I'm Gonna Need Another-ologist

I have no idea how to navigate multiple diagnoses that contradict each other, but I know medical trauma is real.

Title: Newton Contemplates the Gravity of the Situation. Original paper collage by Stella Lyn Norris. Photo property of author.

I finally broke down and made a spreadsheet to keep track of all the health care providers in my life. There are eighteen right now. 

In the last year I have racked up what can only be described as a shit ton of diagnoses. Among others, there’s ankylosing spondylitis (AS), a type of autoimmune arthritis that tries to fuse vertebrae together and wreaks havoc on multiple systems in the body. This finally explained twenty-five years of debilitating chronic pain (and it took exactly that long to get an accurate diagnosis). 

The fact I have osteoperosis even though I’m only forty-nine could be a result of that condition, or a by-product of celiac disease. That one took forty-one years to diagnose, or to put it another way: I unwittingly ate poison (gluten) for forty-one years. 

Almost certainly this is one reason why my gut is so unhappy, and why it took three decades to reach the hundred-pound mark. I was so undernourished, it wasn’t until I was in my thirties that my thighs first touched.

Now I’m having the opposite issue with my weight, which has to do with being in the throes of perimenopause. While this change of life is something I thoroughly embrace, the exit ramp from the reproductive rollercoaster has proven as ardous as the years I spent with relentless “female” health complaints. I’m not going to go into that history here — not because it’s too private, but because it’s a 100,000 word story, all its own.

Metamorphosis is hard work, and harder still given it’s landed at an intersection with long-COVID and other chronic health issues. In the last two or three years, hot flashes and migraines and insomnia and other symptoms have absolutely ruled my life. It’s getting harder to leave the house sometimes, given that it requires wearing clothes. 

On my handy spreadsheet are an endocrinologist, a gastroenterologist, a gynecologist, and my primary doctor, of course. There’s an -ologist for every cyst and tumor — a different specialist assigned to each nodule — who seems to send a different body part to get scanned every week lately. I have an ophthalmologist, an immunologist, rheumatologists, several kinds of breast-ologists, and thank goodness, a psychologist. 

My body likes to make lumps, I guess. I’ve got them on my thyroid, in my uterus, one on my back, and one in my kidney. There are eight in my spine alone. I had so many in my breasts, I had to bid those babies adieu a few months ago. I’m riddled with enlarged lymph nodes all over the place and no one knows why. The newest tumor that’s been found is in my left lung. I just added that one to the collection yesterday, but I’m guessing the next -ologist I’ll need to add to the list will probably be of the pulmonary variety.

To be fair, a few of the doctors listed on my spreadsheet are redundant. For instance, I have two rheumatologists because I still haven’t decided which one is shittiest: the one born without a personality who refuses to make eye contact and lets awkward silences take over until I’m forced to run the appointment myself, or the one who told me at our last visit that one of her patients made a miraculous recovery eating only pistachio nuts. These are the choices down here in South Louisiana, but at least these two don’t call me baby, like my last gynecologist did.

I wasn’t sure if the pistachio doctor was recommending that I try the same diet, or just mocking me for holding the opinion that possibly eating less inflammatory foods might keep me from needing to take powerful NSAID drugs that stress my kidneys. 

With both rheumatologists I go rounds about the idea of injecting myself with weekly doses of immunosuppressant drugs called biologics; I still haven’t been able to drag myself up onto that bandwagon. But no matter, I can’t start those until next year anyway, after I’m all the way through multiple surgeries.

More things to look forward to: soon I’ll be starting the IV immunoglobulin therapy my immunologist says I will need to do for the rest of my life. This will involve a monthly visit from a home health nurse to administer a four hour-long intravenous dose. Every month. Forever.

The rheumatologist recommends I take an acid blocker with the powerful NSAID medication she’s prescribed for the crippling joint pain, since drugs like that like to chew holes through stomachs. But my primary doctor says I should avoid the acid blocker, because it could accelerate the osteoporosis. 

This upsets my GI doctor and creates the need for frequent scopes to check on the status of a duodenal ulcer and a generally inflamed digestive tract. These exams are conducted under sedation, and I’ve had four in the last several years. No thanks, anyway, to the acid blockers, because I’m not really interested in turning off my digestive secretions.

At last check — to everyone’s disbelief — I’d healed the ulcer with herbs. I chose to address my poor, ravaged autonomic nervous system and gut mucosa with something that might actually promote healing, rather than adding further stress with chemical warfare. 

Not to say chemical warfare doesn’t have its place. Since then I went through a six month period in which I had to take eleven rounds of antibiotics. This was owing to the freakish and extreme chronic mastitis that came out of nowhere and threatened sepsis. I guess it’s not really fair to say that came out of the blue —  there were ten years of warnings that my breasts were pissed off.

This development lead not only to relentless antibiotics and sweating with fever dreams on the couch, but also to finding the many masses I mentioned earlier, which indicated, painfully, that I was also well on my way to developing breast cancer. My breasts were cut and stabbed seven different times before the double mastectomy. Then tissue from my belly was repurposed in order to make new “breasts.” I still have at least one more surgery coming up, which will be an attempt to make less of a mess out of that Frankensteinian experiment. 

The many MRIs, mammograms, ultrasounds and ductograms (oooh-that one was fun) that led to the bilateral masctectomy decision were enough to provide a lifetime of medical trauma. In fact, the biopsies alone were plenty of grounds for PTSD. 

But I digress…

What I’m trying to say is my poor gut is royally pissed off, and at the end of the day, I think that’s what it’s all about. The crippling anxiety I lived with from birth until now that bored a hole through my duodenum on the way to my soul has not helped either. And while I know hormones do have a way of ruling the world, I think most of what I’m dealing with comes down to leaky gut syndrome.

Just don’t mention that term to the mainstream medical community unless you want to get pigeonholed as “one of those people” and be spoken down to, because they still do not recognize leaky gut as a valid condition. (Tip: It might help to say “increased intestinal permeability” instead, and avoid the simpler, controversial term that means exactly the same thing.)

I’d love to know how else protective antibodies like the ones I’m missing can be lost through digestive dysfunction.

This brings me to one of my recent diagnoses that’s been especially intriguing: Specific Antibody Deficiency, also appropriately called “SAD”. Yes, it makes me sad that I have no natural protection against Streptococcus pneumoniae.

When it comes to blood values of antibodies that protect a person against pneumonia and other streptococcus bacterias, 23 is a normal number, and 17 is considered low. Mine was measured at 4. 

This sent me to be ologized by yet another -ologist, this time, the immuno-type, who ordered the monthly infusions.

So to clarify: one -ologist would like to have me inject myself weekly with an immunosuppressant drug to address a run-away, hyperactive immune system, and the other would like to administer an IV of immunoglobulin therapy to counter an immuno-deficiency. 

These docs really know how to put the dys in dysfunctional.

It’s tempting to think that I could do neither of these therapies, thereby cancelling out the problem, but unfortunately that’s not how it works. 

Also unfortunate is that the pain where my spine is completely falling apart and trying to glue itself back together is so bad, I have to sit down to put my underwear on, and sleep with about six pillows. And most unfortunate is that managing this with medication isn’t really a viable option for me. NSAIDs only mess my gut up worse, which, as I’ve mentioned, is likely the root of the problem, steroidal drugs will accelerate the rate at which my bones are dissolving, and I have no interest in taking narcotics.

Regarding the plastic-ologist who did my initial breast reconstruction— I hope I never have to see him again. We’ll just call him Dr. Doorknob, because that’s what he clings to the whole time he’s in the room with me. If that body language doesn’t scream I DON’T HAVE TIME FOR YOUR QUESTIONS, I don’t know what does. 

I’ve looked far and wide for a replacement — someone who can make my new breasts look a little less like a bad lab experiment and a little more breast-y. I found a good place in San Antonio, Texas, and am planning to travel there in the fall for my care. That’s how far away I plan to stay from Dr. Doorknob, going forward.

This week I had six medical visits: rheumatology, gynecology, a brain MRI, a chest CAT scan, a therapy appointment, and I visited an ophthalmologist.

It turns out, the blurry vision which four optometrists and multiple attempts at prescription lenses haven’t been able to correct might be due to fall-out from having ankylosing spondylitis. Such late news that AS can cause, among other problems, serious, vision-threatening eye diseases has had me in tears. This could explain everything, though I’m not sure I want it to. 

Another thing precious to me that I am pre-grieving is my hands, which have been hurting so much lately, sometimes I’m almost unable to pick up a glass of water. Basically the only reason I take the NSAID occasionally is so that I can still play music and do other things I love, like write, make artwork, garden and drink water.

Supposedly unrelated to any of these known conditions is the recent development of vertigo and dizziness. Thus the brain MRI, which — thank my lucky stars — came back with no troubling signs. This does probably mean I’m going to need another -ologist though, so I’m researching neuro-people in the area.

The really good news is what my lifetime of health problems has taught me, and that is: I am actually so much more than this struggling body. I do contain multitudes (thank you, Walt Whitman), and I don’t just mean “of problems.”

While I know that’s true in my heart of hearts, I’ve also begun having outsized responses to some basic medical procedures I used to take in stride — like having to be poked four times to find a good vein during a blood draw, for instance. Last week when this happened, I noticed a small panic attack rising as the phlebotomist dug around with the needle inside my arm, not so much because it hurt, as it’s all just getting to be too much for me.

When I was little, my pediatrician agreed to leave me on amoxycillin for two years to try and resolve the relentless ear infections and other respiratory illnesses that plagued me. I learned about this in a letter my mother had written, which was in a box that came to me after my grandma passed away.

I doomscroll the internet for health information, trying to decide which sources to trust, and wonder if I always lacked these antibodies, or if the endless flow of antibiotics I’ve had to live on for way too much of my life completely destroyed my gut and caused the loss of natural protection. 

It’s a chicken-and-egg question and it doesn’t matter now. Here I am. All I can do is go forward and try to take the best care of myself that I can.

Of course, it’s always possible my best years are yet to come. Maybe I’ll live out the second half of my life in better health, having eradicated breast disease and gotten to the bottom of some mystery diseases. If I can correct the immuno-deficiency, and through careful diet and a rigorous herbal regimen, restore my gut to sanity and keep the autoimmunity from running amok, I could still enjoy a less painful existence someday. Step one is to change my relationship to stress, which has been difficult when what’s stressing me out is the medical trauma that just keeps coming.

I thought 2024, the year of the boobies, would herald a rennaisance of health. Yes, I knew it was going to come at a high cost — twelve months of dealing with three or four breast surgeries and a whole lot of healing time. But didn’t it stand to reason that ridding myself of an insidious, long-standing disease would allow vitality to return and take root?

Maybe healing is just a messy business and that will still happen, but the last two weeks, in particular, have put me through the mill and I’m feeling disheartened. I know that the answers lie within, and that the medical industrial complex lives to serve itself above all else —  certainly more than it exists to help human beings truly thrive. And so I must counter being caught up in the cogs of this machine by taking a humanistic and Earth-centered approach to healing myself, if I’m to find my way out of this maze. 

Here’s what I’m learning: it starts and ends with self-compassion. Sanity requires holding tightly to a list of inalienable truths I know inside my heart: my soul is more important than my physical body. The Earth is the one true healer. Planting my feet in the garden and in wild places is the only real medicine. Caring for animals can show me the way. Talking openheartedly with trusted friends is a soothing balm. Leaving everything on the page is the best kind of emotional surgery. When all else fails, singing or making art is transmutative.

As I walked along the bayou this morning I watched a great blue heron lift off. His spindly legs reached downward in counterbalance as his impossibly huge body levitated just off the ground. With a few swift flaps of slate colored wings he pulled his head back on his long neck and with a wild look in his eyes we stared into each other’s souls for a fraction of a second, before the sky was the limit. In that tiny moment, he taught me everything I needed to know about grace. Then he was gone, this creature of great beauty. 

The plantain (Plantago major) is luscious and huge right now and just teeming with medicine for healing wounds. On my walks I pick the leaves, chew them up a little to get at the juices, then stick them in my poor, sore, rebuilt belly button. This motherwound of mine has had trouble healing since I had major abdominal surgery in February. Or, if I’m honest, since 1975. However you look at it, it’s continued to be a great source of pain. I can’t remember every wanting my mother to hold me, not the small “m” mother. But the Mother to us all — it’s her I want to curl up on.

I don’t know how to navigate all of this overwhelm. I bend to the ground and ask for help. I stick a piece of the green, living world in my mouth to bruise it up, then paste it to my skin in the hope there’s something in it for me.

Original paper collage art by the author.