I'm at meltdown status

[IDreamInColor]

I just have to spill it as I sit here and bawl. I've had D for years, it progressively got worse during the past 5 years until it got severe during August. I also have graves disease and D is a common symptom with graves and I always blamed it on that. It wasn't until just a couple weeks ago that I got a diagnosis of MC, I was relieved to finally have a cause and looked forward to getting better. Little did I know that nothing would help. I went gluten free a couple days after my diagnosis and I know it can take many months to heal the gut. But right now I am so tired of being sick I just can't stop the tears. I haven't been able to leave my house for months. I'm feeling like a prisoner even more than I already did. I say "already did" because I am also afflicted with agoraphobia, panic/anxiety disorder which keeps me pretty well housebound and has for most of my life.
I want more than anything to get the testing at the enterolab, just so I know for sure what my intolerances are. But having graves disease, and now MC, and the agoraphobia I haven't been able to work for 10 years, therefore extra money to pay for it is unrealistic.
Here I sit in my computer room upstairs and watch out the window as car after car drive by and I sit there crying and wondering where they are all going, and wishing I had a normal life where I could go to work, or go shopping, or visit my family, or go to a birthday party, or enjoy Christmas and holidays, just like normal people do.
And then I get mad at myself and feel guilty for having these occasional meltdowns when there are people out there who are way worse off than me, I have NO RIGHT to complain and feel sorry for myself. I just want it to end.
There really is no point to this message, I'm just having a rough day and just wanted to talk.

[natythingycolbery]

I don't have the words, but for your mental health issues I have another forum that may help you.

http://www.recoveryourlife.com/index.php?categoryid=1

It says it specialises in self harm, but it is really helpful for mental health issues.

[Joefnh]

IDreaminColor, you most certainly have the right, and might I say the need to complain.

Everyone has a need once in a while to vent. MC alone can be frustrating, having to deal with Graves disease and agoraphobia on top of that does add quite a bit more to your burden. I am actually impressed at how well you have coped, this cannot be easy for you.

I can say certainly stick with the gluten free diet as like you mentioned it does take a while to help.

Anytime you need to talk or vent you have come to the right place, I would venture to say most of us here have had at least a few days that we just want this to end...

Please be sure to call on us here whenever you need to talk.

Thanks for posting and hang in there you are not alone here at all.

Best Wishes and Dreams (hopefully in color)


Take care

--Joe

[Polly]

Hi Dream,

I have sent you a PM (personal message here on the board) .

Love,

Polly

[grannyh]

You have found the right place to vent! This site saved my life.. the hope and humor here are a real life line.

I spent years trapped in my house filling my diapers while trying to make it to the "library". I never thought I would have a "dry phart" again.. but I did! I have them often now...LOL

I have been on Entocort for several years.. and have my life back.. took a long time to get from three pills a day to two then one..

There was a time shortly before I went on entocort that I was so depressed I was ready for a sod nap.... but life turned around.. no more diapers.. I can eat whatever I want in moderation.. and enjoy "dry pharts":)
grannyh
diagnosed with Collagenous Colitis 1/2/2002 (I think):)

[Robbie]

Venting is good! Especially to a group of folks who understand. And my personal belief is that crying can be very cleansing....a sort of detox.

[Gloria]

It's certainly understandable for you to feel as you do. As Joe wrote, we've all gotten weary of dealing with this disease, particularly when we don't see any progress. I felt similar to what you're feeling as recently as this summer, when it seemed I would never get any better.

You mentioned that you would like to have the Enterolab testing, but your finances won't cover it. If you haven't seen any progress after eliminating gluten, perhaps you are intolerant to one or more of the four other foods tested by Enterolab. A test result is nice to have and saves time, but it's not essential. You could eliminate casein, the next most common intolerance among us MCers. Soy is the third most common, and so on.

This website is the beginning of your path to healing. You will eventually get better and get your life back. We are here to help you.

Gloria

[ant]

Dear Idreamincolor

Joe said it, you have every right to complain! MC is unfair and when it is added to Graves disease and agoraphobia it is three times unfair.

We are here to listen and try to help. I agree with Gloria, in addition to Gluten you might like to try and cut out the other likely intolerance - diary and soy.

I had many ups and downs (flares) while on a restrictive diet (which I am still on), but over the months very slowly, I saw a trend - less long flares - and more "firmish" (not normal) BMs. As you know, it is a long journey, but we will all be with you.

Best wishes, Ant

[JLH]

Please do try eliminating dairy and soy as well as gluten. That was what helped me. It is not much fun but I rather do without than have constant D. Also, as little fiber as possible until your gut heals.

Tex says you can get your life back. I know you don't believe it, but I am here to tell you it is true, with diet changes and the help of the PP.

[Ginny]

I Dream, it is a nasty disease and we have been where you are now; crying and wondering if we will ever get better. The suggestions about eliminating dairy & soy is excellent and most definitely stay away from fiber. It took me 8 months to get it through my head that I had to eliminate as much fiber as possible. I eat a very very limited variety of food and take my food with me no matter where I go, BUT it is worth it. GrannyH and Gloria have been through a really long process as well so you see there is always hope! Hang in there and know that we are here for you to vent. Love, Ginny

[IDreamInColor]

I am so happy to have found this board, you are all awesome and have been so helpful with this disease. Thank you all so much!

[grannyh]

Just hang in there... working with the diet helps a lot... eating a very limited diet of things that you know you can tolerate (this takes time and diligent reading of ingredients) is essential if you don't want to/or can't go the expensive drug route as I have chosen.. thank heavens I have prescription coverage! I still have to be careful and not overdue eating things I shouldn't.. as I don't want to go back to my life as it was in "diapers".
grannyh

[Gabes-Apg]

just to reiterate what has been said above


MC is a really 'crappy' disease (pun intended)
we have to retrain our brains, our tastebuds, change our routines, be organised with foods/meals/ingredients
for me i had to change the type of clothes i wear to accomodate bloating
accept the changes we have made, help family and friends accept the changes that we had to make
the symptoms can change from day to day, week to week.

(mmm sounds like a troublesome newborn )

take it step by step, day by day
some days will be diamond
and some days will be stone.

as long as there a small measure of progress at the end of each week you are on the right track.............

[Kari]

Hi Dream,

I'm not sure if this has been brought up in earlier posts, but FWIW, thought I'd mention that graves disease is often an indication that you have thyroid problems. When my eye doc first diagnosed graves for me, he sent me to an endocrinologist to have my thyroid checked. Sure enough, I was diagnosed "hyper-thyroid" and after I was treated for it, the graves symptoms went away. If you have not already had your thyroid checked, it might be a worthwhile endeavor.

Also, my sister had agoraphobia and panic disorder for many, many years. I'm not sure what she did to overcome it (she lives in Norway), but she did, and no longer has problems driving alone or leaving the house by herself.

Wishing you all the best in your pursuit of health !!!

Warm regards,
Kari

[hoosier1]

Idream,

I am melting down with you, both mentally and physically. This disease definitely seems unfair, so yes, you have the right to complain. I will shout it out with you. I'M MELTING DOWN!!! :)

My mother in law always used to tell me that if you took the problems that everyone has in the world, and threw them in a bag and mixed them up, you would always draw your own problems back out. IOW, when you look out your window at the "normal" people going by, you really can't presume that they aren't also harboring some debilitating issues, even though it isn't apparent to you. I tell my mother in law that although I think she is mostly correct, there are a few problems of mine and my wife's that I would leave in the bag. Sounds a little selfish. But that's the mood I am in today as I am also housebound right now.

So you don't need to suffer in silence. You are not alone. Everyone on this board shares your frustrations. And most importantly, everyone on this board is working collectively to help you make the right decisions to get better. Wow, did I just say that? I guess I'm not as cynical today as I previously thought. I even forced myself to go for a short motorcycle ride. It's 80 and sunny in Indiana today, so I went to the bathroom, loaded up on Lomotil, rode until I felt uneasy, and turned back for home. The sun felt great. I recommend that you also try to get yourself into the sun to soak up some Vitamin D. It WILL make you feel better.

Praying for you!

Rich