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I'm the one who is sick and life is hell

By September 21, 2015 - 2:20pm

But he feels sorry for himself and all the ladies cluck around him with sympathy.

The other side: I met my husband at an ad agency. I eventually went to set agencies up (this is back when the change was being made to Macs) and he was senior art director at the last agency I had a contract with. We'd been married less than 10 years and I took all my toys and went home and put out my own shingle. Within 3 months he was working full time in our new business and within 3 years we were millionaires. It's me that drove it, he just had to show up. I took care of the office, admin, IT, home, shopping, even his clothes buying. He had motorcycles, big trucks, big BMW and we had the big house with the big art collection. We were so on fire we never advertised and could choose the clients we wanted and those clients stayed, the whole time.

In 2001, I began to get facial flushing, by 2003 I was red all the time and my lovely doc wanted to send me to a shrink because my nasal steroids could NOT be the cause as I kept pestering my doctor about (total destruction that guy), but I knew they were making me so sick! I eventually could not handle cold weather and developed bilateral atypical trigeminal neuralgia (I hid from the world for the first time the pain was off the charts). The vascular changes in me from the topical steroids is profound. I had been using ointments on my skin since 2 and had 6 surgeries for cysts and tumours on my ovaries until I spayed at 26. So we ove to an ocean front home and go broke fixing it up but I keep getting sicker. I see an ND or MD or specialist every week. My life is no longer opera, movies, dinners and quiet nights with wine in front of the fire after a wonderful day at a job I loved.

I was going down, by 2008 I was bed ridden and throwing up so much my teeth are see-through. By 2011 I am losing all my hair -- all over, not just having a bald head -- my muscles waste, my joints swell huge and I go bright red. I get topical steroid withdrawal so bad it's just too much to talk about. I hardly remember 3 years and waking up and seeing all the car changes was weird. What has been the hardest is my husband. Sweet, quiet, gentle, artist was actually a socially anxious, tightly controlling, snarky, petulant and major passive aggressive. He would do things with his silences and get people to always pity the poor man. He cared for me like a baby and I loved him so much for it. I had always loved him so crazy but his abusive nature would drive me to dark times.

Now he would be happier if I were not here. He ponders everything and ruminates to death and drives me nuts with nagging. He had to take over the entire load when I got sick, no more pampered hubby. But he was well loved and he gave that back to me the thing is that he got burnt out along the way. He is ill and depressed and we both are completely unable to work anymore. My topical steroid nightmare ended up giving me both secondary Addison’s (exogenous adrenal insufficiency) it gave me the opposing but co-existing Cushings as well. My autonomic system is a nightmare and I went from laying in bed for years to sitting up for years to sitting on the deck lounger for a year and now have sat at the deck table upright for a year. I avoid my husband as much as I can. My skin has begun the erythroderma and red burning shedding skin again (google “topical steroid withdrawal” and just look at the images results, it’s grim).

So I have an unhappy prince. I have learned he has a whole personality I was not aware of. He sees a psychiatrist and they keep changing his meds. He has so many hang-ups and is so uptight I cannot even have a balance conversation with him. Well, last night I did though. He envisions what life would be like if I were not here. He would stay in the house because he loves it and the dogs would be settled. He could afford to just be with no concerns and that appealed to him very much. I just sat that aghast and silent. I had a really rough sleep last night and today as I sit in level 8-9 pain with burning shedding skin all over me he is feeling sorry for his burden. He talks about palliative — which he thinks means they take me and care for me full time. We’ve tried in home care and it was rather ridiculous how unmotivated to movement all the women were. So I asked him last night, apart from some added sheets on the bed how much added work am I? He always asks to rub my legs and even continues while I sleep because I have such bad raynauds from it all, then the next day is tired and holds it against me — but I was asleep and did not ask for this?! I am horrified with what his feelings really are about me. I woke up this morning so freaking numb but with water-works wanting to fall at a whim so I sit outside, in the cold because my skin heat is so high I need the chill and I get miserably cold with raynauds and end up in bed with 4 hot water bottles and BP around 70/40. We talked about doctor assisted suicide. I am not going to get better and there are no medications that help me.

Apart from his love, my sweet little dogs and my peace garden — and here I thank God for disability insurance — there is nothing more in my life. I forget moments, days, whole efforts with letters and conversations but I am ‘whip smart’ at the same time. I know exactly what I am losing with my mobility due to rather bad peripheral neuropathy now, my dysautonomia, my mental function and oh my dear lord the skin where most of our autonomic nerve endings sit. I am in pain everywhere and have this man who I have no idea what to think or do about.

By December 10, 2015 - 1:45pm

It doesn't seem like life at home with the Prince is helping you. From your writing, it seems that this setup is making you more miserable. Have you considered moving into a facility that can care for you? Assisted living?

I wish you well. I hope you make whatever move is best for you.

December 10, 2015 - 1:45pm

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