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. 🙂

When It’s Too Late To Fix Leukemia

This week, a local anchorwoman died of complications from leukemia. She was diagnosed on Tuesday and was dead Thursday night. Two days. That was it.  She had been working as scheduled  up until the day she called 911 for a worsening bladder infection, with severe pain and nausea. Then she got the devastating news she had leukemia. The next day she needed emergency brain surgery, and never woke up. She was 29 years old. Vibrant. Professional. Animal lover. Upbeat.

You can search:  Jeannie Hayes, WREX-TV 13, Rockford, IL and get more of the media reports.

Of course my first thoughts were with her family, friends, and coworkers. They had no time to really register what was going on.  One day, she was working, the next day she finds out she has cancer, and on the second day she died.  Scary stuff.  I’m sure they’re still in somewhat of a state of shock. Her viewing was today at a local church.  A week ago, their lives were ‘normal’.  They had no warning.

As a leukemia survivor (also with acute myelocytic leukemia, subtype M3, or acute promyelocytic leukemia), it hits really close to home. I don’t know what subtype Jeannie had.  I found out about mine through a standard CBC (complete blood count) that was part of my annual diabetic assessment. My lab work was BAD. As an RN since 1985, I didn’t necessarily know what flavor of ‘bad’ I had, but I knew it wasn’t good- I had a bit of warning.  I had been scheduled for a bone marrow biopsy, but didn’t make it to that appointment before the shortness of breath led me to a 911 call. I have a history of blood clots in my lungs, and have been told to always get anything ‘funky’ checked out. I knew what my lab work looked like. And I knew that the shortness of breath was likely due to anemia. But I never know…

So, I’m in the ER for hours (crazy night there), and got admitted when the doc told me she didn’t know what was going on, but my labs had dropped by half in a couple of weeks (there wasn’t much room for them to drop). She was really concerned. The next morning I met my oncologist and within 10 minutes they were doing the bone marrow biopsy.  The morning after that, I got the diagnosis, was moved to a room in an area set aside for those who must have as minimal exposure to infection as possible, and started on chemotherapy pills.  I also got a PICC line inserted, even though my platelets were horrible; I had to have vein access for the IV chemo that started the following day.  I soon developed purpura on my legs and abdomen (tiny purple hemorrhages from low platelets)… not a good sign. Thirteen units of packed red blood cells (blood transfusion) and twelve units of platelets were needed during my stay… THANK YOU, blood donors.

Had I not gone for the annual diabetic lab work, I wouldn’t have lived. My oncologist told me that I was in really bad shape.  He called it ‘dead sick’ in his Iranian accent.  And I remember being too sick to care what they were doing. I had some infections set in, and was on vancomycin and gentamycin for about 5 weeks. For those who know what those are, they know that they’re strong antibiotics. I also was given 2 ‘protective’ eye drop antibiotics and steroids.  The ear infection and cellulitis into my neck and jaw were pretty bad.  The ENT doc had to pry my ear open to put in a ‘wick’ for the ear antibiotic drops to seep into- there was no opening in my right ear from the swelling. None…it was ‘slammed’ shut with edema and infection. The ENT also had to suck out the pus from my ear.  My temp was over 103.  For someone with no immune system to speak of, that’s not good.  I got very lucky.

If I hadn’t had that routine CBC, I wouldn’t have gotten any follow up, or known what was going on.  I’m so used to having something go wrong medically, I blow off a lot.  Note to self: don’t blow stuff off.  My ‘vision’ of my demise is me just going to bed, and not waking up.  My dad may have found out I was dead after not hearing from me for a couple of days. I hate to think if he would have come over and used his key to get in, finding me on his own… and my dog wandering around confused (we talk nearly daily as ‘attendance checks’- he’s 80 years old, and I’m a train wreck- we try to keep track of each other).

I’m so grateful I found out in time to get help.  I’m expected to be OK. I went into remission during that first 6 weeks in the hospital (April-part of May, 2010).  In April 2015, pending no relapses, I will be considered cured.  I’m one of the lucky ones. It was hell going through chemotherapy for 19 months, including 50 doses of arsenic infusions (IV), and 11 months of tretinoin, methotrexate, and M6mercaptopurine.  My body went through a lot. But, I got a chance to live.  APL is one of the most curable forms of leukemia, when it’s detected and treatment started immediately.

How I wish Jeannie would have had that same chance.  Even ‘just’ a chance to say goodbye, and have some time to do what she needed to do before ‘just’ not being here anymore.  I wish that for everyone.  IF someone ends up with cancer (or anything terminal), I wish them the chance to see their loved ones and for them all to have the opportunity to let go of each other, hard as that is.  I wish them the chance to ‘finish’ things. My understanding via the tribute on her news channel (WREX-TV 13), is that her family got there when she was in a coma after the emergency brain surgery. They came as fast as they could, but the cancer was faster.

I later read that the average time someone lives without treatment after the onset of the disease (with minimal symptoms) is 30 days.  Many people are diagnosed at autopsy.  The biggest ‘tip’ I could give anybody- if you feel something isn’t right, get it checked until you get an answer that makes sense.  Not everybody can be fixed.  But everybody deserves a chance.

For everyone else, it’s probably a good idea to know what you want to say to people, and do it.  Get things put together.  None of us are guaranteed tomorrow.

EDIT- 11/21/2012- Today, WREX gave info about the specific type of leukemia that Jeannie Hayes had. She had acute promyelocytic leukemia (APL).  This is the same type of leukemia I had- and makes it even more sad, since it’s one of the most curable when it’s caught in time.  Like Jeannie,  I had no specific symptoms to suspect cancer. I had routine lab work done.  Jeannie had the bladder infection, and it was ‘caught’ when she went to the ER for that.  I also had some bleeding issues- but was in the hospital, and because I was already being treated, I was able to recover.    My thoughts and prayers go out to Jeannie’s family and friends.  There was no time to say goodbye.  ❤