Need people to talk to about chronic illness

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infinite321555
New Member


Date Joined Sep 2009
Total Posts : 3
   Posted 9/22/2009 12:21 PM (GMT -7)   
Im on the verge of giving up...I am 28 and for the last ten years I have spent more time in a hospital bed then my own. I have Crohns and RA. How do people manage to live when even breathing hurts.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/22/2009 12:35 PM (GMT -7)   
Hugs infinite321555 and welcome to Healingwell. So sorry you have to be here though. It is miserable when you can't find the right treatment to get you into some kind of remission. And then poor you with two autoimmune diseases I am sure its even harder because you get one under control and the other flares. Are you on any medications right now? I am wondering if you have tried either Remicade or Humira. These meds would help for both RA and Crohns. Maybe you could tell us a little more about what treatments you have tried and what you have been having the most problems with.

We have alot of wonderful and supportive folks here who will be happy to share their ideas with you.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

PinkSkyCloud
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 9/23/2009 7:41 AM (GMT -7)   
Hi, I'm sorry to hear about what you're going through. It must be so tough to be in the hospital for so long. When you said you needed someone to talk to...did you mean someone close to home? or did you mean someone here? because everyone here is really nice and you can certainly post here and talk to us anytime that you want to.
Solanges: )


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 9/23/2009 9:40 AM (GMT -7)   
infinite, welcome.  Try searching for the Crohn's Colitis Foundation of America or Arthritis Foundation chapters in your area.  Sometimes they offer support groups or, if not, you can at least get to know some people through their events who can understand what you are going through.  I'm also 28 and have Crohn's and arthritis.  While I haven't spent much time in the hospital, I went from working out 6 days a week to walking with a cane (or some days not being able to walk), so it was definitely a shock and is taking some getting used to.  Don't be afraid to go see a psychiatrist or therapist, if you feel you need it.  I see a psychiatrist and the medicines he has given me help me to cope with the stress of having a chronic illness, fighting with insurance/pharmacy, and the loss of my ability to do my favorite activities.  And there are many people of here who will understand what you are going through and offer support and advice. 

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


infinite321555
New Member


Date Joined Sep 2009
Total Posts : 3
   Posted 9/23/2009 12:56 PM (GMT -7)   
Here is a good place to start I thought. I guess I just would like to hear from other people how they have managed to bare the weight of the emotions that come along with the inability to function at the same level as everyone else around them. I used to be able to bounce back from even the worst illnesses, now my body fights and to no avail to ward of a runny nose. Im only 28 yet I feel like Im 70. I am not looking for sympathy just want to hear how others have managed I guess. Thanks

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 9/26/2009 10:15 PM (GMT -7)   
I know it's been sooooo over said...but take each day as it comes. Planning never works for me, cuz I could be feeling great at the moment I think and/or make the plans, but it is only transitory. I do things when I feel good. There is an immediacy to life...and I've learned to like it. at least that is mostly how I handle it. Sometimes I cry...
oh, and a belated welcome Infinite, I hope that you like it here.
"The earth laughs in flowers"


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 9/26/2009 11:57 PM (GMT -7)   
This a great place to learn and grow. I have learned so much and cope better from it.

Hope you do too.

I try to get my rest because that helps bodies. Also have some sedentary hobbies, reading, knitting (when my arthritis hands are good),movie buff and magazine queen. Oh I started an herb garden too. I hope to do a triathlon again someday. Maybe crazy dream but it gives me motivation to eat right and walk when I can.

I have been trying to figure out how to change behaviors also, to get different results.

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 9/27/2009 3:05 AM (GMT -7)   
Hi and Welcome to HealingWell,
I also have Crohn's and RA. I have been living with Crohn's for a long time. I was just diagnosed
with RA about a year ago. i was on remicade for 5 years it worked good for me. It got to expensive so I was switched to humira which is helping me.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on Asacol, Dicyclomine,,Celebrex and Humira. B-12 injection once a month.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/27/2009 7:16 AM (GMT -7)   
Infinite, I have to agree with Becoming Undone. Sometimes its just one day at a time. I do what I can on my good days, and rest as needed on the bad. I also developed anxiety related to my Crohns, and that could make things even worse at times, because when I was sick I would get more anxious, and would get bad diarrhea and nausea, and all the other stuff anxiety could bring. And that would make things worse, especially if already flaring. I went thru therapy, and with the help of the therapy and the occasional use of Xanax, I am now able to stop the anxiety in its tracks. If you are feeling overly stressed or anxious, I would suggest you talk to your family doc about how you are feeling, and I am sure they will help.

Gentle Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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