Thanks again for your words of wisdom.
I hope good things continue to come your way.
-
