November: Memories, Loss, and HLA-B27

Life is messy for all of us, to one degree or another, whether on the surface, or carefully hidden. Today's blog post is mostly about allowing some of the mess to be on the surface, because sometimes grappling with it is therapeutic--if not for you, for me.

The closer we get to Thanksgiving, the harder November always gets for me, especially on those grey, dreary days we often have in Pennsylvania, where the trees are mostly bare and the air is a little raw. It makes me think of the day, 15 years ago, when my sisters discovered the body of my mother, who had died of a massive heart attack some time in the wee hours of the Tuesday before Thanksgiving. Though the date was November 23rd, I always remember it as the Tuesday before Thanksgiving.



I wasn't there. I was living in Connecticut, preparing to make a trip down to my childhood home for the holiday and to stay a little extra to take my mom for a biopsy of a concerning spot on her lung. Little did I know that we would never have to face the lung cancer battle we feared would ensue--that a 90% blockage to my mom's vena cava would swoop in and prevent even the investigation.

Even knowing my mom was probably gravely ill, her death was a shock. I was pregnant, married only a little over a year, and now an orphan, having lost my dad as a young teen.

So, now that I again live in the general area where I grew up, I can't help but wonder on dismal November days, "What was it like for my sisters to confront my mother's still form, reclined as though sleeping, but cold and gone?"

The circumstances of her death have always been a little puzzling--sure, we've been able to explain a lot of what came up in the autopsy as her having lifestyled herself to an early grave, but the pieces haven't entirely fit for me, and it lingers in the back of my mind as something that I wished we could have understood better. When you are grieving, young, and preoccupied, you don't always dig like you should, I guess.

Some new information I came across recently got me really thinking about my mom's demise. As many of you know, I have been struggling increasingly with chronic inflammation in my digestive system, back and neck pain, and depression. Another health puzzle where I haven't yet been able to make the pieces fit, despite a LOT of research.

A conversation at a family get together this month brought to my attention a genetic disorder that apparently runs in my family: ankylosing spondylitis.

No, I didn't make that up. It's a real thing.

The family member who suffers from it was talking about how its symptoms often manifest first in the sacroiliac joints of the pelvis. (A region of my spine that has been troubling my chiropractor for a couple of years, but she hasn't been able to put her finger on why it should be--the rest of my spine adjust pretty well.) But my pain in this joint few people even realize they have is near-constant and very high on my pain meter. That's not an easy status to achieve. Ask my husband or the people who have delivered my babies.

The specificity of sacroiliac pain rang in my ears, and I started digging, as is my wont. Not only am I finding a near exact match of the problems I struggle with in the diagnostic list for anylosing spondylitis, but when I read the information of advanced stages of the disease, I am beginning to see a troubling portrait of my mother. Is it possible that my mother suffered, undiagnosed, until this genetic abnormality destroyed her spine and hips, and very possibly her kidneys, heart, and lungs? And that some of my siblings and I carry the HLA-B27 gene? That I may have passed it to my boys as well, who are at greater risk (because of their gender) for developing symptoms?

Awareness is both a blessing and a curse. I now know of something specific I should bring before my doctors, something they can test for to confirm or rule out. It's far more specific than my pursuit of information on chronic fatigue, fibromyalgia, leaky gut, and adrenal fatigue, all of which are practically subjective to diagnose. All whose symptom lists were about a 75% match for what ails me.

But the curse part comes in when you start ruminating on the possibility that a condition you may have is only manageable. Not curable. Being honest, however, the curse is probably more in worrying about "what if" than the actual situation.

We travel next week to grieve with my family-in-law over the loss of my husband's stepfather, and so, my journey to discover what ails me will have to wait until after that, temporarily forgotten as we wrestle more important and more pressing emotions, losses, and needs. And so, if I seem especially down, more desperate to make good use of each moment, I hope you can forgive me. November seems to keep adding to itself reasons to be a month of wrestling. But at the same time, it's juxtaposed against a cultural season of thankfulness and joy.

So no matter how daunting my health research, my memories, and my fresh emotional wounds, I am thankful that November and December also have a built-in closeness. I have a feeling I'm going to need it.

Comments

  1. Wow, oh, I, wow. I have a son with ankylosing spondylitis. I knew my state representative also had AS, the reason he resigned, so I contacted him, and he graciously wrote a long letter to my son. He fought the disease aggressively, walking three to four hours a day (not in one stretch, it was walk, rest, walk, rest) which I have trouble even imagining. He and his wife went to a hot mud spa in Italy, and when they came back they were both really sick with a parasite. He was treated for the parasite, and his AS went away. So he got a job at FEMA. Huh. I was half ready to send my son to that spa. I've been researching helminthic therapy, which my son wants nothing to do with. And who can blame him? Still, you feel so desperate to do Something when you see your child in pain. He doesn't know if it's the AS or the medication he takes for AS that has slowed his brain to a crawl, so he can no longer do the programming jobs he loves. So. Sad. I don't want to tell you what to do other than this: when you read about a syndrome, know you are reading about every possible symptom. Nobody has 100% of the symptoms. Not everybody has the same outcome. You picked a distressing time to gain a distressing syndrome. May God ease these gray days for you.

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    1. I pray your son will find the right solutions for his challenges attached to AS. As for me, I have a referral for x rays and will get the blood test for the genetic marker to start, and we'll see where it goes from there. Being female, I at least have a statically lesser chance of my symptoms being severe, so that's something to hope for, if I do come up as having it.

      It all gives new definition to "one day at a time."

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  2. Gosh, that's really scary! At least you'll know what's been plaguing you, and can take steps to manage it.

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    1. I guess we'll see--as with all medical things, the lead time in getting the tests is long. I won't be talking to a medical doctor until early December, then they'll be ordering tests...and so on. I just need to be patient. The fact is, I won't be dropping over or debilitated in the next couple months even if I do have this particular disorder, so it's an exercise in follow through, I guess.

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  3. I can relate to that wanting to know what is going on and being afraid of finding out. That's exactly what I dealt with ten years ago before my cancer diagnosis. Plagued with symptoms the docs didn't understand. Tests that kept coming back negative. Going back and back and back to tell the docs to figure this out--NOW. I was both terrified and so relieved when I finally got my diagnosis.

    Mine, of course, was curable, so therefore temporary. It has to be so much harder to deal with knowing you are facing something chronic. My prayers are with you, and your whole family.

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    1. Thanks for the words of support, Kat. Sorry for my delayed response...sometimes I juggle slowly. :) I cannot even imagine going through a cancer diagnosis! Thank goodness you were persistent and got the diagnosis and care, even thought the road had no shortage of dead ends along the way.

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