Thank You for the Support

I want to give another thank you to my readers.  You guys could be jerks about my not getting a book written immediately and you have no idea how much I appreciate that you aren’t.  It isn’t just medications that I’m adjusting to or new pain levels.  My family’s whole life has been turned upside down, emotionally, mentally, and physically in the last 6 months everything has had to change.

I have had to give up darts, which has been hard, but necessary.  I can’t walk through the grocery store, standing to throw darts isn’t going to make my life any easier.  I’ve had to change how and where I play with my dogs since my backyard is a like a minefield of tiny depressions.  I wanted to buy a split foyer home because I wanted the extra room the basement provided.  Only now I have trouble going up and down the steps some days.  We have one full and 2 half bathrooms, so we have been cussing and discussing a shower for me in the utility room where one of the half bathrooms is.  And that has been a bit hairy at times because I want a slightly larger than average shower since it is going to be the main place I shower.

Yes, it will add value to our home, but it’s expensive to build a slightly oversized shower.  And one of the things I really want in it is good faucets and a shower head.  As a girl, this is going to be the only place I can shave my legs.  If I thought my skin was dry now, wait until I start shaving them in a shower all the time and no amount of lotion fixes the dryness.  I managed to get my tiles on clearance today, so that was awesome.  Right now, I have so many days when I have to take a Vicodin just to take a shower because I have trouble standing in the shower for very long and a shower chair isn’t practical in the bathroom we have.  Plus, I have a tendency to tell my hip to raise my leg and my leg doesn’t come up but about 3 inches so I kick the tub wall.

Not to mention adjusting to the cost increase of having CRPS.  Meds are outrageous because I can’t be like everyone else and take Gabapentin or Cymbalta.    Plus the extra cost of all these doctor visits that I can’t skip and the increase in health insurance premiums that took place in November and the fact that I am starting my deductible and out of pocket all over again.  People like to tell me that I have to tighten my budget and get a second job.  I have a second job and no, it isn’t a job that pays real great, but it’s about the only one I can do.  I hurt going to the grocery store, I can’t imagine how bad it would be if I stocked shelves or stood all day at a cash register or had to lift crap.  And sadly, I would love to tighten my budget, but there’s no wiggle room in it now.  You can’t tighten a budget and make money magically appear.  Yes we bought pizza the other night because I was so sore I didn’t want to cook after going to the grocery store, but that’s like the second time in 3 months that my husband and I have eaten out.  And one of those times, my nephew bought and I forgot to pay him back.  And yes I have office skills, but there are times when sitting is just as bad as standing and ergonomically correct doesn’t always help.

Part of my excitement over being able to eat peppers and bananas again isn’t just because I haven’t been able to do it for 12 years without the risk of getting sick, part of it is because I feel like I am just giving up one thing after another that I love.  I can’t travel like I used to.  My husband would like to go to a  dart tournament next year in Vegas, which is great, but I don’t think I could sit on a plane for 2 hours after the 2 hour drive to an airport or walk anywhere once we got there or have much fun because I wouldn’t be able to do much…

I’m using a cane more and more which freaks Lola out really bad.  She attacks it more often than she doesn’t when I’m using it, which causes me even more pain, so there are times when I’m like screw it, I’m just going to have to hurt because I can’t stand to deal with Lola while using the cane.

Yes, I have times when I am very angry.  I think if someone had caught this in the 22 years leading up to this point, I might not be this bad.  And in those moments, I rage at the world.  You have all been very patient with those ranting posts.  And donations you guys made in November eased my mom’s mind so much, it allowed me to pick up my Lyrica before I got paid because I never dreamed that my copay would be $426 for 60 capsules.  She was really stressing out about me being out for a week and a half.  She was worried that when I did restart the medication, it wouldn’t be as effective because she’s like me and she has moments where she gets upset and angry and thinks that if someone had been willing to look past the superficial during the last 22 years, I wouldn’t be this bad.  I have come to realize how mentally tough it is for my mother to watch me go through this transition.  I mean it’s hard on all of us, but for her, it is in some ways worse.  She worries about whether I will have decent care once she’s gone and whether I’m going to end up in a wheelchair and if there was something she could have done in those 22 years to stop this… but I have been tested 5 times for RSD by 5 different neurologists, so I don’t think there was.  She took me to see all the right doctors and paid them to figure out what was wrong and they just missed it.  And it’s rough watching me be in pain.  I wanted to go to the grocery store on Friday, but she has been kicking herself for taking me since we got home on Friday.

So your understanding and donations are a God send to me and my family as I try to find a new normal or standard of living.  And my mom does worry a little bit that when I do finally get a book published, my readers will all have moved on to other series and not buy the new book and I won’t have a revenue source, even with the publication.

For your support, I can’t thank you enough.

7 thoughts on “Thank You for the Support

  1. Hadena, I’ll be there when the next book comes out, no matter how long it takes, and I know your other readers will be as well. Dealing with chronic debilitating pain is an incredibly tough job, made worse by uninformed but well meaning friends and family. This weekend I’m back to my skin hurting if anything touches me, it’s not fair! I completely understand about the shower (and shaving your legs, I can’t so I have to have help) our shower is tiny, our master bath is tiny, but we crammed a shower chair in there. You can’t open the door all the way but we make do. My husband also installed grab bars in the shower, at the toilet, and next to the bed. And we got a tool to help me get my socks and shoes on and one for grabbing items. My nurse had an occupational therapist come to our house to help make things easier. It’s no fun having 4 autoimmune diseases, but I make it through. My mom also continues to deal with things the way your mom does, I think there’s a fair amount of guilt and questioning of themselves. Even though there’s nothing they could have done to change things. Find yourself a good cane that fits your personality, one of mine has the sun, the moon, and stars all over it. As always, I’m here if you need someone to talk to who gets it or if you need to vent. Try to stay positive and look for something to smile about each day and remember – it could always be worse (that’s my mantra to myself when things are especially bad).

    Liked by 2 people

  2. Talk to the doctor, there are drug company copay assi t programs they just need to CODE it right on the request.My ME med is 1,246 a month without the co pay assist and FREE with it.
    I tried to send you a email but apparently that changed in the wedding or move… If u email me I can send the post i attempted again… WordPress has kittens because I don’t list a blog address… Love ya but not that headache much..;o)

    Hang in there help is there you just need to know where to look…

    Liked by 1 person

  3. I could spend hours and days like you raging at doctors who misdiagnose illness and chronic conditions. My mom has to deal with her pain and mobility issues while the insurance company wants to argue whether or not they will cover the medications she needs so I totally know and feel your pain in regards to dealing with these issues. The shower is unfortunately going to be a necessity for you and you will need a shower seat so that you can shower. We had to take out our tub/shower and put in a shower unit with a seat for my mom. It’s nice but I do occasionally miss the tub. Keep up the good fight -we will all be here when you feel good enough to write.

    Liked by 1 person

  4. Hadena,
    I have enjoyed your writing very much.
    My comment is that I think that the majority of your readers would be willing to pay more for your books. I certainly would.

    Thank you for being so open about your successes and struggles. I hope you have a blessed Christmas ( or whatever you celebrate)

    April Morrisett, Alaska

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s