An Arc

I can’t believe I haven’t blogged in a month!

It’s been QUITE a month.  I thought that by now I’d be writing about my adorable tutoring students, and how every day I could see in their happy, fascinated faces that I’d made a REAL DIFFERENCE in their little reading lives.

Unfortunately, Health ran interference on my Life, and Health is a hog about always taking center stage.

TUTORING

I realized a few weeks into the Americorps tutoring job that I probably didn’t have the stamina, but I was still hopeful that I’d be able to increase my strength day by day.

Then I fell last Saturday.  I was in the basement, I washed my hands (thereby getting a bit of water on the concrete floor) then turned to walk away and fell HARD right on my face.  My nose was bloody, my tooth was chipped, and my chest felt as though someone with huge boots had kicked me, HARD.

Getting up was hard, so hard, but I did it.  I got upstairs and cleaned myself up as well as I could, waited for Andy to get home from running errands, and decided to try to ‘sleep it off’ because I just felt so wiped out after my crawl upstairs.

The next day I hurt just as bad, so we went off to the ER so I could make certain that I hadn’t damaged my spine or any of my cancer-affected bones, and we learned that I had definitely bruised – might have broken (although it’s hard to tell…) – a couple of ribs.  They offered me some pain relief, but I told them in all honesty that I was already taking pain meds for my back and Tylenol was probably the best thing for the swelling that was causing the pain.

Upon returning home, and taking time for some careful consideration, I finally had to admit to myself that I wouldn’t be able to do the duties of my job for the next few weeks, and I couldn’t guarantee that I’d be able to do the work even AFTER those weeks had passed.  So I had to make the very, very difficult decision to back out of the Ameritrade tutoring job, which breaks my heart a little.  So many broken things all over the place.

PAIN CENTER

Tuesday I had a first visit with a pain clinic, which went – oddly.  I’m still trying to work out exactly what happened, here’s how I wrote about it on FaceBook:

My first pain management appt didn’t go well. Apparently I somehow angered the CNP, I’m still trying to figure out how.

One minute she was staring me down (unblinking, very odd) then when I mentioned that it made me uncomfortable, she looked away and said, ‘Well, since I’m not allowed to LOOK at YOU..!’ willfully misunderstanding what I was saying.  The appointment ended with her telling me that it was “a privilege for me to be seen at the pain center,” and she left abruptly.

I had a meeting with another nurse and the clinic manager, they’re going to try to hook me up with a different person – a doctor – for a future appointment. In the mean time I’m reliant on my PCP for my pain meds.

Maybe it’s better to just keep it that way, I got an odd vibe from this pain management center. I don’t have a camera or anything, I can’t ‘rewatch’ the interaction – I’m still trying to figure out what I did, or didn’t do, that seemed to anger the CNP so much.

I walked away with such an odd feeling about the pain center, I’d decided by the time I got to my car not to pursue treatment there.

Yesterday I met with my therapist, who deals with cancer patients and is affiliated with my cancer center.  She was able to pull up the notes from the CNP in my chart, (what was written after our very brief appointment) and I was startled by them.

In the comments I am “She”

She notes that she feels forced to come the [sic] pain center and has no other choice according to her oncologist.* . She also notes that OxyContin is really an “8 hour medication not a 12 hr”*^, she also notes that she will not wean off of her opiods because she has tried and the pain was too excruciating,** she has receiving [sic] medication from her oncology provider at this time.  initial consultation did not go well.  The patient reports to the provider that she was offended because the provider was “staring intently” while listening,^ an apology was provided to the patient^^ and she asked for the clinic manager.  The visit has since ended abruptly.  No charge from the provider at this time as this is not a complete visit.

It continues ominously

Previous to the visit her oncology notes were reviewed – it appears that they have tried to reduce her use of opiods as her oncology diagnosis is in remission.**

Addendum – patients case will be brought to case review for evaluation, as the clinic manager has discussed with the patient, no prescriptions will be provided to her from the pain center.  No UDT was taken today.  Clinic manager aware and involved.
_

* This is not true, I was the person asking for the appointment, I asked my oncologist AND my Primary Care Physician for a referral to visit the pain clinic.  This is a lie.

*^Articles re: 12-hr/8-hr OxyContin problem, it’s a real thing, and I discussed with her that my husband had taken Oxy for over 12 years and this was something he had researched.
          LA Times, May 5, 2016
          Practical Pain Management, July 2016

** I started at 90mg of OxyContin/day in January, and twice I’ve been weaned down successfully (once to 60mg/day, then to 40mg/day) and with my full cooperation.  Recently, my doctor had me step down from 40mg/day to 20mg/day, which I blogged about, and that was very difficult.  My doctor and I decided that it was better to return me to the 40mg/day after a two week trial at a lower dose.


^ It was very odd.  The CNP just sat and stared at me for a considerable length of time, I’d never had a caregiver or anyone stare at me so intently.


^^ It wasn’t.

Now, I’m probably being overly cautious, but I want to get this in print because I feel like the end of her comments on our visit sound as though she’s planning on taking this to whatever committee addresses these things, and in my worst nightmares she might try to get me declared a pill-seeker.

All she had to do was look at my file and see the scans of my cracked vertebrae to understand the need for ongoing pain relief.  Oy vey.

Chronic Pain Revisited

About nine years ago I was diagnosed with Fibromyalgia, which was a kick in the pants.  But I discovered that regular exercise (bike riding for me), vitamin D3 AND cutting wheat out of my diet seemed to help me quite a bit.

Just last year I discovered that ALL wheat wasn’t the problem, just – maybe – wheat that had been processed with Round Up during harvesting. So I decided to stick with only organic wheat and that worked well.  So when I wanted a treat, I’d bake it myself, and we found a really nice organic pasta that seemed to ‘play well’ with my pain.

Now I’m facing a new kind of chronic pain, and this one won’t be made better with diet (although exercise is always good at strengthening the muscles, which help support my body and can ease pain…)

My new chronic pain comes from the damaged vertebrae (crushed? split?) T9 and T10 mostly, along with one lower down in the lumbar area.  These are areas where I had tumors growing during my lymphoma.

My back pain was what alerted me that there was something more serious going on in my body.  Apparently by the time I had my MRI last July and they found the tumors (spine ones, AND tumors in my chest area and back of my skull) the spine tumor had grown SO large that it had grown through T9 & T10 and had split the verts, or done some kind of major damage.

Through the miracle of radiation treatments and chemo, the tumors are gone, and I am in remission, and I am glad and thankful.

But the damage caused to the spine is still there.  It will remain, and it will cause me pain.

Spinal Cord Injury Levels

I have a special knowledge of this pain because, ironically, Gerry suffered with his T9 & T10 when they were crushed (possibly during physical therapy he shouldn’t have been doing) and he had extreme pain.

He had a procedure called kyphoplasty (he was supposed to have vertebroplasty but as they were wheeling him into the operating room they told him that his insurance would only cover the first procedure, not the one his doctor had recommended…)

But I saw how he suffered every day after his diagnosis with the pain.  Gerry was NOT a complainer – not like me, I could win a gold medal if complaining were ever an olympic event – so when he would mention his back pain it was notable.

He took Oxycontin twice a day, every day, and when he ran out of his drug it was dreadful.  Of course he’d usually run out at 5:05 on Friday, just as his pharmacy had closed and wouldn’t open for the weekend.  I started hiding four of his pills so when he’d run out I’d have enough to get him through the weekend.

Different Flavors of Oxy

I take Oxy three times a day, every day, every eight hours.  By the time I get to hour seven, my back is complaining pretty badly, but I pride myself on seldom dipping into my ‘breakthrough pain’ supply of lower dose Oxycodone.

But I ran out yesterday.  So today I was running on fumes, trying to make do with the breakthrough pain med, which is NOT slow-release so it just doesn’t work as well as my Oxycontin (contin=continuous pain relief)

And Andy just got home, at 6:30, from picking up my refill from my own pharmacy, which is across the street from Gerry’s old cancer center & pharmacy, and which stays open later.  Thank heaven.

Standing here and looking forward, to a life where I will need to take pain pills every eight hours to have the strength to just EXIST is hard.  I know there are other ways to ease pain, and I’m a huge believer in acupuncture and water therapy and exercise.  But, and this I know from my 12 years caring for Gerry, there are some levels of pain that have to be dealt with using the strong stuff.

Being from West Virginia, and knowing the effect drugs like Oxy and Hydrocodone have had on so many poor folks who fall into the pit of prescription drug abuse, my Oxy is a bitter pill to swallow (in more ways than one!)

What this guy calls the “Hillbilly mating call.”

I’m grateful that I have insurance (through the ACA, please mention me as someone whose life was saved by Obamacare when you find yourself in an argument with anyone) and I’m grateful that I live in Minnesota, where the coverage is very good.  Gerry’s coverage, ironically, wasn’t quite as good as mine is, so his co-pay was pretty dreadful.  Mine is notable, but I know how high it MIGHT be, and I’m grateful I can afford it.

Today I had Xrays of both knees because the pain has become so severe when I try to walk that it just feels WORSE than my arthritis used to feel.  I don’t know if the pain increase is in any way caused by the cancer, but the pain is so strong that I’m awakened by it several times a night, when I shift my legs and knees, because that movement is enough to send shrieks of pain up and down my legs.

After the past 9 months I’d be happy never to see the inside of a hospital again, but part of me is also wondering if a knee replacement is in my future.  I see an orthopedic doc in a few weeks, the same doc I saw 2 years ago who gave me a shot in my knee that helped quite a bit, and I’m curious to find out if this knee pain can be surgically remedied.

Adult Training Wheels

To that end, I’m actively seeking someone who cycles who has had “adult training wheels” attached to their bike.  I was pondering getting a tricycle, but in honesty I’d rather keep my Trek and use training wheels if that would work.

If you’ve had these training wheels attached to you bike, or know someone who has, and have an opinion about them, I would LOVE to hear it!  I really need to be able to get back on my bike.  I need a non-weight bearing exercise* to build up my muscles and help relieve my pain.  I need to be back on my bike!

The next step will be acquiring them, and having them attached to the bike, but one step at a time!!

*I know you’re going to mention Swimming.  I love swimming, and have no problem with it, but the pool is far from my house and, once there, getting into the pool is a bit of drama with my limited mobility.  If I could get my bike working for my damaged body, it would be available to me 24/7 and would be easier than getting into and out of a pool.