Hi Everyone, Checking in :)

Hi everybody :)

Sorry I haven't been on here much lately.. I think I am starting to come out of a period of depression.. After finding out I couldn't take Remicade anymore due to possible MS, I guess I kinda freaked out for a bit.. I noticed that I didn't want to go anywhere or do anything really, except for ride my horse once in a while. Also I have developed a new sleeping pattern, I stay up till 2 or 3am and then go to bed and wake up around 9am or so. I have also developed anxiety for leaving my house.. not too bad if I stay close to home, but if I have to travel further than 1/2 hour away or so, I get anxiety pretty bad..

I have my spinal tap scheduled for January 5th.. then I have to wait 2 weeks to find out the results. My MS symptoms have gotten a bit better actually and I am still doing ok U/C wise since my one and only infusion back in October. Thank GOD it put me into remission after only one dose.. I would probably have had the surgery by now if it hadn't..

I am still having a hard time emotionally, but do feel like I'm finally adjusting to everything after a few weeks to let it all sink in... I must be doing somewhat better since I'm FINALLY posting back here.. LOL... It's mostly the fear of going through the surgery to get my ileostomy that scares me the most. I have such a fear of surgery.. weirds me out totally!

Speaking of surgery, I have my second surgery consult on January 25th at UC Davis, but they did tell me that if I start flaring before then to call and they will get me in for the surgery sooner. If I don't flare and keep doing the way I am now, it will probably be 2 or 3 months after my second consult before I can get in to have the surgery done.

So for now, I'm doing ok. I started seeing a therapist, seen her twice so far and I like her. She actually gives me tips I can do and helps me learn that some of the stuff I worry about I can't control and has taught me a few tools to handle my thoughts and worries.

OH and I'm FINALLY almost off Prednisone!! Down to 2.5mg as of tomorrow for a week then NO MORE! WOO HOO!! Been on that crap for over 6 months!!!

I'll try and keep in better touch now... lol... Sorry for the dissapearance :)

Did you update your signature on FireFox? The update-signature part of the application is a bit buggy on FireFox.

HI SusieBuddie,

I am having the surgery in 10 days and l also can not take remicade due to neurological problems (broken spine and resulting spinal cord damage plus facial paralysis).

The surgery is a hard thing to contemplate - it will be weird all right. I am also pretty scared - I worry about my kids and husband. The illeostomy thing though I think I can manage - if you look at the ostomy threads there are so many positive stories of people who are managing to live happy lives (happier than with their disease).

I am glad that you are getting counseling. I hope it helps.

Think about being FREE of Ulcerative Colitis!!! I cant wait till they get this STUPID ***##### thing out of me! Take the MS thing one day at a time and dont tackle more than you need to right now!

Sending you lots of support and best wishes and strength.

Clicky

OH... Firefox! That explains it..hahaha... Yep, that's what I did then when I switched back to IE it was still all messed up so I fixed it there... Won't be using firefox to do any changes to my profile again.. lol...

CLicky! WOO HOO for your surgery coming up soon.. Can you share with me your experiences when you have it..? I mean when you are able to get back online and post that is.. hahaha... I tried getting a hold of Meesh, but haven't heard anything back as of yet and Meesh is having surgery on January 12th I think.. The scariest thing of this entire situation for me is having surgery.. I know it's inevitable but Im such a chicken! ....bakok bakok!!!!

I too think I will manage just fine with an ileostomy, it's the going through the surery part that freaks me out.. lol...

And yes, Quincy!! I really like this therapist, she's GOOD.. and YEA.. 2.5mg starting today for a week, then I can either just quit, or go to one every other day for a week.. I'm opting for the one every other day for a week and then quitting.. just to lessen any effects I might have.. FINALLY!!!!!! WOO HOO!!! That Pred is such a nightmare!!! It helps you get better but makes you look like and feel like the hunchback of notre dame... lol..

Susie-

So glad to hear from you...i was worried about you and wondering how your UC is doing. Glad to hear the UC thing is ok so far...I am hoping that you continue to feel better both mentally and physically. Also happy to hear you are about done with the pred. Take care!!!

Susie,

I am doing great so far with the Remi...just a couple of days of being tired and achy after my last infusion. I am also having joint trouble since going off the pred. I hope that goes away soon. I never want to go on pred again...I feel like a big fat whale and my face is sooooo round. I weigh more than I ever have in my life even when I was pregnant I didn't weigh this much. My doctor said it will take quite a few months before I notice the moon face going away. It is very hard for me to see family and friends that haven't seen me for a while. :( Even my father asked me....."Why is your face so round?" MEN!!!!!!!!!!!!

Thanks so much songlady!!!

Yes the taper is going fine so far.. I started 2.5mg today and feel fine so far.. I haven't had any trouble really tapering except for feeling tired a few times here and there and the slight aches and pains I used to have before...ha!

One thing I did notice is that I started losing hair from my one infusion of Remicade.. It was falling out pretty good there for a few weeks, but I think even that is seeming to slow down now that I've not had anymore infusions...

And... OMG GLOVE.. I can totally relate to what you say about it being hard to see friends/family who I haven't seen in a while.. I also feel like a big fat whale and I'm the heaviest I've EVER been right now.. UGH.. I've gained about 30lbs from the Pred and you just KNOW when you see someone you haven't seen in a while, they are thinking.. "WOW, she sure put on weight".. I feel embarassed and so self conscience about it.. I do think my face is shrinking a bit though. I don't "Feel" my cheeks as much when I talk as I did a few months ago... and I don't find my face and neck fat choking me as much as it was... I just wish I could see my belly and butt shrinking too! LOL.. I did go on a 3 mile hike today with a friend.. not easy, but I did it... I am wanting to go hiking at least 3 times a week when weather permits.. I gotta get my body back! Plus I'm sure my horse will appreciate it too.. hahaha!!

I'm SOOOOO glad to hear the Remicade is working for you! It worked GREAT for me too except for this MS nonsense... I'm still in U/C remission and hoping it lasts through till next fall. I don't want to have surgery and be recovering during the time when I do most of my horseback riding.. I'd like to have surgery around November and heal up through winter when we get the most rain..if I can just get my colon to cooperate!!! Please pray that I can make it that long.. :) So good to hear how well it's working for you :)

Thank you GLOVE... I hope I stay in remission for a long time too..

Choking Wadle.. LOLOL.. that cracked me up! That's a good way to describe it! Now that it's getting better I can laugh about it.. It was annoying though to be laying on the couch and feel like my own neck fat is choking me! I've never had THAT problem before... hahaha! Prednisone makes you experience a lot of different WEIRD things doesn't it?? I kinda miss the energy boost though.. my house is still clean, but not sterile like it was.. HAHAHA!!