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Posts Tagged ‘doctor’

Oh my goodness… so, so much has happened recently that I feel completely overwhelmed in sitting (or, rather, laying) down to tell you about it!  But I have a new image to share with you and I really wanted to post it and maybe give you guys a little gloss-over update at least, so I’m just going for it.  If I let myself think about it any longer, I’ll just get frozen with intimidation over how much I’d like to cover!

First news: health is poor.  I mean, yes, you all know my health is pretty much always poor, but it’s been even more so lately.  I feel like it’s been slowly sliding downhill over the past… year?  year and a half?  two years?  But the last six-to-nine months have been extra bad.  I think I’ve told some of you at least about the “hot flashes” I’ve been getting.  It’s actually quite a lot more complicated than calling them “hot flashes” implies, but I don’t know a better name to get the general idea across with, so we’re going to call them “hot flashes.”  What it really is, is my body suddenly seems unable to regulate its temperature properly, which sends me into sudden, drenching sweats, often while I’m shivering with cold at the same time.  Very similar to the sort of sweats you get with a fever, but it only lasts a few hours, it comes and goes quite randomly, I have absolutely no other fever symptoms and it seems to ONLY happen in the morning (because that’s when my day is busiest, I have the most appointments scheduled, etc, so it can be the most obnoxious).  This sounds like something that’s just annoying, which it is, but it’s quite a bit worse than that.  It makes me weak and lightheaded, it’s not something I can simply push through by will alone; I might have to cancel appointments or send Geoff to the grocery store on his own.  We both utterly detest grocery shopping, but I’m much too weak to do it on my own anymore, and if I at least go with Geoff, it’s company for a task no one enjoys, so I always feel bad if I have to make him do it by himself.

These were getting so bad and disruptive for a while that I saw my GP about it.  He tested my thyroid and a couple of other things in my blood, examined me, decided it wasn’t anything menopause-related (which, yes, would be QUITE young to start having them, but stranger things have happened), said it sounded hormonal and sent me on my way.  I saw my neurologist, he said it wasn’t anything neurological and I should probably see an endocrinologist; a doctor who specializes in looking at your hormones.  I also happened to see my pain specialist during this time just for my every-three-months-check-in, and mentioned it to him, and he agreed it sounded hormonal, but was outside his expertise.  So I did some research, found an endocrinologist nearby who got good reviews online and made an appointment.

The first bad sign was that the endo’s office doesn’t accept credit cards of any kind, only cash or checks, which they had not mentioned in ANY of the conversations I had with them when I set my appointment up.  Not only is that just absurdly behind the times, but I, like most people this day and age, very, very rarely carry either cash or a checkbook on me.  Before going to this doctor, I couldn’t tell you the last time I wrote a check.  Thankfully, I happened to have shoved my checkbook in the bottom of my purse anyway, but I had a mini panic attack in the waiting room wondering how I was going to pay these people.

Eventually I found it though and went into my appointment, which was mostly going over my medical history with the doctor and explaining what the problem I was seeing him for was.  Obviously, my medical history is much more like something George RR Martin would write about than a quick-read paperback, but the doctor interrupted me quite a lot as I tried to tell him details which were important and extremely pertinent to the hot flashes I was seeing him for.  Obviously, I did not care for that, but it is a very common problem with doctors.  If I wrote off every doctor who interrupted me while I was explaining things, I wouldn’t have any doctors left to see.  Anyway, he ALSO agreed it sounded hormonal and said we’d run a bunch of blood tests to see what was going on.  We’d be repeating everything my GP had already run because, the endo said, his tests were more thorough.  Ok, fine.  Six vials of fasted blood later, they were sent to the lab, Geoff bought me breakfast and I waited a week’s time until I could get my results from the doctor.

In this appointment (paid for with the check book which I’d triple-checked was still in my purse after the stress of the first visit), the doctor went over each page of the bloodwork results with me, explaining what was tested and how every single thing came back normal.  My blood was normal, thus, I was “perfectly healthy!” and did not need to see him any more expect for in another six months to recheck my blood and make sure it was still all normal and I was healthy.

Obviously, I am not healthy.  Even if you discount my mountain of other ME-related issues, the fact that I was presenting with extremely hormonal-sounding problems should indicate that something is amiss.  This doctor had absolutely no interest in finding out what this life-interrupting issue was though.  The impression he gave me was that he thought I was an overly worried, mildly hypochondriac girl getting her pigtails in a twist over nothing and that showing me that my bloodwork said there was nothing wrong would make the problem go away, because it was  probably something I’d dredged up on my own through pure will.  But the most offensive part of all… he did not check one single motherfucking hormone.  Not ONE.  On a case where three other doctors all had said the issue sounded hormonal, I told him I was concerned it was hormonal, he didn’t bother to check anything.

I’ve since been told by other people who have to see endos regularly that you usually have to specifically ask them to check your hormones, if that’s something you want.  WHY???  You don’t have to do this with ANY OTHER medical specialty.  I don’t have to tell my neurologist to check my brain, I haven’t had to tell my gynecologist to examine my lady parts.  How is this something that is not only allowed, but is COMMON in this one niche???

At the time he was going over the bloodwork with me in the room, I was trying to control being wildly disappointed over having yet another problem come back testing as “normal” and being shunted off again, again being treated as if I was making this all up, again being patronizingly patted and being told to not worry my pretty little head about it.  Look, I’m sorry that my disease isn’t something they teach a lot about in medical school, I really am.  I’m sorry that most doctors feel threatened when confronted with something they can’t simply write a prescription for and it’s solved.  I’m sorry that it makes them feel insecure, as if they don’t know what they’re doing because I don’t have an easy fix.  I am far, far sorrier about that than any doctor who’s treated me like a hot potato could ever be.  But I do not go around to doctors’ offices for fun to mock them for their lack of knowledge.  I go in with an open mind every time, despite years of consistent disappointment, hoping that, just maybe, this will be the time when I get an answer.  Not even THE answer, just a part of it.  But to not test any hormones for a presenting issue that, to every lay-person and doctor I’ve spoken to, sounds extremely hormonal is inexcusable.  I spent a lot of money in copays, I spent six vials of blood my body could have used, I spent a lot of time gearing up for appointments and recovering from them, I spent incredibly precious energy getting to my appointments, getting tests done, and sobbing after my last appointment as my hopes were again dashed and I realized it had all been wasted.  The absolute least the doctor could have done was run the tests I wanted done but didn’t know that I had to ask for specifically by name, because that’s how endocrinologists are.

Each time I have one of these horrible experiences with medical professionals, it makes it so, so much harder to even fathom trying again.  Why should I if most of them are going to just call me crazy and kick me out of their offices as quickly as possible?  And of course I know that I have to keep trying because giving up isn’t an option, but for fuck’s sake, can’t they at least try and meet me in the middle somewhere?

After that edifying experience, I couldn’t even bear the thought of looking for another endo and starting the process over again, even knowing now that you have to ask for your hormones to be tested.  The wound was just too raw.  What I did have was an appointment set up with Celestine Grace, my very favorite medium, who’s helped me a lot in the time we’ve been working together.  I asked her what would help my body and she told me to take rose hip supplements, which I knew are very high in vitamin C.  They’re cheap and easily available from Amazon, so I got a bottle and started taking them.  And you know what?  Within a couple weeks, my hot flashes had gone down considerably.  They still popped up now and then, but the difference was huge.  I ran out of them and it took a few days before I could get my replacement bottle in, and while I was off them, my hot flashes spiked again.  I’m back on them now and they’re going back down, but it might take a couple weeks, like it did the first time.

I am so, so grateful to Celestine for that bit of advice and for helping to turn around a very bad situation (and also all the other help and advice she’s given me over the year or so we’ve known each other) but it’s so incredibly ironic to me that four conventional doctors couldn’t or wouldn’t help me, but my medium did.  It goes to show the strength of her talent while underscoring how little conventional Western medicine has to offer me.  Thank you, Celestine, I can’t tell you how much those rose hips have helped me!

The whole thing got me thinking that I may just need a whole different approach to my health, so I began to look into different specialists and alternative treatments.  I mean, that’s something I’m continually on the lookout for, but I was searching with a new urgency this time.  Giving vitamin C intravenously has been a growing trend… since my body had responded well to the rose hips, maybe it would like a more concentrated dose even more!  I have found a naturopath who is nearby, returned my phone call herself to discuss if we would be a good fit for each other and offers IV vitamin C along with a ton of other therapies I’ve been interested in but haven’t been pushed far enough to try yet, since most are expensive and not covered by insurance.  I have an appointment with that doctor next Monday morning, which will just be a consultation between one to two hours where we just go over my history, what changes I’d like to see and what treatments might be good for me.  They also test hormones.  🙂  As hard as it is for me to allow myself to be hopeful that maybe this time it will work, I can feel hope trying to quietly creep in.  I’ll let you guys know how that appointment goes.

As my body has gotten more and more painful and uncomfortable to inhabit, I’ve been turning to my own form of spirituality for strength and comfort.  It works for me.  It helps significantly, so much so that Geoff has noticed its effect.  It’s a bit too much to get into it all now, but it’s based in meditation and finding my own path up the mountain toward god/source.  A lot of it might sound like new age woo-woo, but I stick with what works, and this does.  My variety of spirit guides have been a big part of keeping me from utterly falling apart as things have gotten more and more difficult all around… just thinking about them makes me feel more peaceful.

I frequently mourn the health I once had, the life I once had, everything ME has taken away from me.  I mourn for those who I wish I could have gotten to know in this life and not just in the next.  I still mourn the loss of our previous home with our incredible neighbors, even though this place is finally feeling more like home and we have great new neighbors here.  Mourning is a universal human experience; I’m sure every one of you can think of things you mourn.

My new city has a lovely, tiny, serene, old little cemetery within what would be walking distance for most people from my home.  I wanted to shoot there when I had the excellent Teri Wyble over (quite a while ago now, I’m terribly behind on editing).  I didn’t know exactly why I wanted to shoot there, or what I was trying to say at the time.  This sometimes happens.  I’ve learned by now to just go with it, that its reason will become clear to me later.  That was the case with this image.  I asked Teri to imagine this was the grave of someone she loved and missed horribly; someone whose loss she still mourned.  I don’t know if she was tapping into a loss in her own life or if she’s just very good at imagining, but she portrayed exactly what I wanted:

Loss.  An inability to move on from the blow of death.

But I didn’t want it to be completely bleak.  The birds swooping in to comfort her speaks to me of the healing that comes after we let ourselves grieve.  Yes, you have to pass through the darkness first, but there is eventually light.  Sometimes it comes to you on feathered wings when you least expect it.

Whether the viewer has recently experienced this themselves or not, it’s such a common part of just being human, I wanted to create this.  Not to wallow in the mud of despair, but to remind myself that the heaviness will someday lift.  The pain will ease.  The grief will lessen.  Maybe even, a treatment will eventually work.

Thank you so very much, Teri, for your beautiful, emotive modeling!  You are a wonderful human being and model.  🙂

Enjoy, my friends!  If this speaks to you, I’d love to hear what it brings up if you’d like to share that in the comments!

Mourning Dove

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But not of beer.  Beer would have been so much better.

Well.  I’ve been meaning to tell you guys for FOREVER about the adventure I had surrounding my sinus surgery.  It’s a little bit long of a story; I will try and keep it brief but there was just a lot that happened, so I can’t promise anything.

From mid-July through the end of October, I was getting colds, repeatedly.  I’d get a cold, get over it, have about 2-3 weeks of more or less “normal” (for me) time, then get another cold.  One of these colds lasted for 3 weeks, 1 turned into strep throat and another turned into an ear infection so exquisitely painful that I gave serious thought to gouging the ear out of my head.  After a string of doctor visits, I was eventually sent to an ENT; an ear/nose/throat specialist.  I loved him right away.

He immediately agreed that this was abnormal, took a glance inside my nostrils and since there was nothing obviously wrong inside sent me off for some allergy blood tests and a CT scan of my sinuses.  The office was shockingly quick at getting this all set up; I’ve come to learn they are an extremely efficient and well-oiled, patient-loving machine.

The allergy tests showed a mild allergy to Timothy grass and mold, neither of which surprised me and both were too mild to be to blame for my illnesses.  The CT scan however showed inflammation and serious congestion in my sinuses, particularly on the right side and more toward the back of my skull.  I hadn’t ever really given a lot of thought to just HOW MANY sinus cavities you have in your body, but it’s rather a lot, as this image shows:

My ENT recommended a surgery where he would go in and clean all the cavities out (while I slept deep in anesthesia) because it clearly wasn’t going away on its own.  If I did nothing, the cycle of colds every 2-3 weeks would just continue, which was obviously not a livable option.  And it also happens that my doctor is not only an ENT specialist, but that he specializes in this exact type of surgery!  And Geoff has had this exact surgery twice!  I felt I was in very good hands with both of them taking care of me, so I agreed to have the surgery done.

Before

Before

November 4th Geoff woke up very early and drove me to the surgery center.  While I’ve had my nerve-blocking injections countless times, this was the first true, actual surgery I was going to have.  They knock me out for a short time for the injections, but it’s just a sedation, not actual anesthesia.  I was a little nervous, but mostly just excited to have the stupid sickness cycle stop.  I woke up with a sore throat; they’d had a little trouble intubating me (I’m guessing because I’m so small) and a little nauseated, but they gave me some nice drugs which cleared the nausea right away.  My ENT had taken a swab of the gunk in my sinuses and sent it to the lab to do a culture on it and see if it was anything that needed further treatment.  So other than a slightly sore throat, it was all very routine.

After - very sleepy looking

After – very sleepy looking.  Get used to the “mustache bandage” look.  I don’t know why my gown looks like it’s going to fall off at any moment.

The next couple days are a bit of a pain-filled blur in my mind.  Thankfully, Geoff stayed home with me to get me through the worst of it.  Of course, ALL my sinuses were inflamed and unhappy and my throat was really starting to hurt.  I’d expected to feel like I had a bad cold afterward but this was a whole new level of sinus and throat pain which I’d never experienced.  Geoff was able to call my doctor and explain my incredibly sore throat (talking was not going to happen from me) and he immediately prescribed the most beautiful, soothing numbing gel to gargle with.  It was a little messy, and about the consistency of pudding which made it hard to actually gargle, but oh my GOD did it work.  It turned me from the strep-throat severity of pain where breathing feels like inhaling shattered glass into something mildly uncomfortable when it wore off.  More points for my doctor!

Over the weekend, I started feeling better and better and by Monday, 6 days after my surgery, I decided I could run a short errand to my nearby craft store, since I had a really spectacular coupon which was about to expire.  As I reached for my purse (in a position I’d been in multiple times since the surgery) I felt something warm and wet in my nose.  I grabbed a paper towel, not thinking much of it until I saw I’d dripped blood onto the kitchen floor.  And then it REALLY started pouring.

I managed to grab a large wad of paper towels and run into the bathroom.  I have never bled like this in my life.  It was like all the veins in my sinuses just gave up and let loose.  It seemed to be coming mostly from the right side of my nose and very far back; if I tipped my head up or even held it level, blood waterfalled down my throat.  In a mild panic and not knowing what else to do, since I didn’t want to be swallowing all that blood, I held the paper towels to my face, leaned forward and let it drip into the bathroom sink.  And fortunately, I had my cell phone in my pocket, so I called Geoff, who had just gotten to work.  I was stuck in the “fright” of the “fright or flight” response and couldn’t think of anything else to do.

We discussed if I needed an ambulance and I just didn’t know; I did notice that after the initial panic, as I tried to slow my breathing and calm myself, the bleeding slowed a little, which gave me some hope.  Geoff called the ENT’s office and came right home, but we both knew it would be about 45 minutes before he got there.  So Geoff called John, one of my wonderful neighbors, hoping he was home.  John wasn’t home but he was close by.  He dropped everything and came rushing home to check on me until Geoff got there.  I later found out that John had been about to get his car washed and was about to send his car through the machine where the initial cleaning is done and there were people lined up behind him.  The car wash people told him it wouldn’t take long to go through the machine and then he could just leave, but John made everyone move their cars so that he could leave right that instant.  That’s the kind of people my neighbors are.  They more than have my back.

Sleight Of Hand © Sarah Allegra, featuring my neighbor John

Sleight Of Hand © Sarah Allegra, featuring my neighbor John, who will make every single damn car get moved if he needs to check on me quickly

John got home and at that point the bleeding had mostly stopped so we agreed an ambulance wasn’t needed but he sat on the bathroom floor with me and told me stories to calm and distract me until Geoff got home.  He was an angel.  (And just to be clear, my other neighbor, his wife Donna, would have been equally adept in his role.  John happened to be closest to home so he took up the task, but Donna certainly would have done the same if she’d been around.  After all, she helped me take care of the opossum littler I found!)

After I’d calmed down and the bleeding leveled off, I took a few photos of the sink to record it.  The photos look dramatic, but every person who actually saw the copious blood agrees they don’t do it justice at all; both Geoff and John said it looked like a bad Halloween party decoration.  But to give you an idea, here’s one of my cell phone captures.

It looks like a fair bit of blood, but trust me, it was much, MUCH worse in person

This photo actually came from Geoff’s camera, not mine.  His takes much better photos than mine does.  It looks like a fair bit of blood, but trust me, it was much, MUCH worse in person.  Geoff was also a saint for cleaning up the whole bathroom by himself, which I felt bad about, but I was under strict orders to REST and lay down.

So Geoff and I went back to see my ENT.  He took a look around, determined that yes, I was bleeding rather a lot and decided to pack my nose.  Apparently, he’d used a gel-like packing while I was out for the actual surgery; it was similar in texture to Jello.  I couldn’t even tell that there was anything in my nose, it was so mild and comfortable.  The new packing however was NOT pillowy and Jello-like.  I can only describe it like having an entire tampon made of broken glass and cacti bits shoved up one nostril.  And that’s after they sprayed a numbing spray inside my nose.  My eye watered and watered on that side of my face but I did not cry.

The packing was so incredibly uncomfortable that I couldn’t even talk or all the glass shards and cacti quills jabbed at me from inside my nose.  I was to keep it in for two days to really stop the bleeding, then I could have it out.  I wasn’t exactly happy, but I was glad to have the bleeding stopped.

Bandaged up with packing up my nose, taped to my cheek

Bandaged up with packing up my nose, taped to my cheek

The rest of the day, I communicated with Geoff through gestures, grunts and writing things down.  At one point I laughed quietly to myself and wrote “this is like The Leftovers,” on my pad of paper and showed it to him.  I was not in the least bit comfortable, but I didn’t worry I was dying imminently anymore and I knew that I could get through two days of pain, high though it was.  My doctor made sure that I was well stocked on painkillers before I left, because that’s the considerate kind of guy he is 🙂

The next morning I woke up and realized I was swallowing… and again… and again… and then I jolted upright and rushed to the bathroom because the bleeding had begun again.  Since I was sleeping on my back, slightly elevated (like I was supposed to) and the bleeding was coming from so far back, all the blood was just pouring down my throat like a thick, gross waterfall.  I had no idea how long I’d been swallowing my own blood, but I was again alarmed that I was bleeding so much, even after the packing was in.  It was coming from so far back, it was even behind the packing; it was like it wanted to run down the right side of my nose, but since that was now packed, it was overflowing down the left side and down my throat.

This time when Geoff called the ENT’s office, they told us to just come in right then, so I did, pale, woozy, feeling awful, still in my PJs, since I didn’t dare take the time to get dressed, nor make any movements which might cause my nose to bleed more.  I sat in their lobby for a few minutes, while the bleeding had blessedly stopped momentarily, with a huge ball of paper towels clutched to my face and a plastic grocery bag in my other hand in case I started dripping.  I laid my head against Geoff’s shoulder, closed my eyes and tried to forgot the lobby full of people who were staring at me in alarm.

The nurses were trying to clear a room for me when I suddenly felt the surge start back up for no reason.  Geoff alerted the nurses.  One of them brought me a kidney bowl to hold under my chin for dripping, then they were able to usher me off into a room away from the frightened eyes of the other clients.

kidney bowl small

A kidney bowl just like this!  The curved shape makes for good under-face catching.

My ENT was in the middle of surgeries of his own, so I saw one of the other doctors, who was just as lovely and kind as everyone else had been.  All the available nurses hovered around, trying to find anything to do to make me more comfortable; one wet paper towels and dabbed my forehead, another brought me some ice water to sip between procedures from the doctor.  There was one nurse in particular who stayed right by my side the entire time, no matter how gross it got.  She would frequently hold my hand or pat my knee during difficult parts and she was completely sincere about it; she wanted me to feel better and was doing any little thing she could think of.  As truly, completely awful as I felt and as unpleasant of an experience as it all was, whenever I remember that nurse, I feel a surge of the warm love she radiated.

This doctor decided to remove the packing, since all it was doing was obstructing the view of where the blood was coming from, so he pulled it out… and my god, I don’t know  which was worse, going in or coming out.  Either way, it’s not something you want inside your nose.  Removing it started a fresh flow, much of which was freely flowing down my face into the bowl under my chin.

The doctor kept needing me to tip my head back so he could see what was happening inside, which meant the blood kept going down my throat and getting swallowed.  At one point I started to feel very nauseated (more so than I had all morning).  I murmured to Geoff that I thought I might throw up and then a moment later, I was barfing up blood into my kidney bowl.  Geoff held this bowl for me under my chin as I filled it, he and the nurse did some sort of quick shuffle with bowls and I filled a second one.  If you’re ever given the choice to throw up blood or not, I would strongly recommend you choose to NOT do it.  That was probably the grossest thing that’s ever happened to me, and the whole time, Geoff and my nurse stood right by me, holding bowls (she did have gloves, but it still had to be pretty unpleasant), smiling and patting encouragements and holding my increasingly icky hands.  They are saints.

Shortly after that, the doctor was able to temporarily stop the gushing and I heard him and Geoff discussing that I would need an emergency surgery that day so they could go in and stop the bleeding for real.  I was going to be transferred to a hospital where I’d wait for my ENT to finish his current surgeries, then he’d meet me at the hospital and work on me.  They were weighing the options on either Geoff driving me over or having an ambulance come and take me when I asked if I could get up and wash my hands at the sink in the room, since they’d gotten spattered with blood and whatnot.  I made it to the sink, slowly, and I washed my hands, carefully, and then…  I’ve fainted before, I recognized the rushing deafness and darkness and knew I was about to go out so I hurried to plant my back against the cabinets and tried to slide down to the floor before I lost consciousness, thinking I’d have a shorter fall from there.  Looking back, I can see it would have been better to just say, “Hey Geoff, I’m passing out,” but of course you’re not thinking very clearly at the moment.  Luckily he saw what was happening so he leaped across the small room, nimbly avoiding expensive machines and he grabbed me before I hit the floor.  From his quick action, I never quite lost consciousness, but I was pretty well a rag doll for a few minutes.

At that point, the doctor wisely decided I should travel to the hospital by ambulance.

That was a first for me; an ambulance ride.  The medics were all very nice and clearly knew what they were doing; they got me on a saline IV before we even made it to the hospital, which was only a couple miles away.  I did decide that I didn’t like laying down and facing backwards in a moving car though, it would have made me carsick if the ride lasted much longer.  Although I don’t think that I would have had anything else to try and throw up.

The hospital got me situated in a room pretty quickly, a nice one by hospital standards; it was private, I had my own bed, bathroom and TV and there was a curtain we could draw over the glass doors.  Since at that point I was stable, we just had to wait a while for my doctor to finish his other surgeries and come over to the hospital.  So for a while, everything was surreal and strangely calm.  We watched some TV.  I saw my first episode ever of Seinfeld.  The staff came, drew blood, determined I did not need a blood transfusion, and switched out my now-empty saline bag for another one.

In my bed at the hospital, still being a trooper

In my bed at the hospital, still being a trooper.  If you look carefully you can see how pale my lips are compared to the rest of my face.

It was fairly late in the day when my ENT was able to get over to me, but he seemed as fresh and alert as if I’d been his first patient of the day.  He brought an assistant with him and they used one of the hospital’s anesthesiologists.  We spoke to the anesthesiologists for a little while before they took me into the surgery room and Geoff mentioned that they’d had trouble intubating me for the first surgery.  The anesthesiologists looked at me assessingly and said, “I don’t think I’ll have trouble,” which he did not.

For me, then it was being wheeled into different rooms and getting various IV injections; the first one made you really, really relaxed and the second made you sleep.  As a chronic insomniac, I wouldn’t mind that every night 🙂  As I was told later, once I was under, my doctor looked inside my nose and determined that one artery at the very back of my sinuses, where the two sides join together had simply burst for no good reason, and that was what was causing all the bleeding.  He cauterized the offending artery along with a few of its friends for good measure, filled up my right side thoroughly with the Jello packing and let me wake up.  I spent a little longer in the hospital, in a different room with Geoff.  The anesthesia had again made me a little queasy, but the nurse gave me an injection which made that stop.

Groggy and pale after the emergency surgery, but I could muster the will for a thumbs-up, goddammit

Groggy and pale after the emergency surgery, but I could muster the will for a thumbs-up, goddammit

And then we finally went home, more than 12 hours since we’d left it.  Thankfully, our neighbors had come and let Calantha outside much earlier in the day and also fed her dinner.  She and the cats were happy to see me and concerned about all the medical smells on me.  I think I stumbled around for a little bit, while Geoff feed the cats, I found PJs to wear which hadn’t just been in a hospital, all the while Geoff kept telling me to lay down; I don’t actually remember very much of this part.  But I think I fell asleep fairly quickly.  As soon as I woke up the next morning, I checked myself anxiously; did I taste blood?  Was everything ok?  And for the first time in several days, I was ok.

Geoff stayed with me for a couple of days which ended up being really needed.  I was extremely weak (and extraordinarily pale, everyone kept telling me, even considering my baseline paleness) and almost any movement made me very, very dizzy and light-headed.  Geoff made me lay down as much as he could, but I’d have to get up periodically to use the bathroom, or for some other task he couldn’t do for me.  It was a procedure though.  First, sit up in bed instead of laying down, propped up on a pile of pillows.  Let the dizziness pass.  Swing legs over side of bed and wait.  Let the dizziness pass.  Slowly stand and immediately put your hand (and probably face) on the wall while you ride out the biggest wave of dizziness.  Once you’re a little more settled, you can probably walk the 10 feet to the bathroom.  Geoff hovered anxiously every time I got up just in case I started to go down again.

I went back to see my ENT two days later and my GOODNESS, did EVERY person in that office remember exactly who I was.  I made quite the impression on them.  (Even now, as soon as I walk in, there’s a chorus of greetings from the whole staff.)  Everyone was happy that the surgery had worked and I wasn’t bleeding at all any more.  So why did the artery burst in the first place?  No one has any idea.  It’s just a mystery.  My doctor talked about how every now and then, you’ll have a patient who bleeds later on the day of the surgery, or maybe the day after, but 6 days later is unheard of.  There I go again, baffling doctors with my weird body.  I felt so, so much better compared to how I’d felt at the beginning of the week, I didn’t even really care how weak I was, I was just glad to be not bleeding, not at a medical facility, at home and not nauseated.

One of the first days I was able to stand for long on my own.  But look, I'm not at the doctor's!  I'm not at the hospital!  I'm wearing 18 layers because I have no blood, yes, but I'm home and on the mend!

One of the first days I was able to stand for long on my own. But look, I’m not at the doctor’s! I’m not at the hospital! I’m wearing 18 layers because I have no blood, yes, but I’m home and on the mend!

My doctor tells me I lost 2-3 pints of blood between the 2 days of bleeding, which is significant, especially for someone as small as I am.  And frankly, I’m still feeling the effects of it.  I learned that it takes 120 days for a blood cell to replace itself, so even though I’m taking iron supplements to help my body along, it’ll be the middle of February before all my blood is replaced.  It’s getting better, but there was a while where I could hardly do anything that involved walking for more than a few feet without getting dizzy and winded and having to sit down.  Even now, I still have to be careful.  For some reason it there’s any kind of incline I’m walking up, even a very gently sloping one, I feel like Sisyphus pushing his boulder up a hill.  I still have to take a break halfway through walking the one flight of stairs at my therapist’s office, and another breather when I get to the top.  It is getting better though, noticeably so, and my doctor assures me this is normal for the amount of blood I lost.

I also found out that the culture they’d sent in of the goo inside my sinuses had turned out to be harboring a staph infection, which the antibiotics I was on as a natural result of the surgery should get rid of also.  I ended up needing to go two rounds with the antibiotics to really clear it up but it seems to be gone now.  And I have not had a single cold since I had my surgery, which goes to prove that really was the cause of all my summer sicknesses.

Overall, this was definitely not a fun experience but there were some good things that came out of it.  I know what a caring and attentive ENT I have now, along with the entire staff.  I practiced really resting and allowing others to do things for me when I needed them to, which is hard for me to do.  I’d much rather just do it on my own even if it makes me pass out than bother anyone else.  I watched Winter’s Tale and had a lovely afternoon with my mom, who came to stay with me one of the days Geoff had to be at work.  I felt loved and cared for.  And then, of course, there’s this… my mom brought this “to cheer me up” because of who was on the cover:

Matthew McC small

Thanks, mom 🙂  And big thanks my neighbors, my ENT and all of his staff, the ambulance workers and everyone at the hospital, if any of them are reading this somehow.  My friends and family were very diligent about checking in with how I was feeling by text, which was perfect as that was about all the communicating I could do.

And of course big, HUGE thanks to Geoff for taking such excellent care of me!  He always does, but I always appreciate it!

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Before I forget, I want to thank everyone who so lovingly came together for my friend Erick!  I am extremely happy to say that he is doing much, much better and has been released from the hospital.  He isn’t through this rough patch yet, but it seems the worst is behind him and his spirit has been lifted for the fights ahead.  Thank you all dearly for your thoughts, wishes and prayers.  I know it all made a difference.

I wanted to let you all know that I’ll be taking a “vacation” for the next week or so.  I’m not going anywhere; in fact, the whole point is for me to stay at home and really, really rest.  August was one of the worst health months I’ve had in a long time, including two urgent care visits (very early in the morning) two appointments with my GP,  a 5am call to the 24 hour nurse hotline (which led to one of the GP visits but I was worried I needed to to the emergency room) two colds, one ear infection, one thing which I thought was another ear infection and turned out to be allergy-related, countless migraines and almost as many nights of insomnia as nights where I slept.  It was just a really hard month.

I had a few photography things I needed to take care of, but as of now, I’m taking a little time off.  I’m thinking a week or so, but obviously I can tinker it to fit how I’m feeling.  I may not be on social media as much for the next few days and I may or may not post a photo next week.  I actually have one ready to go but the posting requires more energy than you’d think, especially if it needs to be promoted in any way.  So that’s all to say, I’m going to hunker down and try and stay in bed in my PJs as much as possible for the next week.  I may be a little quieter online, but it won’t be forever.  🙂

And that leads me neatly into two other things I’ve been trying to find time to say between all the craziness.  One is a guest article I wrote for MESupport.Co.UK.  Louise, who runs the site, was very generous with letting me pick the topic I wanted to write about and also being extremely forgiving about how long it took me to actually get the article to her!  It was fun to write it once I actually could, and I got to use a story my dad likes to tell about me when I was very little, so give her a read 🙂

I was discussing the ALS Ice Bucket Challenge with @RidgeBackRogue, who also has ME, a few weeks ago and wondered out loud what we could do for ME that would be similar.  One of the problems with the Ice Bucket Challenge is that people with severe ME would never be able to do it; they can barely tolerate light, let alone ice-cold water.  It would be uncomfortable and a little harmful even for me, and I’m just moderate. We wanted it to be something that anyone of nearly any health level could do.

She immediately came up with a great idea: The ME Movie and Chocolate Challenge!  Guess how it works.  Within 1 week of being challenged, you must watch any movie of your liking while eating something with chocolate!  We’re pretty forgiving here, so if you don’t care for chocolate, you could substitute whatever you like best.  Then you donate the average price of a movie ticket to an ME charity – I like the Microbe Discovery Project for the US and RidgeBackRogue suggests Invest In ME for UK residents!

And while those with the most, most severe form of ME still wouldn’t be able to participate, the poor souls, this is accessible to people of a wider range of the health spectrum.

So that’s it!  I’ll be doing my ME Movie and Chocolate Challenge over the next week… what should I watch?  If I had to pick right now, I’d probably go with Cloud Atlas, The Green Mile or In Bruges… or just a bunch of episodes of Breaking Bad, True Detective or Rectify; enough to make up a movie’s-length of time.  I don’t see how I can go wrong with any of those choices!

Would anyone like to volunteer to be next?  Extra karma points to you if you do 🙂

In Between Awake And Asleep - this is what I plan on doing for the next week; magically hovering over the bed.  Or maybe I'll deign to actually lay in bed.  With PJs that are actually comfortable.  And sleep.  That all sounds better.

In Between Awake And Asleep – this is what I plan on doing for the next week; magically hovering over the bed. Or maybe I’ll deign to actually lay in bed. With PJs that are actually comfortable. And sleep. That all sounds better.

 

 

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