The Injury that Started it All

My doctor and I have been trying to figure out what sort of injury would have started the CRPS in my hands before I was even fifteen.  There weren’t a lot of choices, unlike the rest of my body, I haven’t injured my hands a whole lot, falls where I stuck my hands out to catch myself, but I haven’t jammed my fingers a whole lot as a kid and I have only broken my wrists, never my fingers or the bones in my hands.  However, we were looking for something that might have caused damage to the nerves and were coming up with nothing.

However, yesterday, I made a phone call to a place in Arkansas that deals with neurological disorders, hoping they could help me.  Unfortunately, since I know I’ve had it since I was fifteen, they didn’t think their treatments would work, I went untreated for too long.  This is due to a combination of “I didn’t know something like this existed until I was 22” and “a string of false information and tests that didn’t show anything.  As I was talking to them about what sort of injury might have triggered it, the woman I talked to asked if I had ever had a second degree burn on my hands.

Um, how about a 3rd degree?  Check… Both thumbs…. because I have been convinced my entire life that I should be crafty, like able to make shit crafty, not sly and cunning.  So when I was 12, I begged and begged and begged for a woodburner.  My parents eventually relented.  I had it less than six months before my clumsiness kicked in.  I was trying to make a pattern deeper, so I was applying pressure, more than I was supposed to apply, and I knew it, but damn it, I wanted the pattern burned in deeper…. it slipped across the wood and entered my thumb on the left hand.  It was very hot and cauterized the wound as it went all the way to bone – woodburners have a pointy tip for fine detail work.  The most pain I have ever experienced in my life.  By the time I was 15, I was having trouble with pain in my hands… because while I did it to the left thumb, about four weeks later, I did the exact same stupid thing to the right.  It wasn’t as deep, but I still have a small scar from it.  That’s the scar it left on the left thumb.  I burned through nerves, muscle, tissue, the whole nine yards on the left.  There was nothing the doctors could do to help it.  They didn’t even stitch the wound closed because the cauterizing was so complete, they didn’t want to pull the scab off the interior of my thumb (the muscles in it).  And within 3 years of that injury, I was being told I had an arthritic like condition in my hands…. that was more than likely RSD.

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Unfortunately, since I went 22 years without treatment for RSD/CRPS, the place I talked to didn’t think they could help me and my insurance won’t pay for it.  It would cost me around $80,000 out of pocket for something that they said had a less than 15% chance of helping… because it has started to attack my organs.

 

At least I understand a little better about the cause.  My matching thumb scars are the start of my digestive problems, my eye sight problems, the pain in my hands every winter, now the pain in my hips and lower legs, because having CRPS for so long and having it go untreated causes it to spread and every injury I’ve sustained since then has more potential to become a massive source of pain.

So I can blame losing my ability to eat peppers and losing my ability to drive and the fact that sometimes when I sit down to pee, I have trouble getting up, on the fact that I was intent on learning to be crafty.  Which is why we are now fitting our house with handicap handrails in all the bathrooms and we are going to have to spend a whole lot of money on either building me a shower in the utility room or getting me a handicap accessible bathtub, because there are times when I pick my leg up and it just doesn’t come up and I end up kicking the side of the bathtub, which really hurts, just FYI.

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Not Rocket Science

Normally, I consider myself an intelligent human being capable of logical, deductive thought and reasoning.  So for nearly 5 months, I have woken up and walked around with a limp in the morning, it’s why Vicodin has become a part of my morning pill routine. So at 4 a.m, when I was having trouble getting comfortable last night in bed because my hip was bothering me, it suddenly hit me… I sleep fully clothed, every night.  And my hip and thigh are constantly swollen.  So I took off the pajamas and crawled into bed and slept and didn’t wake up this morning with a limp.  Duh!  I have even complained about the fact that my underclothing isn’t fitting quit right with a swollen hip and thigh.  I can’t believe it took me 5 months to figure that out.  Since I sleep on my right side naturally and that’s the side giving me the most problems, it only makes sense that sleeping in clothing would bother me.  Especially since once I hit the bed, I’m dead.  I normally wake up in the same position I went to sleep in.

Needless to say, I felt like an idiot when I figured it out.  It’s not rocket science or even college algebra, I shouldn’t need a tutor to figure out that my clothing is bothering me at night.  So, yeah, that and writing is my big accomplishment for the day, but at least I had some!

I want to start a movement

I think once a year, we should have a Donate an Independent author to your local library day.  It’s very hard to get an indie’s book in a library if that indie doesn’t live there.  Most libraries are willing to take donations from authors, but not through the mail.  Most libraries require that X amount of people have to request a book before they will spend their limited funds on an independent author’s book.

Think about it though, if everyone bought one book from an indie, say through Amazon or CreateSpace or B&N or wherever you buy your paperbacks and donated them to their local library, indies would suddenly have a huge showing in libraries across the country.

I’ll start it.  Between now and December 15th, I’m going to buy a copy of Reign Drops by C. Patt and donate it to my local library.  Since I’m currently reading it for something the author wants me to look over, I’ll wait until I finish that before I go buy it and donate it, that way it meets her approval.  She lives in Texas so the chances that her book is available at the library in Columbia, Missouri are slim.  However, since lots of people still get books from libraries (much to the dismay of digital media haters everywhere, the ebook did not kill off libraries). It’s true that they have more limited funds due to budget cuts and restraints placed upon them by the cities where they operate and they do buy ebooks, which is nice for readers and authors alike (the first library to get the Dreams books was a library in Los Angeles who picked up the ebook versions). I have since donated paperback copies of all my books to my local library.  And as soon as I have a copy of Tortured Dreams in my possession, I have a Little Library interested in the first 2 Dreams books.

This would actually accomplish 2 things: not only would we be able to get indies into libraries without cutting into library budgets for things like the newest Stephen King novel, but the author would make a few bucks off the paperback you bought and donated!  And as people in your town or city borrowed the book and read it, then you could talk to others where you live about the book without feeling like they don’t know what you’re talking about.  I got the idea when I saw a book being read by someone at the grocery store today.  It was stamped with our public library’s name and it was an indie author that lives here in town that I actually love.  I’m sure she donated it, but wouldn’t it be great if people in Cleveland could check it out from the library?  It would because it’s a good book, but I’m betting they don’t have that option because the library hasn’t bought it.

The downside is that I’m asking people to buy a paperback novel and donate it, but it is November/December, the season of giving.  What better time to start such a movement!

So Glad I am not a parent today

We had a dart tournament for Toys for Tots this weekend. There was a Sweet Sixteen party scheduled over top of us. Turn out was low, so it wasn’t a big deal.

However, I overheard two of the party guests having a conversation in the ladies bathroom about whether one girl who looked about 15 years old was going to tell her boyfriend she was pregnant. This debate was bookended with the statement “well, if it turns out not to be his, I don’t want him telling the school I’m a slut.”

Um, what?

As I washed my hands and prepared to leave the bathroom all I could really think about was the fact that for all my problems, I’ve never had that one… on either end of the spectrum – no Teen girls to worry about coming home and telling me their pregnant and no concerns about ever having to tell a boyfriend I’m pregnant, but it might not be his.

Even in my thirties, those words give me the heebeejeebees. I’m married and I wouldn’t want to have to tell my husband – Hey, we just managed to achieve gold stars in the “people who shouldn’t breed” category! Which is probably what I would say after I finished sobbing.

But not being sure who the father is adds a whole new layer of intense sobbing to my mindset. That conversation would not go well. And I think she might have more problems than then the boyfriend telling people she’s a slut if it turns out not to be his. Like figuring out the real father. Do you flip a coin for paternity testing at that point?

Thankful, Part 5

I am thankful for my readers.  Several of you have messaged me over the years asking if I was burning the candle at both ends.  A few have worried I write so fast, I might burn out.  Most have offered emotional support and promised to keep reading no matter how long it takes to get the next book done.  No one has sent me hate mail for not getting Demonic Dreams out in October like I planned.

I’m setting less lofty goals for 2018 and I know that my readers will be fine with that.  Next year, I will release Demonic Dreams and I will write another Dysfunctional Chronicle.  I don’t know when these will publish.  I don’t know what order I will publish them in.  I may not publish anything else next year except those two things.  Or I might work on the Death Demon Trilogy a little bit next year and see if I can get it off the ground and running.

Good chance my 2017 publishing is done.  Even if in two weeks or three weeks, I begin to be able to visualize the story from beginning to end, like I used to do, I won’t have time to get it written, edited, and published.

I appreciate the support my readers have offered and the fact that most realized I was going to have to cut back a little even before I did.  It makes me feel loved to know that even if I only publish two books next year, you will all buy them and then anxiously await the release of another… which might take a year or more to get done.  I know you all will continue to recommend my books to others and write reviews telling strangers they need to read whichever series is your favorite.

And you’ll continue to read my blog and offer emotional support when I have bad days.  Which to me is amazing, because truthfully, I am a complete stranger to most of you and yet you find it in your souls to be compassionate and understanding and willing to listen to me rant and ramble and stress and worry.  It means a lot to me that you guys have shown me an outpouring of sympathy, support, and friendship.  So for that, I am thankful I have found all of you.  You are all amazing and I feel indebted to you all.

Thankful, Part 4

I am thankful for my husband.  He is adjusting to living with someone who has a chronic pain disorder.  It isn’t easy.  Some nights, I’m terribly cranky just because I hurt.  Some days, I don’t want to get out of bed because the meds make me feel exhausted.

There are other issues as well, the cost of my health care has increased exponentially.  So he is adjusting to living life on a tighter budget than what he is used to, especially since my health insurance comes out of his pay checks.  My doctor’s appointments have increased.  My medicine copays have increased because there isn’t a generic of Lyrica on the market yet.  Means we have to pull our purse strings tighter than we did before.

Physically there are adjustments too.  I can’t play darts anymore and going and sitting in the chairs at the bar can cause pain.  I don’t go every week like I used to.  I’m a sub on his team, but I can’t really play.  Dart tournaments are going to be a little more challenging, they involve a lot of walking and sitting.  When I wasn’t throwing, I used to volunteer to chalk matches (keep the score)… but I can’t do that anymore either.  I won’t be going on float trips, because I can’t sit in a raft for several hours.  His parents own a campground at Mark Twain Lake in north eastern Missouri.  They have a nice pontoon that we go out on for the purpose of swimming when it’s hot, I can swim, they actually told me swimming was my best exercise choice, but I’m not sure I can get up and down the ladder to get in and out of the pontoon.  He may have to learn how to help me up and down the stupid thing.

For now, I can’t drive.  Having less than 50% mobility in the hip hinders a number of activities, including driving.  He wasn’t a good passenger anyway, but now he has to take into consideration how long I can sit in the passenger’s seat before it becomes a pain issue.  Our travel might include more stops to let me just get out and walk around, which means three hour drives might have to become three and half hour drives or four hour drives depending on my comfort.  For people that like to just get in the car and go, that takes getting used to.

I appreciate the fact that he is willing to stay and try to adjust to these things.

A Sobering Moment

About 3 weeks ago, I had a very surreal moment that I haven’t discussed with many people.

I was getting ready to take my night time meds and started counting. I had 16mgs of clonazepam, 200mgs of cyclobenzaprine, 375mgs of butalbital, and 3,000mgs of gabapentin. And I knew that if I took them all, I wouldn’t have to worry about the next day or any days anymore.

Part of me wanted to do it. My mom, my husband, my best friend, one of my nephews, and my great nephew would get any money I had coming in for the rest of their lives. Meaning, they wouldn’t be burdened with any financial struggles and any debts I had with them would get paid off. I wouldn’t have to think about money, or trying to write a book, or health insurance, or adjusting to whatever was wrong with me, or feel guilty for not being able to help more.

I took my night time meds as prescribed, but the next day, I talked to my mom about it. It was scary and sobering to know that I had considered it for more than a second and that I knew my medicine bag contained everything I needed to do it. We discussed me returning to therapy, it’s been a while since my therapist passed away and I haven’t found one since then that I meshed with.

A few days later, as I sat weeping in my pain management docor’s office explaining that the gabapentin made me feel disconnected from reality and that I was having suicidal thoughts for the first time in my life that my nurse practitioner lifted a burden a hadn’t realized I’d been carrying. I hadn’t gotten crazier. I hadn’t given up. I didn’t even need to talk to a psychiatrist about my suicidal thoughts… I needed to get the fuck off the gabapentin.

I didn’t know that was a side effect. And I had taken it in the past, but not multiple times per day, every day. The disconnected from reality side effect was enough in the past to make it so I took it as rarely as I could manage.

I’ve been off for almost three full weeks. It took a few days for all the side effects to fully go away. I was still weepy and angry for about 6 days after my last dose.

I’m not having many side effects on the Lyrica… drowsiness is the biggest one. I’m good with being sleepy. It beats the hell out of the others.

Now that I feel less disconnected and angry and weepy, I feel the need to atone for my behavior during those gabapentin fueled days. Not just with my readers, but with everyone in my life and myself. I apologize for the ranting blog posts. I know I’m not special and I have at least a dozen readers dealing with the same or similar conditions.

That’s part of what the “Thankful” posts are about. Reminding myself that I came very close to not having to be thankful for anything. I would have caused pain to those that love me. I would have left them wondering about the why, because I couldn’t have adequately explained it except that I was sure everyone would just be better off if I wasn’t around.

As I read the comments of people saying things like “you must feel better” the answer to that is yes. I do feel better, mentally. I am much healthier off the gabapentin. I am starting to find some pain relief with the Lyrica and a new muscle relaxer they put me on. I’m enjoying my second job. I have sent the first handful of chapters of Demonic Dreams to a couple of trusted friends to read through and tell me what the hell I’m doing wrong… because the story is terrible and that might be why it isn’t going anywhere. I’m hoping to be able to resume writing by the end of the month. The doctor told me to give myself 6 weeks or so to adjust to the Lyrica before trying anything that is really mentally taxing, because it can take a while for the brain to adjust to the nerve medication. He knows what I do for a living and believes that the Lyrica could be part of my writer’s block.

We have a course of action planned out. Starting with trying to get me listed as partial disabled. I will probably not gain full mobility in my hip and walking and daily tasks are quite likely going to be a continued problem. Basically, it would be handicap tags for my car when I’m going somewhere and Medicare/Medicaid to help with the fact that I have monthly appointments scheduled with him for the next 9 months. He thinks by gathering the history on my hands, where he believes the CRPS began when I was a teen, we can probably get it pushed through the first time. And if not, I’ll find a lawyer to take my 24 years worth of pain to the disability board and see if that helps.

It’s amazing how much better having a plan makes a person feel.

Thankful, Part 3

I am thankful for my mother.  What most people don’t realize is that I can barely take care of myself or the house at this point.  I can load the top rack of the dishwasher, but not the bottom.  I have trouble getting laundry out of the washer.  Then I have trouble getting laundry out of the dryer. I can push a broom, but not a vacuum cleaner.  I have trouble reaching down to clean to the tub.  She also helps me with the cooking.

I have trouble with personal care.  My mom is nice enough to cut my toenails on my right foot for me, since I can’t.  When I can’t get my pants, socks, or shoes on, my mom helps me with that too.

When I have a bad day mentally, my mom is willing to listen.  She reminds me that no matter what, we always make it through.

So on day 3, I am thankful for my mom.  She helps me more than I can ever repay.

Things I’m Thankful For, Part 2

I am thankful for the support of my family, friends, and readers.

I’m thankful that I have a doctor or two that actually listens to me and doesn’t just make decisions for me.

I’m thankful that my bestie doesn’t sugar coat shit she says, even when she thinks it’s shit I don’t want to hear.

And I am thankful for the silver linings and unicorns I am finding along this journey.

Some Positivity

My pity party has lasted long enough. It’s November and for those in the US that means Thanksgiving.

In my family, before we eat we have to name something we are thankful for. One of the things I have been most thankful for is my great nephew and his momma.

Jude’s momma is not my niece – not biologically and not by marriage. Her and my nephew were dating when she got pregnant and then he decided to get back into drugs and screw up his life.

I can’t make my nephew go straight. I can’t change who he is or what he does. I can only shake my head and sigh that he is missing out on watching his son grow up.

However, Jude’s momma lets me include her in the list of nieces and nephews. She lets me treat her like she’s family. She treats us like family. She doesn’t hold my nephew’s behavior against us. For that, J am thankful.

I hear about families nowadays where they don’t see a grandchild or great grandchild because after the parents split, the hard feelings of The nonbiological parent keeps them from seeing the baby that was created.

We don’t have that problem. We can see Jude as much as we want. They join us for dinner sometimes. They come out just to hang out. She wants us in Jude’s life!

And I am thankful for that little boy. He might exhaust me while he’s here, but sometimes, be randomly runs up to give me a hug and/or a kiss just because. And no matter how tired I am at those times, it makes me feel better.

He is so loving and so caring, for a 15 month old. It really warms my heart.

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