crying..one year later- update

I sit here and I hate to post..I hate that I am crying.. I am frustrated. I feel as if I have lost control of my body. One year since I started this journey. I honestly thought that i would be making progress. There were times over the last year where I felt I was progressing only to take steps backwards with medicine, to have pancreatitis develop or side effects come out that I wasn't able to deal with. Now I am dealing with severe pain every day, laying in bed endlessly, using a wheelchair when I am out, a prednisone taper from hell. I had something very odd happen on new years day.. woke up and couldn't move, couldn't speak, could barely twitch a finger... I just laid there praying that my husband would wake up and see me , see there was a problem... he did but he didn't know what to do for me and almost called 911 but I started moving my fingers and than slowly I was able to whimper and then I just laid there and cried. I have no idea what happened.. I thought maybe my joints locked up but now a friend thinks maybe I had a seizure...we never called the doctors.. I don't ever think a doctor would do anything..and then yesterday my heart was shaking, my bp was high.. I just feel as if I am falling apart...can anyone really help me... I took my second vitamin d dose again today and feel as if I have been drugged...I get my higher dose of remicade on friday...I see the mayo on february 1...it all seems pointless..I just don't know what to think.. what to do...I don't know why I am in so much pain all the time, why I am so freaking tired, why the diarrhea is still present though less than a year ago, why the stomach pain...just tired of it all..
I don't have anyone to vent to.. I feel as if everyone is tired of me.. I am tired of me.

hey june, bummer, really bummer, I'm truly sad for you and I wish I could post, and say take this, do this, and you will be good to go. But darn this pain in the butt d, I don't talk much to my family any more about too much, I mean we talk but I know what you mean by people love you, but your family knows you're sick, for sure, but I feel nobody wants to hear you're woes of illness after awhile. I don't have young kids so I can imagine you want to be their for your kids as they're mom, it really it's kind of out of your control to a point, now your drugs I don't recognize them, are you from UK or Canada, because are any of those pain meds? my wife has gall bladder issues and she takes 1/2 vicodin when it hurts, then if it's still bad, another 1/2 at bedtime. I'm on rem and pain med's, now I'm down to 1 maybe 2 at most per day, I don't get high, it takes pain away, not gone but I can do stuff, now I've had 4 surgeries over my life time for cd, it brings on remsssion, for me first time 6-7 years without a sign, then it came around for 4 day flare to remind me that hello I'm back, then good for another 14 years then resection time, now I'm close to another one, I'm ok with that, I know it will give me remission, it's not bad enough yet. I'll let you go june, it might get worse before it gets better, but it WILL get better. take care

I am hesitant to add anti depressant meds to everything else...it is on my mind though.. so thank you..
artist guy.. pain meds have been tramadol.. it makes me really tired..my gi did give me celebrex but everyone here questioned the use of it so I have been afraid to take it..my hubby called and they are still standing by the celebrex.
i am really wondering about the vitamin d being the cause of feeling so bad since everything has gotten worse since I began it.. and I am worried about the episode on new years day.. i can't imagine that it was a seizure but geesh.. what the heck happened.. it was like I was trapped in my body..
thank you.. .thank you so much.

(((hugs)))))) This is such a hard disease to live with. Sorry you are having such a tough time. Could what you experienced have been a little stroke? I sure hope it's nothing serious. I understand that feeling like you and everyone else must be tired of it all. It's no fun feeling like there's no light at the end of the tunnel you're in. I hope things improve for you soon. Hang in there. Hope it helps to know you are not alone in this.

I'm so sorry that this DD has you so frustrated... and having to deal with so much! That sounds really scary. I hope the doctors can figure it out so you don't have to worry about it. So glad your husband was with you!

I did want to chime in because I've read that Tramadol, when combined with some other meds, can cause seizures. I have no idea at all if the combination of med you are on is one that has the side effects, but if you search on drug interaction checker you can enter all of your meds and see what the mixture precautions are.

As for this stupid disease, I completely understand how sad it feels when the time flies by, you try so hard to find a way to heal your body, and then nothing helps. I really hope you find a Crohn's med that helps you soon!

Hang in there... Hugs!!

I really do know how you feel.  Been there myself.  I can only offer that this roller coaster ride will smooth out over time.

I used to tell my wife, "I want off this E-ticket ride".  Most people don't know what I mean when I say that anymore.  After chuckling at my OLD self and the youngster who doesn't know, I explain it and just the action getting my mind off things just that little bit usually helps me feel better.

Yes you have had one H%$L of a year and no one deserves that. You have been shown pretty much the worst of this DD and you are still being put through the ringer. BUT here's the thing, the doctors will figure it out, they will find out what is going on and this roller coaster ride will end. In the grade scheme of your life, its ONE year. One 60th, one 70th of your life, not much really, miserable to live through, but you can do it.

Once it all gets figured out, you will get your life back, a slightly different life, but a much better life than now. You just need to trust that the doctors WILL figure it out. HOWEVER, they can't do that, if you don't tell them EVERYTHING! You may have some other underlying things going on. I know you don't want to think that, but if you do and they find something, you could be feeling better sooner rather than later. Holding back any information from the doctors just slows down the process.

And lastly, of course you can come here to vent any time. That is what we are here for. We have all had our bad times. I wish I knew about this site when I was at my worst. My kids were young, I was miserable and I had no one to talk to about how I felt. But I got better, my kids barely remember that I was sick for several years and life is good now. It does happen.

so the dr thinks it was a possible seizure and has pulled me off the tramadol.... they want me to take the celebrex at least until I go to the mayo which is only a few weeks away now. It seems to be relieving my pain to the point I can walk , just wondering what damage it is doing to the insides..

thanks again