It is so discouraging to have this dreaded thing and feel so awful most of the time. My husband just happens to be at a point that things are looking fairly good right now. The past two days however were most uncomfortable and really affected his mood and personality. I keep asking him to the point I know I am nagging him but I am concerned with the coming off of the prednisone even though he has these other meds making a difference in his quality of life that maybe he is regressing a bit.
We are getting a blood test tomorrow as his local Dr wants to check the cortisol(?) level before he totally stops the 2 1/2 mg of prednisone. And maybe this is all part of what I have read when you are coming off the prednisone and just bite the bullet so to speak and grin and bear it and hopefully it will get better. Hopefully his body will adjust and produce whatever it is it is supposed to do in the absence of the prednisone that he showed became a dependancy for him. Wish he never was put on it but I guess overall it was necessary. Even the Mayo clinic wasn't overly concerned that he was on it and has been and now tapering. If they were involved in his care from the get go maybe they would have done everything just like his local Dr. has. Who knows....
It is indeed very discouraging to not feel normal and plan every single thing you do before you do it to allow for whatever social thing or normal day to day things you need to accomplish. You can't just run out the door without making various preparations.
We live in an over 55 community with a variety of different ages from baby boomers to the elderly so we see and hear about
alot of different illnesses and sicknesses. Some are minor in comparison to what he is going through and others are so much more serious. So sometimes it is annoying to listen to the little "ache and pain" type things as you say and then he counts his blessings that he is not in the unfortunate state that others are in.
Every once in awhile it is ok to have a "Pity Party" it is part of the coping mechanisms. I have them as the caretaker who gets the brunt of his frustration that he can't help....fortunately I am not sick. I am one of those with the little "aches and pains" who DEFINITELY keeps the complaints at a real minimum now having lived with what he is going through. Gives me a whole new appreciation for what real suffering is. My heart goes out to each and every one of you and what you are going through. It is uplifting to read every once in awhile progress someone has to report and you just know how important it is in their lives to get some of those "better days" to get a reprieve from all of this.
61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07 Oct 07 feeling quite normal most days. 150mg Imuran 2 1/2 mg prednisone & tapering, 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 40 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs Morphine Sulf 15 mg twice daily)Cortifoam enema PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month