Mostly what I got from the last post was that you weirdoes really want to see Turnip in our mailbox. (I use “weirdoes” affectionately, you understand; obviously we are weirdoes who put her in the box in the first place. Repeatedly.) I am nothing if not willing to subject everyone to pictures of my furry root vegetable, so here you go:

Notice that the flag is up. Take her. Please.

Isn’t she so cute? A pretty little white fluffy thing? In this pic we’ve just gone for a walk, and other than the fact that she loves to dart and weave her way around (Otto swears she’s trying to trip him), she is a model dog when we are out roaming. It’s only in the comfort/safety of her own house that she goes into Anxious Sentry Mode and needs to either be standing on your face or barking All The Damn Time.

I do an excellent job of selling her; it’s a mystery why no one ever wants to take her home when I offer.

SPECIAL BONUS TREAT (!!!)

Because you are the best, here is a picture of Goose in the mailbox, too!

The goodest Goose, posing like the queen she is.

I hope you’re happy, now. (Truly. I just want everyone* to be happy.) (*Okay, fine—there are several exceptions to this rule, but I do mean I want YOU to be happy.)

Anyway, that’s just me paying the Fluff Tax before getting into the long and stupid story of my venous insufficiency (just another way I’ve failed!). If you do not enjoy protracted and enraging stories of medical clusterfuckery, feel free to enjoy the dog photos and be on your way. I will not be offended.

Alrighty. If you’ve been here for any length of time, you may recall that in addition to regularly injuring myself because I am a dumbass, I have an assortment of chronic conditions which can either be directly or sometimes indirectly traced back to me having Ehlers-Danlos Syndrome. (You are welcome to look up EDS, but the upshot is that EDS = defective collagen, and what in your body is made of collagen? Anyone? Yes, that’s correct: EVERYTHING. Super.)

At this point we’re coming up on about two years from when I started seeing a famous POTS specialist in Atlanta, and although I wasn’t 100% convinced of her greatness, after our first visit, I have come to really appreciate her and the improvements in my quality of life under her care. My heart rate issues are well-controlled with medication, now, and because she sees only POTS patients and so many of us have the same co-morbidities with associated issues (like mast cell stuff, which I also have), this doctor will do indirect treatment for some of those symptoms, as well. Which is great.

In the post from a couple of years ago which I linked in the previous paragraph, I mentioned having a special ultrasound to assess the veins in my legs, which—at the time—was something I wasn’t really sure about why it was being done. But it turns out that part of the reason so many people with EDS also have POTS is that your blood vessels and associated valves are made of—say it with me!—collagen, and therefore tend to be defective. You know, like everything else about me. (Yay?)

That long-ago scan showed that I do indeed have “venous insufficiency” and “significant reflux” in my leg veins. (Translation: I am bad at circulation. Whomp, whomp.) I do not (currently, anyway) have varicose veins—the most severe type of dysfunction when it comes to these issues—but it was still deemed Very Not Good. At the time, my doctor reminded me to wear my compression socks* and mentioned a “collaborative treatment we’re piloting with another doctor,” and said we would revisit the issue again later. (*I would like to point out that yes, compression socks do help, and yes, nowadays you can buy cute ones, not just Old Lady Tan ones, and so I have many pairs, and I do wear them… just not when it’s hot out, because I am not wearing knee-high socks when I am already almost always too hot. So I guess it sucks to be me and living in Georgia, because I can really only wear them about four months out of the year.)

It was fine that we kind of dropped it at that point, because then I spent about a year solving the Great Pancreatitis Mystery and eventually having my gallbladder out, anyway.

Then this summer I went back to see my cardiologist again, and we went over all my symptoms (I think maybe it would be faster to go over symptoms I DON’T have…?), and she flipped back to my study on my legs and said “Did you ever get your pelvis imaged?” I had not, and said so, and it was then that I finally heard about this new treatment she and another doctor are studying together, and so far the improvement rates are very promising, and something something something…

… I kind of stopped listening, because the treatment is a stent placed in the iliac vein, and although I consider myself not terribly squeamish, I guess I had been picturing some sort of drug trial, not someone rearranging the plumbing somewhere in my pelvis with a titanium tube. I was a bit unnerved, was my point.

… “So I am going to set you up on telehealth with the partnering surgeon to discuss, and we’ll go from there,” she concluded. Uh, okay? It was in the post-appointment setting up of appointments that I realized I had just agreed to talk to a doctor two time zones away because… that’s The Doctor.

“I’m not going across the country to have surgery with this doctor,” I said to Otto. “That’s insane. I probably shouldn’t even do the consult.”

“Let’s just see what they say,” responded Otto, ever pragmatic. “Maybe it won’t be recommended, anyway. But if you need it, we’ll make it happen.”

I had my consult. The surgeon’s office is FANTASTIC, and thank goodness, because we all became verrrrrrry good friends after the consult, because:

1) Before the surgeon felt comfortable determining if I’m a surgical candidate, I needed to have a very specific, fancy (that’s the non-medical term for “a specific protocol must be used,” which will become important in a minute) MRI of my pelvis. And their office could order said scan for me to do here in Georgia, so they asked if I wanted to go back to Emory (where my referring doctor is located). But I would rather chew off my own arm that drive in midtown Atlanta if I don’t have to, so I asked if this fancy MRI could be done closer to where I actually live, and they said “Probably!” and told me they’d find a place. They also scheduled me for a follow-up to go over said MRI in three months’ time, which was “plenty of time” to get it done and have the scans reviewed by them.

2) When they determined the first local place that could do this scan for me, they sent them the orders, called me to tell me where they’d sent them, and told me to call that location if I hadn’t heard from them in a week. I called after a week and they said… they’d never received the orders. I called the surgeon’s office back. They called the scan center. They resent the orders. I waited a week and called the scan center again. They said they’d never received the orders. Suspicious, I managed to keep someone there on the phone until they magically located the order “in the trash.” (The real, physical trash can?? The trash on their computer? I WILL NEVER KNOW AND I WISH I HAD ASKED.) Turns out they “cannot do that protocol” and so never contacted me or the surgeon’s office to say so, they just… threw the orders out. Twice. Cool cool cool.

3) At this point I called the surgeon’s office back, and they asked me to find a local place I could have it done. No problem. I made multiple phone calls. I asked the surgeon’s office to send the orders to a second scan center after confirming that the test I required was something they could do. The orders were sent. That scan center called me a week later to say they “cannot do that protocol.” At this point I ask if anyone there could tell me where I could potentially get it done locally, as this was the second place to both waste my time and reject the orders. The kind and helpful woman on the phone suggested the radiology group affiliated with our local hospital (seems reasonable); I thanked her.

4) I called the surgeon’s office back (again!) (at this point I am starting every conversation with, “Hi [name]! It’s Mir Kamin… AGAIN!”) and ask them to send the orders to the giant conglomerate that is this particular hospital group. They sent the orders. I got on the online booking system and discovered that in order to have the scan done in-town, I would need to wait two months. There was, however, an opening about an hour away (but away from Atlanta, so at least no crazy traffic!) in just two weeks. I booked myself for that location.

5) The DAY BEFORE I was to have that scan, someone from the hospital called me to say that the location I’m booked at—YOU WILL NEVER GUESS—“cannot do that protocol.” Why? I have no idea. Also what is this magical protocol? Is it witchcraft? Santeria? WHO KNOWS! Also, I cried on the phone. The caller was apologetic, especially after I detailed the journey to this point. She encouraged me to book the procedure at the main hospital.

6) I called the hospital to book. They gave me an appointment two months out. I called the surgeon’s office to let them know we needed to push out my follow-up, as I still had not had the scan and would not have it by the current appointment date. They were very kind about it.

7) A full MONTH later (but hey, a month prior to the scan date, at least, so, progress?), the hospital called me to say they “cannot do that protocol” I cried on the phone! Again! And they asked me if I have contacted Emory so that I can do it there. My soul briefly left my body.

8) I called the surgeon’s office to ask them to send the orders to Emory. They said no problem, and told me to call Emory the next day to schedule.

9) I called Emory to schedule my scan. They didn’t have an opening for nearly two months, because of course. Fine. I asked if they are open on the weekend, and they said yes, they had a Sunday appointment I could have. Great. During the course of this conversation I asked them to check the orders and confirm that they can do THIS SPECIFIC MAGICAL PROTOCOL because I had been scheduling and rescheduling this scan for half my life, seemed like, and could they just humor me and confirm? The person on the phone pulled up the orders in the system. “Oh, ma’am,” she said, with what I’d like to believe was genuine sympathy, “We can’t take orders from a doctor outside of Georgia.” I begged her to give me the promised appointment and PINKY SWORE that the moment we got off the phone, I would call my Emory doctor to have HER submit the orders, instead. She relented, and gave me the appointment.

10) I called the cardiologist’s office to explain the issue, and attached a copy of the orders (which I’d obtained at some previous point in this odyssey), and asked them if it could be submitted under [my doctor]’s name instead of the other doctor’s name. They said, “That doesn’t make any sense. [My doctor] works with [out of town surgeon] all the time. [Out of town surgeon] submits orders all the time. Why won’t they just take that?” Shrilly, I assured the nice person on the other end of the phone that I agreed, it’s very weird and possibly wrong, but COULD THEY PLEASE JUST DO IT PLEASE. They resubmitted the orders under my cardiologist’s name.

11) One week later, I received a phone call from Emory to do my pre-registration interview for the upcoming appointment. It was uneventful. I was finally going to have this stupid scan!

12) The weekend of the scan rolled around. It was also nearly Christmas, and for various reasons, the day before the scan, I was having a Very Bad Day. So when I received a voicemail message on my phone (I have my phone set to go straight to voicemail if the caller isn’t in my contacts) letting me know that my scan the next day had been canceled because “the clinic isn’t open tomorrow,” I—to put it mildly—absolutely, utterly, lost my shit. By the time Otto heard me slamming things around and came to ask what’s wrong, I opened my mouth to tell him and began shrieking about how I GUESS I WILL JUST GO DIE because I am just so frustrated and tired of all of this. It… wasn’t pretty, is my point. Otto stayed with me long enough to quiet my epic freak-out to just sobbing and hiccupping, and then told me he’d be right back. He took my phone and disappeared up the stairs to his office.

13) Ten minutes and nary a single voice-raising later, Otto returned to hand me my phone and let me know that I’d be having my scan later that week. “HOW?” I asked, wondering if he was punking me. “I told the woman on the phone that the health care Emory is providing my wife at this moment is absolutely unconscionable,” he replied, demonstrating the calm but somewhat scary Professor Voice he generally reserves for students who have fucked around and are now finding out.

14) The day before Christmas—two days before my scan—another woman from Emory called, this time to tell me that “radiology here follows their own protocol.” Every muscle in my body seized, I think. I closed my eyes and dropped my forehead to the nearest horizontal surface. “So… you are not going to do the protocol specified in the orders?” I asked. “No ma’am,” she chirped, “but it’s fine, you’ll have what you need. [My doctor] orders this scan from us regularly and it’s not a problem.” We then played a several-minute game of who’s-on-first as I tried to ascertain what the difference was, and she kept saying that she wasn’t sure, but they just wanted to let me know, but it would be fine. Finally, in desperation, I said, “I’m sorry, WHY are you calling to tell me this? Because so far all I’m hearing is that you need to tell me that it’s different but you don’t know how it’s different and also I shouldn’t worry but you needed to let me know because…?” My question confused her (which is fair, because I was also confused). She rushed to assure me (again) that it would be fine, not to worry, and that this was just a “courtesy call.” Eventually the call was over, but I was (even more) nervous.

15) First thing in the morning, the day after Christmas, Otto and I showed up at Emory for my scan. I tried to ask someone about the protocol situation, and was told not to worry about it. MMmmkay. The scan itself was uneventful. Otto took me out for a nice breakfast, on the way home, because “it seems like you earned it.” I told Otto that I was pretty sure whatever I’d actually earned in this process, it was going to cost a LOT more than breakfast, but I would settle for some bacon.

16) The day of my follow-up appointment with the surgeon’s office, someone from there called me about two hours before my appointment time. I saw the practice’s name on the callerID and was immediately convinced I’d done the time change calculation wrong. “Am I LATE?” I said, “I thought my appointment was in two hours!” No, no, I was assured, I wasn’t late. But, uh, had I had my scan? Because they hadn’t received it. I started laughing so hard, I’m sure the poor guy on the phone thought I was completely deranged. When I could speak again, I gave him the condensed version of what I’d been through prior to the scan, and that I wasn’t even slightly surprised that they didn’t have it, because of course they didn’t. The guy on the phone—who is my new BFF—muttered something about loving the Emory doctors and hating the Emory staff (BIG SAME, my dude), and told me to sit tight, he would call over and get them. He called back 15 minutes later to tell me he got the runaround, and could I maybe try…? Because sometimes they’re more responsive to patients. That set me off again, laughing and snorting in spite of myself. “I have a better idea,” I said. “Let me call [my doctor]’s office and ask THEM to send it, instead of the Radiology department. But… I don’t know if you’d have them in the next two hours.” No worries, he told me, let’s cancel for today, he would squeeze me in later in the week. Okay.

17) The scans were finally sent, and at my rescheduled appointment three days later, I was told that my iliac vein is “significantly compressed” and I am “an excellent candidate” for the stent surgery, but also that I need to understand that this is a new-ish procedure and they don’t have long-term outcome data, yet, and while 80% of people so far in the study group experience “significant symptom improvement,” 10% have only slight improvement, and another 10% don’t improve at all, so it’s definitely not a sure thing. Based on what I can only describe as my general reluctance to to undergo any type of medical procedure at this point, the nurse I met with over Zoom ended up suggesting that we “table” the issue for now. Instead, she suggested, let’s get a repeat scan of my legs and see if some ablation treatment on the vessels there gives me some relief. I agreed that this seemed like a reasonable plan.

18) One week later, I had my regular appointment with my cardiologist. She flipped through my file and asked me if I was scheduled for stent surgery. “Uh, no,” I said, somewhat taken aback. “When I had my follow-up, the nurse said I was a good candidate but maybe we should scan my legs again and try treatment there, first.” My cardiologist was astonished. “That’s what [the surgeon she referred me to] said??” she asked. I clarified that I’d seen the nurse, but then I remembered that actually, due to the mixup with getting the scans and all, the nurse had said the other surgeon in the practice had reviewed my scans. “No no no no,” said my cardiologist, fairly flying off the stool upon which she’d been perched. “I’m going to go call [surgeon] right now.” And she disappeared. Otto and I exchanged looks. I may have asked him if he thought she was going to come back and chuck me into a Delta cargo hold to send me out west ASAP. When she returned, she said she’d left a message, but in her opinion I should “strongly consider surgery” and yes, the repeat leg scan and leg treatment is fine, but sometimes if you fix the leg issues without fixing the iliac compression, it makes POTS symptoms worse, so she wasn’t sure that was a good idea. We then moved on to other things, and eventually the appointment was over.

19) The next day, I got a call from the nurse I’d Zoomed with the previous week. “Hey, Mir,” she said, “I’m glad I caught you! Do you have time to talk for a minute?” Confused, I said I did, and her voice dropped a little as she replied, “Great, great. I, um, I just wanted to call and ask if I misunderstood you, on our appointment last week? I thought you were not eager to have the surgery…?” I assured her that that was correct, I am not. Why? WELL. Turns out that [my doctor] and [surgeon] are buddies as well as coworkers/collaborators. And apparently [surgeon] called [my doctor] back late the night before, and then CALLED THIS NURSE AT HOME TO SAY I SHOULD’VE BEEN SCHEDULED FOR SURGERY. “Oh, JESUS CHRIST,” I said, before I could stop myself. I quickly reiterated that based on what she had told me, and based on my own reluctance to fly 2,000+ miles away for an experimental surgery at this point in time, that even if she HAD told me I DESPERATELY NEED this surgery, I still would’ve said I wasn’t ready. And I thanked her for listening to me and not pushing, and told her I was sorry if I’d gotten her in trouble with [surgeon] somehow. She laughed and assured me it was all fine, just maybe some miscommunication between the doctors (ya think??), and I let her know I’m having my leg scan next week and we’ll be following up on that soon, and so far as I’m concerned, all was well.

I just… feel like “I have some abnormal pelvic vein compression common to people with my set of symptoms and it’s possible surgery will help” shouldn’t be a… *checking notes* 3,500+ word story. Y’know? The entire thing has made me want to go hide in a cave. It’s exhausting and time consuming and expensive (even with excellent health insurance), though maybe I should consider it while we still have good insurance and before wormbrain dude deports me to a happy farm, I don’t know. (<- Nothing would delight me more than if I could reread that sentence 10 years from now and have no earthly idea what it refers to, by the way.)

So.

In conclusion, I don’t really know what’s going to happen. Setting aside the ridiculous, prolonged string of events that brought me to this point, I feel like I am just now coming off two solid years of health decline. (First with the pancreas/gallbladder stuff, then recovering from gallbladder surgery while dealing with a lot of of new MCAS symptoms, and that’s aaaaaaaaaaaaall wrapped up in some hefty weight gain because, we think, the pancreas damage rendered me insulin-resistant as a special bonus feature.) The combination of treatments I’ve been on for just the last month or so seems VERY promising—I am already feeling better than I have in a long time, plus I am finally (slowly) shedding some weight—but I’d like to feel even better, for longer, before subjecting my body to another surgery… if at all.

Maybe I can ask the surgeon if she accepts payment in the form of temperamental root vegetables! That seems unlikely. But it might make me more likely to do it.

I don’t have a good way to wrap this up, so here—let me do you a solid, instead. The next time you’re feeling down, please remember that doggles exist. They come in different colors! And shapes! You can even buy them for a dog with only one eye! No one can stop you!

She’s probably glaring at me, but who can tell?