Anyone else dealing with chronic illness/disease?

[JustHolly]

I just wanted to say that I admire you all for being so strong and trying to stay positive when you are not feeling well.

Ted didn't mention how positive his mother has been about the whole dialysis regimen. She has to go for dialysis 3 nights a week for many hours and doesn't get home until after midnight. There have been many complications that have required trips to the ER and minor surgeries. Through this all, she has continued to work and do all the things she used to do. I really admire her for staying so positive and continuing to enjoy every day. She's truly an inspiration as are the rest of you.

Ted, I know you've had a rough few months with the meds and the gout and that it got you down. You impresss me with your strength and trying to stay positive! I'm so glad you're feeling better, and what you said about staying informed is so true!

STAY INFORMED!!! Ted and I are in this thing (PKD) together, and the ONLY thing we can really do about this disease is to read, read, read and talk to others! I cannot stress this enough! If you are diagnosed with something, find out everything you can AND MORE! The best doctor you have is yourself. Insist on seeing specialists, even if your regular doc says you don't need to. Question EVERYTHING! Ted has avoided so many kidney-damaging treatments and unnecessary tests because he's informed. It's hard for doctors to stay current on EVERY condition, especially when they're overloaded with patients and paperwork. It's not that those doctors are "Bad" In reality, they simply don't have the time to know everything about every illness/disease. They do their best and MORE, but we can help them!

Take Care, everyone and know that I admire you all!!!!
Stay well!
Holly

 

[J/T Gramdma]

I understand about Drs not listening to you. in the early 70's all otc meds switched from using aspirin as the med of choice to tylenol. I found out this when I took otc 'contact' for a sinus pain . I had taken otc contact for several yrs with no problem. this time I ended up in the hospital with 106.5 fever and cramps and headache that was immobilizing. The drs thought it had to do with my 'iud' and sent me up to the 7th flr of the hospital. well the elevator went to the 17th flr and came down to the 7th flr and the contents of my stomach stayed up on the 17th flr. As I got off the elevater I was almost immediately better -no fever ,no headache-infact the ob intern got extremely mad for making him come in- did I mention this was the middle of the nite. Doing some invesigating on my own I figured out about the tylenol. Now in the 70's tylenol was the miracle drug of choice. Every drug co switched to it. and every time I accidently took a product with it ,I got very sick. no Dr believed me. so I had to become my own protector . I was in back pain once and the dr prescribed a tylenol drug right after I told Him I couldnot take .I asked everyone from the dr ,nurse and pharmasit before I tooka drug and I became as many people have said anti -pill. I have since found out that only 3% of the people cannot take tyl and back then that was not known likeI said it was a miracle drug for everyone. I even had one dr tell me to my face that nobody is allergic to tyl because of the benefits of the drug. now in the 90's it became better and in the00's very few people and drs disagree with me.By the way almost all drugs has some tyl in them and I read up all drugs before I take them and am still very picky about a new drug before I take it. I also have IBS and RA so I do take drugs now for there benefit to my systems but I carefully check any new drug DRS want me to take ask about 30 questions before I am willing to have them prescibed. Everyone here should be praised for there 'can do and will do 'attitude .

 

[JayBee]

I also was diagnosed with Ulcerative Colitis as a newlywed....over 20 years ago.

Back then the only drug was a sulfer drug-and I was allergic to it. So my (not so great) Doctor put me on prednesdone for years and I hated it( major mood swings, "moon" face, etc)-very trying on my DH.

After a while I got a great Gastro Doc and the new meds are soo much better(Pentasa& Rowasa) and haven't had a flare up in 5 years(yea!)-watch what i eat and try to avoid stress(which is hard)....my Doc has indicated that "sometimes" the illness just fades away-so I'm keeping my finger crossed.