I told them so...

Yikes. At least it sounds like the doc listened to you. I hope someone gets to the bottom of this, and soon.

Gin

Thanks GinLyn

I received my Mayo schedule today and I my Neurology appt is in August and fibromyalgia is in September for 3 days.

My husband is complaining because he doesn't want to drive up there every month, ha ha. June 2012, July and August 2013, July, August and September this year, oh no! I see a pattern forming. Before you know it we will be going monthly and might as well move to Rochester, Minnesota. It is 3.5 hours away. If I could drive myself there I probably wouldn't need the appointments! (Neuropathy in both feet......chronic fatigue, migraines, anxiety, etc.) He'll take me.

I'm not expecting miracles but I am getting my hopes up a wee bit.

Please keep us informed. I get these sort of flare ups, fatigue, migraines, all over body aches, brings on anxiety. I am just dealing cause I don't want to go to the Dr and find out that I have more problems.

Keeping my fingers crossed...it might not be miracles but at least a decent remedy of some sorts...or diagnosis with treatment.
They put me on Lyrica for the peripharal pain in the feet and ankles etc...it has been 4 weeks so I am not sure but I think that it is helping...I let you know if there is any marked improvement.
hugs and hope that you get some positive responses
Sharon

Hope you get some answers!

AllyKat, after 17 years and everything keeps getting worse and new things start going wrong something has to give! It started out small and I could still work overtime at my firm and then when I could no longer work full-time I had to sell my firm. I took a year off and went back to work half time until I just worked half time just tax seasons until I quit working all together and then I had my j-pouch surgeries. I thought I'd be able to go back to work after getting that part of my health "fixed". Didn't work and after a year off of work I filed for disability and have gotten worse until I hardly leave the house and don't drive further than 20 miles from my home and that is to local doctor's appointments. It is time to try to see if there is something that has been missed that can be fixed to give me some quality of life. I'm not ready to give up the fight for a better life. I'm tired of my state of health. So I have hope that these departments of the #1 hospital in the U.S. will look into parts of my health that have been ignored or falling in-between the cracks. They may find out that I am as good as I'm going to get. If that is the way it is I will continue to work on my diet, accept my fate and try to be the happiest grandmother I can. All I can do is all I can do. Ignoring symptoms and denial didn't work well for me. I ignored my UC symptoms for years. I was lucky that I didn't have it hit me as hard as it hit so many of you. Then after I was diagnosed I still ignored it and kept working overtime while raising our family. I believe that had a lot to do with stressing my body right into fibromyalgia. There is no proof of what causes fibromyalgia but some believe it is stress on the body. Add UC, high doses of prednisone and working long hours in a stressful job and a family with all of that and I am not surprised I got fibromyalgia in hindsight. I just decided that I wasn't sick and kept on going, even after fibro hit me. There is only so long you can last on adrenalean or whatever it is. That's why when someone tells me to "suck it up" I want to SCREAM. I have nothing left to suck up, it is gone, literally gone, used up, empty. I am running on fumes.

So whatever if anything they can find that can help me. A different set of exercises to do in bed, literally a n y t h i n g....I will be grateful. I hope they figure out much more than that but am not expecting a miracle.

In any event I got my schedule and am not going to the Fibromyalgia and Chronic Fatigue Clinic until September 22nd and will be there up to 3 days, seeing my wonderful GI, Dr. Edward Loftus, Jr. the end of the 3rd day. If anyone wants to go to an understanding GI and human being I highly recommend him. He gave my second UC diagnosis opinion in 1997 so I was fortunate to get him as my doctor when I returned in 2012 with j-pouch problems. He asked me questions that made me think that he must have a j-pouch himself. I don't know how he would know to ask such questions! He has more empathy than any doctor I've ever had and he is a man.

My goal today is to color my hair as this wonderful man wrote that I was a "pleasant, anxious, chronically ill-appearing woman" He never used the terms anxious, he was right about that, or "chronically ill-appearing" before. I even wore make up to his appointment. I don't want to scare my grandchildren so I'm going to try to work on my ill appearance a bit, lol.

Sending you a cyberhug TE. I hope everything works out!!!

((Hugs))) your life sounds similar to mine. Your not alone on this journey.

Paulette, I hope you get some answers, even if they are mot what you want to hear. I think knowing and understanding your condition makes things so much more tolerable. Even if you cannot control the situation, just knowing what can occur is better than fumbling around blind.

Jan

Spot on Jan.

Oh Paulette ......... I can feel your despair and I want to wrap you in cotton and carry you around in my pocket to keep you safe. You need a real break somehow, someway, and your upcoming Mayo appointments are the very best thing you can do for yourself. You are doing such a good job of trying to take care of yourself despite one obstacle after another. Hang on, this dark, terrible time will pass, and things will get better. Until then I am sending you hugs and a giant package of hope.

Thank you for your soothing and comforting thoughts Savanna. You don't know how much they mean to me. You are right, I am going through a dark terrible time emotionally and physically. I'm a survivor, thanks for reminding me of hope.