My world just crushed

Posted by earthmands @earthmands, Jun 18, 2021

I turn 60 soon and have been on SSI/SSDI for 10 years for fibromyalgia. Since then, i have had no help as doctors either don't believe in it or just ignore us. I have suffered all these years and just wish this was my last birthday. Fibromyalgia, as I see in many support groups I am in, ruins relationships with family and loved ones. As of days ago I'm homeless thanks to no help from doctors. I seen some hope on the horizon as the Mayo clinic in Rochester Minnesota has a fibromyalgia clinic and research program for us. I was so excited so I called. It sounded great. The first time in 10 year's , someone that cares for us and believes. Even gave me info for housing ideas. They had me fill out the paperwork online and submitted it. I have been so depressed all these years and no homeless because of fibromyalgia. I was ready to hit the road to Rochester, then, the devastating letter in my email a short time ago.
We appreciate the confidence you have expressed in Mayo Clinic and thank you for your recent request.

 

The Division of General Internal Medicine in Rochester, Minnesota has received your information. Unfortunately, demand for our health care services exceeds our capacity. We have thoroughly reviewed your provided materials to determine if we can add further value or treatment options to your care. Unfortunately, we are unable to offer you an appointment at this time. Please know decisions like this are not easy, Mayo Clinic strives to provide the best care possible to all of those in need. We recommend you continue your care locally."

I don't have a doctor or anything. nothing, Nada. I cant find care here. I would go anywhere in the country for help and cant find any doctors that even cares. You have crushed my only hope. No doctor will take me when I say I have fibromyalgia. I need help. I'm ready to just end it.

"

Interested in more discussions like this? Go to the Just Want to Talk Support Group.

P.S. At least you were on SSDI for years. I couldn't walk to get to work but the doctor decided upon seeing me that I could work from home. (I couldn't. At that time anyway there were no work-from-hoime opportunities.) So at least you got SSDI. My brother in law is on SSDI because he's a mental case. He worked, he's not physicall disabled but he can't control himself. He was about to become homeless because we (my husband and I) couldn't take him in because he's uncontrollable. Now he's better, he asked friends to take care of him, a few of them took him in although he didn't give them anything from his SSDI income, they finally got rid of him. He finally got a very nice place to stay via the government and hopefully things work out for him. I'm sick, too, with a sick husband and couldn't cope with someone like my BIL in the house. Two of us (me and my husband) are enough.

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@hopeful33250

Hello @earthmands

Here is a social care website where you might some financial help during this time.
https://www.findhelp.org/. By putting in the zipcode of the area you are currently located you may find some help.
Will you give it a try?

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I did try. Most are for veterans. I'm not. And I plan on leaving this area hopefully next week. I used one of these last week. Free lunch there but they even said there isn't much for help here. A lot of homeless here. And most help is for single moms. They erre good people but for someone like me, were out in the cold, or heat as it is.

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@earthmands

I did try. Most are for veterans. I'm not. And I plan on leaving this area hopefully next week. I used one of these last week. Free lunch there but they even said there isn't much for help here. A lot of homeless here. And most help is for single moms. They erre good people but for someone like me, were out in the cold, or heat as it is.

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My Help Navigator powered by Aunt Bertha is a social care network that connects people and programs — making it easy for people to find social services in their communities, for nonprofits to coordinate their efforts, and for customers to integrate social care into the work they already do.

Here's the link to Aunt Bertha’s navigator: https://myhelpnavigator.auntbertha.com/

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Hi Michael I’m not sure what category my issue falls under so I’m posting it under this general discussion. I am a healthy 69-year-old 6 foot one 160 pounds I’ve had a few episodes of mild diverticulitisI in the past year since moving to Florida that I was hospitalized 1 time for. I was talked into having surgery to avoid any future diverticulosis problems, by a surgeon. I will regret that decision for the rest of my life! I’m three weeks post surgery my body is distorted. I used to have a flat stomach. I now have a bulging stomach with pain near the incision areas difficulty defecating. I have a 1 inch flap of skin overhanging on my belly! Across my abdomen I have a very low body image of myself. I’m down to 136 as I am afairid to eat ( another surgeon screwed me up 40 years ago I had hemmroids and messed up my spintker muscle and I must digitize myself every time. I can’t pass gas without doing that now and i irritated the area so bad I have a fissure!!The surgeon never told me anything like this would happen to me. I hate what he did to me I hate my appearance I could have managed diverticulitis with meds and diet. I’m going to die here ! That’s how I feel right now I was a healthy man with mild diverticulitis and I got all screwed up!

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@milddiverticulitus

Hi Michael I’m not sure what category my issue falls under so I’m posting it under this general discussion. I am a healthy 69-year-old 6 foot one 160 pounds I’ve had a few episodes of mild diverticulitisI in the past year since moving to Florida that I was hospitalized 1 time for. I was talked into having surgery to avoid any future diverticulosis problems, by a surgeon. I will regret that decision for the rest of my life! I’m three weeks post surgery my body is distorted. I used to have a flat stomach. I now have a bulging stomach with pain near the incision areas difficulty defecating. I have a 1 inch flap of skin overhanging on my belly! Across my abdomen I have a very low body image of myself. I’m down to 136 as I am afairid to eat ( another surgeon screwed me up 40 years ago I had hemmroids and messed up my spintker muscle and I must digitize myself every time. I can’t pass gas without doing that now and i irritated the area so bad I have a fissure!!The surgeon never told me anything like this would happen to me. I hate what he did to me I hate my appearance I could have managed diverticulitis with meds and diet. I’m going to die here ! That’s how I feel right now I was a healthy man with mild diverticulitis and I got all screwed up!

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Hi Michael, I wanted to welcome you to Mayo Clinic Connect. It must be devastating to have two surgeries cause additional problems leaving you with so much discomfort.

I know you are brand new to Connect so I wanted to share with you a discussion in our Digestive Health Group that has many members that are discussing their issues with diverticulitis like @hopeful33250, @s35flyer, @rubbob1 and @johnbishop. I would encourage you to check out the link below and connect with them.

https://connect.mayoclinic.org/discussion/diverticulitis-1/

Have you talked to your surgeon about the issues you are currently having? What did they say?

REPLY
@milddiverticulitus

Hi Michael I’m not sure what category my issue falls under so I’m posting it under this general discussion. I am a healthy 69-year-old 6 foot one 160 pounds I’ve had a few episodes of mild diverticulitisI in the past year since moving to Florida that I was hospitalized 1 time for. I was talked into having surgery to avoid any future diverticulosis problems, by a surgeon. I will regret that decision for the rest of my life! I’m three weeks post surgery my body is distorted. I used to have a flat stomach. I now have a bulging stomach with pain near the incision areas difficulty defecating. I have a 1 inch flap of skin overhanging on my belly! Across my abdomen I have a very low body image of myself. I’m down to 136 as I am afairid to eat ( another surgeon screwed me up 40 years ago I had hemmroids and messed up my spintker muscle and I must digitize myself every time. I can’t pass gas without doing that now and i irritated the area so bad I have a fissure!!The surgeon never told me anything like this would happen to me. I hate what he did to me I hate my appearance I could have managed diverticulitis with meds and diet. I’m going to die here ! That’s how I feel right now I was a healthy man with mild diverticulitis and I got all screwed up!

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@milddiverticulitus- Welcome to Mayo Clinic Connect. I've had several incisions across my abdomen and a bit lower and can reassure you that three weeks is a very short time to heal. You use your belly area and its muscles for about everything and it seldom has a time out. The pain will subside and if it's very bad then you need to speak with your doctor.

It sounds as if you are very proud of how you have looked. Feeling good on the inside is as important. I'm sure that your doctor advised surgery because diverticulitis can lead to peritonitis (inflammation of the inner lining of the tummy). Pus might then spread inside the abdominal cavity and even cause blood poisoning.

I have a close friend who wound up in the hospital for a week with this because he waited to have surgery until he couldn't move with the pain it caused. Since then he has followed all the diet changes and as he felt better, several months out, and was able to start to bike ride. Now He is extremely fit. You can get there again. But you have to be patient and follow what your doctor advises. If you push yourself too much you can cause more tissue damage from your operation, extending your recovery time.

You might like to read about others on Connect who have had Diverticulitis:
https://connect.mayoclinic.org/discussion/diverticulitis-1/

Does this all make sense to you?

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@amandaa

Hi Michael, I wanted to welcome you to Mayo Clinic Connect. It must be devastating to have two surgeries cause additional problems leaving you with so much discomfort.

I know you are brand new to Connect so I wanted to share with you a discussion in our Digestive Health Group that has many members that are discussing their issues with diverticulitis like @hopeful33250, @s35flyer, @rubbob1 and @johnbishop. I would encourage you to check out the link below and connect with them.

https://connect.mayoclinic.org/discussion/diverticulitis-1/

Have you talked to your surgeon about the issues you are currently having? What did they say?

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Hi Amanda I have a consult with him next week. I don’t trust him . He told me to wait a month to discuss my extra skin on my belly that I never had. Before. I don’t believe him. This was the biggest mistake of my life. I’m at the ER now due to rectal pain , Bleeding. Due to my constant digitizing myself since this surgery I can’t pass gas’s without digitizing myself. HE KNEW I had a rectal issue( that was under control) and he still did this to me. Im afairid to eat! Down to 136

REPLY
@merpreb

@milddiverticulitus- Welcome to Mayo Clinic Connect. I've had several incisions across my abdomen and a bit lower and can reassure you that three weeks is a very short time to heal. You use your belly area and its muscles for about everything and it seldom has a time out. The pain will subside and if it's very bad then you need to speak with your doctor.

It sounds as if you are very proud of how you have looked. Feeling good on the inside is as important. I'm sure that your doctor advised surgery because diverticulitis can lead to peritonitis (inflammation of the inner lining of the tummy). Pus might then spread inside the abdominal cavity and even cause blood poisoning.

I have a close friend who wound up in the hospital for a week with this because he waited to have surgery until he couldn't move with the pain it caused. Since then he has followed all the diet changes and as he felt better, several months out, and was able to start to bike ride. Now He is extremely fit. You can get there again. But you have to be patient and follow what your doctor advises. If you push yourself too much you can cause more tissue damage from your operation, extending your recovery time.

You might like to read about others on Connect who have had Diverticulitis:
https://connect.mayoclinic.org/discussion/diverticulitis-1/

Does this all make sense to you?

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Hi yes thank you. I know… I’m impatient. I just think I should have examined my options and treated this with meds, diet etc. He never mentioned to me how serious a procedure this really is. I had no idea. Stupid me I learn the hard way! I just have to move on from here. I have a very low body image(self esteem) of myself now . Thank u for your words of encouragement

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@milddiverticulitus

Hi yes thank you. I know… I’m impatient. I just think I should have examined my options and treated this with meds, diet etc. He never mentioned to me how serious a procedure this really is. I had no idea. Stupid me I learn the hard way! I just have to move on from here. I have a very low body image(self esteem) of myself now . Thank u for your words of encouragement

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Hello @milddiverticulitus

I am sorry to hear how uncomfortable you are feeling post-surgery. It certainly is true that being just 3 weeks from surgery has not been all that long. I have had three surgeries of the upper digestive tract and it took me several months before I felt back to normal again. Another member who has had several surgeries for diverticulitis is @thull. I would like to invite her to this discussion as well.

If you don't feel better in a timely manner, you should certainly consider getting a second opinion. There is a Mayo Clinic facility in Jacksonville, FL. If you would like to get a second opinion there, or at any Mayo facility, here is a link to appointment information, http://mayocl.in/1mtmR63.

Was there a resection of the colon during your surgery? Will you post again after you consult with your doctor?

REPLY
@hopeful33250

Hello @milddiverticulitus

I am sorry to hear how uncomfortable you are feeling post-surgery. It certainly is true that being just 3 weeks from surgery has not been all that long. I have had three surgeries of the upper digestive tract and it took me several months before I felt back to normal again. Another member who has had several surgeries for diverticulitis is @thull. I would like to invite her to this discussion as well.

If you don't feel better in a timely manner, you should certainly consider getting a second opinion. There is a Mayo Clinic facility in Jacksonville, FL. If you would like to get a second opinion there, or at any Mayo facility, here is a link to appointment information, http://mayocl.in/1mtmR63.

Was there a resection of the colon during your surgery? Will you post again after you consult with your doctor?

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I know I was still very sore and swollen 3 weeks post surgery. I had 5 abdominal surgeries within 13 months. After the 4th surgery when they did Deloyers procedure, the right side of my abdomen bulged out more than the left, probably because the right side is the only area where I still have large intestines. It took probably 3 to 4 months before my innards “settled” and the area looks much more normal now. But any serious pain would have me contacting my doctors or going to the ER

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