update on me JoJo

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.