Moving Right Along

I started Chapter 12 tonight of Demonic Dreams.  Considering I’ve been working on this novel for 9 months, it’s about damn time.

Sent the first 6 chapters to the editor just to make it still sounds like me.  I’m trying to get as close to finished as possible by Tuesday or Wednesday since I have no idea what’s going to happen when those days get here.  I have appointments with Dr. Fat & Old Disease as well as my primary.

Tuesday the 20th I get an injection in my hip.  I have my toes crossed because the last one only lasted 4 days and I didn’t even get relief when they numbed me up to do the injection.

On the 21st, I have an appointment with my primary.  If injection day goes as well this time as it did last time, I’m going to beg for some Percocet to get to the finish of Demonic Dreams and hope my primary is willing to oblige.

I’m not going to ask him to help me find a new doctor.  I’m pretty much done.  Injections have worked shoddily at best for me.  The only thing that does give me quality of life is the pain meds and I have trouble getting them.  I can have zero quality of life for a lot cheaper than $1,600 a month.  So when I finish Demonic Dreams, I’m going to stop treatment.

I can’t see throwing good money after bad when it doesn’t change anything.  The only thing I’ve gained is my ability to eat peppers again.  So I imagine I’ll do some pepper gorging before I run out of Lyrica again.  My family isn’t exactly happy with the decision, but if I’m going to be miserable, I want to be miserable and afford to eat Mexican food.

Everyone likes to talk about the alternative treatments and how much better they respond to those than opiates, but let me tell you, if the alternatives don’t work for you, like I’ve had trouble with, the struggle is soul sucking.  That’s where we are at in this country.  Dr. Fat & Old Disease admitted the injections may not work this time either, based on the fact that the first injections didn’t work and ablation which should have worked made it worse.  I might get a week of relief and then have them wear off and they can’t do them but every 90 days…  So for the other 83 days he just expects me to suffer.  Doesn’t matter how badly.

I had a migraine all day because of that thought.  He doesn’t care if I suffer.  What kind of mad scientist is he?  Aren’t doctors supposed to care?  I suppose not.

He told me to expect my muscles to ache after doing the at home physio exercises.  They don’t.  The sharp pain in my hip got worse and I cried and my butt cheek swelled up, but today, my muscles didn’t ache.  There was no achy muscle pain today in any of the muscle I worked, not even in my back.

I’ve learned Fat & Old Disease is code for Mixed Connective Tissue Disorder.  Which is kinda odd.  I had the best rheumatologist in the state evaluate me and then diagnose me with CRPS.  That doesn’t seem like something she would have missed.  So today, I went through the list of symptoms for MCTD… I have one: Joint Pain.  I have far more symptoms of CRPS… only missing the skin lesions and red flat shiny spots that happen to less than 10% of CRPS sufferers, yet MCTD is what he thinks I have.  And I have no idea why MCTD started when I was 15 and only 120 pounds since it’s a “Fat & Old Disease”… actually it’s a mixed autoimmune disease that usually strikes women in their twenties.  And holy shit they can test for it!  And the test is reliable and I called and asked… I was tested for it and my test was negative.  The rheumatologist assured me she considered that first both times – the first time in 2010 and then again in October 2017 and she tested me for it both times and both times the test came back negative and she was positive I didn’t have it either time and still positive I don’t have it today.  She also told me the pain I was describing was far too intense for MCTD, so I should put another check in the CRPS box and find a different doctor.

But I’m exhausted from that search.  I am exhausted from being treated like a drug addict even when I don’t mention them and they just look at my meds list and even admit the injections probably aren’t going to work… WTF?  If you are pretty sure they aren’t going to work for me this time, yet again, why are you treating me like a junkie?

Oh yeah, wrong blog.  So I am chugging away at Demonic Dreams.  I have a busy weekend because there’s a dart tournament in town and we have company all weekend as a result, so I’m not sure how much writing I will or will not get done, but I hope to get quite a bit done since I can’t go spend all day at the dart tournament without being in agony.  I might go by for an hour or so just to say hi to everyone from out of town, but I won’t be able to stay longer than that.

I had a migraine today.  The first real one in a couple of years.  I know it’s stress because every time I move I can feel my back pop or my shoulder pop.  Maybe tomorrow will be a good day and I can get lots written.

3 thoughts on “Moving Right Along

  1. Do not give up on yourself so easily, you need to find the right Dr but the search tho long and frustrating will be worth it in the end. You deserve to feel better but depression makes you feel the opposite, do not let it win.I did not and after 4 years am finally feeling like worthwhile person. I’ve had good and bad days but with help I now have more good.

    Liked by 1 person

  2. I so so so feel our pain! I was diagnosed 12 years ago but have probably had it for 20+ years. After many many docs and tests and treatments I had been fairly stable with my RSD/CRPS until about a year ago. I have tried all conservative treatments multiple times and I am in the process of doing it all again. In the last year my pain meds have been cut by 95% even though I was stable at my doses for over 10 years. RSD has now spread from my arms to practically everywhere. I am holding out hope for a treatment that has been proven to help and usually puts you in remission for 6 months or more.
    I am sure you have many people helping you already but I would love to share my support and the info I have. If you would like, please get in touch!!
    Sending soft pain free hugs your way!

    Liked by 1 person

    1. I’ve been doing treatment less than a year and now I’m told it’s a labradoodle tear, a tear in my hip cartilage causing the pain and swelling which just doesn’t happen with labral tears. They are normally painless. Or easily managed by a Tylenol. My new doctor is doing the absolute bare minimum for my treatment and making sure it is just a step above nothing, which would actually be better for me.


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