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Hi everyone,

I am needing some real deeeep support right now.  I have been struggggggling for so long...haven't had a period for almost a year.......severe gastro issues....alll my issues are in my intestines and my chest.  Rotating between severe sticky bloaty inflammmmation pain...to pin pricks shooooting throughout my body.

Bloating is out of control....we have not been able to relieve any of my symptoms for months  and months.....

My diet has been green mushy veggies and protein only...forever...so I know it's not diet....

I am saaaad....and feeeling hopelessssssssssss.........having thoughts that are NOT in a good place.....

Thanks so much!

Dasha's picture
Dasha

Just wanted to send you a hug and let you know that you are not alone. Sorry about your pain, I know how difficult it is to believe in recovery when things are not going the way they are supposed to go. Hopefully, Matia will find something that works for you. It takes time though, I'm also not recovering as fast as I thought I would be but I hope for the best and pray every day that things get better : )
Concentrate on some postive things in your life and keep those bad thoughts away : ) I find it very emotionally "soothing" to think about my family, who has been there for me even at the toughest times. I owe my recovery to them : )
Big hug,
Dasha

Hopeful's picture
Hopeful

My heart hurts for you : ( I hate to hear how much you are suffering. I wish there was something that I could do to really help you. 
Please try and have hope for a better future, a place where you are not in so much pain and discomfort.
You WILL be in my thoughts and prayers.
 
Kelsey
 

DLFox123's picture
DLFox123

Dear Keren,
Life is so bloody hard sometimes. I hope that what I'm about to tell you doesn't come off as making this all about me.  I just want you to know that I know what struggle is.  Strange as this sounds, I am grateful that I don't suffer in the manner that you do with IC (mine is minimal)  Please don't think that I'm gloating, for you may end up thinking that I've had it so much worse than you. (surprising how our own cross that we bare seems a lot less scary than someone elses) 
 I am 51 now, have had minimal IC problems since my late 20's.  However, at 38 breast cancer - radiation and chemotherapy.  At 44 breast cancer again - same breast - mastectamy and reconstructive surgery.  At 49 breast cancer again-the lucky 2% that gets it in the mastectamy site.  So, radiatioin and chemo again, and IV treatment for a year.  Then IC started in again and I got REALLY angry and started looking for something for all my bizar health issues - and found this place; Where I finally feel like I'm beginning to heal.
At the risk of offending your religious preference, (I am still searching)  someone once told me that we all pick the life that we're going to live and learn from.  I've got to tell you, there are days, if this is really true, that I must have been out of my own  mind.  However, there are days when the thought brings me some comfort.  Because, if true, I am on the path that I've chosen to learn from.  If I flip this into a more Christain mode, I am on the path that God chose me to learn from-either way, it's a spiritual path.  However, I know, in the darkest moments, IT REALLY TICKS ME OFF!
Please stay strong, please find your way.  We are hear to listen as you find whatever voice- that you need to hear- to know that you can do this.
Hugs - Denise

nicole's picture
nicole

Hi Karen
I know exactly how you feel. I haven't left my house in 2 yrs bc of how severe my IC is and the only place I have gone is the dentist. I take walks but i feel like i need a nap about 15 min in. As soon as I get home its to my fave spot on the couch. I have found that emotional stress makes it worse for me and also just stress in genral. Find something that brings you joy in some way bc it will save your life. I do some subliminal cds by kelly howell they help me a lot when i feel like there is no end in site. I know the dark place you speak of the first yr I stayed in my bed and i would get hot flashes non stop and the tingling the hormones are still off and they are a BITCH to get right. I am still workign on it but I can say finally its getting better. I get the stabbing pains my chest finally doesn't stab all the time but only when i am going pellets. My chest is still tight though. Things have gotten better just not totally gone. The thing that keeps me going is haging on to the little things. I mean any thing little you write it down on its own peice of paper put it up in your room or somethign so you can see it. Go through your journal and if you haven't had a journal start one and I know I know that can be depressing and sometimes hard but maybe you only write good things down if its too much. When i say good things today for me a good thing was I finally went to my neiberhors house all by myself and I didn't get a panic attack. Maybe you have a bm every day for a week. I don't know. I do know i am goign through some relationship changes and I had my period 2x this month and mine is 9 days long and heavy so there ya go that stress can cause terrible hormone changes. You will get there keep strong it takes a LONG LONG TIME. Hold on to any little thing and I hope you have some support there. I don't really have that here and i used to and i know it makes a huge difference. My thoughts and prayer go out to you.

DLFox123's picture
DLFox123

Dear Nicole,
I am sorry that you're feeling so poorly.  When I first started looking at this site six months ago - looking for answers - you were such an inspiration to me - one of the reasons that I actually got on the plane and came to see Dr. Brizman.  I kind of surfed through your entries and found such strength there - along with helpful compassion to others.  Please feel better - you've been in my thoughts.
Denise

Melsvensen's picture
Melsvensen

I am so sorry you are dealing with this. I am going to give you some extra prayers this week..  At times like this prayer is all I got, I have no smooth words and I cant say all will be well soon, because as you and I know this disease is not predictable.  I do relate and I have had some very bad thoughts this week as well, I can relate to the hopelessness.  All we can do is just keep going and at least we know we are in good hands with Matia.  Eventually..like Nicole said..in a LONG LONG TIME...we will be free of this~ LOTS of HUGS your way!!!!!!

angel's picture
angel

Hi Keren.
I dont post here a lot but today i decided to when i read your post. I am so sorry because every day i pray that nobody else in this world feels like you seem which is exactly how i feel. I have been in treatment for almost two years and my stomach still hurts every day and i eat the same thing over and over and over :(. I live so far away and i am the only patient from my country the Matia sees, i dont speak english very well which makes all this even harder. No matter i feel sad and cry a lot there is something i know for sure. SOMEDAY THIS WILL BE OVER!!!! Life will be better and all of us will smile again.I have learned that there is nobody like Matia and we are blessed we found her.I Think is all right to be sad and desperate sometimes but pls be STRONG, i am trying to be.Hope is what keeps me going, pls have hope.
Love
Angel

Clueless's picture
Clueless

Keren;
This disease is very tough to deal with.  I've had it for 40 some years.  It waxes and wanes.  Matia has been able to help some of my issues, but I still continue to suffer.  I know how discouraging it can be.  Don't forget that researchers are looking for a cure.  They might come up with something, or at least a way to control the symptoms.  Meanwhile, we just have to do the best we can with the situation.  Life is not fair, but we are all survivors, AND most important of all, we have each other.  I hope things turn around for you soon.

Keren's picture
Keren

thank you from the deeeeepest part of my soul for everyone's kindness and love.
Pain makes me crazzzzzzzzzzzzzzzy on so many levels.  I have doubts, deeep rooted fears, feeelings of being so alone, trapppped  in this awful body i call a cage...
I send each and every one of us...love and light...and to every one on this planet earth that is suffering....so much love.
Love you all from my heart and soul!!!!!!

ballerine's picture
ballerine

Hi Keren, 
I was wondering how you are doing.... My heart really went out to you when I read your post. There are some tough times to go through, that's for sure. 
I know what it's like to fight dark, dark thoughts, I have been there. And I wish you all the strength in the world... I know you are stronger than this, we all are.
So... are you feeling better?
Love and hug, 
B

Keren's picture
Keren

I honestly wish i could say i am doing better but noooo......my belly is super duper inflammmmmmmmmed....so painful....rotates between fire inside...to sticky gooooey....always 9 months pregnant bloated....can't pooop well...
my spirit is tired...my body is tired....of this....waking up and facing this without a droplet of light is soooo horrendous.....
so
over
this...wowwww
 
sending everyone love and hugs and kisssssses