Frustration with Chronic Health Issues and Pain Control

Yes, I know I write about this often.  It’s my primary way to get stuff out of my head and blow off some steam.  I figure that people can choose if they read this or not; I have no choice living with it.   I’m frustrated.  I’ve had more stuff going on the last few weeks that have added something else to the list of physical problems.  I broke a tooth (doing what, I’m not sure), and when I went to have it fixed, I opened my mouth really wide and felt something pop or pull- something ‘not right’- in my jaw.  I got a bunch of novocaine for the tooth repair, so didn’t think much of the jaw until the next day.  I still thought it was possibly just a muscle strain, so tried to blow it off. That worked for about a week and a half, each day getting a little bit worse.  I went to an urgent care clinic on the weekend when the pain got pretty bad, and the lackluster nurse practitioner said he thought it was TMJ.  I always thought that was a more chronic wear and tear thing, but evidently not.  It can be acute or chronic.  I had the other side of my jaw knocked out of place during a rape/attack in 1987, and while it has never closed right, it never hurt- but I wonder if it set up the other side to be more sensitive to injuries.  I don’t know.  I’m just ticked off.  It wasn’t anybody’s fault when this happened a few weeks ago- I’m just tired of something else going wrong.

I went to see my pain management doc, and he gave me more info about temporo-mandibular joint issues.  He said that my description sounded fairly typical.  He felt the ‘popping’ and ‘crunchy’ stuff when I opened my mouth. He thought an injection into the jaw joint might help (he’s injected my spine several times so getting ‘shot’ didn’t bother me).  Initially, the injection only lasted about 6 hours, but today (2 days after the injection), it does feel better.  I know that sometimes the steroids take some time to kick in.  I’ve since read that injections into the TMJ can cause increased joint destruction if done more than three times a year, or more often than every 3 months. No problem.

The pain doc also increased the frequency of an opiate I take (fairly mild one), and I ‘gave in’ and took it more frequently yesterday, per the new orders.  That may have affected the improvement today as well. I get so tired of dealing with pain management issues.  I’ve worked in the drug and alcohol rehab business as a charge nurse (RN) in detox.  I’ve seen what addiction looks like.  I’m not someone who is likely to take too many meds- if anything I back off.  I’ve asked for weaker meds more than once when stronger meds were offered. I figure I need to have something  in the future since degenerative disc and joint diseases aren’t going to get better.  Fibromyalgia is a bugger on a good day.  The chronic headaches don’t respond to many medications.  And, because of the ‘opiate hype’ from  high profile situations that went bad, I feel I have to defend my right to not live in constant pain because of someone else’s addiction.  I’m not an addict.  I don’t want pain meds to take care of emotional issues- I want to have decreased physical pain, taking meds as they are prescribed.  I just want to be able to stand being in my own body.

My pain management MD is board certified, and has specific rules for remaining his patient.  If people don’t follow HIS rules, they are no longer his patient.  Done.  I like that.  I also like that he doesn’t act as if my complaints of pain are nothing but ‘drug seeking’ behaviors seen with addicts.  He listens- and that alone is helpful.  I know he’s not judging what I tell him about my pain.   I’m sure he does mental assessments to look for red flags, but I go out of my way to not give him any.  I never ask for refills a minute before they are ‘due’.   I never claim I’ve dropped a prescription down the sink.  I don’t adjust dosing on my own (even though I have plenty of nursing drug manuals to find safe dosage limits).  I don’t mess with the plan.  I’m compliant.  He, in turn, isn’t extremely picky about the time interval between the allotted number of pills prescribed in a day.  He IS definite about how many pills/24 hour period he will allow.  That works for me.  If I take a pill and in an hour or two, I’m still not doing well, I can take another.  Chances are, that will get me through 6-8 hours, or longer.  He does allow for non-opiate meds for ‘breakthrough’ pain. The biggest help is knowing that something is available.  I can put off taking something if I know it’s there- I don’t have to ration to the point of living inhumanely. But I don’t have to take the allotted pills every day either.  I prefer not to.

Addiction involves a lot of components, most notably continuing to use the chemical in spite of negative consequences, and using the chemical for something other than its primary indicated use.  Medicating emotions with medications for physical pain is a huge trigger for addicts.  Many  addicts start out with physical injuries needing physical relief, and end up getting more of a positive emotional reaction that keeps them looking for more. No matter what.  I do believe it’s a disease. Nobody starts out hoping to become an addict.  But, it does screw things up a LOT for those of us who are not addicts and simply want to be able to stand being in a body that hurts all the time.  Statistics state that for non-addicts who are prescribed opiates, and use them as directed, only % 2-5 become addicted.  That’s not the same as dependence or tolerance (the body’s adjustment to having the chemical on board on a regular basis).  I purposely don’t take the stronger pain meds I’ve got (still not that strong in the opiate world) on consecutive days UNLESS I’m dealing with an acute situation.  Like my jaw.  But, if I do take the meds as ordered for 2-3 days, the relief is good enough that I can go back to non-narcotic options… anti-inflammatories, topical creams, ice packs, massage, etc.  I don’t expect to be pain free. That isn’t a reasonable expectation.  But an attempt at humane existence is reasonable, I think.

SO (in general), because %2-5 have problems, % 95-98 are treated as if they simply want a buzz.  That doesn’t add up in my book.  But the ‘problem patients’ are often very high profile celebrities, and anything to do with pain management gets lumped with them.  Opiates are a valuable part of being able to tolerate and treat physical pain.  I know that former co-workers (who are in recovery and have a history of addiction) at the drug and alcohol rehab place don’t agree with opiate prescriptions being used much at all.  There’s a big ‘anti-pain medication’ mindset out there.  And, non-recovering MDs take that stance out of fear and misinformation as well, I think.  They run scared.

My primary care doc isn’t comfortable prescribing opiates for a chronic pain scenario.  That’s fine.  We have an agreement that she can contact my pain doc at any time, and I let her know about any changes in my meds after I see him.  Everything is above board.  Total transparency.  And I don’t ask her for narcotics.  I do discuss non-narcotic pain meds with her, since she manages most of my medications for my list of chronic disorders.  Anti-inflammatory meds are in her domain.

My dad asked if the pills I take will make me addicted. I told him that I’m not an addict, so that is extremely  unlikely.  Addicts become addicted.  Non-addicts seldom do.  But, nobody seems to want to hear about the benefits of treating pain with medications.  Since nobody can see or feel other people’s pain, it often gets minimized.  If it doesn’t bother someone else, why should the one in pain be complaining?  Because an addict can’t handle a prescription for narcotics, then nobody should be given pain relief if they experience the level of pain that narcotics are appropriate for.  It sucks!!

I’m fortunate.  My pain management doc has ‘house rules’ that make sense. He can require a urine drug test at any time.  He doesn’t discuss or make dosage changes over the phone.  If he finds out that someone is jacking with the prescription frequency or dosage, that’s it.   I respect that.   I want someone to have those kinds of rules so he can treat people who are there for legitimate physical pain, who are seeking anything that will make existing more tolerable- not to get loaded.  I no longer have a frame of reference for ‘pain free’…. those 1-10 pain scales are a joke.  I’m always at least a 5-6, which sort of resets the whole thing.  Those scales don’t work for chronic pain. I can use them for new pain (like my jaw).

Regardless, I’m still thankful for a lot.  I’ve got a routine down, and know what my limitations are.  I ‘look OK’ so sometimes I feel very misunderstood.  But, I’m still able to live on my own, and enjoy my puppy, computer, and TV.  I don’t require a lot of time with other humans (which is very fortunate).  I have contact with friends on Facebook even if I don’t have much ‘in real life’ time with them.   I have a relationship with God that gets me through a lot.  If I didn’t have some sort of spiritual belief system, I don’t think I’d be able to tolerate a lot of what has simply become ‘normal’.  I also have the promise that in eternity, I’ll have a new body, and no more pain or disease. 🙂

Just One of Those Months

For the past week and a half, I’ve had some moderately severe jaw pain on the same side where I broke a tooth, and had said tooth repaired, requiring me to open my mouth wide enough to swallow the Hindenburg.  It hurt.  But a few shots of novocaine, and I blew it off.  Until the novocaine wore off.  I’ve been hoping it would just get better on its own, but it isn’t, so I read up on some causes of jaw pain, and ended up going to an urgent care place this afternoon HOPING to get it checked out for being a fractured jaw bone.  The nurse practitioner was pleasant enough, but I’d never seen him, he didn’t know me, and as is common with weekend visits, I got the impression that they figured I wanted pain meds. I have pain meds. I want this fixed !  The intake people asked what pharmacy I wanted (since it’s Sunday), and I told them I  wouldn’t need any prescriptions (I tend to have ONLY my pain management doc deal with my pain prescriptions- keeps things much neater). The nurse practitioner informed me that ibuprofen or naproxen was the best option- which I agreed to without any issues- if this is TMJ- which he determined without feeling my jaw or doing an x-ray.  I felt dismissed.  I don’t go to urgent care places unless I’m pretty dang uncomfortable and need to at least get an x-ray done.  Waste of time.

It’s been a weird few weeks.  I fell about 3 weeks ago, dodging my puppy. It wasn’t her fault- she is just non-stop motion and can turn on a dime.  Fortunately, I landed ‘slowly’ and was able to sort of ease down to the floor, leaving my left side (same side as my jaw pain) the only thing bungled up, and even that was relatively benign considering what could have happened.  I didn’t even drop my microwave entree in my right hand !  But I was sore for a few days.  Maybe I jarred my tooth and jaw.

A week or so after that, one of my teeth (bottom LEFT) broke. I hadn’t noticed it being an issue before- it was simply not there when I was chewing a gum drop.  I found it by gingerly nibbling at the gum drop (too soft to cause a tooth to break), and made arrangements to get it checked- to at least file down the razor edge that was making my tongue hurt like crazy.  Then I got the tooth filled- which is where I had to open my mouth far beyond anything I’d done for decades, if ever.  I felt ‘something’, but didn’t say anything since I wanted the tooth fixed and then out of there.  The dentist is a decent guy- was a former neighbor when I was about 12 years old.  He got the tooth fixed, and I flew like dandelion seeds in the wind. I’m waiting until my dental insurance goes into effect on June 1st for anything major. I finally found a policy (Medicare doesn’t care about teeth) that I can afford and has decent coverage.

But since then, my jaw has been bumming me out, so I got it checked.  I am not pleased with the lack of diagnostics to make sure it’s not broken.  One x-ray would shut me up- I may call my regular doc tomorrow to see about it- she knows me and listens.  I just saw her last week for my disability paperwork review (pain in the butt paperwork for the insurance company).  I’ve declined over the last year.  She thinks that the chemo for the leukemia has pretty much trashed my body- but what was the option? If I didn’t take the 19 months of various IV and oral drugs, I would have been dead within  a week of diagnosis; I’d already had the bad lab work for about 3 weeks, and with APL, people are generally dead within a month if treatment isn’t started.  I had to do it.

We talked about the dysautonomia, and the probability that it’s from diabetes. My blood sugars were outrageous when I was diagnosed (like 389mg/dl for a random check, and an A1C of 10.2).  Nobody knows how long I had been undiagnosed. I was diagnosed with dysautonomia about a year after the diabetes diagnosis, so there’s a really good chance I had the diabetes a long time before it was confirmed.  I’d talked to my neurologist about what else could be done (since it’s a neurological disorder and all), but she didn’t know the cause (and didn’t seem too interested in finding out).  Now, I’m not sure if I should take it up with my endocrinologist, primary doc, or who.  I get tired of all of them, even though they’re all quite kind.  My oncologist tells me to just be thankful I’m alive- and I am. But I do have bummer times when I fell overwhelmed.

Since I’m not working as an RN, I feel so useless.  I have so many physical limitations, even though my brain functions pretty well most of the time. I have brain farts and some memory blips.  Sometimes my word-finding isn’t so great, and I can get emotional over stupid stuff.  And God forbid anybody have the thermostat over 65 degrees, or I panic because I know that I’ll pass out.  I wear the ice vest most of the time when I leave home.  Or, I shop at 2 a.m. to avoid the heat of the day.  I worked nights for years, so being awake isn’t hard.  It’s also nice to not have crowds who are impatient because I’m slow. I get tired of the heavy sighs behind me; I try to stay out of the way- but there’s always some grouch.  Why can’t people just be thankful it’s not them?

Sometimes I get worn out about my spine collapsing (degenerative disc disease), fibromyalgia, arthritis, degenerative joint disease (one knee already replaced- one with a partially torn ACL and medial meniscus that never got fixed because of that pesky leukemia), blah, blah, blah. My primary doc feels that some of the leg pain is from collapsed discs in my lower spine.  If I have ‘known’ collapsed discs in my neck and upper spine, there’s no reason to think they aren’t also in my lower back.  I haven’t had a pain free day since around 1995.  I don’t have that frame of reference anymore. When someone asks me to do one of those pain scales, it’s a joke.  A 5-6 is my normal.  That’s a good day.  I have to make something up to fit their paperwork.

But, I know I have a lot to be thankful for.  Yes- I’m declining. I am having trouble getting normal things done at home.   But, I’m still in my own apartment.  I am not captive to the schedules of some nursing home or assisted living place with employees that would rather work in a landfill.  My mind is still intact (or so I tell myself 😀 ) .  I have doctors that don’t judge me (now that I changed oncologists).  I have a puppy, who is really quite adorable, though she’s going through the ‘el destructo’ phase right now with teething.  But she’s a great little companion, and even though she’s only been here for 2 months, she’s got a place in my heart that isn’t going anywhere.  But some days are just the pits.

So, today I’m whining.  My body hurts.  I feel like a mutant.  A useless mutant.  And yet it could be so much worse.

Loves to play ALL. DAY. LONG.  4 months old now !

Loves to play ALL. DAY. LONG. 4 months old now !

Big girl haircut !!

Big girl haircut !!