All In Good Time

 

public pathway near my house

When I used to walk for physical fitness one of my little pleasures was walking down this public pathway where one of the homeowners had planted white rose bushes.  During summer they would bloom continuously, and it was always a delight to see them.  Sadly someone cut them all down in 2018, so I didn't bother walking down that way anymore.  

Then my back started getting worse and walking for long distances (define 'long') became pain inducing and I stopped walking, choosing instead to preserve my body for weaving.  I still get some aerobic exercise in, but less stress on my back and feet.

Over the past few years I've tried a variety of things to - if not get better - keep going with my 'usual' activities.  I didn't want to have surgery for a bunch of reasons, but treating the symptoms isn't working all that well, and frankly?  My quality of life has been a slippery slope from which there seems to be no recovery.

My options were the epidural injections, painkillers with adverse effects, or surgery - if a surgeon will accept me as a patient.

When the doctor in Vancouver who does the injections suggested I consider surgery, my initial response was 'no'.  But him asking meant I had to think about it.  I had to weigh up how I was coping (not well) with the knowledge that if left to get worse (which it was) the end result was disability.  As in not able to do much of anything that I loved to do.  Up to and including weaving.

So far I've managed to keep weaving in part because it was never the actual weaving that was the problem.  If I look back on my life I can pinpoint areas that probably contributed - carrying heavy cartons, for one.  It was a matter of course that I would pick up and move 40+ pound boxes of yarn and cloth.  Pick up and carry heavy suitcases.  Up to 70 pounds when airlines still allowed suitcases to weigh that much.  Then 50 pounds.  Inevitably I would wind up staying with someone who put me in a lovely guest room up a flight of stairs and I would have to carry my suitcase up - and down - those stairs, lift it into the trunk of the car, lift it out again and drag it through huge airports.

Which I never gave a second thought to, because one just did it.

Then I fell.  I slipped on a patch of black ice and made a one point landing on my lumbar back, right on the SI joint.  I spent a week getting the pain from that calmed down and felt fragile for weeks afterwards.   Then I was diagnosed with *more* cardiac blockages and a specialist who insisted I begin taking statins again.  I didn't want to, said they caused all sorts of muscle and joint pain, but he said my heart was in danger of throwing a heart attack and I HAD to take the statins because I needed by-pass surgery.

So I took them, and within two weeks was having increasing lower back pain, then shooting pain down my right leg.  I stopped the statins and started taking anti-inflammatories in an effort to stop the pain, but nothing worked and over the course of six weeks, with multiple trips to physio, with no end to the pain, my doctor ordered a CT scan.  On the following Sunday I insisted on an ambulance ride to ER because I couldn't stand, walk, sit or even lay down.  The pain was off the charts.

Now, I have had any number of doctors tell me the statins had nothing whatsoever to do with any of this.  I'm just telling the timeline.

After being 'screened' for 'drug seeking' 3 times (twice by the paramedic, one by the nurse in ER) the doctor came in and started in on me again screening for drug seeking.  I was at the end of my patience and stopped partway through my response to him and finally said "I had a CT scan on Thursday.  Maybe you could check and see if that's been read yet?"   

Long pause.  "Why did you have a CT scan?"

"Because my back has been hurting so damn bad!"  (through tears I could not by then hold back any longer)

He was back in about 15 minutes to let me know my L5 disc is partially collapsed, pressing against the spinal nerve.

Since then I have managed the situation with exercises, physio, massage, tried Gabapentin (and gained 30+ pounds, because of course I did), and now epidural injections and stronger pain meds.

And it is doing nothing but getting worse.

There are nights I can't sleep for the pain, most days I block it out, best I can.

I have given up travelling (except to Vancouver for medical appointments).  I have given up teaching in person (one last workshop in October and then I'm done, hopefully with enough new weavers go seed the pool).  I gave up walking for exercise a couple of years ago.  I try very hard to NOT lift anything heavy (which has put all of the workload on Doug's shoulders) and try very hard to NOT bite his head off when the pain is awful and it doesn't take much for me to lose my composure.

Because every minute of every day is a struggle.  Mostly I win, but sometimes I don't.  And it doesn't take much extra stress for everything to spiral from managing to not managing.

Once I accepted the whole trajectory of what was happening and saw that this roller coaster was going nowhere but down, I had to accept I needed to see if surgery was an option.  In spite of my reluctance.  In spite of the risks (every surgery comes with risks).

I had to grapple with the fact that the pain clinic here is beyond coping with anything and not going to see me any time soon.

So I went to see my family doctor this morning with a suggestion of a clinic in Vancouver.  They specialize in spines and they do an intense assessment to determine what is the best course of treatment for a patient.  If nothing else, I would like that assessment, even if they say no to surgery.  

I need to know.  Because knowing is better than not knowing.

And I need to understand what quality of life is ahead for me.  

If my pain can't be effectively treated, then I need to know if a repair is possible.  If a repair can't be done, then I need to know what I CAN do to keep going.

The MRI booking has been sent and now I wait.  Hopefully I can get that done in a couple of weeks, and then see if the clinic will accept me as a patient.

I'm not a patient person, but I also know that I have been inordinately fortunate in my health care professionals.

The doctor who 'caught' me in er and believed I had heart issues and arranged for a stress test.

The doctor who 'caught' me at the cancer clinic and fought to get me on the Rituximab maintenance protocol.

The doctor who 'caught' me at the cardiac clinic when it was determined I needed by-pass surgery and he pioneered the technique of doing that without using the heart/lung machine, which he did on me.

The doctor who arranged for me to be on Praluent instead of statins.

The doctor who arranged for me to have Ibrutinib instead of another round of chemo, and which appears to have granted me an almost unheard of remission.

Now I have to have faith that the right doctor will see me in regards to this situation and allow me to have SOME quality of life for whatever time I have left.

It's just going to take some time.  And knowing how the universe has provided for me for the past 15 years, I can cope.  I may not be very gracious about it, but I CAN do this.

Because I still have way too much yarn I need to weave!!!!