To Go Or Stay…

Yesterday, I overdid it a little.  Which is sad since all I did was plant flowers.  Today, my hip is determined to remind me that it hates me.  For the record, the reminder is coming through loud and clear.

I am without a pain management doctor right now.  Mine cut me loose April 9th.  I have spent a little over a month trying to find a new one.  When you have CRPS, that isn’t easy.  Not all pain management doctors will accept CRPS patients, because there isn’t a lot they can do for a CRPS patient.

This means I am without pain medication.  Everyone with CRPS is different.  For some people, pain medication doesn’t help at all, for some marijuana is the best relief, for some, an e-stim makes their lives bearable.

I am not a good candidate for an e-stim because the electrical stimulation actually makes my pain more intense in my hip.  It happens.  I’m allergic to hemp, in all forms, and it isn’t legal in my state yet.

Today, it is taking everything in my power not to go back to bed, pull the blankets up over my head and cry myself to sleep.  I probably would do this, if laying in bed didn’t make my hip and spine hurt worse.  This means at by 10 am, I already know my day is a train wreck and I will not get anything accomplished unless I push myself past a point of no return.

My butt cheek is already swollen, something that happens when I overdo it.  My thigh feels like it is being electrified.  I’m having trouble picking up my foot when I walk.  I’m limping.  Essentially, I just don’t want to move anymore.  And before anyone says “moving is the best medicine,” this isn’t true if you have CRPS.  In the early stages, physical therapy and movement can decrease pain caused by CRPS, but I was out of the early stages of CRPS years and years ago.

One of the problems with CRPS is that there isn’t a “standard set” of symptoms, not really.  Nerve pain is weird in that it is somewhat person specific.  I got called a liar in a support group this past week, because a different CRPS sufferer told me my nerve pain can’t feel like a broken bone and that it should feel like a muscle ache.

I think the person got in trouble, because they became oddly silent on Saturday and Sunday, something this person isn’t known for.  However, I don’t know many people that describe it as a muscle ache.  I’m sure it can feel that way, but most people describe a sharp stabbing pain.  Which is what mine is, a sharp stabbing pain that feels like I have a dagger holding my femur into the hip socket or something.  It feels like the pain is in the bone not in the nerves surrounding the bones.

However, it is hard to explain that sensation, that your bones have been pierced and are now being held in place by a sharp stabbing pain.  So I just describe it as I feel like my bones are broken or worse, when it is really bad, I feel like someone has run over the bones and crushed them to dust in my body.

This actually has translated into my work some.  People have asked me in the past where my realistic descriptions of my murder pain comes from… It comes from my nerves.  I have never been stabbed, not really.  I guess I was stabbed by a wood burner, but that isn’t a knife.  However, I can imagine the pain because I feel it, my nerves produce it all the time.  I have broken my arm and it didn’t hurt as bad as my hip hurts.  Nor did it hurt as bad as my lower spine, which is actually very close to my tail bone.

So, as I sit at my computer, in serious pain, to sore to even get up to go urinate, because I know I will have to sit on the toilet and then try to get up… which is a different form of torture.  I wonder if I should go to an urgent care facility and try to get at least some of my pain under control.

 

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BOHICA

I have bad teeth caused by orthodontia Imperfecta; a few of my permanent teeth grew in with holes in them, others lacked enamel, yet others lacked calcium, and a lot of them have fibrous roots.

They wanted to pull them all when I was seventeen, so essentially when they finished coming in and I wouldn’t agree to it.  One of the dumbest moments of vanity I have ever experienced.

Last weekend one of the broken ones started to throb in pain.  Tuesday I saw a dentist who decided he wanted the two teeth surgically removed because there are times when lidocaine doesn’t work very well for me and because I have a nerve disease.  Surgically removing them would cause less nerve trauma and therefore less pain.

They set up the appointment for June 5th.  The surgeon was able to work me in later that day.  Which was good, because one of the teeth was still killing me.  I went and he did not surgically remove them.  He pulled them, just like a dentist would have.  One of them, I wasn’t numb for and I kept trying to tell them how much it was freaking hurting, but it was hard to get their attention when they were wrist deep in my mouth with dental tools.

They told me the extraction went fine and I shouldn’t have a lot of pain.  My upper jaw is still killing me.  Tylenol hasn’t touched the pain, even at 1,000mg doses.  I called the oral surgeon’s office twice to see why if it was routine, I hurt this bad and they kept telling me to take Advil.  I kept telling them I couldn’t take Advil.  They kept insisting if I would just take an Advil the pain would go away more than with even a 1,000mgs of Tylenol.

On the second call and the Advil spiel again, I told them that if I took an Advil I’d end up in the hospital because Advil makes me feel like someone has stabbed me with a pitchfork.  They finally seemed to get it, I can’t take NSAIDs orally.  They still insisted everything was routine and that I should be fine in a few days.

A few more days has passed.  The holes themselves have turned white and look odd.  One of them still hurts up into my face.  When I called them yesterday, they said if I was still in pain come Tuesday of next week, they would make me an appointment to see the oral surgeon again.  Yeah, because that went so well the first time.

I have a line of pain across the roof of my mouth that goes all the way back to my throat.  And all the teeth on that side of my upper jaw ache.  My cheekbone hurts.  I’m still having issues eating even soft foods.  I’m doing the saltwater rinses, they burn like hell and make the holes more sore, but it’s supposed to keep them from getting food stuck in them or get infected.

Up to this point, I have had 3 other teeth pulled, one a front tooth, like what we did Tuesday, none have hurt like this.  I’m worried there is something wrong, but if the oral surgeon won’t see me there isn’t a thing I can do about it, because as a chronic pain patient, I have realized that unless I think I am dying, have a metal pole sticking out of my body, or have a broken bone sticking out of my body, I should not go to the ER or an urgent care facility… Because all chronic pain sufferers are treated like drug addicts.

My legal refill date on my pain medication was May 7th.  I ran out May 8th, like I should have.  However, I don’t have a pain management doctor because mine told me in April to find a new doctor and finding a new doctor has been brutally difficult.  So I am stuck all weekend with a throbbing jaw.

Stopping Treatment Again

I guess I will be stopping treatment again for a while at least.  The expert can’t take over my pain management because he already has too many opiate patients.  My primary has no idea where else to refer me.  He did refer me to someone today.

Within an hour of the referral that pain management doctor called me to tell me he didn’t take CRPS patients, because they are opiate patients.  This means that the only thing that can be done for me, is an opiate prescription to make me more comfortable in my own skin.

This is not the first pain management doctor to refuse to take my case because I have CRPS.  Just another in a line of them.  This is the same reason Dr. Wonderful asked me to find a new pain management doctor.  He doesn’t want another opiate patient.

It is very hard to keep a positive attitude when you deal with this situation over and over and over again and know that when your prescription runs out, you are going to be in so much pain, you will have lots of days where the moment you wake up, you will wish you hadn’t.

So that doctor was my last hope.  I don’t know where to go from here.  I just know that in two weeks, I will return to pain so bad that it is hard to breathe.  I am very depressed today.  This is why CRPS is called the suicide disease and it’s going to get worse.

When the Doctor Quits

Having CRPS has opened my eyes to the realities of a world I didn’t realize existed, one that is neither fair nor just.  On April 9th, I had a follow up with Dr. Wonderful who informed me that I needed to find a new pain management doctor because he couldn’t help me since I had reacted badly to the injections.

Luckily, I had already gotten in to see the only CRPS specialist in the entire state of Missouri who didn’t minimize my pain or treat me like a burden.  He is technically an anesthesiologist who has become an expert in CRPS pain management.

I live in a town with a huge teaching and research hospital.  However, when I call a pain management clinic to get an appointment and they ask me what I have, they usually tell me the clinic doesn’t deal with CRPS patients.  When everyone was convinced it was the nerves in my back causing my leg pain, it was easier to get treatment.  Now that we know it’s CRPS causing my leg pain along with my hip pain, it’s nearly impossible.  Even worse now since I have reacted badly to two steroid injections in that hip.

Now I have to cross my fingers and hope that the expert in St. Louis will take over my pain management.  I think he will.  He seemed very nice at my consultation with him.  He was also very knowledgeable about the condition something else I can appreciate because honestly I get a little tired of telling doctors what I know about CRPS in an attempt to get treatment for it.  I don’t think I ask much of treatment, the ability to continue working is a big thing for me since a lawyer told me I probably would never qualify for even partial disability since I have income every month from book sales regardless of whether I have published or not, but publishing makes the income significantly better.

Having a doctor actually quit on me like Dr. Wonderful did is a little stressful.  Especially since I already know that not many pain management doctors where I live will take CRPS patients.  I would love to blame Dr. Wonderful, but it isn’t entirely his fault, a lot of it is the climate regarding certain medications.  A climate that has jaded me and made me stop sympathizing with others quite as easily as I once did.

Long Sunday

I can’t take any medications on Sunday, not my Lyrica, not my muscle relaxers, not opiates because we are doing an endoscopic ultrasound of my gallbladder on Monday and all medications can interfere with its seeing how it functions on the ultrasound.

I accidentally kicked my physical therapist today. Luckily, my body gives me some warning before a neuropathic twitch happens. It’s almost like a feeling of pain, but not.

I was able to tell him I felt like was leg was about to kick out. He was stretching my hamstring and my foot was by his head. Thanks to my body’s warning system, I kicked his shoulder and not his head… I was wearing heavy combat style boots. He said it hurt a little and it probably did.

I felt a bit bad about it but he told me it wasn’t a big deal, I couldn’t control neuropathic twitches no matter how much my brain wanted to.

It did alter my physical therapy routine for the day because if I have a neuropathic twitch hit my inner thigh, it’s followed by a whole leg muscle spasm that turns me into jelly. He wasn’t able to get anything to stretch or beat weight after it passed. So, we scrapped a lot of today’s exercises and stretches.

I have felt like crap the rest of the day. My leg feels weak and shaky. A neuropathic twitch in my leg or hip just sort of ruins my day. It doesn’t increase my pain, but it does limit what I can do.

Gallbladder

My doctor informed me that the gallbladder tends to get snippy after a serious health crisis.  Which I technically have been in since June 2017.  Now, my gallbladder is giving me issues.

And my husband who has been sick for a week with the Little Cold that Wanted to be Flu has passed it to me.  I had this in January and thought it was going to kill me.  Sleeping a ton is really hard on a body that hurts, especially one that has constant pain in the hips and spine.

I went to my doctor this morning bright and early to talk about my gallbladder.  However, I was running a fever while I was there.  They weren’t sure why at the time.  After lunch, I lost my voice and nothing sounded good for lunch except greasy food, which is a problem at the moment because see title and yet that’s the only thing I can taste really well when I have a cold is greasy or salty foods.  I tend to eat a lot of things like French fries when I have something wrong with my sinuses.  Normally I dislike French fries so it’s strange that I crave them when I’m sick.

I did manage to go back to work this month and finished writing my next book, the one my pain held up for 10 months.  I feel good that I finished it and I’m glad I finished it before the Little Cold that Couldn’t took hold in my body.  I even got a good start on another D&R book and worked a little bit on a Dysfunctional Chronicle.  If I write 200 words a day, I will finish the Dysfunctional Chronicle May 1.  But I imagine even with a cold I’ll write a little more than that a day.

I’m ready for some normal in my life.

 

A complete Waste

I went to bed last night with the best of intentions of accomplishing things today.  So far I have failed miserably in that department.  I do have a load of clothes washing, but that’s about it.

The problem is my pain seems to be uncontrollable today.  I took all my meds as soon as I got up and I know they have kicked in because I have brain fog.  But they didn’t seem to help.  On days like this, I’m not sure what to do.  I don’t know whether to call my doctors or go to an urgent care center or whether I should just suck it up and hope tomorrow is better…

The last few days I have felt like crap too.  Not like “I have a cold crap” but… I don’t know.  It’s weird.  It’s like my body knows it is fighting a virus or bacteria, but it hasn’t progressed far enough for me to have symptoms.  I am hoping it isn’t a cold.  I don’t think I can handle another cold with whatever I have.

I would say it was malaise of some sort except I have some physical symptoms.  Yesterday, it felt like I couldn’t blow my nose enough.  Nothing was coming out, but it still felt like I needed to blow it every couple of minutes.  I followed that up by sleeping nearly 10 hours and I feel like I need a nap now… which is odd because I’ve only been out of bed for about 4 hours.

I don’t know if my pain being so high is making it worse or vice versa.

Lola nearly scared me to death last night.  My husband got home from darts and Lola jumped out of bed to greet him at the top of the stairs and her legs gave out, then she belly crawled a few steps and didn’t get up again.  We spent about 30 minutes trying to figure out if she had hurt herself, but I could touch her legs, hips, back, even her paws without a whimper, whine, or growl.  I think she has some hip problems, I’ll find out soon and someone gave me a recommendation for a supplement for her that I’m going to start her on.  Luckily today she is running around, playing, acting fine, and we haven’t had a repeat of last night.  I think she got down off the bed and maybe she twisted wrong or hit the floor wrong and it made her hips give out or something.  I don’t know.  I just know that my heart was still racing about it when I went to bed.  She slept fine and today she seems fine… Do dogs have trouble with their limbs going to sleep?  I don’t know.  If so maybe she got down and her back legs were asleep or something.  There are times I think Lola and I have matching hip problems.  She is half German Shepherd, a dog breed prone to hip dysplasia.

Hip dysplasia isn’t my problem,however that would be easier to treat and manage, I think.  But I’ve seen enough X-Rays of my hips over the years to know the socket is fine, if a little arthritic.