I was diagnosed with Lupus, fibromyalgia, and Sjogren's syndrome in 2010. I have been sick a lot longer than that though, I had endometriosis over ten years before having a miscarriage and eventually total hysterectomy two years after my daughter was born. I have at least two urinary tract infections a year and get pneumonia frequently. My husband doesn't believe anything is wrong with me, he says I am a hypochondriac and it's all in my head. It's not all in my head, I have suffered for years and feel like I have to push myself to do more than I am able because no one believes that I really am sick. I am scared to try to get disability, I don't think I can afford to leave my very physical and stressful job. I also know I CAN'T keep doing it either. I am so miserable and not sure what to do.
I get so mad when I hear about unsupportive spouses. Have you ever taken him with you to your doctor’s appointment and have the doc explain exactly what having what you have does to you? I will keep you in my prayers.
Do you live in the UK?
I am sorry you are going through this. I was also wondering if your husband went to the doctor with you
Thank you for your kind words, no he won't go with me to the doctors, he doesn't trust drs. He says they are not ever going to say nothing is wrong with me because their business is telling people they are sick and if they tell me nothing is wrong they are losing money. I think as long as he tells himself that nothing is wrong with me he doesn't have to deal with it. It is so difficult to live with someone who doesn't believe you and thinks you're crazy.
I was curious about the husband going with you as well! My hubby goes with me to just about all my doctors visits and he asks a lot of questions. He has become my health partner. Also, after suffering with severe depression and therapy 21 years ago, one of favorite mantras that helps me is the serenity prayer.
Lord grant me the serenity to accept the things I cannot change.
The courage to change the things I can,
and the wisdom to know the difference.
Find your support elsewhere instead of going to the same dry well.
Soft hugs and warm wishes!
No I live in the states
Lucy said:
Do you live in the UK?
You can and you will get approved I was told in 2009 by social security that I wouldn’t be turned down and got it it took me a year but I did without a lawyer I would speak to a lawyer foradvice uunfortunately our loved ones don’t know how we feel or understand
I am sorry you feel so awful. I think you should apply for disability. I think you should quit your job too. You need to take care of yourself before you get even sicker! Your husband needs to realize that you really are sick. You should take him to your next Doctor's appointment and let the Doctor explain to him what is going on. I will tell you what my husband used to say to me (and he was a doctor) "TAKE CARE OF YOURSELF BECAUSE NO ONE ELSE WILL!!!"
I say once you are approved for SSDI, tell him he can’t have any of the money that you’re getting for the illness he doesn’t believe you have. So I guess he never goes to the doctor himself? I say get a good letter from your doctor about how you can’t work due to your illnesses and apply on line. I did that and was approved in a month. If you are denied, then hire a lawyer. I was so afraid of stopping work that I worked one more year after my doctor told me to quit and now I’ve been in a flare since. I think if I had stopped when she said to stop, I wouldn’t been in this long flare.
Hi mbmom,
Though I have not been active here on Lupus for a while, when I got this e-mail I just had to respond to it as I can relate to so much of what you are up against!
If most of us look back in our lives, we can see autoimmune at our heels, and can relate to the other illness that seem to come with a certain disease. In my 2 years here at Ben's Friends, I have moderated Psoriatic Arthritis, Fibromyalgia, and here at Lupus. Six months ago, my mom fell down the stairs and broke her hip, and I had to resign all mod posts to be there for the dear person who has always been there for me.
I have just recently returned, and am currently working with dancermom, as a mod to revive the Sjogren's, CMT, Myositis, and Lyme sites of Ben's Friends. So, what that means is that I have read thousands of discussions, blogs, profiles. Though I am not a Doctor or medical professional of any kind, it just seems to me that Endo, Internal cystitis, UTIs, Fibroids, are common with all fibro/Autoimmune/Rheumatic conditions.
With biologics ans DMARDs, we are constantly exposed to injections, as these immunosuppressants, chemo, anti-mylaria drugs lower our immune system that goes into hyper over drive with autoimmune.
I was born predisposed to autoimmune through my mother's side, and probably on my dads as well, my first scare was Rheumatic fever at age 5, but it just hit me the other day, that I lost both of my grand dad's at age 5, so how can this gigantic loss not make a child heart sick? Luckily they said I out grew it.
For my 23rd birthday, I went into surgery for an exploratory surgery, came out with a total pan hysterectomy, meaning all female organs, cervix, and appendix! The pathology was a real scare and the Dr and head of ob/gn told me that they had never seen anyone my age in such bad shape. But thank God, I had a son to live for, so I picked myself up and lived.
Gall bladder, was in the hospital for 7 days, surgeon said it was the GB, but he could not prove it, and then the surgical incision went from the front center to the back center, that it was a bad one, so I decided to live with it. 20 years later, much illness and pain later they finally admitted me once again, went through the heart monitor and all, I kept telling them it was NOT my heart, but digestive. They finally did a 'function' test, and the GB was dead, they are concerned with gangrine! Surgeon was able to do the small incisions, but told me he had one heck of a time as my liver was stuck fast to this dead gall bladder. I did the milk thistle cleanse and got my liver back again!
So I've been though 2 other rear end car accidents, pick myself up , go to the Chiropractor and keep going, but the 3rd one was the one I could NEVER get over. I swore my bones were broken, I went everywhere, locally, down to Hopkins, Univ of MD, finally my GP took a look at the 'Overlap Syndrome/Fibromyalgia diagnosis. He thought I presented with clear symptoms of SLE, Sjogrens' Raynauds, Scleoderma, RA, mixed connective tissue disease...Chiro says to this day its RSD. BUT wanted me to get confirmation from a specialist, so go to a Rheum, she tells me no Fibro, no autoimmune even though the tests came in as off the charts high for Sjogren's , no Raynaud's even though my fingers turn white and sometimes blue with cold exposure!
Then off to the neurologists, after many visits and expensive extensive tests, his dx of me was 'STIFF'! I was furious, my GP and DC were furious, went through 5 pain management specialists.
FINALLY, 7 years later, I BEG my way into the practice of an Asst Prof of UVA, and practicing Rheumatologist, he took one look at my fingernails after my completed questionaire, and told me within minutes that I have primary Psoriatic Arthrits, secondary Sjogren's and Raynauds, and Fibro, though that was the least of my problems!
I was told for years it was in my head, I was a sympathy seeker, drug seeker, bored housewife, crazy,lazy, and of course there was the STIFF!
Honey, I spilled my guts to let YOU know that I really do understand! My best advice is to 'LISTEN TO YOUR BODY' the more stress and exhaustion you put on it, the more difficult this is going to be. Find a Doctor who believes you, and actually cares for you, and take your husband in to hear it first hand! Find a Psychologist who you like and trust, who can help you with the resilience that you are going to need to get through this. I talked to a wonderful lady, my age with kids and grand kids, for about 2 years, and she did me nothing but good!
They still suspect SLE or MS in addition to everything else, so I still go for the brain MRIs. Three times lucky so far! I had to be taken off Enbrel because of either constant urinary track infections or UTIs that were just never cured, (but hopefully not IC) trouble is my allergies to so many of the targeted antibiotics. Praying I did not pick up something antibiotic resistant while at the hospital and nursing home with mom.
You have come to a wonderful place as far as this group. JC and the mods here are wonderful, the group is so caring and knowledgeable. They are going to help you pick yourself up and get to where you need to go. I am so sorry that you have to go through all of this, but you owe yourself and your child every possible chance of some health and some peace. I believe you, and I care!
Sending you some love and understanding,
SK
Thank you.
SK said:
Hi mbmom,
Though I have not been active here on Lupus for a while, when I got this e-mail I just had to respond to it as I can relate to so much of what you are up against!
If most of us look back in our lives, we can see autoimmune at our heels, and can relate to the other illness that seem to come with a certain disease. In my 2 years here at Ben's Friends, I have moderated Psoriatic Arthritis, Fibromyalgia, and here at Lupus. Six months ago, my mom fell down the stairs and broke her hip, and I had to resign all mod posts to be there for the dear person who has always been there for me.
I have just recently returned, and am currently working with dancermom, as a mod to revive the Sjogren's, CMT, Myositis, and Lyme sites of Ben's Friends. So, what that means is that I have read thousands of discussions, blogs, profiles. Though I am not a Doctor or medical professional of any kind, it just seems to me that Endo, Internal cystitis, UTIs, Fibroids, are common with all fibro/Autoimmune/Rheumatic conditions.
With biologics ans DMARDs, we are constantly exposed to injections, as these immunosuppressants, chemo, anti-mylaria drugs lower our immune system that goes into hyper over drive with autoimmune.
I was born predisposed to autoimmune through my mother's side, and probably on my dads as well, my first scare was Rheumatic fever at age 5, but it just hit me the other day, that I lost both of my grand dad's at age 5, so how can this gigantic loss not make a child heart sick? Luckily they said I out grew it.
For my 23rd birthday, I went into surgery for an exploratory surgery, came out with a total pan hysterectomy, meaning all female organs, cervix, and appendix! The pathology was a real scare and the Dr and head of ob/gn told me that they had never seen anyone my age in such bad shape. But thank God, I had a son to live for, so I picked myself up and lived.
Gall bladder, was in the hospital for 7 days, surgeon said it was the GB, but he could not prove it, and then the surgical incision went from the front center to the back center, that it was a bad one, so I decided to live with it. 20 years later, much illness and pain later they finally admitted me once again, went through the heart monitor and all, I kept telling them it was NOT my heart, but digestive. They finally did a 'function' test, and the GB was dead, they are concerned with gangrine! Surgeon was able to do the small incisions, but told me he had one heck of a time as my liver was stuck fast to this dead gall bladder. I did the milk thistle cleanse and got my liver back again!
So I've been though 2 other rear end car accidents, pick myself up , go to the Chiropractor and keep going, but the 3rd one was the one I could NEVER get over. I swore my bones were broken, I went everywhere, locally, down to Hopkins, Univ of MD, finally my GP took a look at the 'Overlap Syndrome/Fibromyalgia diagnosis. He thought I presented with clear symptoms of SLE, Sjogrens' Raynauds, Scleoderma, RA, mixed connective tissue disease...Chiro says to this day its RSD. BUT wanted me to get confirmation from a specialist, so go to a Rheum, she tells me no Fibro, no autoimmune even though the tests came in as off the charts high for Sjogren's , no Raynaud's even though my fingers turn white and sometimes blue with cold exposure!
Then off to the neurologists, after many visits and expensive extensive tests, his dx of me was 'STIFF'! I was furious, my GP and DC were furious, went through 5 pain management specialists.
FINALLY, 7 years later, I BEG my way into the practice of an Asst Prof of UVA, and practicing Rheumatologist, he took one look at my fingernails after my completed questionaire, and told me within minutes that I have primary Psoriatic Arthrits, secondary Sjogren's and Raynauds, and Fibro, though that was the least of my problems!
I was told for years it was in my head, I was a sympathy seeker, drug seeker, bored housewife, crazy,lazy, and of course there was the STIFF!
Honey, I spilled my guts to let YOU know that I really do understand! My best advice is to 'LISTEN TO YOUR BODY' the more stress and exhaustion you put on it, the more difficult this is going to be. Find a Doctor who believes you, and actually cares for you, and take your husband in to hear it first hand! Find a Psychologist who you like and trust, who can help you with the resilience that you are going to need to get through this. I talked to a wonderful lady, my age with kids and grand kids, for about 2 years, and she did me nothing but good!
They still suspect SLE or MS in addition to everything else, so I still go for the brain MRIs. Three times lucky so far! I had to be taken off Enbrel because of either constant urinary track infections or UTIs that were just never cured, (but hopefully not IC) trouble is my allergies to so many of the targeted antibiotics. Praying I did not pick up something antibiotic resistant while at the hospital and nursing home with mom.
You have come to a wonderful place as far as this group. JC and the mods here are wonderful, the group is so caring and knowledgeable. They are going to help you pick yourself up and get to where you need to go. I am so sorry that you have to go through all of this, but you owe yourself and your child every possible chance of some health and some peace. I believe you, and I care!
Sending you some love and understanding,
SK
Hi Dear,
I feel your pain. I got my gall bladder removed when I was 14, diagnosed with endometriosis at 16 and finally diagnosed with SLE at 18. I was tested for many thing for many years but my diagnosis was too much for my pediatrician to handle. As of today I have SLE, scleroderma, mixed connective tissue diease, lung diease- I need new ones, inflammation of the muscles, depression acid reflux and severe stomach issues. Lupus has also attacked almost all of my organs, heart, lung, kidney, liver, skin, bone marrow etc. My female cycles literally felt like my labor. I said all that to say this, hang in there. The first thing you MUST do is get GOOD doctors. As long as your insurance covers it, you should get tested for everything! I personally like to be admitted into the hospital and my dr will get the specialists together and have them test everything they can think of. 2, you need a good support system. If your husband doesn’t understand, bring him into the appointments with you. Have him research it. I had days when I personally couldn’t walk of move. My husband would awake to me in the corner naked and in years, unable to move. Don’t try to hide your symptoms from loved ones, let them help. I physically couldn’t clean etc so I found away to get my insurance to cover a PCA that does my housework, my personal needs, even helps with my son. Pain management is also a problem for me, so much that morphine and dilluadid don’t usually work for me so I’m in pain ALL the time. Seek help. 3- Apply for SSI & SSD and FIGHT!!! It took me 5 years to win and because I didn’t fight it all the way to court the first time, when I finally won, I missed out on about 20k owed to me.
I’d be lying if I said it was easy. I’m a 26 year old woman with an autistic child who is going through a divorce. Stress is the worst thing for you. Use this tool as an outlet! We understand! Also if you notice, a lot of us have the same dieases. Study other message boards and look up different meds, treatments, symptoms etc. you may be suffering from other things that your dr hasn’t caught yet. Best of luck!
Thank you so much for your reply! I will remember you when I pray, my you find peace as well.
fan said:
Hi Dear,
I feel your pain. I got my gall bladder removed when I was 14, diagnosed with endometriosis at 16 and finally diagnosed with SLE at 18. I was tested for many thing for many years but my diagnosis was too much for my pediatrician to handle. As of today I have SLE, scleroderma, mixed connective tissue diease, lung diease- I need new ones, inflammation of the muscles, depression acid reflux and severe stomach issues. Lupus has also attacked almost all of my organs, heart, lung, kidney, liver, skin, bone marrow etc. My female cycles literally felt like my labor. I said all that to say this, hang in there. The first thing you MUST do is get GOOD doctors. As long as your insurance covers it, you should get tested for everything! I personally like to be admitted into the hospital and my dr will get the specialists together and have them test everything they can think of. 2, you need a good support system. If your husband doesn't understand, bring him into the appointments with you. Have him research it. I had days when I personally couldn't walk of move. My husband would awake to me in the corner naked and in years, unable to move. Don't try to hide your symptoms from loved ones, let them help. I physically couldn't clean etc so I found away to get my insurance to cover a PCA that does my housework, my personal needs, even helps with my son. Pain management is also a problem for me, so much that morphine and dilluadid don't usually work for me so I'm in pain ALL the time. Seek help. 3- Apply for SSI & SSD and FIGHT!!! It took me 5 years to win and because I didn't fight it all the way to court the first time, when I finally won, I missed out on about 20k owed to me.
I'd be lying if I said it was easy. I'm a 26 year old woman with an autistic child who is going through a divorce. Stress is the worst thing for you. Use this tool as an outlet! We understand! Also if you notice, a lot of us have the same dieases. Study other message boards and look up different meds, treatments, symptoms etc. you may be suffering from other things that your dr hasn't caught yet. Best of luck!