Does anyone's spouse also have a chronic condition?

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
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cmoore1958
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Does anyone's spouse also have a chronic condition?

Postby cmoore1958 » Tue Mar 11, 2008 10:07 pm

I was just thinking today when I went into my boss' office today to ask for a sick day to go to a neurosurgeon with my hubby, I wonder how many of us rls-ers have spouses with chronic conditions too. This opens up a whole lot of mini-subjects in and of itself.

First is the fact that we should reduce our stress levels for our own health. Problem with that and having a spouse with a chronic illness is that our caring and worrying for them causes unbelievable stress that we cannot do anything about.

Next, who needs the most at the moment. Before asking for something for myself I consider if my hubby needs something more than I do at that moment. All of us tend to help our spouse first (especially me) at the cost of our own need at the moment. And, in a loving relationship, our spouse does the same thing. Example: my hubby does all the laundrdy, floors and toilets, as well as the "man" stuff around the house. His reason for this is my fibro acting up if I attempt any of these things and he wants to protect me from them. The flip side is that he is in pain 24/7 himself. What can I do for him to help him? His pain is not caused by exercise it is just there. Hmmm, I'll have to think on that one.

My hubby was by my side constantly during my recent augmentation and withdrawal from mirapex. So patient and kind. Now it's my turn to be by his side while we explore his medical options at this point. We will be at Baylor Medical Center all day the 27th for MRI's, other imaging and tests, and to consult with the neurosurgeon. Sitting around all day is no good for my rls or fibro. I plan on walking a lot, that is unless he needs me to be there sitting with him.

Maybe I'm making too much of this whole thing, but this is a subject I have pretty much ignored over the last years. However, I do believe it needs to be addressed within our marriage as well as among our "extended family members".

The old saying of what we do affects many is so true. There are so many things to consider and I'm sure I haven't thought of all of them yet. Just wondering if anyone here has a spouse or significant other with chronic health issues and how they find their "equal ground" during the times of trial and stress.

Love and hugs to all,
Cyndi
Last edited by cmoore1958 on Wed Mar 12, 2008 3:34 am, edited 1 time in total.
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ViewsAskew
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Postby ViewsAskew » Wed Mar 12, 2008 12:28 am

I think several of us do. I am lucky--my DH 'only' has celiac disease. So, with a faithful diet, he's well most of the time. But, the faithful diet is another story...I am mostly in charge of it. And, he does have residual problems from the many years undiagnosed. He is taking bone density drugs as we speak because he has osteopenia. Of course, that is much better the the osteopororsis he had originally. He also has many odd, undiagnosed little things....after the years of undiagnosed celiac, he tends to be a bit of a worrier about these little things.

No question....I do not come first. BUT, I put myself in that position 80% of the time, not him. Sometimes he doesn't think about something, whereas I almost always think of everything and much too often (much too much thinking in my head to my detriment).

One of the reasons this relationship works, and the last one failed, is probably similar to why yours works. We each care. We each go out of our way. He sometimes takes longer to realize something is a problem for me, but once he does? He will ensure I don't have to worry about it. And I for him.

And when it's hard for both of us? We just do the best we can and hope.
Ann - Take what you need, leave the rest

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ctravel12
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Postby ctravel12 » Wed Mar 12, 2008 1:09 am

Hi Cyn what a good thread and really can relate to this one too. Yes I have had rls really bad at one time and still gets bouts now and then. Hubby has always been there for me.

Back in May of last year I kept on hounding him to see a cardiologist as he does have heart problems (had a heart attack at the age of 46) and thought I was going to lose him. So like a good wife as I am lol I took the bull by the horn and made an appt for him with a cardiologist. I went with him to the cardiologist as most men will not tell everything and I wanted to make sure he told all that needed to be told.

Anyways to make a long story short they said he needed a stint but when they went in to do it a stint was not in order but needed an open heart surgery (triple by-pass). Well I was with him the whole way. We were fortunate as had the heart surgery was done in Phoenix at Good Samaritan. He could of had it done here but just started a heart surgery program and asked the dr how many they have done. At that time they did 55 and I asked the dr out of 55 how many of them did not survive and he said four(4). Well there was no question in my mind where he was going to get the surgery done and it was not in Lake Havasu.

He was able to get the surgery done on the 5th of June and I was with him from the beginning to the end. It was scary and am sure he was scared out of his mind so I had to keep strong for him.

The surgery was a success and he is doing so much better today. I thank God for giving him back to me twice and we have a good relationship. Like Ann said why this relationship worked is that we care and we really do care.

Thanks again Cyn for starting this thread.

Love you girlfriend
Charlene
Taking one day at a time

lorabell
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Postby lorabell » Wed Mar 12, 2008 5:39 am

Hi.
I never have gone to the Dr. with my hubby, and now, it doesn't matter.LOL
I got so frustrated with him complaing all the time about how bad he felt, but wouldn't go to the Dr.
So, when I was visiting my sister and my daughter called at 10 PM saying my hbby was in the hospital, and not to worry, but come home, I made, a 5 hr trip in 3 hrs time. I honestly thought the Dr would tell us he had lung cancer, cause he chained smoked till he turned ? late 50's and they outlawed smoking in the plant.
He had conjestive heart failure . Had ne not called 911, he wouldn't be alive .
Well, He still doesn't eat right and I know he doesn't exercise.
I will say, in my search to prove I was right and there was SOMETHING WRONG with my lega, he was witth me, all the way. So was my 2nd x. LOL
I do see, with my daughter and her husband, how hard it is. She has painfull rls, but tries to live with it, because she knows the best is yetr to come. :(
To see her, so tired, and woeking, rhwn coming home and cooking, and dealing wqith the normal life things, is hard to see.
Gotta go, I am to close to the left wall and my arms are gearing up. Love ya gf
Always remember, if you cut off your limbs, you'll have phantom rls and nothing to rub .LOL

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SquirmingSusan
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Postby SquirmingSusan » Thu Mar 13, 2008 4:15 am

Yes and no. When my dh was diagnosed with leukemia about 2-1/2 years ago, and then was in and out of the hospital for 4 months, it was the most stressful time of my life. And we've lived with the threat of recurrence every since. Last week he had a bone marrow biopsy, and this week he sees the oncologist...

So yeah, when he was really sick, I was so fatigued I could barely function. And my kids were really traumatized as well, and needed me for moral support as well as rides here and there. There were days I couldn't make it to the hospital. Honestly I don't know how I survived that all. I really gained a lot of understanding of what it's like to have a spouse with a life-threatening condition. Honestly, if his cancer recurs I'm going to need shock therapy or hospitalization!

I used to be eternally optimistic, but not anymore.
Susan, squirming Image

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cornelia

Postby cornelia » Thu Mar 13, 2008 11:54 am

I understand Susan. That is 1 of my 2 great fears. 1: Being hospitalised myself and 2: that my hubby has to be hospitalised and I can't go and see him or that he needs extra care for which a lot of energy is needed, which I lack completely.

Corrie

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cmoore1958
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Postby cmoore1958 » Thu Mar 27, 2008 8:08 am

As you can tell my the time I can't sleep. This time it's not rls it's just plain worry and anxiousness. Today at 11:30 am my husband has an appointment with a neurosurgeon to discuss options and removal of nerve tumors related to his neurofibromatosis(NF).

I really didn't think it was bothering me. But after a migraine all day yesterday and being very tired, mild rls all day yesterday, nausea, loss of appetite, etc. I figured something must be bothering me. Then we sat down at the kitchen table to complete his patient paperwork, We came to the last page where there was a diagram of the front and back of a body. We had to mark and label the sensation of the area of the tumors which are bothering him. In order to do so Rich took off his shirt and showed them to me individually. I had never really "looked" at them before as they really look like blemishes to the person who doesn't' know better.

As I marked each one of the diagrams (and there are many which bother him) I noticed for the first time how many more tumors are "new" and how many have really grown. It dawned on me that I knew the reason for all of my symptoms that day.

Now, I'm very tired and drugged so I'll sleep . . . well, I got 3.5 hours sleep so far. I'm going back to bed now to try for more before I have to get up for good by 8 am.

Thanks for listening to me and my worries. Please keep us in your prayers.

love and hugs to you all,
Cyndi (Gyndi)
Even when we are by ourselves, we are never truly alone.



My motto: It's MY pitty-party and I'll vent if I want to.

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ctravel12
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Postby ctravel12 » Thu Mar 27, 2008 2:22 pm

Hi Cyn You are definitely in my prayers and have said a few extra prayers and just know God will watch over the both of you. I wish I could be there with you but will be there in spirit.

I am so sorry for what you both have to go through and the worrisome is the worst part. Please let me know what happens and what the dr says. I will always be here for you and will always listen to you.

This is a wonderful group as you will have prayers going 24/7. They are really an awesome group, but you already know that.

Cyn here is a Memo From God
To: Cyn and Husband
Date: 3-27-08
From: The Boss
Subject: Yourself
Reference: Life
I AM GOD. TODAY I WILL BE HANDLING ALL OF YOUR PROBLEMS. PLEASE REMEMBER THAT I DO NOT NEED YOUR HELP. IF LIFE HAPPENS TO DELIVER A SITUATION THAT YOU CANNOT HANDLE, DO NOT ATTEMPT TO RESOLVE IT, KIINDLY PUT IN THE SFGTD (SOMETHING FOR GOD TO DO) BOX.
ALL SITUATIONS WILL BE RESOLVED, BUT IN MY TIME, NOT YOURS.

____________

Dear God
..............
____________

Once the matter is placed into the box, do not hold onto it by worrying about it. Instead, focus on all the wonderful things that are present in your life now.

GOD

Cyn prayer is so powerful and I know you know that. You have alot of faith and that itself will bring you through this time of your life.

Love you girlfriend
Charlene

Taking one day at a time

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Postby ViewsAskew » Thu Mar 27, 2008 5:28 pm

That must have been a very difficult moment. To see them, to realize how much they have changed and what that might mean. And, as you noted, you knew inside, but hadn't accepted it yet.

I think this may be the hard part and the rest is now putting it in perspective. It's easier at times to keep our heads in the sand, but our bodies belie that with headaches and other problems. So, it is what it is. Now, trust that the doctors will do what they do as well as they can do it. You can't make it be different, no matter how much you worry.

I am not religious in the least, but I truly believe in the Serenity Prayer. A boss gave me a copy many years ago and I realized how often I worry about things I cannot control. I am sure you know it, but in case anyone may not,

God (feel free to insert the higher power of your choice), grant me the serentity to accept the things I cannot change
The power to change the things I can,
And the wisdom to know the difference.

Let us know the outcome from the meeting with the surgeon. And remember, second opinions are very important, if only for peace of mind.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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cmoore1958
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Postby cmoore1958 » Thu Mar 27, 2008 11:17 pm

Char & Ann (and the rest of the family),

Thank you so much or all the prayers you sent up -- they were answered!

The neurosurgeon looked Rich over and talked to him a bit and said, "you're in the wrong clinic". At first we thinking "oh, no, another trip to whoever". But the good news is that the doctor said that Rich's turmors are skin tumors and it's best to just leave them alone. When they hurt or itch take over the counter drugs. There's no reason to spend the money on a body scan, or a lot of drugs for these types of tumors.

I guess there are skin tumors and tumors that grow inside the spine which cannot be seen. The only ones that need removed are the second kind. I did ask the doc if the skin tumors can grow deep and cause more problems spinal wise and he said, "yes, but Rich will be in here real quick if that happens because he won't be able to walk well and he will hurt really, really bad."

So, that's good news. Rich and I are both relieved to say the least. No more doctor visits at all or his neurological disease unless he expereinces much worse symptoms as the doctor discussed with us today. I asked if we should have a regular NF neurologist so Rich could be followed for any complications and he said not to waste our money on it. If Rich has a problem, he will know before any doctor does.

The doctor and all of his staff were absolutely great. Even though Rich has not met his deductible the lady at the front said you don't owe us anything today for the consultation. How cool is that!

So, other than being tired, we are good. We called our daughter Emily and met her for lunch then headed home. Now it's nap time. :)

(My headache is still there, I think it's fibro but that's another post for later.)

Thanks for your love and prayers. You are such great friends.

love and hugs,
Cyn
Even when we are by ourselves, we are never truly alone.



My motto: It's MY pitty-party and I'll vent if I want to.

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ctravel12
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Postby ctravel12 » Fri Mar 28, 2008 12:12 am

Oh Cyn what wonderful news. I am sure that you and hubby are so relieved.
Believe me you were on my mind all day long and everytime I thought of the two of you I said a prayer. I have always said prayer does work.

Thanks for sharing that with the family. I am so blessed to be your friend

LYGF
Charlene

Taking one day at a time

ViewsAskew
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Postby ViewsAskew » Fri Mar 28, 2008 4:29 am

Wow...all that and no money owed? Clone that man!

You both must be so relieved....and probably exhausted now that you can rest and let go of all this. Hope sleep is blissful.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

KBear
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Postby KBear » Fri Mar 28, 2008 3:11 pm

SquirmingSusan wrote:Yes and no. When my dh was diagnosed with leukemia about 2-1/2 years ago, and then was in and out of the hospital for 4 months, it was the most stressful time of my life. And we've lived with the threat of recurrence every since. Last week he had a bone marrow biopsy, and this week he sees the oncologist...


Since we got good news from Cyndi about her husband and because Susan mentioned it here I'm just wondering about the results for Susan's husband.

Susan- Please let us know how it went.
Kathy

Link to the Mayo Clinic Algorithm:

http://www.mayoclinicproceedings.com/pd ... 907Crc.pdf

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Rubyslipper
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Postby Rubyslipper » Fri Mar 28, 2008 3:25 pm

This has been a great post. Good news is always welcome and this has certainly been good news. Let's hope more is coming our way.

My hubby has CIDP which is an auto-immune disease and has been on disability for almost 10 years now. He was in and out of the hospital for the first 3 years but seems to be stabilized now. He knows his limits and as long as he stays within them, he's fine (unless he comes down with a cold or the flu). Needless to say, most attention is focused on him. Yes, I often feel frustrated and over-whelmed. Because of our situation, I have to work to have insurance. Luckily I have work I enjoy and an employer who understands. Hubby tries to understand when I feel bad but really doesn't have a clue. Since he only has so much energy, he can't help with my chores-he only has energy for his own.

I am really trying to learn to take care of myself but it's hard. I think if anyone has tips or ideas to share, this is a good thread to do it in. Thanks for starting it.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

ScooterGranny
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Postby ScooterGranny » Tue Jul 08, 2008 2:26 am

My DH has lymphoma. Currently indolent, but you just never know. We just take things a day at a time and enjoy each and every day together.


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