Tag: Pain

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 Media Travel

Day 1652 and Back in Istanbul

I’m a mess and somewhat scared. This abcess saga has grown from dismissive preventative care visit (which I did did out of an abundance precaution) and ended with me meeting a general surgeon at a Turkish medical tourism hospital tomorrow to discuss labs and my ultrasound. It’s my second time this year so that’s quite an endorsement as a revealed preference.

But I am serious with this sidebar. Don’t go to SkincareMT’s dermatology practice if you have a layered case that needs more involvement. I found Dr Oetken pleasant but entirely unaccountable when a patient needed advice and weightings on a complex case. I should have known better.

I was afraid she would be a box checking paper pusher afraid to give an opinion. But maybe younger doctors are afraid to treat that way given our system. I needed to know is it worth getting a clearer diagnosis before it is a crisis? Is imaging necessary? I have a set of drugs I take with these specific side effects. Given that risk profile and nuance at hand needed the interpersonal relationship that would guide me.

I do endorse SkincareMT’s cosmetic practice, and Addison in particular is fantastic, but their healthcare wing is clearly designed to extract maximum Medicare dollars from Montana seniors. 

My failure to get an ounce of prevention means I’m flown to Istanbul to attempt to get a pound of cure. Don’t worry I was already in the Mediterranean. Not in the way way some think though.

Yesterday we found out by pulling teeth that I had a problem. It’s clear I need this excised and quickly. The ultrasound is gnarly. Drainage, removal of the foreign object, and potential curratage to make sure the walls of the cyst are removed forever are what is needed. 

The sprawling medical tourism complex in Istanbul is amazing and I trust them more than any other system or talent pool on the planet right now.  What they have built is an incredible achievement and in challenging conditions.

Doctors who listen, who educate you on your options, and most importantly are up to date on current research and global innovations so don’t give you glassy eyed stares when you mention a new medication like a next generation IL-17 inhibitor it’s exotic side effects.  American doctors like that are rare and their hands are often tied by our horrific mess of state failure and lack of market innovation. 

I’m relieved to have choices like “general surgeon or gynecological surgeon” and texting discussions with my case lead (a full time liaison for you and your family on the entire case) on how we will handle excision and culture pathology. 

It does feel like I’ll have good choices. But it also seems like I booked less time than is necessary and I don’t know how I feel about that. A week of waiting on labs in a hotel while in pain is scary. Sure I can work and be productive and maybe even do some tourism but I just want this shit sliced out, an IV of the right antibiotic that will work and some sleep. 

I’ve been doing some crazy bi-phasic sleeping as the Mediterranean is hot as hell from noon to 10pm. So I’ve been doing a bit of staying up late and sleeping in to avoid the heat. It’s not clear how much it’s messing with me yet because I’ve got all these odd infection fever doctor nonsense. A quick surgery and some answers can’t come fast. Thankfully I’m at the crossroads of empires.

Categories
Community Culture

Day 1641 and Honor

The good vibes of my weekend have washed out on the tides as I consider a frustrating non-interaction that has grown into anger in my heart as rapidly as a wheatgrass seed grows in an Easter basket.

I am considering the question of honor in the context of closed communities and events. If you go looking, the cat is out of the bag on where I was and with whom, but I don’t yet have personal permission to use a name, so I’ll keep this brief.

I’m in my Worf era

I’ve been called many names in my time and plenty of them have not been laudatory. Dirty shiksa, stupid cunt, and mostly recently, demonic. Everyone being entitled to their opinion, I don’t generally ask for apologies. I do ask that you say it to my face though.

I am a shiksa, certainly “see you next Tuesday” from time to time, but I remain skeptical that I am possessed by anything from Hades or other Lovecraftian horror from the beyond.

But so long as you use my name in the process of insulting my honor, I only request you look me in the eyes while you do it. I can take it. I stand by who I am and what I say.

So I can’t shake the feeling that I was deliberately dishonored by the speaker. And I am actually angry now. I am used to the insult throwing and name calling of Internet living, indeed I thrive in it. I am not accustomed to aspersions by celebrities as I don’t matter all that much. And I certainly didn’t expect it in a small private group.

I fight in that arena under my own banner. I take those punches under my own name. I won’t lie, someone of stature being so upset as to call me evil without felt good at first (how nice to be noticed) and slowly curdled into a fury over the disrespect.

Maybe it’s because I was one of the few women speaking. It was only after much effort he agreed to speak with my male co-speaker and not me (I’d already left). Maybe it was because after multiple attempts at engagement I was refused time and again. Maybe it’s because his gaze remained staunchly averted. Whatever triggered it has now turned to fiery anger.

I think it’s a bitch move to drop bombs and then runaway like a kicked cur when the beast stirs. And I am quite wide awake now.

I’m the alien in this scenario
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
Chronic Disease

Day 1627 and 12 Hours

I went to bed yesterday around 3:30 or so. Oops. I could barely write a post as I was struggling to stay awake at all. I did three short paragraphs and tagged it and said good enough.

A long night of poor sleep

My sleep was not peaceful or restorative but at least it was long. The night before I was up late (ok 10:30pm or so) and I struggled to fall asleep.

Alex’s birthday party on Saturday was enough to wipe me out so badly that on Sunday I couldn’t stay up past mid-afternoon. Pathetic yes but not surprising.

I recently did a big round of bloodwork and was thrilled to see my inflammation is down significantly but I have something called inflammatory anemia. So maybe a contributing factor to my exhaustion. There are a number of odd areas that need some attention especially in my endocrine system.

The Bimzelx switch is in its 4th month so almost through the loading dosing. I have had awful side effects but the code biomarkers of CRP and Erythrocyte Sedimentation Rate (ESR) are significantly improved.

I still have all kinds of weird pains and compensatory biomechanical problems but I’m feeling moderately optimistic. The next steps are around the corner. And hopefully I get more deep sleep and REM sleep before I tackle it.

Categories
Biohacking Chronic Disease

Day 1622 and Pulsed Electromagnetic Field

On a bit of a whim, Alex bought “on the go” PEMF Infrared Mat from HigherDOSE.

This is the year of acquiring mechanical intervention medical equipment for us.

Yes as biohackers we trial a lot and some of it is less woo-woo than others. Treatments like hyperbaric chamber oxygen therapy have significantly more clinical data than say pulsed electromagnetic field treatments.

It seems easier to send electromagnetic waves at different frequencies than create a sealed oxygen chamber but consumer is weird and the military and elite athletics tested HBOT whereas mere hippies played around with PEMF.

A temperature setting swaps for 4 separate vibration settings Delta Waves, Theta Waves (Schaumann Reponse, Alpha and Beta Waves

So it’s qualia only here on the good vibrations but I am excited to try it out. I can’t exactly feel the vibrations unlike in other clinical settings where I’ve experienced much more intense (it’s measured in gauss or Tesla) but infrared warmth is a nice experience even if the vibrations don’t do much. But I will report on it.

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.