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#198782 - 02/21/11 03:09 PM Both Spouses/Partners with Disabling Diseases  
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AmyE Offline
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I'm wondering if there's anyone else out there in a marriage or relationship where both people have disabling diseases. I have AS and fibromyalgia. My husband has Primary Progressive MS.


#198821 - 02/21/11 10:15 PM Re: Both Spouses/Partners with Disabling Diseases [Re: AmyE]  
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JenInCincy Offline
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One member here comes to mind right off the bat. sequoia has AS, MS, myasthenia gravis ... her husband has RA. She typically posts in the main member forum. If you post this up there I bet she will respond, probably others will too. Sorry you and your husband have so much on your plates.


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
#198826 - 02/21/11 11:11 PM Re: Both Spouses/Partners with Disabling Diseases [Re: JenInCincy]  
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AmyE Offline
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Thank you Jen. I'll keep an eye out for sequoia.

#208708 - 05/23/11 12:11 AM Re: Both Spouses/Partners with Disabling Diseases [Re: AmyE]  
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We both have disabling diseases as well... How are things going?

H.


1998-2004 Rheumatoid Arthritis, remission 2004-2010, March 2010 to May 2014 (RA, AS, Inflammatory Arth, PsA) Enbrel user-use 25 mg pre-mixed 3x a week.(pre-mix has no latex)(Allergic to "Sure Click Enbrel"-has latex) Remicade June 2014 to current (Grandfather had AS, PsA) "We will intuitively know how to handle situations which used to baffle us."
#208835 - 05/24/11 01:54 AM Re: Both Spouses/Partners with Disabling Diseases [Re: diehardhusky11]  
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AmyE Offline
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Hi diehardhusky11. Thanks for asking. We've done pretty well for many years, taking each progression of DH's disabililty in stride. But recently I've been having a lot of uncontrollable pain, and vision problems. Stress is mounting, so things are a bit (that's putting it mildly) tense around here. I'm needing a break!

How are things with you and your spouse? If you don't mind sharing, what are your diseases? Have you found any coping strategies that work well?

#208973 - 05/25/11 05:25 PM Re: Both Spouses/Partners with Disabling Diseases [Re: AmyE]  
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Hubby has a bad hip and has had several surgeries (not just the hip, but elbow, foot, and so on).

Mine -- RA, AS, Fibro

We take turns in doing household chores... But lately, I've not been able to do anything. I have called my mother to take me to doctor's appts. That's one break for my hubby. I also asked if my mother would do some of the chores... and also be my "maid" since it's hard for me to go from one room to another.

The stress -- yes, had been mounting up big time for 3.5 months recovering from an hit and run from a car -- I'm still a long way from recovery. My hubby had become fed up lately and so I have called my friends and family if they can do something to make it easier on my husband.

Basically, communication is the key to keep our relationship in where it's supposed to be.

H.


Last edited by diehardhusky11; 05/25/11 05:28 PM. Reason: not finished

1998-2004 Rheumatoid Arthritis, remission 2004-2010, March 2010 to May 2014 (RA, AS, Inflammatory Arth, PsA) Enbrel user-use 25 mg pre-mixed 3x a week.(pre-mix has no latex)(Allergic to "Sure Click Enbrel"-has latex) Remicade June 2014 to current (Grandfather had AS, PsA) "We will intuitively know how to handle situations which used to baffle us."
#220009 - 10/23/11 01:38 AM Re: Both Spouses/Partners with Disabling Diseases [Re: diehardhusky11]  
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Artsychicks Offline
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My spouse has AS, Complex PTSD, Major Depressive Disorder and just became cancer free. I have DID, PTSD, Legg Calve Perthes Disease and Osteoarthritis. We have our good days and our bad. Jesse is on disability and is trying to learn ASL to become an interpreter. I start a new job in November after being on disability for several years. She goes through horrible flares of pain and has used MS Cotin ER, Percocet and Loritab to try and control the pain. She was just diagnosed in September with AS and actually had to diagnose herself at first. She had tons of what seemed like unrelated symptoms and after putting them all together on the internet she came up with AS. We went straight to the Dr and all of the tests proved she had AS. We definitely learned when dr's don't do anything or don't listen to push! It's how we found her kidney cancer and why we found it at Stage One.
She spends a lot of time feeling guilty that I take care of her so much but, I love her and that is what spouses are for. I married her in September 2011 after she was diagnosed and I knew quite a bit of what to expect. I love her with all of my heart. It gets hard sometimes because with my wife, our animals and our plan on me getting pregnant soon there isn't much time for me. It's a great way to not have to deal with my own stuff but, not the most healthy method! We talk about everything and communication is key! Whether it is about our sex life, children, her pain, her medications, my medications, etc... COMMUNICATION is key!

#225681 - 01/19/12 08:40 PM Re: Both Spouses/Partners with Disabling Diseases [Re: AmyE]  
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It makes it hard when the one you rely on is the one that gets sick. I have had AS for most of my life and my hubby and I will be married 50 years in July. He has nursed me through countless flares a hip replacement as well as a shoulder repair. A jam up and jelly type person. Last July he was unloading gravel out of his pickup and misstepped and fell backwards out onto his left shoulder he seemed ok, but after a few days it was bothering him so we went to a doc in a box and they xrayed it and they found a shadow on his lung. After biopsies and scans he has small cell lung cancer. He had not the first symptom. He has has 4 cycles of chemo, did fantastic, not sick once,lost his hair but he is cool with that. He had a follow up PET scan 1/4/12 and the tumor had shrunk only about 1 centimeter. It did not help that his Doc said she was disappointed it was not smaller. So since he can have so much chemo at one time he is to wait until 3/6 to get a CT scan to see "what its doing". In the meantime all the stress has me in painville and the depression is much worse in the meantime he is doing his thing,by working in the shop ect. He says whatever will be will be and I know that is true, Everytime I look at him I tear up and that makes him sad, and that is not good for him. I think I just wanted to talk. Thanks for listening.

#225688 - 01/19/12 10:08 PM Re: Both Spouses/Partners with Disabling Diseases [Re: marvsgirl]  
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JenInCincy Offline
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I can't offer any advice, just wanted to say I am so terribly sorry that your husband has been hit with such an awful illness and that the chemo didn't do much.

Of course he is right, whatever will be will be, but it's natural for you to be sad that he is sick, and to worry about the future. I know you don't want to stress him but I'm sure he understands that you cry because you love him!

Let us know how you both are doing now & then, OK? I will be hoping for the very best for your husband!


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
#228572 - 03/01/12 02:11 PM Re: Both Spouses/Partners with Disabling Diseases [Re: JohnAden]  
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AmyE Offline
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Wow, I can't believe it's been a year since I was on this list. And what a year it's been. For the past few months, DH has been in a nursing home because I cannot handle all his care at home. It's been a serious adjustment for us, mostly negative. Our relationship has suffered a lot. But we love each other and we're hanging in there. I'm facing shoulder surgery in 2 weeks, and don't have anyone to take care of me while I recover - he couldn't have helped even if he was still living at home. At least I know he would help if he could, and that means the world to me, but it's still scary facing this alone.

Artsychicks, good job with all the self-diagnosis. It's unfortunate that so many of us have had to do that for ourselves, but I'm always thankful that we have internet access and the ability to do the research ourselves. A generation ago, that wasn't possible! Any news on the pregnancy front? Keep us posted!

marvsgirl, please keep us posted on your DH's progress, and your own. I hope the stress isn't affecting you too badly - although I know it probably is. Hang in there.

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