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I get so tired of everything...



Sometimes I just want to walk out and never come back. Sometimes I think my brain is shutting down. I've been on a bit of a crying jag this last week. It started a week ago last Wednesday when Dan started having severe lower abdomen pain right after I got into bed. I got up and nothing would alleviate the pain and he didn't want to go to the hospital. Finally after three hours of moaning and groaning in pain he agreed that he needed to go to ER. Called 911, sat in ER until 5am when he was moved to IU University hospital and admitted. I finally got home and into bed around 7am. The first diagnosis was that the CT scan showed infection at his colectomy site, possibly ulcerative colitis or crohns. Next diagnosis was a UTI, cultures needed. I have to admit I was slightly happy that he was in the hospital because I thought I was going to have about a week at home with peace and quiet. Next thing I know it's Friday and they're sending him home Saturday. I had one whole day of peace and quiet.


Then comes the pouchoscopy. Well, I've never heard about this one before. Since he doesn't have a colon they use a scope to look at the "pouch" left from the colectomy. It's actually his rectum but they call it a pouch...whatever. The final diagnosis is that he has crohns in his pouch, it's horribly diseased. There are two options: Remicade infusions or surgery. Remicade infusions would be one a week for three weeks followed by an infusion every eight weeks. This is a very toxic drug that can lower the immune system. He had two Remicade infusions in 2011 and he developed sepsis and almost died. Because of this the doctors are all recommending surgery. If he has surgery and survives then the whole cycle starts all over again. He'll be in the hospital, then a nursing home while he heals, then rehab because he became so weak from lying in bed for so long.


I feel bad for both of us. For Dan because it's his brain that is damaged and his body that has been partially gone for almost four years. Then this morning he has a lump at his gtube site with puss coming out of it. The GI doc is sending him to an infectious disease doc because of all the infections he's had in the past. I'm so tired. I'm mentally and physically exhausted. I've been so exhausted that starting today I've got someone coming in for an hour at 6pm seven days a week to get Dan into bed.


Hopefully I'll start getting some rest. That said, I'm headed to bed. If I were a drinker I'd have a good stiff shot of something. Good night and sweet dreams to everyone.


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MaryJo sometimes in Ray's bad times I got so tired I howled like a dingo, only the primitive keening of loss and distress seemed to help. I must say it scared the living daylights out of Ray though.


You are living through hard times when every decision is one you ought not to have to make. I used to feel at such times as if I was living in a waterless wasteland. See if you can get someone, maybe a family member or a counsellor to help you work through the decision making and the process you both have to go therough to get this problem fixed. I know if it were me I would not be able to do this alone.


As usual thinking of you and praying for you.


(((Hugs))) from Sue.

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I know what you mean about being secretly glad about a hospital stay for our husbands, sad but true. I was looking forward to Ray's three day test this week but ended up having to run there to calm him down so many times that I was glad to just take him home today. He's supposed to do a one night apnea test in the next week or so too, not sure I can handle the drama at this point. And it's the same hospital so for all I know he's blacklisted now.


We were supposed to go today to see about the day care facility but I had to cancel. Really should have been the other way around, you know you need a break when you're glad your husband is in the hospital!

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Mary Jo, how difficult this sounds. I'm so glad you've taken the step to get help for bedtime. It's a small amount of time but just to off-load that task will provide a bit of respite. I hope you get rest too. For me, when significant lack of sleep becomes an issue, everything else goes south.


Lauren had sepsis once too. Very serious stuff. He was one step away from a ventilator with that episode.


Keep us posted. I wish I could help somehow but I can only care. So sorry for all you are facing. ~~Donna

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mary jo ,, i am so sorry for all this mess... it just never ends.....the stroke effects so much.. people just think limbs i think about the internal organs like what you guys are going through... i look at my dans affected leg from the stroke and see the circulation or lack of , and know pretty much every organ has that same circulation issue to some extent... so what is minor to the rest of us is huge to someone affected by stroke... i know i am preaching to the choir, honey ... i hear your cry , and i cry with you...nancyl

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Mary Jo ::


I am so sorry for all your troubles. you & Dan will be in my thoughts & prayers for quick recovery.



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Mary Jo, I have read your story and can feel the kick in the stomach you must be feeling right now. Whether they are in or out of the hospital, as caregivers, we are never off the hook. Our turmoil & heartbreak we feel for our loved on goes on and on, and you have the accute faze of caregiving on your back right now. I can only pray that things will right themselves, and you can return to the 'simple life' of caregiving, and even that is total sacrifice afterall!

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Mary Jo: was going through a bad spell myself past few weeks, but your blogs certainly centered me. When Dan has an issue, it is truly an issue. So sorry honey and good for you for having someone in to help you out. Please do use that time to get some rest and maybe, if you can afford it, consider may a couple of hours one day during the week. you need some time for a hot bath, some reading and a nap. Please know you are in my thoughts and prayers. Debbie

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