I Won and Lost

Yep, that's right I won. No it wasn't some lucrative writing award or contest. I've  gotten the insurance to agree to pay for my Botox injections. I start the series today. I was on the maximum dose of Bacfloren was thinking about a pump system in my spine. I was decidedly groggly between that and the Valium. Not to mention pain meds which didn't even ease the pain a smidgen. Here's praying I do not have a negative reaction to the drug or that it doesn't work. I've done enough research on the subject.

I even managed to get another 2,500 written on the new manuscript, Don't Get Your Panties in a Wad. I told you this is a slow process on this manuscript. My brain keeps telling my fingers to type with ten fingers. LOL Right now I'm not seeing the humorous side of stroke recovery. Stand by...

What I've lost. I developed gross swelling and bruising which has been an ongoing concern for a couple of weeks. We're talking toes the size of Vienna sausages and fingers the size of hot dogs instead of pencil thin. I've had numerous occasions  of this kind of swelling caused by my heart when I'd go through congestive heart failure, but this was different. It's only on one side  (the paralyzed side) with no cardiac problems or breathing issues. Today is the first time I'm going in the see my neurologist,( yes she's that backed up in appointment)...three weeks wait. Of course by now the swelling is down to a dull roar this morning. My weight dropped by two pounds overnight. I weigh myself daily because of my heart issues. Anything over five pounds, it's call the cardiologist and massive doses of Lasix. I have been purposefully losing weight since my stroke to the tune of forty pounds since May. So with the weight increase just how much fluid am I really holding while my weight gained. Should be interesting.

With all the added weight in my arm I've pulled something in my shoulder.I no longer even have half the range of motion without severe pain that I had a month ago. I've also been fitted with four DynaSplints. Two for my wrist and fingers (one waking/one sleeping) and two for my elbow. They are just too heavy. Most days with the swelling and nerve pain I can't open my fingers enough to put them on even after an hour of attempted stretching. I've got two more to be deliver soon for my foot and ankle. This has been a very disheartening month. God, I hope all this money spent will show some progress. I was denied Social Security Disability.

So how has your two weeks been?

Keep writing and loving the Lord.

Don't Get Your Panties in a Wad

It's been almost three weeks since my last post! Time flies when you are not having fun. Almost as quickly as when you are having fun. I wish.

My recovery is at a stand still, almost. I've had to stop occupational therapy because of the muscle spasms and spasticity in my arm. When one stops the other kicks in making my progress take a couple steps back. It is frustrating, but on a lighter note, I am getting some writing done. Not editing though. It's just to difficult to do that yet. The same goes for formatting so if you want an e-copy of one of my books they are still available on Smashwords and other distributors other than Amazon.

One more thing on an ever growing to-do list. I ended up hiring a painter for my home, and my oldest daughter cut my grass and weed-wacked. I know my neighbors are thankful. So I've been supervising. I have progressed to a cane instead of the walker so there is some progress on the health front. The combination of doctors have now found the cause of my stroke. A small blood clot was thrown off my cardiac stent. Of course the Coumadin has dissolved any proof, but its in their learned opinion that my heart attack and subsequent stent placement six years ago came back and bit me in the butt. Who am I to argue?

Now to the title of this blog and my current work in progress. What's in a title?  I wanted something catchy. I wanted something that would make you smile. I wanted something all stroke survivors could relate to. Something which stressed not stressing the condition.

The title came from a conversation I had with my baby sister after I got back from the hospital. Going to the toilet after a stroke give a whole new meaning to the phrase. It took me almost two weeks of trying to pull my panties up one handed until I didn't get them twisted in a wad and have to ask for assistance in pulling them up.

That's after a week of learning how to wipe my own butt after a minor #2. Keep in mind I didn't have use of one leg and one arm. Now lean forward and use the hand you don't normally use to accomplish the task being careful not to lean forward too far. A video would have been better but wouldn't want to gross y'all out.

It was all about balance. That's the thing about life...it's all about balance. If you have pain you've got to have pain free times to appreciate it. When you are struggling you've got to be able to step back and laugh at yourself.

Keep writing and loving the Lord.
 

Dawn of a Kernel for a New Book

As you can imagine since my stroke I have been purchasing books and reading articles and blogs about strokes and recovery. Makes sense right? The subject is on my mind every waking minute right now. Rather than stew in self pity, I'm searching for alternatives for ways to accomplish life's little thing often taken for granted.

Reading is one of the few pleasures available to me. While I wait and work for recovery. Although spelling and and all but basic grammar are lost to me right now a book has formed in my mind. Everything I have read has been so serious. Adaptation, recovery and living are serious business after a stroke...heart attacks are much easier to recover from and I speak from personal experience. It struck me that after a stroke you rarely laugh at the dumb things you do. I do mean dumb. You no longer take simple tasks for granted but count them as achievements. Some of them are pretty hilarious when looking in hindsight.

I've often felt there is not enough laughter in the world and when facing a life altering event laughter is needed more than at anytime in your life so I started writing.

The book is titled "Don't Get Your Panties in a Wad." I've even designed the cover. Want to see?

There is in my searching nothing like it on the market. Forget about a year to release. I'm only typing fifty words three times a week. It's a far cry from what I used to do. My days of 10+K words daily are over for the time being. But it is progress and I'm at 700 words shooting for 75,000. It is geared for the one million stroke survivors globally each year. There is a time and place for tears and grief. What's left is the healing power of laughter.

Look for snippets here along this journey.

Keep writing and loving the Lord.

Fighting an Up Hill Battle

Wondering what's going on with me lately? I'm fighting the insurance company and bureaucracy. While Obama's health care bill passed the Supreme Court, I'm still arguing back and forth with my provider. I don't intend on getting political here.

I've been on a variety of drugs for the muscle spasms in my right arm and leg since my stroke two months ago. In high enough doses they leave me spasm free, but a zombie. I can't do my therapy as a zombie. In lower doses which allows me to do my therapy, it just doesn't work. The muscles are so tight with spasms the muscles won't move. Imagine a charlie horse type spasm from your big toe to your hip or from your finger tips to your shoulder every three to six hours and you get the picture. Or misfiring signals from the brain to muscles where all they do is tremble. Because of the Clonus (tremors) in my ankle, my whole leg will shake from 30 seconds to three minutes when I'm trying to walk, sitting at my desk, or sleeping. This is just irritating not painful. But imagine it happens up to thirty times a day.

But I digress. My fight with the insurance company deals with the next level of treating these spasms...Botox injections. The insurance refuses to cover them. This isn't an experimental treatment. It has been used for years in Parkinson's, MS, Cerebral Palsy, and muscle spasms.Shots of Botulism are injected into the muscles to relax them. They are expensive at $365 per shot but if it will possibly allows me to lead a productive life of an author, minister,and a human being. It's worth it. I'm not a movie star or someone insecure about their looks. This isn't cosmetic it's a need! It will get me out of pain and restore function. It will allow me to work the weak muscles until they no longer spasm.

The insurance bills tallied for my month in hospital is $42,000. With adaptive equipment and transportation such as a toilet seat, braces, shower chair, walker and other incidentals, the total bill was $54,000 which they had no problem in paying in full with $1,000 coming out of my pocket per my PPO. Thank God for royalty checks.

The difference is recovery versus adaptation. They will gladly pay for anything which will substitute use rather than recover use of whatever is wrong. Those that know me, know I don't back down from a righteous fight even when I'm the underdog. I'll continue to my last breath!

Am I wrong to want to recover the use of my arm and leg to almost pre-stroke condition? Now that I'm post 30 days into my recovery and it takes longer, but is achievable.

Am I wrong to want to not be in pain? I will say they will pay for any pain relief drugs.

Am I wrong for wanting to work again? I'm too young for medicare and make too much money in our household for medicaid. That's taking into consideration for a monthly out of pocket pharmacy bill of $700.


I have applied for disability. I'm a realist. For my husband with bad lungs, bad heart, and cancer at age 55 it took four years and a court case to get approved! We almost filed for bankruptcy and lost our house because of that delay..

What is wrong with this picture?

The Good, the Bad, and the Ugly

It is official. I've just past the thirty day post stroke. I wish I could say I'm back to normal,but I can't. I have recovered my shoulder, but my arm is still in spasms. A brace holds my wrist and fingers on my right side stretched out. I've gained a small amount of movement in my elbow. I muddle through a road map with alternate routes to do simple things.

My ankle still has too much muscle tone in it to be able to walk without my brace,but I can walk with a half walker (hemi-walker). My daughter bought me a Barbie bicycle basket so at least I can carry some things. Before that I was carrying bottles of water in the crook between  my neck and collar bone. I just got approved for out patient rehab at the hospital which is great. I've got about 10 weeks of rehab left on my insurance plan which is a blessing.

What is killing me right now is my inability to write although my typing is getting better. My thoughts move faster than my fingers. My actual writing still suck because I'm not left handed and am praying to get my right elbow and wrist marginally functional.

The cognitive side of writing is still a challenge,but I spend hours each day playing word games online and it is getting better. At best it's a dyslexic ADD, but I've never stepped away from a challenge. I told my husband that my genius IQ slipped to normal,but my thought patterns still try to achieve what it once did without effort. My brain sort of short circuits when there are too many voices at once. Woe be to me with multiple characters sounding off in my head at any given time and regular conversations.

Already my brain is churning on a nonfiction about this experience, but like my "To Have and Let Go," about living with a terminal spouse,  nonfiction I don't have an ending yet. For the writer in me it is all grist for the mill. Every experience, every challenge, every thought are all a part of what makes me Me. I've cancelled all the weddings, the counseling sessions, the writer conferences, and book signings until fall. I just don't see myself being able to do any which is a big ouchie. I pulled the kindle versions of my books off the market  before the stroke so e-versions are only available through Smashwords and I can't reformat them yet.

My Black Orchid competition piece is still on my hard drive. I missed the deadline while in the hospital.maybe next year. I can't illustrate my childrens series yet. Typing and writing tires my brain if longer than an hour, SO my writing career is pretty much on hold. But that's not stopping y'all!

Keep writing and loving the Lord.