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Saturday, October 29, 2011

Back in the Saddle

I am back on my feet, after being sick for a couple of weeks, though still not 100% well. Bob and I are once again trudging through his daily therapy routine, though I find myself tiring easily. This has all come at the worst time, as we are expecting visitors next week. My parents as well as my aunt and uncle are coming to see us--which I am really looking forward to, but I had planned to clean this darn house plus whip the yard into shape before they got here, and everything including my health is getting in the way.

This past hectic week, we spent visiting doctors, (his primary doc doesn't think Bob is ready yet to go back to rehab) plus I signed Bob up for a new Medicare plan--it's open enrollment now and the co-pays on his old plan was going up: $40.00 just to see a doctor and Bob has seven different doctors. But that's now taken care, as well as I finished up his 'disability discharge' paperwork for his student loan, which has to be done yearly. Then the wheelchair guy was over for a final tweak of Bob's new chair, and of course, the minute he leaves Bob wants it re-tweaked again, so I'm on my knees with a screwdriver, messing with the chair. Then our friend, Chris, is in the hospital with a blood clot in her leg (she may have to have toes amputated) and that has been weighing heavily on my mind and I've been spending a lot of time on the phone with her. Which also means she can't get over here to watch Bob for me, so I've been making "mini-runs" to the pharmacy/library/stores just about everyday so that I am not away from Bob for more than a half hour at a time. Yesterday, the Y-port on Bob's peg tube split in half and I had to duct tape it together to hold it closed until they can send a new one. This morning, there was a bowel movement to clean up and while I was doing that, Bob peed all over me and the bed.  aaaargh...

The other day, while I was rushing through the library to pick up some DVDs for Bob, I saw a book on the new non-fiction shelf by Diane Ackerman. Grace Carpenter had mentioned that book in a comment here, so I scooped it up as I stood in the checkout line. The book is called "One Hundred Names For Love" and billed as "A stroke, a marriage and the language of healing". The jacket says the author's husband suffered a massive stroke and severe aphasia and she "designed" a therapy for aphasia with "astounding results". So, of course I checked the book out, hoping to find out something useful for Bob.
I don't have a lot of free time to read, but figured I could read it over breakfast bit by bit. Well. This book has brought out some weirdly strong emotions in me and I'm only 60 pages into it. Of course, the beginning is all about the stroke itself and backstory about the two of them, but I find myself becoming insanely jealous.

Yes, jealous of another woman's husband's stroke. Which is really weird when you think about it. Is there even such a thing as "stroke envy"? Or have I invented it?

But here her husband is, right after having a "massive" stroke, and he's walking---walking!---to the bathroom! And I can't believe it. He's walking, albeit wobbling with an aide's help, and he can go to the bathroom so he can control bowels and bladder and lordy, I am jealous. Not only that, but he can eat scrambled eggs. He can eat! She says he has a swallow problem, but he's eating at least something. And she's moaning about the possibility of sending him to nursing home? Then there's all these references to their posh house with a pool, not to mention the fact that she's making money off this book and here I am trying to figure out  how to pay the car insurance which is due next month, while the phone rings with creditors. And of course, all the doctors that treated her husband were so great and Bob had to deal with a bunch of white-coated idiots. Then, the next scene when her husband starts to move his arm, while still in acute rehab---I nearly threw the book across the room! (Why couldn't Bob have had a stroke like that?! gaaa!)

I guess I'm just throwing a bit of a pity party here. And probably more than just a bit of professional writer envy. (Heck, I should be the one writing a darn book!) I need to find a book about someone's stroke which was worse than Bob's, then I'll feel better. But I'll keep reading it, because I haven't yet got to the part about her innovative aphasia therapy and that's why I'm reading this darn thing in the first place....

Well, I gotta run because I'm doing three loads of pee-soaked laundry and still need to try and clean this house up a bit.


Anonymous said...

Hi Diane,You should just write a book from your BLOG. So many great stories & truth. There is so much feeling in your blogs. Hope you both can enjoy your company. Hang in there. Love you Neta

Nikki said...

Ugh, makes me think of this book I read about a woman who went through a really stressful pregnancy and almost lost her baby several times but she went on to successfully give birth. I guess I have "rough pregnancy envy" because I've done nothing but miscarry repeatedly and they can't even find anything wrong!

Anonymous said...

Hey there. I agree with the first comment Diane you SHOULD write a book from your blog. I find myself looking forward to each new blog. And when I read it I feel like I'm reading a good book.

I'm not saying I enjoy and feel happy for your very tough times, I'm saying you are very talented and have the ability to present your story in a engrossing way.

I hope you understand what I'm trying to say here. I wouldn't want to lose my best Tough Bitches friend! Ha! Ha! Take care Patricia

Grace Carpenter said...

I'm sorry about the book! I should have mentioned some caveats.

Sometimes I get engrossed about books about strokes. Other times I want to throw out the book.

If another person tells me that I should read "My Stroke of Insight," I'll barf.

Throw out the book! I'm sorry.

Diane said...

Grace, no need to be sorry! I do appreciate a good reference and am still reading it, waiting to find out something useful..... and hoping there is, before I throw it out.

Thank you,

Anonymous said...

As others have said, I too think you should write a book based on the blogs you have written. You write beautifully, insightful, and even very humorous points about a very difficult situation.

A point to remember, and I'm sure you do, is that there are so many serious levels of how a stroke affects a person from minor to exceptionally serious, even death. Though very serious with Bob, you both have done fantastic in dealing with his symptoms, and his progression is even beyond what the so called professionals felt were possible. Don't ever give up, and do write your own book. You can even put my name on the list of the first to buy it. You are Bob are both very remarkable and I am proud to be a friend. Hugs, Caring1 (Dan)