Just one day of feeling healthy makes me giddy. What's it like?

[social me]

Days like these are days that make it hard to smile without trying. As I write this I am crying. Don't get it wrong I am so blessed to have 2 kids and amazing husband however I am not me and have not been me for some time, and when I do feel me it doesn't stay for long. I feel I am not living my life, I am surviving it, dealing with it.... Fighting with it. At times I can loose hope becasue no matter what I do, Dr. apts., tests, blood work, eating healthy, naps, and journaling and lifestyle change, it doesn't change. :ybatty: I hurt because I miss out on all these beautiful blessings God has given me, many! I am thankfull for them and know it could be so much worse and I am rather fortunate. It is these these reasons make it frutrating to hurt the way many of us do. I just for ONE day would be so happy :dance: to not have to take a 2 hour nap or cancel on an event or make up somthing low key and easy to do as a family here at home. (thank the Lord my kids like family/popcorn movie night . I would love to not have to take ANY meds (wow whats that like) I want to have enregy to go skiing with my kids which was our Christmas break goal, however my body won't allow it. This is what has made today more difficult then most. Today was about taking control of my body, my life and not feeling as if I were getting the best of me. I wanted it to feel like a normal day for my family. I couldn't give that to them, this makes me hard on myself. This is what hurts more the any physical pain. So to all of you. Thanks for the time you give to read and at times post. I hate to know I am not alone and would love to wrap my arms around all those hurting today as say " it will get better, maybe not today, but it will get better." :hug:

 

[Angrybird]

Oh lovey that really sucks :hug: My low point was a little over a week ago when I was sat on the loo with 'water' coming out my butt and what couldn't fit out that end coming out the other into the sink. Running through my head was 'xmas is cancelled, hubby is going to have to call the family and say we cannot come for visits etc'. Then WHAM!! The steroids kicked in and my high point arrived on xmas day where I was able to eat my dinner and wasnt sick!!! Now there was still a few grumbles etc so this may not be considered the biggest high but it was a little one none the less - I will take what I can get Perhaps this is what we need to look for first, little moments, perhaps an hour here an hour there and slowly build up to having a whole day of feeling good. I also try and keep at the front of my head - IT COULD BE WORSE - it is hard at times but I know somewhere out there someone is havng a worse time than me, does this sound as corny to you as it does to me????? . Sending positive thoughts your way.

 

[sparkles]

my prayers go out to you. crohns disease is such a horrible illness, but its hard for others to understand because its not an obvious illness to others.
good luck with everything, and i know exactly how you feel

 

[tlc-x]

Oh I feel for you I have no idea what to say if i'm honest. I wanna give you a great big (careful) hug! I know how you feel, although still undiagnosed xxx

 

[social me]

Well I saw the doc today and based on Colonoscopy they would assume Crohns but based on lab results and EGD they would assume Ulcerative Colitis. So I guess as of now (seeing the new doc with 40yrs of practice) I am indiagnosed. New GI I love!! Old GI not so much he never gave me more then 5 min. This doc. shows me diagrams, reads results to me. Tells me what to expect, informs and educates me and takes what I say without shrugging off my thoughts and questions. My first apt with him was one hour and my apt today was 45 minutes. I leave feeling in good care. So despite being undiagnosed its not a big deal I guess. I do have IBS based on lab results and the treatment for U.C. and Crohns is the same until we r thinking I might need surgery. Which won't be the case anytime soon if things continue the way they are. So know the biggest hurdle I have is constipation and anemia with sleep deprivation. If we can fix that I could have more energy! So I guess no news I will see as good news. Both docs siad U.C. is much better then Crohns. I feel bad for all of us because neither is anything great. Happy New Year everyone! Thanks for the thoughts and kind words they boost my spirit!!!!

 

[Angrybird]

Thanks for the update, I am glad you have a good doc on your side - it makes a big difference. How has this been left today? When will you go back to see him? Are they changing anything treatment wise? I saw my GI today as well (he is soo nice) and we are going to give the Azathioprine another go. I am thrilled!! Out of all my previous meds this worked the best for me, here's hoping that it leaves my white cell count alone this time Humira will only come into play if I flare up again on the Aza.