Emergency Appointments

I called Dr. Wonderful’s office yesterday on the verge of a break down.  My pain was out of control.  They fit me in today.  Where Dr. Wonderful finally treated me like a person and more importantly like a chronic pain patient in need of help.

I talked to my primary earlier this week and changed my anxiety medication because Clonazepam interacts with Vicodin and makes it less effective.  With me being in crisis because of pain, Dr. Wonderful saw me today and treated me like a person in pain that needed assistance.

Today, we made a new game plan.  I was put back on Vicodin, 3 a day for now.  I have something systemic causing pain, he is unwilling to settle on CRPS at this exact moment, but at least it’s not just fat and old anymore.  It has also caused my sympathetic nervous system to overreact to stimuli.

This pain crisis was brought on by a needle stick and some contrast dye, neither of which should have caused me to spiral into so much pain that I was thinking about dying, yet again, because, that seems to be the best way to end my pain when it’s that bad – I’m not talking about suicide, just not waking up after going to bed – my family and my writing is too important for me to take my own life no matter how miserable I am.  Plus, I am a bit of an optimist and think that eventually I will find some semblance of my life again.

The labral tear and swelling makes more sense to both Dr. Wonderful and myself today.  For whatever reason, my sympathetic nervous system is reacting to that tear.  Until it gets healed, controlling whatever is wrong with me is going to be an up hill battle with mostly bad days, like it already is, because my nervous system is reacting to the tear and any other stimuli like… well, my immune system would to a serious infection.  Except your sympathetic nervous system isn’t supposed to react to stimuli like that.

So, while it may complicate matters later down the road, we decided not to do physical therapy.  He is concerned that the strain of therapy on that tear may make it worse not better, which would cause my body to overreact even more.

Meaning, I’m not crazy, it is nerve pain and not a tear in my cartilage that’s causing me pain.  He got to see it today first hand.  I have a neuropathic twitch that I thought was a muscle spasm, but as I sat on the stupid beds he has waiting for him to come in, I noticed my foot kept jerking forward in time to how my muscle was spasming at my hip… except that’s not a muscle spasm, that’s a nerve twitch and I know that because I also have those in my hands, sometimes worse or better than others… That sentence doesn’t make sense but I can’t figure out how to fix it.  The twitch in my hand can be annoying or it can be incredibly painful.  There, that makes sense, same with my hip it seems.

Unfortunately, this means the best solution is surgical.  I meet with the surgeon for the consult next week.  Dr. Wonderful doesn’t think this will cure my pain, but he thinks we’ll be able to get it under better control once the tear has been fixed.  He is even optimistic that with some outpatient treatments of Toradol injections and steroid injections, we will be able to get the swelling down.

Today, he put me back on Vicodin.  He also increased my Lyrica to three times a day since I can’t handle the 150mg pills twice a day, but do fine with the 100mgs twice a day right now.  So I’ll get to take one in the morning and one in the afternoon and then one at bedtime.

I could tell he was shocked that after 19 years I wasn’t addicted to my clonazepam, especially since alcoholism runs in my family.  He asked if we were tapering my clonazepam and I said no, there was no need.  I go stretches without it now where I might only take one every couple of weeks, enough to keep me from being agoraphobic and freaking out of everything that causes me stress.  Mostly it stops me from having bad dreams, sleep anxiety is my biggest problem.  However, if the new medication doesn’t help with sleep anxiety, a Benadryl does pretty well.

And of course, there is still the option of looking for a new doctor.  I am getting a second opinion from a rheumatologist.  Which is meeting with a little resistance it turns out.  I was referred to the director of rheumatology in St. Louis that works for the main company that owns my local preferred hospital and all it’s doctors.  She isn’t fond of giving second opinions on cases that my rheumatologist consulted on, because as it was put to me today by the referring system – Dr. M is one of the most respected rheumatologists in the state and only works here because Minnesota is too cold, which is code for she was offered a job at the Mayo clinic and chose to stay in Mid-Missouri.  I know that no one is infallible, particularly doctors, so I am pushing for a file review in an effort to get me the appointment to do retesting for any and all autoimmune disorders.

Dr. Wonderful was even nice enough to tell me he didn’t think sticking a needle in my hip and trying an injection today was a great idea since that was essentially what they did on Tuesday to cause this flare up.  I’m working today to get it under control.  And since he wasn’t a total jackass to me today and actually listened to me and made an effort to understand where I was coming from, I’m willing to give him a shot.  I can have Ketamine as well as anesthesia with surgery, that way if it is CRPS like Dr. M thinks, the risk of it becoming worse or spreading is lowered considerably.  Dr. Wonderful even talked to me today about how ketamine treatments might be a possibility for future management.  I’m not so sure about it.  I don’t respond normal to a lot of medications and while my sister handles Ketamine just fine, I’m not sure I will.

In other news, I have cut back my caffeine and soda intake.  I’m only a few days into it, so I won’t brag too much because I don’t know how long I can keep with it, I really really hate the taste of water, tea, and coffee.  However, since this is a nervous system problem, cutting down on my caffeine may help some of my pain and I’m willing to try it.  I cannot handle being this miserable for much longer.



Another Opinion

Well, it’s time for another opinion.  My primary is sending me to Barnes Jewish in St. Louis to see a different rheumatologist.  Until we get it sorted out, I guess I just get to suffer…  I slept 3 hours last night.  I am in too much pain today to get comfortable.

So even though I’m exhausted, I still can’t sleep.  I am in a really really bad mood as a result of lack of sleep and not being able to eat.  Currently, I feel like shit and I hurt so bad I am sitting around crying today.  Called the doctor that prescribed the Tylenol 3, haven’t heard back from them.  Not that I think he will give a flying fuck.

Sent a file to my editor today to be released in case I have a psychotic break from reality from lack of sleep, food, and care.  It has the ending of Demonic Dreams in it… not written out in story form, but stated so that you guys will know what happens to Gabriel, Ace, and the teams.

What About The Other 50 Symptoms?

I was diagnosed with a lumbar labral tear.  Basically a tear in the cartilage.  If you ever go for a contrast MRI of any joint, there is a better than average chance that at least one of your joints currently has a labral tear.  I have one in my left shoulder that was surgically fixed when they had to surgically reattach all the tendons, ligaments, muscles, and nerves in my shoulder because I destroyed it in a fall.  I also have one in each ankle because I am super graceful and one in both knees (see graceful comment).  I have had these tears for a long time.  My knees will start clicking because of it.

So I wasn’t surprised when the doctor told me I had one in my right hip today.  However, my pain level is inconsistent with a labral tear and there are only 3 symptoms of them, if any at all.  Most tears never bother a person, let alone hurt like what I have been experiencing.  Symptoms are according to the Mayo Clinic:

  • A locking, clicking or catching sensation in your hip joint
  • Pain in your hip or groin
  • Stiffness or limited range of motion in your hip joint

Do you see swelling listed?  Or the word severe in front of pain?  What about muscle spasms?  Neuropathic twitches?  Skin hypersensitivity?  I cried when they inserted the needle to push localized contrast dye.  I have never cried because a needle entered my skin before.  I have given myself hundreds of injections and been given at least a few thousand by other people not to mention the Facet and SI Joint injections I go through.  Is the cartilage in my hands, lower legs – shit there isn’t cartilage in your lower legs, only joints get that stuff – all connected?  What about the mottled skin coloration on my hip?

Dr. Wonderful thinks it’s cause solved.  I start physical therapy sometime later this week…  Which should be a blast.  With CRPS a labral tear would probably cause more pain than normal but remember Dr. Wonderful doesn’t think I have CRPS, he thinks I have Old & Fat Disease which seems to be MCTD, which isn’t something I have a lot of symptoms of.

So it’s off to meet with my primary tomorrow because Dr. Wonderful would like to fix the tear surgically instead of wait the 8 weeks of physical therapy required to heal it.

Also Lyrica doesn’t affect labral tears.  However without the Lyrica my pain is a whole lot worse than it is with the Lyrica.  So I still think I have CRPS, other people still think I have CRPS and he only accounted for two of my symptoms.  He completely ignored all the others.  He also ignored me when I told him the home exercises he was having me to do was increasing my muscle spasms to the point where yesterday, my entire leg contracted and it felt like there was a stick of rebar going all the way down my leg.  Oh, he doesn’t approve of Clonazepam, Flexeril, Percocet, or Butalbital.  I take Flexeril for my teeth grinding at night.  I take clonazepam for my severe anxiety disorder because I can’t take any anti-depressants.  I did get a codeine prescription though.  I took a pill 2 hours ago and it feels like I didn’t take anything for the pain in my hip.

So the next 8 weeks should be a good learning experience for me.  I’ve already beat the odds, most people with CRPS especially progressive CRPS like I have commit suicide within the first 10 years and by most I mean 90%+.  However, he was smart enough to lock me in with that codeine prescription… Because I got a Tylenol 3 prescription, I can’t get anything else for 28 days.

Feels Good To Work

I cannot express in words how wonderful it feels to be able to work.  I have shed a few tears of joy over it.  It has been so satisfying to get words down on paper and be told they sound like me before June when the pain got bad.  My editor keeps reminding me I have found my voice.

And I have been using said voice.  I run out of oxycodone/percocet tomorrow evening.  I get the anestesia injections on Tuesday.  I see my primary on Wednesday.  Nerve blocks have not helped with my hip pain.  And since the doctor doesn’t believe it will help this time, I’m hoping that after 3 failed attempts, I can use that as some leverage to get treatment beyond “suffer it out until the next injections”.  It is in fact the only reason that I am going through with the appointment on Tuesday.

I have tomorrow to get 35,000 words written on Demonic Dreams.  After that date, I have no idea what the future will hold for me.  I had desperately hoped to be more than 40,000 words into the story by now, even if it has only been a few weeks or however long since I started the umpteenth million rewrite of the book and it is flowing so well.  I don’t want to lose a single day, but I have a very strict time limit and medication limit.

Mentally, writing has helped me feel more like a person.  More like me.  The husband is out of town for work from tomorrow to late Wednesday.  This would normally be a very productive writing time for me, but no guarantees this time.  I loathe the possibility of losing that.  All I have ever wanted to do was write.

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.

Break Stuff

Thank you so much Windows for screwing me over tonight.  You have no idea how much I appreciate that.

I have been working my little fingers to the bone trying to get Demonic Dreams written while I still have pain meds and I have been doing amazingly well.

Every time I finish a chapter, I export my book from my writing software into Word and save it.  After K. Smith Proofs gets done editing the “final” version, I delete all these extra files that are just chapters usually anyway.

I finished a chapter entitled Malachi and started on the next one.  I was about 3/4 of the way done it.  My computer suddenly rebooted.  I hadn’t realized it was doing an update.

I try to open my writing program and it tells me it can’t.  Essentially there’s some file missing.  So I go to redownload the sofware… I don’t have the key anymore.  I had saved that email, but it’s not on this computer, which is weird.  I plug in my external hard drive… A search can’t find the email, nothing…

Well isn’t that just freaking dandy at 11:30 pm.  So I go out to the software home.  Realize I had upgraded to the software when I was making good money and I can’t afford it right now.  It would be April before I could.

But hold on.  I upgraded from WriteWay.  It wasn’t badly priced it just didn’t have one specific function.  Then the Universe Smiles on me… WriteWay has become Freeware.  I can download and use it for FREE!  No cost!  It’s really hard to beat that price, especially as a broke novelist at the moment!  The only real function I wanted that WriteItNow did better than WriteWay was a character profile (with a random name generator for unimportant characters.  But hell there’s a free app for my iPhone that does random name generation.

The best part – other than being free, WriteWay doesn’t require Dragon Naturally Speaking – which absolutely hates my guts to take voice commands and do talk-to-text.  WriteWay works just fine with the Microsoft Voice Command and Voice-to-text software.

And I don’t have to rewrite the 30,000 words I had already written.  I just have to write 3,000, because WriteWay will let me upload Microsoft documents, so everything that I had exported is still alive and well.

Since I am frustrated with the loss of those 3,000 words, I’m going to spend the rest of my night getting Demonic Dreams put into WriteWay and tackle them in the morning!

PS: No matter how much time I spend training Dragon, Microsoft Voice still understands me better.  I have logged nearly a 1,000 hours training Dragon and I’ve spent about an hour training Microsoft Voice and Microsoft still understands me better, so I can live with going back to using WriteWay.  It turns out I only used the character profiles like three times in the last year.

I paid $60 for this?

According to the doctor I saw this morning, even if you have tested positive for CRPS, you have to have either red shiny skin or lesions.  Also he actually breached patient confidentiality by telling me the 3 patients that referred me to him, one of which did test positive for CRPS, do not have it.

So I won’t be going back to him.  His diagnosis “You’re fat and old” if you’d go to the gym everyday and lose 104 pounds your hip would unswell.

So, at 5’3″ I should weigh 80 pounds, that would cure my pain and swelling.

CRPS also doesn’t spread, it can’t affect organs, and opiates don’t help the pain.  (Who would like to check WebMD and prove him wrong?  Or the Mayo Clinic Website?  I have printouts from both that say exactly the opposite.

He decided if it wasn’t just a case of being fat and old, it was a case of not enough vitamins and minerals… except we check that every year and every year everything comes back a little high.  Despite being overweight, I eat healthy and have no vitamin or mineral deficiencies.

I didn’t know being fat and old caused random swelling that doesn’t respond to NSAIDs or steroids.  A total waste of $60 and 3 hours of my life.

When I tried to explain the Lyrica helped some with my pain and with my digestive system he said “ok, stay on it.”  Well… ok… I had already planned on that.

I am amazed that Lyrica helps with “I’m fat and old pain”.

However, since I’m in pain simply because I’m fat and old, I didn’t get anything for it.  He told me to get a gym membership.

Some Good News Maybe?

Well, I do have some good news, two pieces and a piece of news that might be good, I’ll have to wait until tomorrow to find out for sure.

I have gone from 0 to 21,000 words on Demonic Dreams since I found that bottle of Percocet.  I’ve even managed to do some chores around my house and help my mom out, which eased my guilt substantially.  So that’s my good news, I am working, writing my little fingers off on the new D&R novel.  And housework to appease my guilty conscious for not being able to help my mom around the house more.

However, I have a second piece of good news.  I used my new shower for the first time last night!  Oh my god!  It was heaven!  It has plenty of room for me to move around in, which is great because the tub/shower can sometimes be restrictive and cause problems.  The rain head is amazing.  All the settings on my faucet were amazing.  I felt cleaner after my shower last night than I have in months because I could move around in the shower and do things like shave under my arms without worrying about turning and hitting the tub wall, which honestly is breathtakingly painful.  When I do things like that, my shower instantly ends and I get out and sit on the toilet and cry until I feel I can get weight back on that hip.  I spend a lot of time crying in pain actually.  I think I’ve shed more pain tears in the last 9 months than I have in the entire 36 years leading up to it and I have done some painful things to my body because I am clumsy.

My I’m not sure if it’s good news yet or not is that I got in with the specialist I was hoping to get in with, I have an appointment for 9:30 tomorrow morning.  He was actually recommended to me by other CRPS patients.  They say he understands alternative therapies are great, but they aren’t the end all be all and sometimes at the end of the day, they’ve worn off quicker than they should have and he makes sure that if they want to work, they can.

One of his patient’s is the secretary at my husband’s work.  She has CRPS in her neck.  She also works full time despite being partially paralyzed from the CRPS.  Which is a big part of the reason our insurance premiums are so incredibly high.  It’s a small work place, probably less than 100 people on the group plan and 2 of us have CRPS, the odds of that seem staggering, since it is a rare neurological disorder.

She highly recommended this doctor.  She says he helps her meet all her goals and said that she had injections once that wore off in less than a week and he didn’t make a big fuss about it, which is common in CRPS, just like the injections wore off in 4 days when I had them in my hip in July.  Despite the quickness of the injections wearing off, she didn’t miss a single day of work because he hadn’t cut back her prescription of pain medications simply because he was doing injections.  She as well as the nurse at my doctor’s office believes that he might have CRPS.

The bright spot was when they called me to make the appointment, they wanted a list of every place I had CRPS or thought I might have it.  The lady that scheduled my appointment kind of laughed when I gave her the list and said he usually focuses on one affected part at a time, so pick my worse one, which is my hip at the moment.  She even asked it I had swelling or discoloration anywhere.  Those are questions that the quack I saw at the beginning of the month who was supposed to be an expert on CRPS didn’t ask.  I do if anyone cares.  It’s not all the time, but sometimes my hip and thigh become mottled red and white.  The swelling in my hip and thigh on the right side seems to be permanent.  It doesn’t respond to steroid or NSAID injections anymore.  It did respond to NSAID injections the first week I had it, but not since then.

However, I’m not getting my hopes up.  I can not handle walking out of another doctor’s office this month and feeling like I’ve been sucker punched because the doctor did nothing to help me and didn’t even seem to know or understand what I was talking about.

Back to writing.  I’m hoping to be at least a quarter of the way done by the end of today because I have no idea what tomorrow is going to bring for me.  Wish me luck! And if you believe in a god, any god, or a pantheon of gods, please send up a prayer for me that this is the right doctor.

Serial Killer Horror

I clearly label the D&R books as serial killer horror.  I’m aware they can be a little violent and gory from time to time.  However, I don’t consider myself to be a promoter of violence, just a story teller.

It appears someone disagrees with me.  Specifically I was accused of promoting violence against women with the prologue of Elysium Dreams.  I will admit it’s brutal, violent, the victim is female, and there’s a touch of gore there, but not it’s not just there for blood and gore to be in the book.  I think I do a good enough job with blood and gore towards the end of Elysium Dreams.

That’s part of the reason I label the series serial killer horror.  I want readers to expect it to be a little violent and maybe at times a little gory.  It would be very hard to develop my characters without the juxtaposition of violence in the serial killers with the less violent (most of the time, less violent) serial killer hunters.

I get that some people are sensitive to violence, that’s why I label them as horror.  And while the advert has done wonders for downloads of the series, part of the reason I’m avoiding Facebook still is because it’s hard to know which messages are friendly and which ones aren’t.  I’ve gotten some pretty strong messages lately, a few have been strong enough that I’ve reported them.

For the most part, feedback is positive on the D&R series, especially when readers  them and The Dysfunctional Chronicles where there is a smidge, a very small smidge of Aislinn Cain crossover in the later Dysfunctional Chronicles and Nadine & Daniels’ Security in the later Dreams novels.

There are times I wonder though if I get a touch more hate mail and chastising because I’m a woman.  I know it sounds crazy, but I can’t help but wonder about it.  I’ve been told I write like a man, which is fine.  But that comparison leaves my mind open to asking questions like do I get more flak for the violence and gore because I am a woman?  I already know I get raked over the coals once in a while for not writing romance in my novels because I’m a woman and it’s just expected of me… however honestly, this series wouldn’t work if Aislinn had love interests, they’d either be serial killers or they’d die because of the serial killers.  It was one of the reasons I made her character asexual all those years ago when I created her.  Because at the time, I wasn’t shy about writing romance or erotica, so I could have gone that way.  I made the conscious decision though that the series just wouldn’t work as well if  Aislinn Cain dated.

Furthermore, most sociopaths and psychopaths aren’t actually sexual creatures.  They have sex, but it’s more a means to an end than for the joy of having sex and romance is pretty much a non-starter for them.  So I got to avoid the mushy stuff and concentrate more on what I wanted to do, which was write books with no romantic plots and rarely romantic subplots and those never involve the main character.  So all those wishing for a Malachi/Ace get together, remember if they have sex, Malachi will have to die…  Those are the guidelines I have set forth for this series to keep it from becoming a ridiculous murder fest where Aislinn’s love interests either turn out to be serial killers or die via serial killer.

However, knowing what is expected of me as a female writer brings back those questions… Am I judged more harshly for violence and gore because I’m female than my male counterparts?  In other words, if I had gone with H. James or Haden James on the cover of my books and used pictures of my husband for author pictures, would readers ignore the fact that there was violence and gore and just accept it?

It’s a question I’ll never know the answer to, but it’s an interesting one to ponder over.


Making My House More Hadena Friendly

We’ve spent the last month making my house more user friendly for me.  For instance, taking a shower in our bathtub shower combo can turn a good day into a bad one pretty quick.  My hip only raises my foot 12 inches off the ground which isn’t always enough to step up and into the shower.  So we built me a shower with a 4 inch step.

The layout of our bathroom doesn’t allow for a shower chair to be used in the upstairs main bathroom.  It also doesn’t allow for grip bars to be put anywhere that will help me.  My hips don’t allow me to scoot either, so I knew we were going to have to build a shower that I could use.  Which has caused me to be broke.

My checks have been very small the last couple of months because it’s been so long since I released a book… any book.  Like in March, I’m going to receive checks totalling a whole $700.  Out of that I have to spend $500 on medications and try to make a car payment on a car I can no longer drive but is at least somewhat comfortable for me to ride in.  Which is why I stress out about needing to write and publish a book all the time.  Picking up new readers always helps, but book releases are where I make most of my money, unless I can get a BookBub advert run.

Thankfully I did get one and the results have been great.  In April I might be able to catch up on my bills because I am overdue on everything.  It’s hard to pay bills with $200 or so left after medications.  I talk a lot about the pain, but not the cost of having a chronic illness or disease.  It is not cheap.  My private insurance is astronomically high.  My husband pays that and we have seen an overall decrease in money coming into the household because in a twist of fate, the secretary at his work has CRPS in her neck.  That means two people on their small 100 people or less group plan has this rare neurological disorder.  It costs health insurance companies approximately $60,000 in a year to treat CRPS and they aren’t making $120,000 off our group plan even if several people on it never go to the doctor and we all have copays and high out of pockets and deductibles.

And I was close to meeting our deductible at the end of December, but then insurance told us that it was starting over with the new calendar year.  We had to change providers in November 2017 because our old insurance company dropped us when I got diagnosed with CRPS because they weren’t shelling out the money for two of us to have it and get treatment.  Now I have to try and come up with another $2,500 out of pocket to meet my deductible.  That means this small paychecks from where I haven’t published a book are killing me.  I am more stressed about money now than I ever have been and on top of it we are having to make my house for user friendly for me and my CRPS.  This includes the new shower, grab bars everywhere, because as embarrassing as it is, especially first thing in the morning, there are times I sit down on the toilet and can’t get back up.

This meant we couldn’t buy the plastic insert shower.  The seats were all too short.  They were 16 inches and sometimes I can’t get my hip to let me down to 16 inches and if I do I can’t get back up, same problem as the toilets.  Plus with my swollen hip and thigh on the right side, the seats weren’t always wide enough.  I needed them to be about 18 inches wide for me to sit comfortably on them and get all my swollen body on it.  Donations from friends, family, and readers made it possible for me to build my shower on my tiny paychecks.  I can’t think you enough for that.  My new goal is new toilets and grab bars.

Gab bars are cheap, but since I’m behind on just about every bill I have, it’s hard to spend the extra $30 or $40 on them.  Plus they make taller toilets.  I know that sounds weird, but they do.  Right now we have standard height toilets, but in our old place we had to replace one of the toilets and the toilet we replaced it with was taller than the standard toilet by an inch or so.  It was also a little wider, which would be good since I have one thigh that is an extra, extra large.  I’ve always had large thighs.  Even when I was tiny, and in high school I wore a size 8 pant and medium top.  I had large thighs even then.  My jeans always gave out at the knees and the inner seam at my thighs before anywhere else.  Have one that is permanently swollen and discolored and it is discolored, was just something I didn’t need. So my next goal is new toilets, toilets that are a little taller than standard and grab bars.  I’ve been saving all my change (pennies, nickles, dimes, quarters, etc) from buying stuff for my shower and I’m hoping I can get the shower rod, shower liner, and maybe a few grab bars bought with my change.

And I got the awesome news from a disability lawyer I talked to that simply because I do make at least some money every month off book royalties chances of my getting even partial disability is slim to none.  So now I am looking into supplemental plans for my private insurance.  Unfortunately, I haven’t found one that is affordable for me.  I’ve also been looking into HSA’s but again, finding one I can afford is a problem.  They all want me to put in a set amount of money every month and well, sometimes I just don’t have that money.

My biggest dread about finishing Demonic Dreams is that I’m going to have to pay my editor or hope she let’s me give her an IOU, which is unfair to her.  I had the same problem with Dysfunctional Mob, not the editor so much, but the cover artist.  I have the cover for Demonic Dreams, I do not have the cover for Dysfunctional Mob and I haven’t had the money to buy it.  Okay, enough of that.

Big thanks to my cousin Melinda and her husband Tony and my husband J for doing all the back breaking labor of laying the tiles in my new shower, as well as building walls, the seat, grouting it, figuring out how to hang the shower faucet.  All that fun stuff.  The grout is currently setting up and it should be usable in a few days.  Which would be awesome because right now I will go a week without showering just so I don’t accidentally kick the side of the tub wall getting in or getting out of the shower.

And all this stress is bringing back my cold I think.  I woke up congested today and with a slight earache and sinus headache.  Anyway, this is what your wonderful and generous donations went to pay for when I didn’t have to use it to buy my Lyrica.  Eventually I’ll post a thank you list.


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