Murmurings of Pain

I’ve had a lot of folks writing to me — thank you!  And many comments on this blog and on FaceBook with supportive messages. One of the most common lines of interest is,

“How did you get through so much pain and NOT realize something was terribly wrong?”

Pushing Through
The pain I’d been experiencing since a mid April fall on an icy sidewalk in the St. Paul Target parking lot had been steadily growing. And I don’t think we can discount the effect of so many TV ads where folks are running their businesses, being moms, picking up huge pieces of sheetrock, etc., and PUSHING THROUGH all because they’d discovered the magical pill/cream/electronic until that will allow them to WORK AT TOP CAPACITY.

I was one of them. At first I thought, “It’s just a pulled muscle, a strain!” and visited my doc to make certain I wasn’t too banged up. I have a history of fibromyalgia, and I spend a lot of time working on my feet. With fiber fair season (late Spring through early Autumn) coming on fast, I needed to be at my best for the yarn dyeing, traveling, booth setup and teaching that were on the horizon.

And I’m used to PUSHING THROUGH. It’s my signature move, my ace in the hole, my super ability to just keep working harder than anyone around me. Or, at least that’s what I thought. And I suspect it’s what many of my companion small-biz-owners also think (looking at YOU, Kathleen Pascuzzi…)

But maybe it’s not always so good to be the one pushing through… Maybe we need to reclaim our bodies. Maybe it’s not such a stellar thing to “John Henry” ourselves against a machine? Maybe these are questions I should have asked a while ago. Maybe instead of asking questions, I should have been listening to my body.

More Weight
From April through May the pain only increased. But my work load was increasing and I was finding my self so exhausted that I was making stupid mistakes in my work. Especially noticeable was an incident at Shepherd’s Harvest in Minnesota on Mother’s Day when the kids came out to help tear down the booth.

The wheel came off one of our hand carts and I did a mad dash to grab hundreds of pounds of falling grid wall. Not my smartest — or finest — hour, and I did some serious damage at that point. To what, I had no idea.

Portal To Where?
My medical center, Health East, has a portal system that’s become very familiar to modern patients in the US. I don’t know if other countries use this kind of system, but because of HIPAA (privacy in medicine laws) the only way to interact with my providers is on the telephone or through the portal.

Since developing Fibromyalgia, I’ve had difficulty with audio comprehension on the phone. Any time I speak with a person whose verbal rhythms are new to me, I get terribly confused. Not the state of mind to be in when discussing medical issues.

Emails are verboten as “too easy to hack”, so I’m stuck with the HealthEast portal, known as “My Chart”  But I’ve yet to meet a portal system that isn’t a bit kludgy. Someday we’ll look back at this era of internet communication the same way we laugh at Monty Burns hollering, “Ahoy! Ahoy!” down the telephone tube.

Still, the HealthEast system is as good as any, and better than most, and I am the oddball patient who actually USES the system to message my docs to discuss treatment. In my current situation, that has been incredibly useful. Sometimes being a Virgo has it’s positive sides (better than the usual Virgo effect of driving away folks who DO NOT stack their pencils by size and hue.)

I began a correspondence with Dr. H, my Primary Care Physician (PCP), and together we tried to figure out why this terrible pain in my back and chest wasn’t getting better. The chest pain felt like my entire upper lung area was on FIRE, and any kind of movement would bring waves of hot pain.

My lower-back pain area, a strip straight above my bum, about 8″ high, made any kind of movement excruciating. Adding to that was a sense of pure exhaustion that I’d been fighting for many months. Reading back over those early email exchanges and  remembering my sessions with Dr. H, I can’t imagine him doing more to get to the bottom of this mystery. I like my PCP; he’s a nice guy, and I also feel that he’s careful and persistent, he did well for me, but this was a diagnosis that had to unfold.

Happy Mother’s Day!
After Mother’s Day I was a mess, but as I discussed above, every TV ad told me that all I really needed was a patch or a pill or a TENS device and I should be able to push on.

Plus, Kathleen shouldn’t be put in a place to pick up the slack. After the heavy work that was Shepherd’s Harvest in early May, Kathleen and I decided that skipping the Kentucky Fiber Festival would be prudent, and it was probably the best decision we’ve made all year. She was hurting from various bronchitis / colds / conjunctivitis annoyances, and I just plain hurt.

My family — in a very REAL WAY — depend on me, on my strength, on my BACK. I was hoping that by skipping a show I would give myself enough rest to heal. But there isn’t enough “rest” in the world to “heal” from Stage 4 Lymphoma.

The physicality of my job is more similar to the hard graft of Grandma Modesitt’s job at White Star Laundry than any job I anticipated upon my graduation from college. I love what I do, but isn’t a large part of WHY I went to college was to NOT work myself into an early grave with physical labor? Actually, that was to avoid becoming a lathe operator at an auto plant in Toledo, never mind…

Having said this, it’s not that hard physical labor caused this cancer, I have no idea what has caused it, but my stick-to-the-job attitude certainly made it more difficult to step away from my responsibilities and ADMIT that something was seriously wrong.

So Push On I Did
I hadn’t put my symptoms together, but they were related. Heightened sensitivity to sound and light (loud noises, especially high pitched ones) had also entered the picture, but I kind of chalked that up to being — once again — an uptight Virgo who couldn’t stand noises that were outside of my control. Noise is SO bothersome to me, I’ve just come to expect folks to think I’m an oversensitive woman who hates experiences outside of my norm. But this was different, this was worse. This was sound being sent straight up my spine through the tumors in my neck.

Forgive Me?
We DID make it out to Ohio for the Great Lakes Fiber Show, and one evening while there we went to dinner with Jan & Dale, some fiber friends from PA. Dinner was arranged at a bar-be-que joint, and it wasn’t suiting me well.

The restaurant was bright, loud, a bit hot (EVERYTHING was hot that weekend) and I felt like a terrible guest. Not able to get comfortable, not able to be satisfied, just stretched tight like a rubber band. That was a moment when I knew that something serious was going on inside of me.

And I felt so guilty about it. That’s what being ill is like for me, feeling SO DAMNED GUILTY that I’m causing folks to change their routines to accommodate my stupid sensitivities.

But I’m at the point of beating myself up for having Cancer. And I digress…

Sharing The Work
May moved into June and my pain worsened. Layla, my dye assistant, began taking on more of the physical parts of our job. She was the tub filler and wringer, I was the dye ‘dabber,’ and if you purchased yarn from us in June there’s a good chance it’s run through Layla’s lovely hands.

Perhaps Layla, more than anyone else (except for my highly observant business parter, Kathleen Pascuzzi,) saw how debilitating this pain was to me. She told me she was worried, I told her to find something more useful to worry about. Such a lovely girl, and I pooh poohed her concern.

After a hard day on the road over the past few months I would sometimes confess to Kathleen that “something” felt wrong, and it scared me. But as the wife and caregiver of a long time bone-marrow cancer sufferer, we don’t throw the C-word around very easily. My feeling that “something is not right!” should have been heeded, by me at least.

But I missed my Miss Clavell moment (nod to Madeleine fans) because I was afraid of being a medical drama queen (or, in my case, a medical drama president as I am a anti-monarchist…)

Estes Park
With June came a long road trip to Colorado for the Estes Park Wool Market where I was teaching a bunch of classes. Kathleen and I had chosen to bring our husbands, Tom & Gerry (of course those are their names…) to enjoy the gorgeous scenery and give us all a mini-vacation. We stayed in a small, but lovely 2 bedroom cottage and while the boys investigated the area, I taugh,t and Kathleen womanned the booth.

But I was insanely exhausted. Sick, suffering, barely able to move. I chalked it up to altitude sickness, but I kept telling my students, “This feels SO MUCH WORSE than it usually does when I’m in Colorado.”

A short 2 months earlier I’d been to the Interweave Yarn Fest in early April, but the sickness didn’t feel quite as bad, and I chalked that up to the 2,500 feet difference in altitude between Loveland and EP.

The main memory of that weekend is exhaustion, and — once again — a sense of disappointing the rest of our group with my inability to even get up the energy to go to a restaurant.

Rocky Mountain Low
Stopping at a recreational dispensary on the way up to Estes Park I purchased my favorite Buddha Bar (peanut butter and weed, perfect together…) but the satisfaction and relief I’d come to expect with my Fibromyalgia pain wasn’t forthcoming. My ‘Colorado Candy’ failed me, and that struck me as odd, too.

Right around this same time a customer of ours who has pain issues recommended CBD oil, so I had started taking that to ease what I thought was muscle strain and the WORST Fibro flare up I’d ever experienced. There was relief, but nowhere near what I’d been expecting, and I filed this away too as something to consider.

I began to feel hopeless, and thought I should talk to Kathleen about ending our partnership because I was feeling like so much dead weight, and she was taking on SO much more physical labor that I wasn’t able to provide. I love working with Kathleen, I love our business, and THAT was a very hard road to contemplate.

Pondering In My Heart
Although I identify now as an atheist, I was raised a Free Methodist and, BOY, did we do a lot of verse memorizing each week. My family was fond of the King James version of the bible, Revised Standard didn’t enter our home until 1973, so my childhood memorizations are filled with “thees” and “thous.”  This stood me in good stead in my college Shakespeare classes, I had a bit of a leg up with the Jacobean stylings of Mr. William S.

In fact, when my Grandmother (who was born in 1893) received her bright, shiny new RSV in 1972, she confessed to me, “Oh, Annette-y, I don’t know why they had to go and change it, they should just leave it, just the way that JESUS talked!” 

I didn’t tell her that she probably wouldn’t enjoy a New Testament in Aramaic. I was 11.

So I kept all these things, and pondered them in my heart. Just like Mary did in Luke, chapter 2. 

But I wasn’t growing a tiny little savior, I was growing a tumor that was ripping into my spine and creating so much pain and exhaustion that there were days I thought it would be nicer to go to sleep and just not wake up than face another day of loading yarn, selling skeins or trying to teach folks how to cable without a cable needle.

All things, it should be noted, that I LOVE to do.

And, just for yuks, here’s my OWN tutorial for Cabling Without A Cable Needle.  Enjoy!

14 thoughts on “Murmurings of Pain

  1. My sis had helped put down new flooring in her house and thought she’d strained her back. She goes to the doctor regularly and takes care of herself. She got things checked out during the summer, tried chiropractic and acupuncture, etc. It wasn’t until she got short of breath in December that she got ANOTHER chest x-ray (she’d had one in the summer) and a CT, and found out she had stage 4 lung cancer.

    So it’s not just you. 🙁 Continued mojo and good thoughts for the best possible outcome for all of you. Are your kids home to help out some? My bro and I took turn staying with my (single) sister through the worst of her surgery recovery and adaptation to her first chemo last year.

    • Sending love to your sister, and hope, and to your family for supporting her through it. We like to think of life as being about beautiful milestones, but I guess it’s about the crappy ones, too, and learning to live/deal with them with as much grace as we can.

  2. I am so sorry for what you are going through. The pushing on through pain resonates with me, as I’m sure it does with other women. I don’t know why we do this to ourselves – I think as you say it is because we don’t want to disappoint people. I wish you all the best in your recovery, cancer is a horrible beast.

    • We SO do not want to disappoint people. Even now I feel that I’m somehow disappointing my husband & family by not being indestructible. But I am human, which I suppose is why they love me. Damn humans.

  3. I rarely write comments on blog posts, but I felt compelled to do so today. I admire you for sharing your thoughts and situation so candidly. I thank you for that and hope that you will succeed in beating this disease. My thoughts will be with you during the whole ordeal, wishing that I could do more to help you. I myself suffer from chronic pain in my back and have learned to ignore it, your story is a reminder that I should listen to my body more often.

    • I feel as though my cautionary tale is, “Ignore the pain, as long as you can separate it from the voices that demand so much of you every day.” Good luck with your coping strategy, chronic pain can really throw the mind into a spin.

  4. Anne, I recognized that brace the moment I saw it. When my 37 yr old son was 15 yrs old he had Ewings Sarcoma (a relapse from when he was 11) at his T-8 vertebrae and the bone was soft (penetrated by a soft tissue needle that was being used to biopsy him). He had to wear it except when he was in bed and it was hot,and sweaty, and became unbearable, though he never balked at wearing it. They came up with a high tech solution that was a lightweight metal frame brace that did the job without encasing him in plastic, so you may want to look into something like that if the Valkyrie art gets too uncomfortable. Good luck in your battle. I hope you won’t mind if I say a prayer for you and your family, and docs. You will be in my thoughts.

  5. I started sobbing reading this. I have the same diagnosis, but that was last summer. I am on another side but will have the wonderful maintenance treatment for 2 years to kill the Large B cells. I am sending you compassion, compassion for yourself because it has taken me forever (and I may not be there) to allow compassion for myself. I wrote a ton more, but erased it. If you ever need to just rail or just anything you can email me. I have always loved seeing you at the shows I have gone too. We have talked about your children, about NPR, etc. I think that knitting has saved me, but I am not sure. Without it I am not sure what I would have done. Please have compassion for yourself and do whatever you have to do to get through this and my doctor would always say “and you will get through this!!” Annie you are an amazing person. And yes I continue to deny things, even today. It is hard not to. Just lots of love and power to all of the medicine that will get rid of that cancer and bring you relief.

  6. Oh, Annie, I’m so sorry about your diagnosis. I was in one of your classes at Interweave and I remember you saying you weren’t feeling well and didn’t know if you would make it the whole class, but damn it, you did! Such a joy in you when you teach! Keep your fingers busy–I’m sending you as much good mojo as I can!

  7. Sadly, this sounds a lot like what happened with my mom. She had back pain due to disc deterioration for years, but it suddenly intensified and finally a year after it started (she didn’t want to seem like a hypochondriac or complainer, ya know?) we finally persuaded her to think about back surgery, so she contacted an orthopedic surgeon who sent her for a current MRI, where it was discovered that she had Stage 4 lung cancer.

    She passed away 4 months later.

    This is a thing we women do. We, especially those of us with fibromyalgia, are so used to pushing through that we either chalk up all pain to fibro, or something similar.

    As an energy worker, and Reiki Master for 30 years, I’d like to send healing energy to you.

    As an unwittingly combination knitter who couldn’t understand why my decreases faced in the wrong direction, I thank the woman who spent an entire afternoon emailing back and forth with my so I could do my very first lace project, Branching Out, I thank you.

  8. Reading all these comments is hard. I am the only one in my close friend group that deals with chronic pain. I Thought I was the freak but now I realize that I am only one of many, many people dealing with a variety of painful situations. I hope that every single person finds some relief and that you, Annie, have a positive outcome after the long road ahead. It breaks my heart to hear about so many painful situations but I guess that’s life, and we want to keep living it. Heartfelt wishes to you all.

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