I understand your predicament, I took care of both of my parents, when it got bad I utilized home health care agency, there are also some home hospice agencies that can help with complicated cases as well. Its really stressful, I hope you are able to find the help you need, you could also try talking to the case manager at the hospital, sometimes they are great resources as well.
Sheila W. said:
Thanks for caring enough to ask. Bringing home Mom from hospital on Monday after I learn how to feed her through p or 2 until she has to go back for another stroke or bowel blockage. She is so complicated health wise now. She can't talk or swallow. They did't want to put her in a nursing home because only nurse's aides work there and the local care is not intensive enough for this level of complication. I know I can learn how to work the things, but I am concerned about being one sick person doing care 24 hours a day, when the hospital had 6 people caring for her 24 hours a day, and they only had to do it for 8 hours at a time. I'm already exhausted and in so much pain. Checking out options for help today and tomorrow. It would be awful if I had more heart problems serious enough for the E.R. and she would be here alone, unable to communicate, or if I even passed out, she could not call 911 for me. Scary, but the things I imagine are ALWAYS worse than the actual reality, so I just need to calm myself down and trust in God. Bless you Ann.
Ann A. said:
Sheila W. ....
How is your Mom, your MS, your heart?
Thanks Ann, I appreciate the information. I went for five years without a flare. Then had worst flare I ever ever had. Scared me into trying gluten free and reduced sugar diet for about three weeks (heard it takes 4 weeks to see difference from gluten free diet). BUT I decided to treat myself????
by having some cake and then for about a week I was bad! Needless to say my joints started hurting and fatigue set in...I am going back to reduced sugar intake and gluten free.
Your post was very much appreciated and will put it on my Facebook. Dee
Ann A. said:
Non Celiac Gluten Sensitivity has even been misdiagnosed as lupus
http://www.ncbi.nlm.nih.gov/pubmed/15479903
CONCLUSIONS:
The immunological profile of IgA deficiency and/or raised double stranded DNA in the absence of antinuclear factor together with raised inflammatory markers and symptoms suggestive of an immune diathesis should alert the physician to the possibility of gluten sensitivity. The presence of an enteropathy is no longer a prerequisite for the diagnosis of gluten sensitivity, which can solely present with extraintestinal symptoms and signs. Knowledge of the diverse manifestations of gluten sensitivity is essential in avoiding such misdiagnosis.
I quit eating gluten around Christmas time. About 2 months later I realized that my joint pain was gone - specifically the pain in my hips. Before I quit gluten, I could hardly get up from my chair and after I finally got up, I had to wait awhile before I could walk. Now, I can get up as quickly as I did as a teenager. It is amazing. I also have more energy. I just feel like I used to before the Lupus came.
I forgot - I had diarrhea everyday before I quit eating gluten.
I don't have celiac disease and I have greatly improved my life by not eating gluten. I had diarrhea every day and lots of joint pain. Now I don't.
Blondie said:
By working in medicine and reading and studying topics such as this. I can say all reparable studies I have read about gluten free, say it only benefits people with celiac disease. All other media et al... are just marketing it for the money. In other words it does nothing, except maybe psychologicly makes people feel they are doing something good for themselves, and throwing good money away on things that give no benefit. The only people that gluten free helps is celiac disease.