AnonymousJanuary 9, 2009 at 8:01 am
I havent posted much news lately. I dont want to seem like I’m giving daily accounts.
I do have good news to report, however. I had my ivig, two doses over two days, 11 days ago. The first two days after, I had strength in my legs like I havent in a long time. For about 7 days, I was able to walk up my stairs at home without pulling myself up using the handrail. In fact, I wasnt using the rail at all.
I am back to holding the rail, mostly for balance. I think I’m fighting a bug and being back to work after two weeks off, I’m a bit tired. I”m sure this is part of it.
I use the cane when I go out only b/c I’m scared not to. I wonder if I could go without it. hmm.
I’d better wait…I’m not THAT good …..YET!
I went to my pain dr yesterday. I’ve said before, he’s an excellent dr and would love to find a cure for me . He does the grip strength test each time and yesterday was my strongest yet. I was double what I was a month ago. Indeed I’m still in the “poor” category…but there’s improvement.
He invited me to attend a workshop with him at our Med Center here later this month. It’s given by a professor in nuero science. I was shocked to see that there was something like that locally. It may be just for residents, drs, etc…he’s going to find out and let me know. He said he is going and I heard him cancel his afternoon appts for that day with the desk lady. I am his only CIDP patient. I was pleased that he asked me to go. He seems to have been doing alot of research regarding CIDP. When he first asked me to go, he said, “how much do you know about CIDP?” and I said, “alot, but I need to learn more”…and he said, “me, too”. I wish you all had a dr like him. He is super.
Overall, I feel pretty good. Getting ready to face some stressors with selling our old house. We are going to finish the final clean up work starting this weekend and get it on the market. (not the house we just moved into recently) It’s a nice house and SHOULD sell reasonably quick if we price it right. Scares me b/c the market is so crummy.
I have to be feeling well for all of this ! Hubby needs me.
I’m planning a trip to Myrtle Beach in a few mos with just my husband and then planning another trip a few mos after that for all of us-happy to have something to look forward to.
Oh…and how could I forget…I havent had the hand-on -fire burning in the middle of the night for many nights now ! My prayers were answered.
I’m going to watch my strength and see how I do. If I get alot weaker in the next week or so, I’m going to tell the neuro that I’d like to try IVIG every three weeks instead of four. No more slacking here. I see how it helped me this time…for the first time actually…I saw the difference.
stay well my friends and have a great weekend-
AnonymousJanuary 9, 2009 at 8:19 am
Hi Stacey! Ohh how I am so happy for you that you got on the IVIG’s. And I am glad that it’s starting to work and make you feel better. Will continue to pray that you keep improving so you can make that trip to Myrtle Beach and actually get a good swim going on! 😀
Sounds like 2009 is going to be a much better year for you. And I hope your house sells fast and easy. The market is being a stinker right now. But you never know. Somebody might be looking for a home in that area and it might be yours! Good luck Stacey! Glad things are finally looking up! Hugs
AnonymousJanuary 9, 2009 at 12:28 pm
You have the most special of doctors? A CURIOUS one! That alone is a gift in itself.
That you mite be able to educate other doctors, interns, nurses, PEOPLE about what this all does to us – on that key personal level is crucial to the whole awareness process, that could prevent someone being mis-diagnosed in the future!
I realize that this could be a huge extra effort for you, but I believe that you are more qualified and up to the task than many.
Hope and good things!
AnonymousJanuary 9, 2009 at 2:32 pm
I am sooo happy for you! How awesome to have a doctor that is willing to listen to you and work with you for helping you to be better! I’m so glad you finally have gotten the right dose of ivig and that the hand thing is better! YEAH!!!!
But now is where I slip on my mom hat and remind you to take it easy. Even with IVIG you can overdo it and wear yourself out. I’m speaking from experience here as I totally overdid it over the holidays and am feeling the repercussions. Take care of yourself. I know your hubby needs your help but most importantly he and the kids need you for the looooong haul!
Lots of hugs your way!
By the way, love your new photo! :p:D
AnonymousJanuary 10, 2009 at 12:48 am
Thanks for the update. You’ll know when you are ready to give up the cane. I was so afraid to give it up but finally the day came and now I havn’t used it for a long time. Enjoy your vacation time and pamper yourself a little.
take care and keep us posted.
AnonymousJanuary 10, 2009 at 3:37 pm
It is so good to hear you are taking such good care of yourself and doing well as a result. You have come such a long way and it really makes me happy to see. Continue the great work.
PS I hope your doctor is as cute as he is determined because I know you enjoy a little eye candy in the mix;);)
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