Why continue

Support
1

for 5 yrs i have been diagnosed with fibro, chronic fatigue, sjogrens, psorasis -- and all side problems ibs, abdominal pain, headaches, fainting, breathing issuses, and the list goes on and new health issues present themselves

i had a job 6 figures and got fired due to inability to keep a regular work schedule --of course due to my illnesses --- worked there for 23 years - devastating does not describe how losing my job felt

no one from work bothered 2 call, email, or contact me in any way ---i guess no real friends there

no other friends from other areas of my life

my side of the family is non existent in my life - i call my mom 1 every month just 2 chk up on her --- but honestly i dont care

my husbands father and brother call every so often and ask about me

my husband - pooor guy -- has done alot for me --- however my illnesses have done drasticly bad things 2 our relationship -- he deserves so much better than me

he hates being my care taker

we are more roomates now than husband and wife -- sex??? what is that

financially my illnesses are killing us -- bankruptcy seems to loom ahead

all our dreams are gone - what we wanted to do and how we wanted to live

i talk to a pyschologist every week - because i really dont see a reason to stay here

all those people who say --use your mind to overcome the pain ---- it is what u eat and drink -- these people cant have serious case of this illness - because neither works -- -i want to scream at them

my pain is so great u cant get up to go to the bathroom, i cry every day from pain. i want to go to sleep at night and not wake up

yes i am on drugs and tried many different ones over the past 5 years seen multiple doctors and many

specialists

no real success

applied for disability

,,,,,,, so why continue

2

BJH - I'm new here. Wish I didn't have the issues that led me this direction, but so far this seems like a nice bunch, good topics, hopefully good info. I was glad to see this topic here, too, about emotional support, where you decided to post. I wanted to acknowledge you that I read your post. I understand, even if I am not in the same boat. I do hear you. I wish I had answers for you. I don't, but you do have my support. Today is not a great day for me, but I have had worse. It sounds like you were pretty down when you wrote this. It's been over a month since you were here. I hope you've had some improvements. Wish you the best. Hang in there, ok?

3

Hello bjh

I am so very sorry for all that you have lost due to your diagnoses. Many people on this site will be nodding in agreement and wishing they knew the magic way to solve all these........but we are all seekers on this same journey with invisible chronic illnesses. It's quite a shock that after 23 years of working for the same company that after you left not one person contacted you. That's a deep hurt. Often families and even spouses have a hard time accepting that we are sick because we don't look sick.

Hopefully as you reach out to people on this site, you will find support, understanding, acceptance........and hope.........one day at a time. That's how all of us live.

Come and join us on our journey with invisible chronic illnesses and PAIN.

A gentle hug

Rachel

4

There is no hope, you are fooling yourself if you think there is....

I have continued to try and survive this...... but the latest straw is my husband not caring anymore

He sleeps in another bed

He gets up in am and comes and gives me a kiss on the cheek like you would a child

He doesn't ever call home during the day and check up on me ( he did this in the beginning)

We were invited to a xmas party and he did not even ask me if I wanted to go - he just decided he would go alone

He told me he had to arrive early to the xmas party due to some meeting they were having, so instead of being there at 7pm he left our house at 430pm to be at the party by 530pm.

At 1130pm I had not heard from him, I called him and it rang until it went to voicemail. I tried again, and this time it went straight to voice mail. 30 minutes later I called him again and this time he answered - he said - I am now just leaving the party I could leave earlier it would have been rude.

He refuses to discuss the fact that he didn't answer his phone when I called or why he turned it off. (which until this point he always has answered when I called)

When he came home there was no apology, nothing...... if fact he was was is a REALLY good mood, like a boy who just got his cherished xmas gift

The next day all he did was lay in bed and did no work around the house as he had promised he would do - remember his bed that is upstairs

We have 3 dogs to take care of, he did not care --- i ended up feeding them, taking them potty, loving them, etc. All the while he lays upstairs in his bed doing what????????????????

I hate my life

I hate my life

I don't want to be here anymore

And NO time has not helped anything, it has made it worse

5

Well I am sorry to hear that. I can only say that I hope you have family, friends, or church/minister to turn to. I will continue, for myself, to have plenty of hope, thank you kindly, and no I am NOT fooling myself. We are in different situations, you and I. I'm sorry to hear what you are going through, but that's not related to Fibro. This is an issue between you and your husband. Good luck and good faith. I wish you both. I'd like to suggest you get counseling immediately. I am actually going to be starting this soon myself, so please don't be offended that I say that. You have severe depression issues and you need help. You have already started doing that by reaching out to us. Now you need to take the next step.

6

Okay, I have groused about my response to this post since I made it. I truly hope that it did not come off sounding too harsh, as that really was not my intent. But then I just logged in tonight and I saw this come up on the welcome screen and I thought this would make a nice addition. You are not alone. Depression, stress and pain are hard, and I think everyone here gets that. We understand. You reached out to us, and we ARE HERE. So I am adding this to my above comments:

Living With Fibro Gang,

Depression is a difficult challenge that many of us who live with chronic pain deal with. IF YOU ARE IN IMMEDIATE NEED OF HELP OR JUST NEED SOMEONE TO TALK TO, please feel free to call 1-800-273-TALK for members in the United States, or for international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call in your country.

7

Dear BJH, How my heart aches for you. Would like to be able to sit with you and just listen to you cry and give you a gentle hug. Having worked as an RN for over 30 years I would often see pts come in with the same over- whelming feelings that you are having now. While I was truly sympathetic, I couldn't truly understand. I can now be truly empathetic. I have been suffering since 2003 but not dx until 2009. No, the meds don't truly help but I am working with a wonderful Christian man who happens to be my rheumatologist. His staff pray every morning for their pts! We are going to be trying some combinations and hopefully something will help a little more. As I told him, I don't expect to be pain free, just to have pain that is around a 3-4 and not a 10 and some days that are a little better than others.

I have been truly blessed that my husband has always been there for me....he took care of my colostomy in 2003-2005 and after the reversal...and thru everything since. No, we haven't had sexual relations for years, but our marriage is strong and we have more intimacy than alot of people I know that do have sex...and not because they want to!! So for those I know for whom it's a chore or something they feel they have to do for their husband, what kind of intimacy do they have? Yes, your husband is a unsympathetic and selfish jerk. But don't let him steal your joy...whatever it may be. Find things that will bring you a smile every day! Just one thing sweetie. Maybe from a comedy movie, a book of jokes, anything!!

You may not be able to do what you did before, but there ARE things you CAN do!! Find one thing each day to have an attitude of gratitude about. It's hard some days, but you can! I know many of us who have had hopes and dreams, but have had to change them and have new ones! And it looks as if you do have alot of people here who are supporting you and do care! One thing to have an attitude of gratitude....55 of them!! Know there are people who are praying for you and hope you have a Higher Power too!!

Blessings to you BJH!

8

I completely understand. I was diagnosed in 1995. In 11/07 I was Laid Off. I have exhausted ALL my savings, pension plan, sold jewerly,etc. so I could simply exist. Finally this past May I was awarded?? - Social Security Disability. I tried to get Medicaid = NO, your ss check is too high to apply?!! You can only get Medicaid if you never worked much or are an illegal alien or A Madonna with children & a baby every year. I was temporarily awarded $16. a month in Food Stamps. I humiliated myself for nothing.
Be grateful you HAVE a husband, some family,and health insurance.
Beth

9

I definitely hear your frustration McBeth607. When did you initially apply?? How many appeals? I am glad you were finally awarded, but cannot imagine how hard it must have been for you.

My mom worked since she was a teenager, but at jobs (like dairy farm, etc) that didn't take out, of course. Then supported one husband by working beside him day and nite to not have anything taken out, so no credits. So in her 70's she was still working until her COPD wouldn't let her do it anymore. So we finally get her SSI (and the amt that comes out for Medicare kills her) and she was given about $10/mo for food stamps. You're right, it's unbelievable when you go back and read the qualifications for SSDI vs SSI. Don't worry about overhauling the whole damn health insurance, stop giving it to people who are not legal citizens of the U.S. or a 20 something totally capable of working but has 3 kids, cell phone, bling, nails done and gets pissed when she doesn't get her service (like it is a damn gold card) as fast as she would like it. Or come in because she broke her freaking acrylic nail....I do not lie about this and wanted Worker's Comp for it because she had allegedly hurt it during one of her shifts (12-16/wk) at KFC!!!

Sorry for venting. It just is heartbreaking to hear how our system hurts the ones who need help and reward the ones who don't. Let US take over the reform!!!!

Take care!

10

I applied in 2008. Was denied. Was lost in the ‘waiting game system’ to get an appt. with a judge in Fl. I moved to NC 10/2010 & met with a judge & awarded Soc.Sec.Disability 5/2011. If I had worked LESS, I’d get Medicaid. I had Medicaid for a month & just received notice that I would not have Medicaid benefits until I met a deductible of over $7,000. Unbelievable.
I don’t even know the difference between SSI & SSDI ? Which do I have? I’m easily confused.

11

Oh the bureucratic red tape that delays, prevents the very things that a person needs to LIVE!!!!

I don't think it matters what country you live in.........Canada where I live or the USA.

I'm sure there are other countries with the same problem.

I am so very sorry for the pain this has caused so many people.

12

SSDI is Social Security Disability Insurance and SSI is Supplemental Security Income. If you went before a judge you were awarded SSDI for a disability. The Soc Sec Admin (SSA) automatically processes your claim to see if you are eligible for both. SSI has to meet certain income and asset restrictions. I don't know what the current amt is (something they call the FBR) but in 2009 it was $674 per month/individual. With SSDI the income restriction is limited to around $1000/month. I don't know much about Medicaid....I know they allow certain assets, such as home and car, but virtually nothing else!! And even though my mom ONLY had her home she still only gets around $50/month now in food stamps and they are evaluating her at age 82 to see if she is still eligible for her SSI!!!!!! Give me a break!!!! Investigate the freaking fraud going on!!!!!

I don't know your age but check to see if you qualify for other benefits other than this or what your options might be. It sounds like a Medicaid "spend down" where you have to get your assets/income under a certain amount. Find out if that is your case.

Take care and good luck to you!

13

Dear BJH,

Just wanted to let you know that have had you in my thoughts and prayers and hoping that you are finding a little more moments of peace each day. Hope you hear from your disability soon too. Take care! Hugs, Bonita

14

Hi there my name is Shannon and i can under stand how you feel but what i don't get is why you had said"you didn't really care" if you don't care ...how can anybody else no-one cares really for me either. but i was just married and he loves me. he is all i have well. and my kids.my family is not around and nore do they really care .but i am still fighting..yes there are days i just don't want to be here this i sware .but for some reason just when I ready to give up, I found this site, no i am not you daughter nore am i you sister or mom but i am Shannon and if u need a real person who knows what you are going through i am here. and NO I do not doubt a word you say..you can have a friend in me if you want it...hopefully your friend ...Shannon...give this site a chance...

15

Hi Shannon and BJH! I hope you will check out the new thread started called Moments of Peace, Happiness and Cuteness! I was able to get a smile for my day! Something that I look to do every day in spite of the pain. I might not be able to find an hour without pain somedays, but I can always find at least moments of peace! Take care and I wish you moments of quiet strength and peace within, Bonita

16

I am just reading some responses left here from a message I posted Dec 5. Isn't this suppose to be a support group??? If you don't have anything supportive to say to someone's message then maybe you shouldn't respond to their message. There is nothing worse than having people who are suppose to know what you are going through saying negative crap to me. From Jenji - 'go see a counselor' -- I have been for quite some time and already have the talk line info. Your second reply -- was that an attempt at an apology???? Keep it. I don't need support from a person such as you - judgemental and angry.

And McBeth607 - I didn't write my message up here to prove to you that my world is worse than yours or anyone elses. You don't have a husband, or family, or health insurance - and nd your point is that I should bend over and thank God I do because you don't have it. So again if you have to do jabs at the end of your message that are negative to the person who originally posted the message, then keep it to yourself and don't contribute to the message.

I write to vent and share - if you don't like it, or have nothing supportive to say, then bypass it and move on to the next message.

Jenji said:

Well I am sorry to hear that. I can only say that I hope you have family, friends, or church/minister to turn to. I will continue, for myself, to have plenty of hope, thank you kindly, and no I am NOT fooling myself. We are in different situations, you and I. I'm sorry to hear what you are going through, but that's not related to Fibro. This is an issue between you and your husband. Good luck and good faith. I wish you both. I'd like to suggest you get counseling immediately. I am actually going to be starting this soon myself, so please don't be offended that I say that. You have severe depression issues and you need help. You have already started doing that by reaching out to us. Now you need to take the next step.

17

For all those who replied with supportive and positive comments to my messages -- THANK YOU!!!!! Your prayers, blessings, supportive words meant so very much to me.

18

Wow.... I sure do hope you might consider going back to read my first initial SUPPORTIVE post. I actually had to go back and reread everything I typed. Counseling can be a very supportive tool during our fibro struggles. That was not meant to be offensive. It is part of the foundation of this whole site, as referenced in the link I included. It's unfortunate that we don't see eye to eye. However, it was not an attempt at an apology, no. I meant everything that I said, even after rereading it. I was and still am supportive. I said I was sorry to hear what you were going through, not that I was sorry about my posts. I had just hoped that it was well received from you. Guess not. I realize that this could probably go on and on, and I hope that it does not. Just was hoping that this post would put it in a different light for you. Best of luck to you. Be well, Jen