Re: What my Hubby thinks of us who are sick

November 23, 2008

So, your knees prevent you from cleaning up the house. I bet you're faking it. Your knees aren't your problem-- it's your lazy ass attitude and the fact that you think it's a women's job to do the house work. After all, you're a man and be damned if you push the mop over the kitchen, dust the living room, scrub the toilet and bath and shower.

You bet that things pile up and become overwhelming-- you see, her entire body -- and I mean entire--- every square inch-- has been in constant pain for years. CONSTANT PAIN! It means that there isn't a "good" day-- and hasn't been for probably longer than she can remember.

For us to lose the ability to work, the ability to be the wife, mother, lover, partner, cook, housekeeper, friend, -- honey, get me a beer, my knees hurt-- we grieve this loss every day. We still fantasize about being the lover we were when we were healthy-- taking the lead, and loving you the way we still want to-- but we can't breath-- our lungs are full of granulomas-- and the weight we put on from all the fucking sterioids-- that isn't somethign we want either-- it has taken so much of our self esteem-- and you sadly remind of us that when your knees hurt.

Ok, so what to do. First-- put away the attitude. Your wife is not NOT-- faking it. She doesn't want to be sick-- and learn--educate yourself about her sarcoidosis. Start at FSR-- FOUNDATION FOR SARCOIDOSIS RESEARCH-- WWW.STOPSARCOIDOSIS.ORG and read about what sarc does. It is a SYSTEMIC -- MEANING THE WHOLE BODY inflammatory disease. It is an autoimmune process that can hit any and every part of the body-- with the sarcoidosis induced arthritis in your joints and ligaments so intense that pain meds don't touch it. You get calcified granulomas in and on the bones, so that movement is impinged by the "bone spurs." If you have it in your lungs-- your breathing can be impaired, and you can develop pulmonary fibrosis-- basically there is no healthy tissue for the air to cross and be turned into oxygen to the blood stream-- so that your legs and

hands and feet become numb-- or have such burning neuropathy like a live hot wire shooting down the calf of your legs-- and if you try to walk, it intensifies, as the vital organs need what oxygen is out there- so it robs it from your extremities.

The headaches-- that's lack of oxygen too. Or worse, neurosarcoidosis-- where you have the equivalent of those bone spurs-- in your spine, in your brain, and depending on where it the impingement is-- will determine what area of the body isn't going to function. Maybe it'll be the way you make a decision, or your personality may have changed, and you either blow up or give up. Maybe all those times you used to be able to multi-task-- you know, doing the laundry, paying bills, planning dinner, getting to your job or profession and being able to perform at an employable level-- is gone. Long gone.

My suggestion-- get TWO of those grabbers that have the extenable handles, so that Sharon can sit in her chair or bedside and pick up the laundry and get it into the basket-- and then you can carry it to the laundry room, and you can get things in the wash.

The dusting and vacumming-- you may have to have help with that-- so be thankful that you have the money to pay someone to help you. Swiffer sweepers and dusters are great- but Sharon is going to have a hard time-- as her lungs can't handle the dust-- so you may have to use the it-- but it's quick and easy--and with the extension handles-- you can do alot of it from a folding chair also.

As far as cooking, how about making it fun-- the both of you in the kitchen on an afternoon or two a week, and you make some lasagna, spaghetti, stews, casseroles, and freeze some-- that way you have a quick meal to pull out of the freezer, into the microwave, and dinner is done. Barbacue some chicken, maybe two instead of one-- and freeze one. On those nights when neither of you is doing well, tuna sandwiches are great-- you can open a can, drain the water, add mayo and pickle relish-- and stick it on bread-- add a piece of fruit or salad, and you're done.

Your wife is not faking it. That is the ultimate insult. It shows that you have not taken any time to learn about what she is going through-- and you need to do that. If you are both disabled to where you can't take care of the household anymore-- you may wnat to look into your local Adult Services Programs and see if you financially qualify to have someone come in a couple of hours a week or month-- to help out. Sometimes this is subsidized depending on income.

I'd also suggest that both of you look into some professional counselling so that you can learn to deal with a wife that has a progressive autoimmune disease.

This disease is very much like having Rheumatoid Arthritis, Peripheral Neuropathy, Dementia, MultiSclerosis, Diabetes and Fatigue that makes that very worse case of pneumonia you ever had-- look like a cakewalk. And the fatigue never goes away either.

And both MEN and women get this disease-- so are we faking it-- do we want to be sick...

Give me back my life, my marriage, my libido, my profession, my wages, my paid vacations, my career, my ability to hold and love my kids, get them to the ballgames, get your dinner on the table, and yes-- put a few loads of clothes in the washer, and most importantly-- be one with my husband in the most beautiful and sensous ways-- both physically and of the heart in a loving caring compassionate relationship-- and I'll gladly give up this disease.

Most sincerely,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis <neurosarcoidosis >Sent: Saturday, November 22, 2008 9:26:30 PMSubject: What my Hubby thinks of us who are sick

Call me a bum, but I think some women want to be sick. I paid a good cleaning lady $100 to clean the house again today! I told Sharon that i would be watching to see how many days it would take to be a complete mess again. She is so lazy and won't pick up after herself!My dad and the U.S. Army taught me to pick up after myself and do all manner of regular cleaning and repair, but now days my knees are sore and messed up. IF I could just get the minimum amount of work so as to have her pick up what SHE messes up-- that would be great. But she let's things pile up so high that they over whelm her!!Suggestions for a poor old man, please....? Sharon L. Schuckman

Trut in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowlege Him, and He shall direct thy paths.Proverbs 3:5-6sharupac@...

November 23, 2008

Thanks just what I needed from you.

I have been and am running 102 degree temp at all times, I keep choking and cannot breath without my oxygen and oh yes just today the idiot firedepartment decided to have a training session of which I can no longer breath correctly and I have an eye infection I neverhad before.

Thank you so much for words of encouragement. Sharon L. Schuckman

Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowlege Him, and He shall direct thy paths.Proverbs 3:5-6sharupac@...

To: Neurosarcoidosis Sent: Sunday, November 23, 2008 2:18:56 AMSubject: Re: What my Hubby thinks of us who are sick

So, your knees prevent you from cleaning up the house. I bet you're faking it. Your knees aren't your problem-- it's your lazy ass attitude and the fact that you think it's a women's job to do the house work. After all, you're a man and be damned if you push the mop over the kitchen, dust the living room, scrub the toilet and bath and shower.

You bet that things pile up and become overwhelming-- you see, her entire body -- and I mean entire--- every square inch-- has been in constant pain for years. CONSTANT PAIN! It means that there isn't a "good" day-- and hasn't been for probably longer than she can remember.

For us to lose the ability to work, the ability to be the wife, mother, lover, partner, cook, housekeeper, friend, -- honey, get me a beer, my knees hurt-- we grieve this loss every day. We still fantasize about being the lover we were when we were healthy-- taking the lead, and loving you the way we still want to-- but we can't breath-- our lungs are full of granulomas-- and the weight we put on from all the fucking sterioids-- that isn't somethign we want either-- it has taken so much of our self esteem-- and you sadly remind of us that when your knees hurt.

Ok, so what to do. First-- put away the attitude. Your wife is not NOT-- faking it. She doesn't want to be sick-- and learn--educate yourself about her sarcoidosis. Start at FSR-- FOUNDATION FOR SARCOIDOSIS RESEARCH-- WWW.STOPSARCOIDOSIS.ORG and read about what sarc does. It is a SYSTEMIC -- MEANING THE WHOLE BODY inflammatory disease. It is an autoimmune process that can hit any and every part of the body-- with the sarcoidosis induced arthritis in your joints and ligaments so intense that pain meds don't touch it. You get calcified granulomas in and on the bones, so that movement is impinged by the "bone spurs." If you have it in your lungs-- your breathing can be impaired, and you can develop pulmonary fibrosis-- basically there is no healthy tissue for the air to cross and be turned into oxygen to the blood

stream-- so that your legs and hands and feet become numb-- or have such burning neuropathy like a live hot wire shooting down the calf of your legs-- and if you try to walk, it intensifies, as the vital organs need what oxygen is out there- so it robs it from your extremities.