- Joined
- Aug 30, 2009
- Messages
- 8
Hello Everyone! I'm new here, just joined tonight.
I was diagnosed with crohns disease in 2006...changed my life. I was on Prednisone, then Remicade. The infusions are working great for me! Except my immune system is so weak, i catch every flu going around..feels like i'm always sick, tired and most of the time pretty irritated and uncomfortable. You treat one thing and end up treating 5 more things...*sigh. Some days are better than others, as I'm sure you all know. Today i'm feeling down, because tomorrow i'm getting my infusion..so I start to think about all the negative things that have happened in my life (which is half the problem!!) I'm a worrier, i'm anxious...and it's exhausting sometimes. On the flip side, I feel fortunate to have a higher appreciation for things in life, it really puts things into perspective. I finally joined this forum to connect with other crohns patients to find relief some how through people going through the same thing as me, and worse...I know I don't have the worse case. I found many postings on this forum to be very inspirational,a nd thought....hey why not, i'll join! Its been very difficult for me to talk about this with friends and family...I dont really feel they understand what it is I am going through. I was on a methotrexate trial along with my remicade infusions, and it made my hair fall out......just to name one awful experience. I was embaressed, frightened to brush my hair or even wash it...I felt like i had this horrible secret and was living with it all on my own. I am off the methotrexate injections now, the trail failed. But I got free coverage for that year!
About 5 months ago I started to get a very strange reaction the night of my remicade infusion. I would get home, feeling great and rejuvinated...then right before bed I would start to feel this intense tingling in my fingers, hands, arms...and it would shoot up and down my arms, feeling hot then really cold, my hands were clammy...then it would get really bad, and tight! I wanted to hit my arm to stimulate it in some way because it felt like it was falling asleep - not pins and needles, more like...completely numb. Freaked me OUT. So i went to emerg, and they didn't find anything 'wrong'...said to take advil, and thats it. It's been happening every time now (every 6 weeks) and I can't seem to get any answers from the Dr or figure it out. The last couple times I had this reaction my legs went numb too and I had the same sensation...its really scary. I know this isnt right, and there is something going on... I'm scared to go for my infusions because I know i'll feel like this tomorrow night. *fingers crossed I don't get this reaction.... Has any one else had this? or know what this is? Other than that, I've been OK so far. I don't respond to stress very well, I get very crampy, bloated...can't seem to fit into any of my pants anymore, i'm so bloated just around the middle
it makes me sad to know all of this is going on and I have no control over it. I try and relax as much as possible, read inspirational books...listen to quiet music...almost like a meditation and it seems to work! (while im doing it)! my stress can sky rocket over anything...and its just tiring. I bought a puppy soon after I was diagnosed to help with my depression...she is the best thing that ever happened to me, I love her to death! Her name is Bella...shes full of beans, makes me laugh everyday and knows when i'm not feeling myself and comes in for cuddles... animals have such a wonderful healing power - I can't think of any more to write tonight, should get some sleep for my early appointment tomorrow morning. Thanks to all who took the time to read my first post! Looking forward to hearing your stories, experiences, advice and comments.
XO
I was diagnosed with crohns disease in 2006...changed my life. I was on Prednisone, then Remicade. The infusions are working great for me! Except my immune system is so weak, i catch every flu going around..feels like i'm always sick, tired and most of the time pretty irritated and uncomfortable. You treat one thing and end up treating 5 more things...*sigh. Some days are better than others, as I'm sure you all know. Today i'm feeling down, because tomorrow i'm getting my infusion..so I start to think about all the negative things that have happened in my life (which is half the problem!!) I'm a worrier, i'm anxious...and it's exhausting sometimes. On the flip side, I feel fortunate to have a higher appreciation for things in life, it really puts things into perspective. I finally joined this forum to connect with other crohns patients to find relief some how through people going through the same thing as me, and worse...I know I don't have the worse case. I found many postings on this forum to be very inspirational,a nd thought....hey why not, i'll join! Its been very difficult for me to talk about this with friends and family...I dont really feel they understand what it is I am going through. I was on a methotrexate trial along with my remicade infusions, and it made my hair fall out......just to name one awful experience. I was embaressed, frightened to brush my hair or even wash it...I felt like i had this horrible secret and was living with it all on my own. I am off the methotrexate injections now, the trail failed. But I got free coverage for that year!
About 5 months ago I started to get a very strange reaction the night of my remicade infusion. I would get home, feeling great and rejuvinated...then right before bed I would start to feel this intense tingling in my fingers, hands, arms...and it would shoot up and down my arms, feeling hot then really cold, my hands were clammy...then it would get really bad, and tight! I wanted to hit my arm to stimulate it in some way because it felt like it was falling asleep - not pins and needles, more like...completely numb. Freaked me OUT. So i went to emerg, and they didn't find anything 'wrong'...said to take advil, and thats it. It's been happening every time now (every 6 weeks) and I can't seem to get any answers from the Dr or figure it out. The last couple times I had this reaction my legs went numb too and I had the same sensation...its really scary. I know this isnt right, and there is something going on... I'm scared to go for my infusions because I know i'll feel like this tomorrow night. *fingers crossed I don't get this reaction.... Has any one else had this? or know what this is? Other than that, I've been OK so far. I don't respond to stress very well, I get very crampy, bloated...can't seem to fit into any of my pants anymore, i'm so bloated just around the middle
it makes me sad to know all of this is going on and I have no control over it. I try and relax as much as possible, read inspirational books...listen to quiet music...almost like a meditation and it seems to work! (while im doing it)! my stress can sky rocket over anything...and its just tiring. I bought a puppy soon after I was diagnosed to help with my depression...she is the best thing that ever happened to me, I love her to death! Her name is Bella...shes full of beans, makes me laugh everyday and knows when i'm not feeling myself and comes in for cuddles... animals have such a wonderful healing power - I can't think of any more to write tonight, should get some sleep for my early appointment tomorrow morning. Thanks to all who took the time to read my first post! Looking forward to hearing your stories, experiences, advice and comments.XO
