update on me JoJo

    • Anonymous
      August 24, 2010 at 7:45 pm

      finally started IVIG was four times every other week now it is twice a week every week. My feet were permantely damaged during GBS now i am afraid hands may be damaged as well. So far no change that I can tell. Nurse says my gait (with a walker) looks better. I am a month into treatment. Doesnt help roght now that i have a bladder and sinus infection. Always seems to “Flare Up” when I am sick. Which seems is every couple of weeks. Mentally it is taking its toll. Cant seem to stay awake for very long. I sleep aty the infusion center and again in early evening then about 10 pm everynight. Every thing is such an effort. I want to go out and do things but it is hard. Like today for instance Got to infusion center at 730 am slept until 100 pm had lunch was a wake the rest of the day . I went with a friend shopping. Actually to a pet store and then to this shop a friend owns. Had to keep sitting down. Am using my cane some of the time but also my crutches. I use my walkert at theinfusion center. Am having trouble with my brain and its ability to think and remember. This is not new and have be told is not related to the CIDP. Drs seem puzzled about this aspect. Have been sent to a sleep clinic. Now have a cpap machine. Use it everynight but font see any improvement in my memory. I do also suffer from bipolar as well. That is under control with meds and therapy. Numbness has been particularily aggravating today even as i type. And of course with the bladder infection comes incontinence. Just dont have the indication that i have to go until it is too late so I am back to going every couple of hours. Just seem to be moving backwards and not any improvement. Oh my mom decided i no longer need a ramp to get in the house so she had it pulled up and replaced with a railing. which my dad says do not put so much weight on it . But I have tp because there is a step up and then a raised threshold. It is a nightmare for me. Makes me not want to go in and out of the house. I dont think my parents are really getting what CIDP is going to mean for me in the future. Especially because I dont think the IVIG is going to do what they seem to think. I think it will s top some of the progression or slow it down at least but will not repair the damage that already has happened. I t hink it may be time to sit down with my parents and the neuro. and really talk bout my future. Unless my parents are planning to do what the did when i had gbs and put me in a nursing home. I lived in one for over a year but was considered too well by medicare to stay. and then became private pay and my parents brought me home. I think as i decline that willagain be my future. But in all fairness my parents are in their 60s and 70s. Sorry this is so long but it feels good to let it all out.

    • Anonymous
      August 25, 2010 at 11:25 am


      I am sending some cyber hugs to you. It sounds like you are having a rough time.

      Is there a support group in your area?

      Do you have any friends that you could go and stay with for a couple of days to give you and everyone at home a break?

      If you can’t leave the house is it possible for mom and dad to leave and have someone come in to help care for you for a day or two?

      Regarding the ramp is it possible to share your feelings with your parents about your fear of falling and getting hurt trying to get in and out of the house?

      Try to drink lots of fluids to flsuh those infections away.

      Take care and let us know how you are doing,

      Rhonda from Canada

    • August 26, 2010 at 12:09 pm

      i think the hardest part of cidp is that everyone who knew us how we were when we felt good just dont get it!!! I find thats been the hardest part—saying “im not up to that today” when you’ve always been active then in a short period of time the cidp takes it all away–its hard enough for us to adapt to–but then for everyone to just expect us to go on like nothings different–IT’S HARD—my thoughts are with you jojo. Lori

    • Anonymous
      October 12, 2010 at 8:03 pm

      still getting IVIG 2x a week every week. Now am having back pain. first thought it was my kidney stones but urologist seems to think not. Regular physcian has said that i need to see an orthopediest. the ortho is sending me for physical therapy. All i know is my lower back hurts. Laying down sitting or standing. I am getting frustrated. I go to the infusion center every monday and tuesday each week from 7 am to about 2pm. Some days it seems like i improve other days seems back the way i was. Not to mention the fatigue. Survived my mom and dad traveling up the east coast. One of their friends stayed with me. My therapist (head) is moving to another town. she says i am welcome to follow her. It is not that far but would take up a half a day to see her. I may just try someone else in the practice. Supposed to travel with work tomorrow for a staff retreat. we are going overnight to the mountains. I said i would go but now am not to sure. It is only one night and it would give my parents a break for the night. I want to get out and do things but hate the price i pay afterwards.