I’m back

    • Anonymous
      February 24, 2010 at 8:56 pm

      [SIZE=”5″]In case you miss post from another thread, here it is:
      [SIZE=”5″]Stay away from Hopskins!!!! They dam near killed me !!!! I came out worse than when I went in. I had the CIDP take over my body & became paralized in front of 3 docs & 4 students. They had no idea what to do. My poor mother was begging them to do something but they froze. They stopped my prednisone cold turkey . I was able to say prednisone before I went out & 1 doc heard me. They gave 50 mgs. & I was up in 3 hours. They were clueless. They made a diabetic with a treatment. Never warned of effects. 4 months later, I’m still fighting the sugar. Then they put me Immuran, I got 14 of the 18 severe side effects. I stopped it 3 months ago after I collaped. I’m considering a law suit against them.
      I’m now with a doctor in Neptune. He’s also the head of the stroke dept. at Jersey Shore M.C. I’m very happy with him.He’s very familar with CIDP. His name is Dr. Steven Martino.
      I haven’t been here because I got so bad, I didn’t want to bring everyone down. The CIDP is underv control, its the effects from the meds I’m recovering from. I’m back in therapy. Out of the wheelchair & back in a walker. I’m recovering faster than this time.[/SIZE] [/SIZE]

    • Anonymous
      February 24, 2010 at 10:19 pm

      Don’t ever feel like you have to stay away to avoid bringing anyone here down. We are here to support each other!

      I’m sorry you had such a hard time but I’m glad you are getting better & have found a dr you are confident in. A good dr makes all the difference!

      Kelly

    • Anonymous
      February 25, 2010 at 6:55 am

      Welcome back Mike,
      So sorry you had to go through that. Keep up the brave work.
      Linda

    • February 25, 2010 at 7:13 am

      Mike,

      I’m with Kelly and Linda … so glad you’re back and recovering. The meds are horrible for some of us. Glad you found a doc you feel is on your side.

      Gary

    • February 25, 2010 at 8:59 am

      Hi Mike!
      Wow, you have been through alot! Glad you are back and as Kelly said, just because you are down and out or just have bad news to share, it doesn’t mean you should stay away. I think supporting each other is the biggest part of this forum. People on the outside don’t understand the trials and tribulations of cidp/gbs, but the people here do and can always offer help and kind words. So keep us posted no matter what the news!

    • Anonymous
      February 25, 2010 at 10:22 am

      [I]Wow! Hopkins used to be the be-all and end-all of neuro work. And they turned out some very sharp neurologists. My neuro is one of them and she is sharp, she listens, she discusses options thoroughly and doesn’t ‘talk down’ to me. I hope your new neuro is much more like her than what you had to put up with at the hospital.

      Rocky[/I]

    • Anonymous
      February 25, 2010 at 8:43 pm

      I don’t know how else to put it…did you GET COPIES of test results etc as to what went on, before, during and after treatments at Hopkins?
      And why didn’t you work your way up the medical food chain as in such similar facilities in NYC?
      There must be more to your issues than are what you present and what seems to be known by us.
      Do you mean…you’d not had any sort of Glucose tolerance test prior to being infused w/a Glucose based immunoglobulin? This kind of testing is #101-102! Especially for receiving IVIG! Something was ‘missed’ somewhere down the line is my HO? And, paralysis isn’t anyone’s idea of fun?
      Glad you found a doc tho! THAT is what counts, and that you mite get better treatments because of it all. I’m flummered that a Hopkins doc would goof up so much so… can you tell me which doc? If reluctant, understand please pm me so’s I know… I’m progressing beyond the standard diagnostic stages and still progressing so I’d like to know if I can stand a trip to NYC and if it’s even worth it.
      Hang in there, some help is on the way? For the rest? PT and good medical guidance should get you on the road to ‘stability’ if nothing worse. And the latter is my hope! Keep strong and keep faith in yourself! You KNOW things are wrong, keep asking questions! You’d be surprised what you mite find out! Scary and good to it all.

    • February 25, 2010 at 9:06 pm

      Hi Mike,
      I’m glad you are recovering and have found a good doctor. You went through a nightmare and I can only hope and pray that you will get better and better.
      Thank you for sharing. We all need each other.

    • Anonymous
      February 26, 2010 at 10:43 am

      [QUOTE=homeagain]I don’t know how else to put it…did you GET COPIES of test results etc as to what went on, before, during and after treatments at Hopkins?
      And why didn’t you work your way up the medical food chain as in such similar facilities in NYC?
      There must be more to your issues than are what you present and what seems to be known by us.
      Do you mean…you’d not had any sort of Glucose tolerance test prior to being infused w/a Glucose based immunoglobulin? This kind of testing is #101-102! Especially for receiving IVIG! Something was ‘missed’ somewhere down the line is my HO? And, paralysis isn’t anyone’s idea of fun?
      Glad you found a doc tho! THAT is what counts, and that you mite get better treatments because of it all. I’m flummered that a Hopkins doc would goof up so much so… can you tell me which doc? If reluctant, understand please pm me so’s I know… I’m progressing beyond the standard diagnostic stages and still progressing so I’d like to know if I can stand a trip to NYC and if it’s even worth it.
      Hang in there, some help is on the way? For the rest? PT and good medical guidance should get you on the road to ‘stability’ if nothing worse. And the latter is my hope! Keep strong and keep faith in yourself! You KNOW things are wrong, keep asking questions! You’d be surprised what you mite find out! Scary and good to it all.[/QUOTE]

      I went in there with a sugar level of 78. After the treatment 502. Discharged 357. Yesterday was only the 2nd time since Nov 7th, that I didn’t need insulin.
      As far as NYC goes, I was at Columbia for 4 years with Dr Clifton Gooch. He went to Fla. I believe he now has an affiliation here. I hope he reads this & gets back to me. With him I was on the right track.
      There was a doc at Hopskins that was suppose to be my guy, he only showed once. The ones that did,like I said earlier were inturnes & students. I was their experiment beause I arrived so bad.

    • February 26, 2010 at 10:58 am

      If this doc should wean you off prednisone, your diabetic reaction should get better. You do not mention taking ivig, did you? If so, certain ivig DOES have sugar in it as a stabalizer. I bring it up for two reasons, one, IF you get regular blood work done and it is after an infussion w/one of these ivig brands, I think octagam has maltose for instance. you cannot look at the glucose insulin levels as so. The test has to be glucose specific or something, I can’t remember. But inessence it is addressing the maltose issue. This is important because people are WRONGLY given insulin because it APPEARS that they are diabetic and when wrongly given those amounts of insulin they can die or have renal failure. As well, if the prednisone alone has indeed induced diabetes, you have to be sure to demand to know what type of ivig they use, if in fact they decide to go that route, because people with diabetes CANNOT use ivig with a sugar stabalizer. I believe gammaguard DOES NOT have any sugar component, but check.
      Good luck, keep us psoted

    • Anonymous
      February 27, 2010 at 1:15 pm

      [SIZE=”4″]Because of me, they(Columbia) found out there are different strands of CIDP. The IVIG( 5 treatments, 5 different times) made my strand more aggresive. It made the immune system go stronger & attack my my body even more. It also caused blood clots in my legs that ended up in my lungs. Which is why I now have a Greenfield filter & will be taking rat poison for rest of my life.
      They didn’t ween me off the prednisone, they just stopped it. Thinking the Immuran would just take over. Again,I was an experiment. I know I should’ve been weened off. Prednisone is, so far, the only thing that works for me. I get a certain brand of steroids from Roxanne Labs. Its the only steroid that works & its a vegetable base not a sugar base.
      While there(Hopskins), I did get 5 blood exchanges. It had no possitive effect.
      As far as the sugar goes, one of my doc had a treatment of this high powered steroid. He had only 500mgs. It took him 2 months to get back to normal. I got 3000 mgs. on Nov. 5th-7th. Do the math. My numbers have been coming down. Its frustrating not being able to eat what I want. It was the only thing I had to look forward to everyday.
      Right now I’m coming back from what Immuran did to me. Of 18 servere side effects, I had 14. Even though I stopped that cold turkey on my own, The side effects remain for several months. They wanted me to stay on them. Again, I was an experiment. I collapsed on Dec.20th. That’s when I stopped it. That’s also when I started to recover. I’m back in therapy,out of the wheelchair & using a walker again. I’m regaining my muscles, which I lost. My legs took the biggest hit. Everything has improved since I took matters into my own hands. Along, now with my new doctor, I’ll be continuing to improve & will be back to where I was last year. I’m also sure I”ll be ever better than that soon.
      My CIDP is down in feet. [/SIZE]

    • Anonymous
      March 4, 2010 at 11:51 pm

      Oy gevalt, what a nightmare! I’m glad you made it through, and now have a better doctor.

      I’m also one of those people that needs steroids. I’ll be on them for life. Luckily for me, immuran wasn’t an option when I first got sick because I was pre-menopausal. I have a great doc at Columbia now, Dr. James K. Roberts, and he’s very conservative in his treatments.

      It’s amazing how quickly the recovery can be. Within a year of a major relapse I was running (slowly) again. Best of luck!

      -marie

    • Anonymous
      March 5, 2010 at 5:34 am

      I am so sorry to hear about your experience with Hopkins. My experience has been generally positive though I agree that being at a teaching hospital has it’s disadvantages – namely you are a guinea pig. I think because I’m not at the main site, I’m at the Bay View site, I don’t get exposed to as many students. I’ve seen only 3 in my 4 years there and while one of them completely botched a lumbar puncture that’s my only negative experience.

      I am glad to hear that you are now on the road to recovery. It’s a caution all of us would be well to remember -sometimes you go to the fountain of knowledge only to find it’s just a trickle and slightly stale at that.

    • Anonymous
      March 5, 2010 at 11:04 am

      [SIZE=”4″]Julie, I too was at Bayview. Mom stayed with me. But she had to stay over at the Best Western. At Columbia, they have a floor dedicated to acommadate out of town family members & it was under $90.00 a night. She didn’t need it then of course, my APT is only 20 mins. away in Jersey.I was there(Hopkins) for 16 days. The math adds up to even more expense. Hotel, food taxis(when the van stopped) , plus a couple $$$$’s here & there. Now they want me to pay extra for experience. HAH![/SIZE]

I’m Back!

    • Anonymous
      October 23, 2008 at 8:25 pm

      Hello old friends and new. It has been a long time since my last post. I have had the table turned on me and have been a caregiver for the last 18 months.

      Now that I have time to breath and post again just wanted to check in and say hi. Jerimy and I have been in contact and he has kept me up on the forums.

      Please let me know how your all doing.

      It is nice to be back. Hope to see some of you at the symposium.

    • October 23, 2008 at 9:34 pm

      Hi Kassandra!
      Nice to hear from you again. How is your family doing (caregiver situation) When we last spoke, you had just received the news of the dx. So I guess we have not spoke for some time. I am glad to hear you will be attending the symposium. I would like to meet you and hug you for the help you gave me in Kevie’s early days. Have a great night!
      Dawn Kevies mom

    • Anonymous
      October 23, 2008 at 9:52 pm

      Hi Kass,
      I guess I’m one of the few remaining oldies that’s still here. We’ll be meeting for the second time at the symposium. Our family has grown and our arms are always open when someone wants to return.

    • Anonymous
      October 23, 2008 at 10:40 pm

      Hi Kass! Welcome Back!!:) Hope Everyone and Everything is going better for you! Don’t be a stranger!:D

    • Anonymous
      October 23, 2008 at 11:43 pm

      Hi Kathy,
      Hope things are going better..Take time to breathe and look forward to seeeing you at the symposium.

    • Anonymous
      October 23, 2008 at 11:50 pm

      Hey Kassandra:

      Glad to see another oldtimer back. I wondered what happened to you.

      Lee

    • Anonymous
      October 24, 2008 at 12:16 am

      Can’t wait to guy’s too. Glad to see your still here Lee, racking up the posts. Keep up the good work.

      Dawn, it will be nice to put a face with all those hours of phone calls.

      Hey Sherry you tipping a few tonight? It’s Candy, but only Kass with the foundation 😀

    • Anonymous
      October 24, 2008 at 11:18 pm

      lol..that’s so funny, I was talking to my sister in law kathy at the time and typed her name instead of yours…lol. sorry. I’m definitely not good at multi tasking 😀 Anyway, Can’;t wait to see you in chicago. I’m sharing a room with liz so look for the wild woman pushing the other one in the wheel chair..we might even be in our jammies..;)

    • Anonymous
      October 26, 2008 at 1:14 am

      Kassandra ~ it’s [U]really good[/U] to have you back! Sorry that the past few months have been tough. I look forward to hearing more of your wisdom 🙂 Hugs.

    • Anonymous
      October 26, 2008 at 11:52 am

      [B]Hi Kass,

      So glad to see you back. I have missed talking to you. Hope you are taking care of yourself. 🙂 [/B]

    • Anonymous
      October 27, 2008 at 6:35 pm

      Judi & Donna, it’s great to back, thank you.

      Donna, honoring our friends that we have lost is wonderful. I would expect nothing less from you. I did know when they passed away and contacted their families. You know how much they all 3 ment to me. Gene and I have been friends for over a decade. He died within days of my mom. We all have angels watching over us now.

    • Anonymous
      October 27, 2008 at 7:53 pm

      [B]Hi Kass,

      Gene truly was a great friend to us. We use to walk down memory lane way back in the day about high school and all the same people we knew back then. I am sure all of our angels who have passed are watching out for all of us. Those 4 wonderful people gave such meaning to my life over the years.
      Donna Lee, and Marge were my angels when they were here with us, they got me through alot after Frank passed and I will never forget that or them, still miss them all so very much

      I am so sorry about your Mom. I’ll keep her in my prayers.

      Love Ya Kass. [/B]

    • Anonymous
      October 27, 2008 at 9:31 pm

      Hi Kassandra! I don’t think we have met but it’s a pleasure meeting you! Glad to see you are back posting! Sorry to hear about your mother! Hugs
      Linda H

    • Anonymous
      October 28, 2008 at 11:05 am

      Donna, Luv u 2. I have enjoyed your e-mails and have shared them with many. thanks

      Linda, It is nice to meet you too.

    • Anonymous
      October 28, 2008 at 10:18 pm

      [FONT=Georgia]Hello Kassandra: I don’t think I’ve ever met you on here, I’ve been around for awhile. I to was a careprovider for my late wife Debra who was disabled by GBS, I’m just curious as to what kind of challenges you ran into as a careprovider. I found myself faced with one challenge after another & how much this changed your life. But I just wanted more or less to say Hello & Welcome Back ! 😉 [/FONT]

    • Anonymous
      October 29, 2008 at 11:31 am

      Hi Terry,

      Nice meeting you. I’m sorry about Debra.

      My caregiving started 20 months ago when my son’s fiance came down with stage 3 breast cancer. It was like second nature since myself, mom, grandmother and a cousin had all gone through this. She has a 4 & 8 year old daughters who my son was adopting and I took care of them as much as their mom and the home. After 10 months of surgeries, radiation and chemo she was declared cancer free and still is today.

      A week later I flew to Fl for a vacation. As soon as I saw my mom I knew something was terribly wrong. 3 days later the dx was stage 4 lung cancer and they gave her 2-6 months.

      My father was deaf and him trying to handle all that was to come was to much, so I stayed for the most part of the next 6 months. I took care of everthing. As a caregiver yourself you know what that all entails.

      My husband was wonderful and I had many friends in Fl offer to help. My GBS family were there for me reminding me of all we have been taught. I knew this was the time to ‘pay’ mom back for her taking care of me, my husband and my one week old baby when GBS hit me 27 years ago.

      When I started this I had already been teaching patients and caregivers of GBS/CIDP how to handle the problems physically and emotionaly for 12 years.
      My training came through the foundation and many people here on the forums. I knew exactly what to do. But could never predict the emotional toll it took on me. I’m doing fine now.

      Three weeks before mom passed away my son’s fiance broke it off. She thought of him more as a ‘caregiver’ than a future husband. I had given him the caregivers handbook when this all started and talked to him about this might happen, but it was still heartbreaking. Adopting the girls was off. This hurt most of all. I was grandma for 2 years. Their mom lets us see them and take them whenever we want so I have not broke down:(

      There is good news at the end of all this. My dad had a cochlear implant a month ago. He already has 65% of his hearing back, after 64 years! He can listen to tv, radio, and doing better in a room with more that 2 people talking.
      He said he wished mom could be here to see this and I said she never left.

I’m Back

    • Anonymous
      May 20, 2007 at 1:26 am

      It has been a while, but I have stopped in from to time. I’m a tad bent, the Dr.’s are tellen me that after 1 year this is as good as it will get. Well, I just cant take that. There has to be more. I am returning to acupunture this week, and I REFUSE TO GIVE UP.
      I do have to say, I have come a long way, but I just dont feel done. I feel vary blessed that my ball and chain has stood by my this past year. I have my sex drive back!!!!!!!!!! Da poor guy, I dont want to hurt him. I am cleaning, cooking, and even painting, my hands were done for a few days, but I did get the deck done.
      I am soooooooooooooo looken forward to going fishen this weekend. I’m not sure if I can hold on to the pole, but I’m going in that boat if it kills me. I dropped over 120pds, and I havent used my walker in 3 weeks!!!!! My parents are still skopen on it, like are ya done with that yet??????????
      my mom is 63 years old, and a little polish person, 5′ tall and cranks AC/DC dirty deeds, its just a bit much. I was looking for more treatment ideas(that dont include oriphis’s) LOL. I live in WI, and need other places for help. please feel free to e-mail me at netski@charter.net or phone 715-726-8746, please keep in mind the time zones. Thanks all. Net

    • Anonymous
      May 20, 2007 at 4:50 am

      Hey Net!!

      Nice to see ya back 🙂
      You sound like you have a great attitude, and that is sooooooo necessary with this GBS we have, isn’t it???<>G
      Anyway, good to hear from you again…………………..and best of luck to you!!!

      Perry
      (the Texas Tech Red Raider!)

    • Anonymous
      May 20, 2007 at 8:16 am

      Net,
      Good to have you back. Never give up keep working at finding a solution. Much success on your fishing trip. Let us know how you are doing from time to time.

    • Anonymous
      May 20, 2007 at 9:57 pm

      net,

      docs often use 6 mo, 1 yr, or 2 yr, depending on the doc doing the talking, as the limit to nerve recovery. this is a myth. i am near 8 yrs post gbs & still make progress. never give in. never give in. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      May 20, 2007 at 11:20 pm

      Like Gene, I feel it is too early for your doctors to say you are done healing. I didn’t even start to get the recovery of my hands back until 2 1/2 years post, & now can do anything I want with them (well, don’t ask me to sew by hand anymore.) But you should be able to fish, use rod holders to hold your rod in place so that they don’t get unnecessarily tired before you need to reel one in. It is great you don’t even need the walker anymore as well. BTW we are neighbors, as I live in MN! We have our two boats out of storage, but haven’t even been up to the cabin yet. Can you believe we got some snow last night? All of my pation furniture was covered with snow this morning…

    • Anonymous
      May 21, 2007 at 8:55 am

      ‘Ski, That is great news that you don’t have to use the walker anymore. share your weight loss secrets with me, Please!!! Like everyone is saying, don’t give up the hope of recovery, it will come. there are ways around everything if you can’t get it the first time. the drs only have very limited information on this gbs/cidp stuff, don’t go by what you are told. especially when there are living proof all around to the contrary. last year i couldn’t go fishing, i wanted to really bad. i’ve gone a number of times this year. it is possible, if you ask for help when you need it. my sister lives in Athens, WI, her husband goes out all the time and brings home fish almost every time he goes. Hope you were able to catch your limits this past weekend. take care.

    • Anonymous
      August 23, 2007 at 12:12 am

      Hi all,
      Doing better. Got a JOB at home. Whent fishen, out fished da ball and chain, and it was too fun, I even put my own bait on!!!!!!!!!!!!!
      I WILL NEVER QUIT, or give up, no matter how many white coats I have to see.
      Diet is a BIG PART of me recovering, stay away from ALL FRIED FOODS. Eat healthy, I am still droppen pounds, just not as fast. I have 35 Pounds to go to target weight.
      I dropped over 130pds in 9 months.
      Buyen new cloth’s SUCKS, I hate shoppen. I know that is kind of wrong for a gal, just not my thang.
      The DVR has helped me get a job, working from home. If anyone in WI needs help, PLEASE FEEL FREE TO CALL ME, 715-726-8746 after 10AM. I’m not a morning person, LOL. Not after this. Thanks every one for your support, you have NO IDEA, how this has helped me to push on.
      Net

    • Anonymous
      August 23, 2007 at 12:44 am

      net, you sound like you have made a huge recovery in alot of ways. i also need the diet secrets. you didnt say how long you tried the acupunture. i have been getting it for four or five months now and i am seeing progress from it. she said it may take six months to a year as i was post gbs about two years when i started. i tried giving up on it but she would not give up on me and now i am really glad. i especially dont seem as tired but that may be from other things helping too. good luck and maybe try it again. barbara

    • Anonymous
      August 23, 2007 at 11:16 am

      Net,

      I’m so glad you sound so upbeat and positive! I loath shopping, and Im finding out more and more women feel the same way, which surprises me, so dont get down on yourself. Good for you on the weightloss! Keep on keeping on 😀

I’m back!

    • Anonymous
      October 18, 2006 at 2:10 pm

      Just got back from cardio pulmonary rehab. Will post later in the day. In the meantime, many thanks for the lovely email messages.

      Special thanks, of course, to my sister and friend, Brandy.

      Cheers,
      Marge

    • Anonymous
      October 18, 2006 at 9:58 pm

      Doctors have given me a clear diagnosis of pulmonary hypertension which includes all my respiratory problems (asthma, copd, emphesyma, gbs including one year of paralysis, allergies, exacerbated by 35+ years of smoking two packs a day though I did quit smoking 16 years ago), a highly stressful life and work history and resulting heart problems.

      There is some good news associated with this dx. An extensive exercise problem will help and I have just spent three weeks in Rusk Institute’s Cardio Pulmonary Rehab unit with good results. I return next week for out-patient treatment.

      Will return tomorrow with meat loaf diagnosis story.

      Cheers,
      Marge

    • Anonymous
      October 19, 2006 at 12:46 am

      [COLOR=darkorange]Welcome Home Marge!!! We Have Missed You!!!:) [/COLOR]

    • Anonymous
      October 19, 2006 at 9:01 am

      Welcome back Marge, I (we) missed you.

      Jerimy

    • Anonymous
      October 19, 2006 at 12:28 pm

      Hey Marge,

      Glad to see you back and on the road to recovery. Wonder if we could have a group exercise session :confused: Looking forward to hearing all the gorey details!

    • Anonymous
      October 19, 2006 at 12:29 pm

      Welcome back!

    • Anonymous
      October 19, 2006 at 12:50 pm

      😀 Glad to be back.

      True story: Rehab doctor came into my room to see if there have been any changes in GBS resids since my last examination. He forgot his cute little piercing device and looked for a quick substitute. He honed in on my plastic fork from lunch and ran in it up and down my legs. So, plastic fork with a slight bit of turkey/tofu/cheddar meatloaf (recipe not available but will be high point of any future dinner party) determined my gbs resids had not changed.

      Cheers,
      Marge

    • Anonymous
      October 19, 2006 at 3:56 pm

      is that the old saying in medical terms marge?–the fastest way to a patients nerves is thru her stomach?!
      i would have asked him for another bite of meatloaf after he finished the test!!!:D 😮
      hope you continue to recover quickly marge, remember not to over do it and get plenty of rest!:)

    • Anonymous
      October 19, 2006 at 5:48 pm

      Okay, Turkey, tofu and Cheddar notwithstanding…It is great to have you back and many heartfelt wishes for greater recovery!!!! Next time throw the meatloaf at him as your indication of STRENGTH!

    • Anonymous
      October 19, 2006 at 9:24 pm

      Marge,

      Was the doctor cute, or just his device? I hope you’re getting the best treatment possible over there. Try not to give ’em too much hell. I thought of you the other night when they showed the naked cowboy on the Discovery Health Channel. He was on a show called “The Anatomy of Sex,” if only for a mere second.

      Love,

      Shannon

    • Anonymous
      October 20, 2006 at 9:11 am

      Welcome Back Marge, We are very happy to have you back and look forward to you telling all about you event. You have received some advice all ready. As for me I think I will make it through the whole day!

    • Anonymous
      October 20, 2006 at 11:39 am

      Welcome back……I’d buy you a scotch just as soon as you doc says it’s okay 😉

    • Anonymous
      October 20, 2006 at 9:03 pm

      😀 A scotch sounds good but, alas, I am not permitted to drink hard liquor. However, my hair is newly blonded and I’m revving up.

      Regards,
      Marge

    • Anonymous
      October 21, 2006 at 9:57 pm

      My Sister is back and I am so happy. Marge had to endure my nightly stories of craziness and all of the snafus of planning this wedding that finally got off the ground yesterday at 5pm.

      [B]Welcome Home Sis, it’s good to have you back.:) [/B]

    • Anonymous
      October 22, 2006 at 9:53 am

      Warning! Warning!

      Thelma and Louise are back!

    • Anonymous
      October 22, 2006 at 1:17 pm

      Louise, I am ready to do damage. Let’s get this show on the road.:D

      What can we do to get into trouble? 😀

      Love Thelma

    • Anonymous
      October 22, 2006 at 3:51 pm

      Jerimy,

      Gird your loins and open the champagne!

      Regards,
      Marge

    • Anonymous
      October 22, 2006 at 7:27 pm

      Consider my loins girded and the bubbly flowing 🙂

    • Anonymous
      October 26, 2006 at 3:34 pm

      It has been an extremely difficult week, including problems with oxygen machinery, exhaustion, changes in pension-payment rules, delivery people who den’t deliver and so forth.

      I came to a crashing halt today and am trying to pull it together. Sometimes it is really difficult to be independent but my life experience gave me no other choice.

      Please forgive the whining but this is the best place to do it. I’ll pull myself up and start up all over again…just not today.

      Love,
      Marge

    • Anonymous
      October 26, 2006 at 3:52 pm

      So sorry about your bad week…..hang in there, I’ll still keep praying for you and thinking happy thoughts (even though clouded by 12 year old scotch) 😮

    • Anonymous
      October 26, 2006 at 3:52 pm

      I totally understand. Some days are harder than others and no matter how positive a person is it just gets too tough it seems. I am having a bad day today as well back at work. I really dont think I am ready to be back at work but money and risk of losing my job has forced that and I am not going to lose my house over this GBS.

      On Tuesday I increased my Neurontin… Wed I started work at 7:00am and worked for 4 hours, then had my dad bring me to my neuro appiontment followed by lunch and then rehab. After rehab we went to the bookstore and to pickup more perscriptions and then back home. Once I got home I made dinner for my dad, after he left I had to put in 2 more hours of work by which time it was almost 10:00pm. I had to shower, etc and was not in bed till almost midnight. Now today I am REALLY paying for it. This is the worst fatigue I have had the day after something and I have to put in 8 hrs of work today and go to rehab tonight.

      Sorry, just had to get a little out of my system too. Hope it helps to know that you are not alone. I am normally very positive but some days its really tough to be.

    • Anonymous
      October 26, 2006 at 5:46 pm

      Marge ~ welcome back!! I was visiting my son and family in Maine when you returned. And yes, I did wave out the window at you 😀 Did you get any pics for next years calendar?? I’m sorry that things are more difficult at the moment. Just remember that you are in good company 🙂 Hugs

    • Anonymous
      October 28, 2006 at 2:32 pm

      A positive day yesterday.

      One of my friends is married to a techie. Last night he put together the bi-pap machine and taught me how to reload the portable oxygen tanks I now have to use when leaving the house.*

      I HAD THE BEST NIGHT SLEEP IN 20 YEARS LAST NIGHT. The bi-pap enabled me to sleep without the horrific side effects of sleep apnea, which stop the patient from breathing many times during the night. I used one in the hospital but a series of missteps by me, the vendor and my doorman left me without a properly working machine for over a week. As we all know, sleep deprivation exacerbates all our other medical problems.

      Using the portable oxygen tank will greatly increase my mobility and I will be returning to school this week.

      Hooray!

      Regards,
      Marge

      *The vendor who rents the equipment to my insurance company is under contract to the hospital. Their instructions are incomplete and confusing, particularly to a very nervous patient like me.

    • Anonymous
      October 28, 2006 at 2:47 pm

      Marge I am so glad to hear that you are able to sleep better now 🙂

    • Anonymous
      October 30, 2006 at 10:52 am

      Thats great news about getting that machine hooked up. My boyfriend doesnt have sleep apneia but he does have snoring issues, the bi-pap is the only thing to get him to stop snoring and he refuses to use it because he says that his throat gets sore. He isnt a candidate for surgery for the snoring so as great as he has been with my GBS he would apparently rather keep me up all night with his snoring than deal with a sore throat 😡

      Sorry had to vent a sec there… anyways, where I was starting to go there was that I know from watching him and from my own experience how great those machines can be so thats awsome news that you got one!

    • Anonymous
      October 30, 2006 at 3:46 pm

      those machines are wonderful-especially for those of us who want to sleep but can’t due to other half not sleeping quietly. my husband will be having the surgery the first week in dec because of his sleep apnea, snoring and other nasal problems. he use to take antidepressants until we could no longer afford them (not my choice to stop them) and he use to use his machine so i could sleep—he is really bad and loud and on top of that he has restless legs syndrome. not my idea of a fun night. i am looking forward to his surgery-can’t wait to get some sleep and not have him kicking, snoring and laying around all the time. now if i can only get a machine for my dog at the same time!:)

    • Anonymous
      October 30, 2006 at 3:56 pm

      Another problem with the machines yesterday. I am a klutz and have known even before GBS, to trip over nothing in an empty room. I tangled myself in the wires and mask flew into my face, giving me a black eye.

      One of my girlfriends came over, calmed me down (easier said than done), cleaned the bathroom because I had gotten sick. Her husband the techie fixed the machine again.

      THE VENDOR FINALLY SENT THEIR OWN RESPIRATORY THERAPIST. HE IS WONDERFUL. THE MASK WAS TOO BIG; HE BROUGHT A NEW ONE ONE AND I THINK WE MAY HAVE RESOLVED ALL THE PROBLEMS. LIKE CLOTHES, MASKS ARE NOT ONE SIZE FITS ALL!

      Will report tomorrow.

      Cheers,
      Marge

I’m Back!

    • Anonymous
      June 6, 2006 at 1:34 pm

      Hey guys. I know I’ve been away for awhile. I had to go back into the hospital several times with pneumonia, I also had to have a permanent tracheotomy. I’m slowly doing better though. It’s good to be back with friends!

      Jim

    • Anonymous
      June 6, 2006 at 2:08 pm

      Glad to have you back Jim. Now we can also have your input for any newbies who join and need some help with questions about themselves or for their families. It’s so important to have vets of GBS/CIDP answer their questions, so they know they are not alone. 🙂 🙂 🙂 🙂

    • Anonymous
      June 6, 2006 at 2:11 pm

      Glad to see you back Jim and good to hear that your doing better. Take care of yourself.

      Jerimy

    • Anonymous
      June 6, 2006 at 3:21 pm

      Dear Jim:

      It’s good to have you back with us. Sorry to hear you are having continuing health problems. Jim, please take good care of yourself.

      Lee

    • Anonymous
      June 7, 2006 at 5:53 am

      Glad you’re back, Jim. You’re a fighter and a heck of an example for newbies. And a warm, caring friend.

      Cheers,
      Marge

I’m back

    • Anonymous
      May 6, 2006 at 8:17 pm

      Hi Everyone:

      I’ve missed reading this site. It looks like we have had some changes since I’ve posted the past several months. I’m still dealing with the daily residuals of GBS and hoping for more recovery. The fatigue seems a little better although I still nap everyday. I’m substitute teaching two days a week, sometimes three. It seems to be going well. I even challenged myself to teach math and I was able to do that without my brain going crazy. I look forward to reading everyone’s posts again. I still deal with numbing and tingling in my feet and hope that will stop someday. I love this site.
      Happy MAY to everyone!!! Spring has sprung. I love the colors coming out!

      Caroline

    • Anonymous
      May 7, 2006 at 1:45 pm

      Welcome back Caroline. It’s good to have all of our Senior members coming back. We have all missed each other.

      Take care