Tag: Disability

Categories
Chronic Disease Medical Travel

Day 1657 and The Boredom of Summer Surgery

It sounds a little ungrateful to say I’m bored, as I sit comfortably in a nice hotel bed with books, Netflix, room service, and a nice view but I am bored and a little miserable.

Antibiotics, discomfort and surrealism are a challenging combination for existential stability as it turns out.

I can’t do much beyond sitting still and getting up once an hour to walk a couple hundred steps. I have been instructed not to sweat so I can’t go outside much. Even in the evening with a breeze, it’s still hot enough to break a sweat and this is an infection risk.

Beyond sweating, you can’t disturb you wound healing in anyway so I can’t exercise. At best, I can do some light yoga and stretching. Short walks indoors are OK so I can’t walk the hallways but that makes staff nervous. I keep to myself mostly.

Most tragically for me as we don’t have a bathtub at home is that I can’t take a bath or submerge myself in water for weeks. So the gorgeous bathtub is simply taunting me. I love a good tub and this is a great tub.

No submersion in water for two weeks minimum

It’s even worse when I stare out at the beautiful pool. That is obviously an infection risk as well. No splashing around in Norma Kamali pretending at social aspirations. Oh yes Istanbul is the new Florence in July haven’t you heard?

At least the nearby Bosphorus is packed with cargo ships, I have no temptation when seeing the beach to have a dip in the water. I doubt diesel fuel is good for healing.

The highlight of my day is the hotel lounge’s breakfast where there are charming varieties of very Instagram friendly food. It is still in a hotel lounge but it’s a beautiful novelty.

Tea, pomegranate juice and rose honey yogurt

I’ve been annoyed by the variety of influencers who are also healing around me. There are any number of different plastic surgery and aesthetic patients in the guest mix.

If you think a week of blogging about an emergency sepsis slice job on some indelicate bits, imagine how weird it is to see an entire family getting plastic surgery and their daughter (I think?) is live-streaming most of it.

I’ve seen more puffy lips than I have fish on this trip and that’s my fault. I don’t have the strength dress up or walk to the Michelin starred seafood restaurant. Maybe that’s more for the elective surgery types and the emergency infection girlies have just enjoy the tiny yogurts.

That’s almost a bagel and lox set up right?
Categories
Medical Travel

Day 1655 and Healing Waters

I am now forty eight hours post operative and I feel like shit. I was warned but I am not enjoying how the very intense antibiotics make my brain feel.

The first five to ten hours after surgery when the local anesthetic hasn’t fully worn off and your adrenaline is still pumping are the easiest. I was smiling and happy to walk myself to the hotel and I was snapping pictures of the Turkish Cipro in amusement. How cool was all of this?

It didn’t stay cool. The first 24 hours are weird as you are still gooy and gushy so it’s tons of clean up and hand done hygiene. You aren’t allowed to shower yet, so it’s just a liminal state of grossness as you wait for swelling to abate and antibiotics to work.

Well, I’ve passed hour forty eight and I’m brain dead. I can’t think straight. The work I was excited to do in bed as I stared out over the Bosphorus was probably a fantasy.

I’m tired. I’m swollen in very tender areas. The idea of showering is simultaneously appealing and too exhausting to even contemplate. I am staring at the lovely bathtub I can’t use. Suddenly all the sources of water submersion are a threat instead of a joy.

We don’t have a bathtub at home so I only get to relax and soak a tub when a hotel and here is a beautiful one that I cannot use

Despite my exhaustion it’s very hard to sleep well in this situation. I need to keep pressure off the wound so it’s all about pillows and angles. I stayed up playing on Twitter where someone asked how a bottle of water for skincare could possibly sell at such a high price.

Right about now as I contemplate my banishment from the pool, the beach and the bathtub I think about how much I’d enjoy the healing waters of a mineral hydrotherapy spa.

Categories
Chronic Disease Medical Travel

Day 1654 and Post-Operative Exhaustion

As I slowly walked myself out of surgery yesterday, I thought to myself “I actually feel much better!” And I genuinely did.

If you have a gentle stomach, maybe stop reading here. I’m fine. I’m on my way to well. And this will be graphic.

I do feel dramatically better having had the “slouching towards septic” abscess drained of infection as well as removal of the initial pearl style irritant (a 3mm deep entirely horizontal hair growing not up but sideways like an underground fracking tube).

I appreciated having the walls of the abscess pulled out bit by bit in a delicate curettage by my silk sundress clad physician. It was all a success.

But post operative care is hard? I’m a mess. I’m exhausted, loopy, and the hotel’s guest services are concerned enough that they are doing me such kindnesses like sending up tea and maxipads. Turkish hospitality comes from a place of genuine kindness and I need that right now.

It’s been a long journey of stupid to end up in Istanbul to get a smart fix. Going from a squishy movable almond sized lump without any pain six weeks ago to a hard plum sized lump was disconcerting enough. Especially having done my damned preventive care visits with the useless Dr Oetkin in Montana.

Have had two days of prodding, poking, squeezing, moving and ultrasounding done in the Mediterranean, I was swollen, feverish, and all hurt to the touch. I was afraid.

How did I get here? How had my next generation IL-17 managed to cause me so many negative side effects even as I was doing better across all biometrics and across quality of life metrics?

No wonder the doctor in Istanbul was so concerned. All the previous doctors had done was make my situation worse though inaction and delay m, and then the action they took made it worse.

Now I have recovery ahead of me. Last night as I went to pee, I realized why they had padded the upper areas of my underwear with maxi pads. I’ve got no discharge downstairs but on the upper bikini area there was no such luck.

I only needed one stitch to close up thanks to the careful work of the doctor, but a lot of goo came out during the surgery drainage and I was warned there was still more to come, though it would taper off.

I gently washed the area with a cloth and antiseptic soap before application of antibiotic cream (my third type of antibiotic). I gasped as I saw the first lightly red sticky watery fluid gush out rapidly around the stitch. It was so fast and there was so damn much. Bodies are disgusting what else can be said?

I mopped up with a clean moist towel and applied a thick layer of antibiotic cream, but I had learned the deflation of the abscess wasn’t quite done. The swelling, I was told, would take a week or more to full abate.

I’ll be sleeping this off for the day but if you are in Montana with an autoimmune disease and need a dermatologist I’d recommend you stay away from Dr. Tara Oetken at SkincareMT. Without her hasty heuristics and lack of conviction I wouldn’t be in this mess.

Categories
Medical Travel

Day 1653 and Slicing Then Cipro

Well it’s been exciting day for me and I may be a little bit high (alas not the fun or good kind) as I just had an abscess surgery in Istanbul.

I’m waiting on the lab work for the culture and pathology but from what I saw come out of the abscess it can’t be anything good as the doctor prescribed multiple antibiotics including Cipro while we wait for results.

Bimzelx has some gnarly side effects and I don’t know how much more slicing up infections I can manage for an immune suppressant biologic. My biometrics are better but 2 eye infections and one abscess surgery that almost went septic isn’t making me feel great about the balance of value on the drug.

I can’t say enough nice things about the Turkish medical system and their treatment of foreign “tourist” patients. It’s my second time this year having my Bimzelx side effects treated here.

A lovely interpreter and patient advocate was with me the entire time. The physician was so empathic. She was astonishingly effective in technique and her whole being moved with an efficient alacrity that was admirable given she was in a floral print silk sundress, high heels and pearls.

Imagine being so good at your job you can squeeze infected goo out of another human that you do it in white silk? I was impressed.

She on the other hand was not impressed by the care I received in America.

“They knew you were immunocompromised and did not insist on an ultrasound and immediate treatment?

What do you mean they said wait and see?”

“I don’t believe the other doctor thought it was a swollen lymph node given the clear folliculitis literature warnings for your biological drug.”

I was headed straight to sepsis and in her mind having multiple doctors leave a high risk patient to “put a compress on it and wait and see” when it was easily 3mm below the skin was malpractice to her.

Quite the big abscess eh? And look at that irritating side ways hair in there so deeply buried

And indeed I am on the kinds of antibiotics you’d expect someone close to septic shock might be on. I am amazed to be doing as well as I am. But I am frankly furious.

I tried to be responsible with preventative care and was ignored. I just kept on going until the small lump became a large lump. Then it rapidly became so swollen and infected it couldn’t be ignored. What a metaphor for the American healthcare share. You try to be responsible and are shown the door till it’s a crisis. And then they can’t even fix the crisis.

On the bright side I’m in a lovely hotel next to the hospital receiving excellent care. I could afford to fly in and get it taken care of without any worries (for the curious this was $2,000 for surgery and follow up care). I was in a very space age room after being in surgery and all my intense antibiotics were hand delivered to me. Now we wait to see what the labs say.

A private recovery suite
Categories
Biohacking Chronic Disease Medical

Day 1650 and Trying to be Heard

I don’t think of myself as someone who struggles to be heard. I am loud, I speak up, I have a large social media platform and I don’t mind being impolite if I need to be heard.

And yet, the incidents where I am ignored, dismissed, or even outright insulted seem to be on the rise. I follow the rule of three assholes generally so I have to wonder if it’s me, but nothing makes you wonder more than getting really bad basic medical care.

I am attempting to get a cyst (or abscess or infected lymph node or whatever the heck it may be) diagnosed in a country where I don’t speak the language.

No one can agree what doctor is right. It was a gyno who sent me to a dermatologist who wanted me to go back to a gyno last month.

Now I’ve got a gynecologist who wants me to repeat the conservative management program I’ve been doing for months.

Which hasn’t worked, but she is implacable in her iron lady demeanor. Bactine and warm soaking. Maybe she does understand the immune suppression part? Thankfully I come with receipts.

I carry my patient charts, a synopsis of my diagnosis, the side effects of drug treatment and a short “why I am here and for what.”

A radical change in size & texture on a cyst with no response to antibiotics is exactly what the last four doctors told me to watch for as it signals a need for active management.

Now this shouldn’t need years of bloodwork (which I brought and charted for them) or a paragraph on high risk patient needs or a history of my main medical issues and the rationale for why I am requesting imaging. It’s an abscess that’s growing so figure out what kind, remove it and then we figured out why.

And yet it does require all of this to get anywhere. I spent 5 hours in a doctors office today and two hours in one yesterday.

I’ll waste another two days while they will run new bloods when I have a fresh set from a week ago. And still they fought me like hell on imaging.

Which is the only way to decide on the course of treatment. Instead I should do warm compresses and iodine for a month (sorry the first four months not count?) The temptation to unleash is overwhelming.

It was a fight. I got an ultrasound. And I did get a diagnosis and it needs to be carried out asap. Figuring out a doctor and a recovery plan I trust is going to be hard but that’s a tomorrow problem.

Abcess. Filled with bad shit. There is a hair in it acting the part of irksome pearl. 17×13 mm diameter. 3 mm from skin so it’s not small.
Categories
Biohacking Travel

Day 1645 and A Sleep of Prisoners

I’ve had several day’s worth of poor sleep. My sleep debt had reached a good full night’s of rest at over 9 hours. And boy did I make it up and then some last night.

A screenshot of my Whoop’s recovery page

I wasn’t asleep all of those 15 hours according to both Whoop and Apple but it sure felt like I was in deep slumber.

With earplugs and an eye mask in, I felt dead to the world. And what’s worse is I’ve had an entire month of pooor recovery and sleep

The 4th of July is now my independence from a month of poor biometrics

Now on July 4th I have been liberated from a long month of poor biometrics and awful recovery scores. And it only took 15 hours of being in a dark cold hotel room and a build up stress, exhaustion, mistreatment and other sundry social frustrations.

Mixing more strain than recovery into my Whoop cocktail for maximum life

Today really does feel like Independence Day for me. I’ve been freed from a body weighed down by physical realities and I am now free from it.

There is a poem that comes to mind anytime freedom and sleep arise to my conscience thought. A Sleep of Prisoners is a 1951 verse play by Christopher Fry

A SLEEP OF PRISONERS

Dark and cold we may be, but this

Is no winter now. The frozen misery

Of centuries breaks, cracks, begins to move;

The thunder is the thunder of the floes,

The thaw, the flood, the upstart Spring.

Thank God our time is now when wrong

Comes up to face us everywhere,

Never to leave us till we take

The longest stride of soul we ever took.

Affairs are now soul size.

The enterprise

Is exploration into God.

Where are you making for? It takes

So many thousand years to wake,

But will you wake for pity’s sake!

–Christopher Fry

His writing captures something in my imagination with turns of phrase like “the longest stride of soul we ever took” evoking a crossing to the harsh wakefulness of reality. And as he says “it takes so many years to wake, but will you wake for pity’s sake?”

I have been slumbering in both reality and in the metaphorical ties that bound me to others. And today is the day where all Americans ponder how our founding fathers contemplated the reality of waking to the dawn of a new experiment. The American experiment continues and we must remain awake to our role within it. I have many thoughts on this which may now soon flow having awoken from quite a sleep indeed.

Categories
Aesthetics Biohacking

Day 1636 and Bounce Your Boobies

Somewhere along the way I leaned into my hippie heritage and stopped wearing bras. Don’t fret, I didn’t burn them. Nor do I view it as any sort of political or fashion statement. It was the pain that did me in.

Sure, the pandemic’s homebound nature gave me the freedom to let loose. But it was the pain in my middle thoracic spine that sealed the deal. It’s at its worst right at my bra line.

I simply could not tolerate the pain from the pressure of even the most forgiving fabric bralette. No bra fitter in the world (not even the famed Orchard Corset of the lower east side) could get around the physics of an inflamed spinal and intercostal condition. My breasts would have go free.

I do have some sense of propriety about the situation. I lock the girls up firmly for business and conservative occasions, but even then if I can find a way to style myself such that I can hide the lack of brazier I do it.

It’s long been hippie lore that the pressure of the straps and clasps of lingerie prevent lymphatic drainage, which can lead to any number of problems. The most feared outcome was breast cancer. Though I do not have any family history of the disease, I did not care to increase my chances as my health waned.

And as I pack for a summer camp out in which I will be socializing with some very conservative people indeed, I found myself humming a crass tune from my maternal grandmother’s third husband’s family.

It was a 4th of July tradition in the raucous La Flair clan (a flavor of French Canadians who oddly settled on Long Island) to host a talent show. The well endowed Boomer women of the clan, who wonderfully possess no shame, had a chorus line dance they called “Bounce Your Boobies!”

I won’t be dressing or dancing in the manner of this fantastic clan but it’s quite likely my boobs will be doing a bit of bouncing for the rest of my life.

Categories
Biohacking Chronic Disease Medical

Day 1629 and IL-17 Changeover Results

I need to do a better job at tying up loose ends. I’ll bring up a change and then forget to do updates until I’ve concluded the experiment.

My January health reboot included changing my IL-17 biologic injection (moving from Cosentyx to Bimzlex) in the hopes of reducing my soaring inflammation markers has its last loading dose today. I take it for my psoriatic arthritis and ankylosing spondylitis.

I got a fresh round of bloodwork done last week and am pleased to have seen my CRP & my sed rate at the best point in some years. Subjective metrics like pain and energy are usually leading indicators for my erythrocyte sedimentation rate and C-reactive protein coming down. And that is my priority with pharmaceutical choices and holistic ones.

I have had a lot of negative side effects that were new to me that did show up during my Bimzelx transition. I got a meiborn gland infection on my eyelid twice. I had to get it sliced and lanced TWICE! And I took two rounds of antibiotics (which I love as I feel terrific when I’m on doxycycline or amoxicillin).

You’d think needing that down while in Istanbul would have been scary but no it was informative and fun. And I was able to learn more about hyperbaric chamber oxygen therapy which is the next big adventure coming up.

So it’s looking good for Bimzelx even though I’m not wild about how my immune system has reacted. The eyelid stuff is scary. I’ve had folliculitis in odd places so I’ll need more topic antibiotic washes presumably. My scalp has not taken it well.

Other oddities of note. Bimzelx also hurts way more than any other injection I’ve ever gotten in my entire life. I’ve done methotrexate, all the hormones for egg retrieval, multiple biologics (Coesyntx and Humira) and nothing comes close to this kind of pain. It’s a big vial and an auto-injector so you have no control so you must muster up the willpower to hurt yourself for 45 seconds of burning pain. Because you can’t restart you’ve got to do it. I scream. It’s bad.

It does appear to be working so we shall see how the change from loading dose to regular every two month maintenance dosing goes. I don’t know if I have multiple weird infections a year in me but I do like being able to exercise and have more work capacity. I’d say on balance it’s worth it for me.

Categories
Biohacking Chronic Disease

Day 1625 and Hot and Cold

I am older than my husband but only by enough (a year and change) to let me land middle aged jokes. We celebrated his birthday at Costco. We are spending Saturday grilling. We own a Subaru. I think the jig is up.

I’ve been fighting to restore my body to “factory settings” since we made the mistake of messing around with fertility treatment hormones. Sadly why our middle aged jokes don’t involve children. Our civic contributions and investments in founders tie us to our future for now

And in our ambitions to be prepared for giving that future everything we’ve got, we are doing more and more for our health.

I started an earlier as my body gave out earlier but we are both doing more biohacking. We are slowly building out a collection of treatments and devices that we hope will end as a medical spa serving our region.

The hyperbaric chamber for oxygen therapy we purchased in January l has finally reached American shores. More sauna and ice cycling might be in our future too. On a “in the red” day I’ve been known to hit my recovery with everything I’ve got. Heat, cold, and pressure can fix almost anything. Add in oxygen and we might just survive whatever the future throws at us.

Categories
Biohacking Chronic Disease Medical

Day 1619 and What A Headache

It’s a gorgeous breeze June Sunday in Montana. It’s the sort of day where you go to your favorite bakery for an exotic little pastry, maybe get lunch from a favorite restaurant and then go for a hike or a bike ride to marvel at the majesty in wonder.

As I am working through a new physio routine to improve compensatory pain in my trapezius muscles I was a little nervous. I wanted to adequately test that I’d found new corrective instincts without overdoing things.

I walked a favorite two mile circuit with a stead inclined of hills that eases back out into the flat valley. I felt terrific. The sun was shining but the breeze kept it cool. Truly paradise on earth.

And then within an hour or so I got an awful headache. Had I failed at reworking my compensation so badly? I checked fascia and muscle points and found my shoulders relaxed.

Then I checked my upper cervical spike and yelped. I had swapped one compensation for another and gave myself a killer headache in the process. But I didn’t have the same pain pattern or headache type and that is a win.