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7 years ago 0 +0 / -0 2508

Last night and today were really tough from a emotional standpoint even though I am not in physical pain now. The emotional pain is much worse. If I can not tolerate the meds and infusions coming later than surgery is my next option.

7 years ago 0 +0 / -0 2508

Hi Hugs:

This site is a extended family for me and pretty much all I have right now too. Thanks for the Well Wishes! I hope your doing well too. I'm hanging in here at home and we are still working on getting me well.

Edd has gone to visit his ailing daughter and family up north from us for a few days. It's a 6 hours drive from here. Anyway I really did need a break from all the drama it was making me sicker. This should reduce the stress here at home for me while he is gone and I will get a much needed rest. I sent out a distress call to my doctor and his nurse yesterday. He called me back and tweaked my steroid meds a bit which should help with the extreme anxiety as was getting as a side effect. I had stopped taking them altogether a few days earlier because of the extreme anxiety and went into a bad flare. Anyway we split the dose, one pill with breakfast, one with lunch to lessen the anxiety effect. Today is my first day on this dose so I am a little scared. He did say if my flare worsens over the weekend I need to get to hospital right away. But for now I am OK and feel pretty good here at home resting in the peace and quite by myself...What a relief it is!

Take care my friend....

Red:)

7 years ago 0 +0 / -0 4027

I hope you're both better. This site is like an extended family for me, and right now, you're pretty much all I have.

7 years ago 0 +0 / -0 2508

Davit sorry to hear your in the hospital again with a infection. I hope they are getting your pain under control too while your under their care. I will be thinking of you as always and am sending positive energy your way and lots of prayers too for a speedy recovery. As for me, we took me off the safer pred which was not helping and replaced it with a stronger pred, so now I am taking prednisone 40mg daily plus 2 other meds and calcium/d3. We are documenting my condition and waiting for approval so we can put me on Humira to suppress my immune system so we can get me into remission and hopefully keep me there. UC IBD is autoimmune disorder they think. I choose this drug because I can self inject it at home and will not have to go to a infusion center to be hooked up to a iv for 4 hours twice a month. If it works and keeps working I will be on it the rest of my life. I will have to stay away from people with the flu and such while on immune suppressants but that's ok I've been a loner pretty much all of my life anyway...Well that's enough about me. Wish me luck. I'll keep my finger crossed for you too...Red...

7 years ago 0 +0 / -0 6252

I've taken prednisone for better than 15 years. Yes it does give you thin skin and thin bones.

I'm in the Hospital with infection again.

Davit

7 years ago 0 +0 / -0 4027

I;m struggling to find someone to help with the grunt work of gardening. I can't tell sometimes, what I should do versus getting help with, since I have so much that has to be done? Anybody have suggestions how to make that distinction?

7 years ago 0 +0 / -0 2508

Update: Still hanging in there. Hope everyone is too...Red:)

8 years ago 0 +0 / -0 2508

Davit, Thank you for your support. So sorry to hear that you were in the hospital again. I Hope your meds work too. I supplementing with calcium and d3 now on doctors orders because the preds can cause softening of the bones. The other thing about preds is that they can not be taken long term so if they work and get me into remission then we will need others drugs to keep me there. If they don't work than there are other options for me still. Maybe infusion biologics. Anyway I am on 4 different meds right now plus the supplements. We will keep trying different combination until we find the right mix. Surgery would be the last resort and we are not there yet, Thank God!. So I am grateful and hopeful that it will all work out. It's just going to take time and Lots of patience. I have to admit it does get me down sometimes and I do feel tired but I have Hope and that is what really keeps me going... Talk to you again soon. Hang in there my friend. Your forever friend,Red

8 years ago 0 +0 / -0 6252

Another week in hospital with extreme pain in my back. They don't know why. I'm home but barely functional. Going to take a large dose of prednisone to see if it helps.

Red, I hope your med works, I have been on cortisone for 15 years with no noticeable increase in anxiety.

David

8 years ago 0 +0 / -0 2508

By the way this site and support group is one of my Safe Harbors...I am so grateful that it is still here...Thanks, Red...

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