Tired of everything we have to go through

[mwkwmn]

:ybatty:I like several of you on this forum am getting tired of this ongoing battle of just trying to feel good. If it's not trying new medicine were having all kinds of test run doctors telling us they think they know what is wrong but they are not sure and then having test come back normal when we know we are hurting for some reason. We constantly watch what we eat when we eat how we eat and we still have the same symptoms. Then let's not forget the extreme fatigue we live with where it takes everything we can mustard up just to get out of bed or take a shower. This is a horrible disease that can affect just about everything we do. Then we have to live with the side effects of the medication that are horrible at times but we have little choice as we need the medication to try to put us in remission. Then heaven forbid you ask a doctor for pain medication as they look at you like your just a drug seeker out to get the next fix. I know this sounds negative but this is truly what happens to us when we are trying to find that magical combination to help us feel just a bit better so we can have a better day than the day before. The worst part of it all is when we hear the famous saying WELL YOU DON'T LOOK SICK I'm so tired of hearing that. I think over time we learn to live with the pain and suffering and we deal with it. Someone who was not sick could not live week in our shoes. I have worked sick and pushed myself till I couldn't go anymore and we should not do that to our selves. This disease is real and it can affect not only the gastro area but other areas of your body including your psychological behavior. If anyone reads this forum you will find most members on here have these very same complaints and we do not deserve it. I'm sorry for the rant but this is reality for a lot of us and I just wanted to get it out there. We have learned to be tough because we had to and we can bare a lot but every know and then you just have to blow your stack and I guess it was my turn. :hallo3::hallo3:

 

[Honey]

Hi there,
I could not have put it any better myself! You are right. It is a continuous fight as unfortunately the goalposts keep moving: just when you are doing fine, you have a bad reaction to your meds and you feel worse than before!!!! Oh yes, people tell you you are looking great : and you are on steroids to keep you able to eat,as well as powerful infusions!!!
They do not see the struggles of trying to lead a normal nor do they feel the pain!!! They will tell you how bad they feel when they have a cold!!! Yes, it is a case of 'sink or swim'. We swim!!! With a sense of humour, following our interests when well enough, cherishing the few friends who understand us, thanking our good doctors who care for us and with Gods help we get there!!!!!!!!!.:bigwave:

 

[smiley95]

It is totally a daily battle. I am thankful to be a part of this forum where we all do understand the ups and downs.

 

[2much]

Thank you for posting this...I am in a similar place now...my symptoms have never gone away completely....had a good run for a few months but now struggling again. I left work early the other day...I never should have gone in the first place but I have this overwhelming fear of not being liked...I want to do the "right" thing....
I left...my belly just hurt...had watery diarrhea with urgency....my supervisor said he was fine with me leaving but not before adding the passive dig that he will now have to work an extra few hours to cover me. I bow my head...go over and over in my head wondering if I could stick it out any longer....I, of course, want to make sure he likes me. I get that this is so irrational...and while I know that in my head...the deeper part of me is stuck in fear.
This disease affects every part of our lives...being on constant guard and making sure we are prepared for the proverbial blast out of our bodies. I am home now....I was supposed to be at wedding right now. I did not go...my belly just hurts...I am exhausted...I am sad.
I am now constipated from the Vicodin I have been taking for the belly pain. I am a nurse...I know that narcotics cause constipation and I try to offset it by taking Senna S with my vicodin but sometimes the senna just doesn't work..When I do finally break through...I end up with a dam break and experience ongoing diarrhea. I will see my GI in a month...I am on Humira every 2 weeks...I failed Pentesa, Remicade, and most recently, 6mp...did not tolerate it at all. Humira has done well for me but I am concerned that I may have developed too many antibodies and it is no longer effective. I had an ileal resection about 5 years ago....a year and a half ago I had a colonoscopy....it showed mild eryethema and ulceration. I had a small bowel follow through last fall and it showed bogginess and swelling at anastomosis site. It was not severe, but in my opinion my disease was starting to fester again. So, now I am back to experiencing pain most of the time...I am awakened at night with the need to go to the bathroom so my sleep is disturbed which then melds into my day.
Geez...I sound so pathetic....blah blah blah...all of us go through this ... I am not any different but it does make me want to just stay home and live my life as a recluse...underneath that want is a woman who really wants to feel alive and be an active participant in my life....
So...thanks for listening...sorry for the whining...I feel defeated right now and I guess whiney too.

 

[Honey]

Hi there,
Sorry you are having a tough time. You are experiencing what I said before, the hidden pain of this illness as it changes!!!!! Hang on in there, you will get better!!! I hope you feel better soon. This forum is great for sharing your feelings with fellow sufferers, although we are individuals and respond differently to treatment. Let me know how you are! Best wishes.:rosette1:

 

[lizbeth]

Think you have just described my life!! Gosh it's a tough one dealing with Crohns, I have type 1 diabetes for 17 years now, never has it made such an impact on my life as Crohns has, never a day goes by now that I don't think about, always trying to balance Crohns and Diabetes (and failing). Oh to be "normal" again, to work and to feel like I contribute to the family....someday.

mwkwmn...keep your chin up, with the help of your friends here you will get through this. :ghug:

 

[2much]

Thank you for your well wishes...Hugs to all.....this is a terrible disease that embodies our whole life...this is a great place to reach out and find the support and understanding of how our day to day life is affected. I am thankful that you all are here.

 

[Gerri]

I know how you feel. I am sick everyday of my life and the doctors can do nothing. I have Multiple Chemical Sensitivity where I was poisoned by Formaldehyde in a new mobile home in 1994. I'm so sick everyday because everything I smell triggers the allergic reactions. Even my husband won't listen nor try to understand or help me. (0 help from him) :stinks: I am sick 24/7. I was in ER last night where I so sick and depressed because I am sick all the time. The ER nurse treated me like a hypochondriac. She told me to settle down and then my husbands yells at me and tells me to settle down. No one would listen to my symptoms. They x-rayed my sinuses, said they were normal and sent me home. I didn't even get to see a doctor. I am now seeing a Holistic Consultant (for a year now) and she has me on NAC to cleanse my liver of poison. Now she is going to try to build my immune system up. MCS is a autoimmune disease. All autoimmune diseases (supposedly) come from a low immune system being attacked. What a filthy chemical loaded world we have to live in.

 

[2much]

I can appreciate how you feel and I think your choice to see alternative care is an awesome direction. They look at the whole person and not just an xray. As a nurse at an outpatient clinic I see the providers often push away a person and their complaints of pain if it doesn't show up on an xray or any other diagnostic method. Yes...people often walk away feeling as if they are unheard...it doesn't help that your spouse also doesn't support you.
Please hang in there...you are getting great help from your holistic provider...sometimes this kind of work takes a much longer time and there isn't a quick fix. Hugs to you....