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Sunday, October 11, 2015

At Home

Getting home has been hectic, stressful, and wonderful.

 The first day was hard. Navigating new spaces, bumps, and blockades. 

It was especially hard until I realized that I had become sangry--sad and hungry. Skipping lunch is a bad idea when you're moving. 

I expected challenges with the transition for all of us, so I'm trying to keep a level head and be patient. It can get hard when family is involved, but we've done a pretty good job of keeping it together so far. However I am reminded of the Real World tag line, "when people stop being polite... and start getting real."

One of the stranger things that has happened to me during my institutionalization is the effect that sensory deprivation has had me. I was sitting in the living room the second day I was home and heard a strange repetitive noise I couldn't quite place. I yelled to my dad, "Is the dryer on?" Yep, I hadn't heard that rolling scratch in more than a year and couldn't quite place it.

The past couple of mornings in the quiet of my room I was bothered by a strange repetitive noise. Was the phone off the hook? Was a car alarm going off somewhere? Was it my daughter's alarm? I kept asking my aide if she heard it. She didn't. Until finally close to the end of my morning exercises, she said, "I think it's the ceiling fan. They do that when they're on low."* 

My daughter took a walk and brought the sunrise.
I suppose inmates of any kind become used to an environment that is less than the outside world. It's so strange what is excluded. The big things seem obvious: weather, decent grub, novelty, privacy, spontaneity, commerce, travel, free will, responsibility. I didn't realize how many of the little things I never knew I missed.

My taste buds have also changed. They are more sensitive, disliking much spice, salt, and sugar. I ate a black olive, historically one of my favorites, and I was overwhelmed by a wave of salt and brine. Luckily, I still liked them on pizza.

The best thing about being home is being here.
I'm able to have small special moments creating lovely days. 
A walk and a game of catch.
Cooking meals and birthday cakes together.
Hanging out while a kid lays on my bed and pets the cat.
Family movie night.
Family dinners.
Watching baseball with my dad.
Morning chats with my mom.
Rolling to the store and picking stuff up.
Seeing the blimp filming the decimation of KU football by Baylor.
Meeting a friend in a parking lot.
Getting to try candy corn M&Ms**
Learning to do basic household tasks in our new house.
Working to be a mom and daughter again, not just a patient.

The complexity of daily life can be overwhelming, but as I grow stronger I hope to handle it with aplomb. I can always hope. Accidents, misunderstandings, and mess are inevitable, but I suppose that's the fun of the life on the outside. Sometimes fun is spelled "fun."


I am also blessed by so far getting some things I never expected, but wished and hoped for.
I have a crack medical team.
I have kind (prompt) aides who work hard and are willing to learn how to help me.
I have a visiting nurse comes three times a week and collects necessary labs too.
I have an awesome primary care physician*** who had already hooked up my prescriptions by Monday**** as well as referrals to a Urologist, Neurologist,  Clinical Dietitian, and a sleep study for Sleep Apnea*****. 
I also am receiving occupational and physical therapy in my home. Yep, I went from expecting nothing to getting more than I hoped.
I have learned the system for reserving rides through my insurance and through the public transit system. Since I'm pretty chatty, I got tips from the dispatchers on how to get seats.

So many things have fallen into place  more quickly than I ever expected, but some pieces may take a while; however if there is  one thing I've learned throughout this ordeal is to have patience. I'm so not perfect in that regard, but I have a little help to get me to a place of acceptance and appropriate action. I've got Grover and prayer, and if that's not enough I always adhere to the maxim "Better living through chemistry."******

Grover
Right now life is pretty busy. My aides come twice daily for about 5 hours between the two shifts. My nurse visits thrice weekly. My case worker visits weekly. My OT visits twice weekly and my PT thrice weekly. I'm lucky enough to have several doctors appointments lined up in the next few weeks. I'm trying to cook two or three meals a week for the family. I also am trying to parent again, not just be a visitor in my offsprings' lives. Overtime, all the visits and therapy will likely decrease.

So I'm busy and happy, yet I also need to make sure I take care of my body as it readjusts to a normal life. Often normal is spelled "normal," but that was always true. So I'd love to see people who'd like to visit, but right now is a little soon. When the pace slows down and we're all more settled in, I would love to see anyone who would like to stop buy. Hopefully in the not too distant future, I might even get to visit some of you.

I'm so grateful for all the support I have received so far on my journey. Hopefully I can still get some virtual hugs as this next stage begins.

I'm off to finish Grandpa's birthday cake and makes some loco moco for dinner. Hopefully, my sous chefs are ready to go. Please forgive any typos; Grandpa deserves a good dinner for all he's done for us. Mahalo!

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*It reminded me when I returned from Korea one time. I was in a room where a television was on, but I was facing away. I heard a waterfall of lovely syllables. I turned towards the screen and realized the characters were speaking English. Then I could only hear the meaning, not the sound.
**Pretty sweet, a little weird, not bad mixed with popcorn. It seems like white chocolate with cotton candy flavor. It was a good treat for watching Star Wars. I just had to try them, but I think I'll be able to pass next year.
***The social worker at the nursing home claimed that my prescriptions had been sent to a pharmacy in Lawrence. Yeah, not so much. They didn't even call to let me know that I have a "heavy staph" infection in my lungs. They definitely didn't call in a prescription. Luckily, my doctor or one of his competent assistants got me hooked up with some antibiotics. 
****My insurance won't cover my machine out of the nursing home because my diagnosis from the hospital was not a complete sleep study. Sigh. The nursing home found out weeks before that I was denied, but did nothing to sort it out before I left. Social Work blames Nursing, Nursing does nothing, and nothing gets solved. I'm glad that hasn't been a problem here yet. I totally just knocked on the closest wood--my head.
******Hi Mom and Dad! See I was listening!


Tuesday, September 1, 2015

More Good News

For those of you who have been following along, we have rolled* a bit closer to the finish line. Today a home health agency has agreed to take me on as a client! The durable medical equipment is on order and we are just waiting for all the pieces to come together.

It's hard being this happy. I have waited so long and have held back my longing as best I could for so long. Now, we are so close to the finish that I'm elated. So elated that I have exhausted myself at the end of this day.

This is what my father used to say to me at night.  I hope to find more funny things tomorrow.


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*I was going to say one more step has been taken or some other footist nonsense, but I realized I've got to own my mode of travel in this life and so we shall all roll together. 

Monday, August 31, 2015

The End is Nigh

Nope, it's not the Apocalypse people--it's good news!
Today it is confirmed. The bed is approved, funding for other items I need is available, and transportation home will be provided by my insurance company!

Yay! Items need to be purchased and delivered, medications need to be forwarded to the pharmacy, and a home health agency needs to accept me as their client.

Here's one you know I'll be reciting often.
Yep, I will get to go home. There is no date yet, but if things go right for once I could be home in a few weeks. Let's not hold our breaths or anything because if this experience has shown us anything Murphy's law* holds true.

So keep me in your thoughts and prayers (if you do that kind of thing), knock on wood, and fingers crossed for good measure.
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*By the way, I'm sad James Garner has passed. I first loved him as an actor in Murphy's Romance as kid. I just watched him in The Notebook and I must admit he and Gena Rowlands  helped me have good cry last Saturday night.

Fair warning, read on only if you want to hear some complaining.

I was in need of a good cry because I had a pretty horrible week. My catheter kept getting blocked with sediment, which caused me to feel terrible, thanks to our good friend autonomic dysreflexia. Then I'd have a bladder spasm and feel better. In other words, I peed my pants unconsciously. I wouldn't know what was happening until someone came to help me reposition in bed and discovered it was wet or I got out of my chair and realized it was wet. At first it happened once a week, then every few days, and we just chalked it up to the UTI I was having treated.

Until last week when it started happening every day, the pain in my bladder worsened, my blood pressure kept rising, my whole body began to flush, and muscle spasms wracked my frame.

I'm not sure which bothered me more, having it happen when the kids visited or the day the nurse thought I was having a heart attack because my catheter was blocked again. Maybe, it was Friday when I didn't get my morning meds until 9am and so then was in extreme pain until late afternoon when my medication levels caught up to my pain. Thursday had been good, and Friday started off well, until my meds were late. I missed my shower that day because of pain, so it had been a week since I bathed.  Perhaps I was angriest Saturday when I had to wait till the evening to finally get the shower I should have had on Friday--because while I'm waiting for my shower the staff doesn't get me up, so one and a half days of good health were wasted in bed waiting, not because of my body, but due to staff error. I hate to lose good days since I've had so many bad ones.

Turns out I had a yeast infection in my bladder, hence all the sediment and discomfort. Antibiotics often lead to feminine discomfort, but who knew it could be in the bladder too? By the time I was diagnosed, it had already mostly cleared up. Good thing I had cut down on my sugar intake already.

All that nonsense last week makes me even happier that I have a chance of getting out of here!

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