I must say this site has been such a blessing. I have learned that I am not alone, that I don't have to give up, and that even though things are bad I can get through. I am having my third flare this year. Doctors are wavering on surgery. They say that I have tissue damage that needs to be removed but they are not sure if they want to do it or not because I have only been on one course of medication (Imuran, Prednisone). The problem is I cannot seem to get well enough to move on to another course of treatment. I am also a diabetic (with really good control), overweight, and with the Fibromyalgia am having a heck of a time healing. It seems like I get about 85% better and then I am back in the hospital for 5 or 6 days. The pain is appalling. I feel like if someone poked me with a pin I would pop! I am surviving on a liquid diet right now. Going to the bathroom is a nightmare. I would never wish this disease on anyone!!!
Now that I have boo hooed, I am looking for some practical advice on what next steps to take. I am finding it impossible to keep a job (I have been working since I was a kid so it is weird to feel this way for me) because of the pain, the missed work, my age (40), and of course my condition. My family and I will lose our home if I do not work. I am employed at the moment but they are losing their patience with my disease and I see a letting go sometime soon. They are asking me to write a manual on how to do my job. I have to say, even though it sounds harsh now, that they have worked with me and around me for 5 years so it is not like they have not tried but I just am not reliable as my crohn's flares up within hours, so I could be okay in the morning and in the hospital at night. So unpredictable. I think that I finally have to stop working and apply for disability (in Michigan). I know it takes a long time but I just wondered if anyone had gone through it and what they could tell me about
the process. Should I talk to my employers about
this or just quietly start the process. I hate to be deceitful but I have to protect my family as best as I can. I just found out I am going to be a Grandma so it is very important to me!
My second question is about pain control. I already take a lot of pain meds for this (6 Norco (10-325) and 6 Ultram (50mg) and 150 mg Nerotin (sp?) per day) but I still am hurting so bad I want to cry. What is the next level of pain control besides going to the hospital and getting IV pain meds. I don't like the way they make me feel but the pain relief is amazing!! I actually feel halfway normal for about an hour and for those of you that hurt that is like a little slice of heaven. What should I talk to my doc about? It there something else besides narcotics that may work? I do other things like meditation and deep breathing, relaxation techniques.
Sorry for my long winded post. I am just feeling a little at the end of my rope and cannot stand another second
. Thanks for taking the time to read and reply. Have a super day.
Crohn's 12 years, Diagnosed 3 years
Fistula's - Surgery 2008
Diabetes Diagnosed 2000
Complications from Prednisone (Neuropathy)
Fibromyalgia Diagnosed 2009
Carpal Tunnel Diagnosed 2009