Update

Oh hey blog, long time no see.

I’m still working on a follow-up post to that last one. In the meantime, here’s what’s going on with me:

-Working with my urologist to see if my congenital kidney issue is in fact getting worse. After 2 imaging tests, it turns out it’s not getting worse…yet. Just another fun condition that I have to keep monitoring for the rest of my life and will possibly require surgery at some nebulous time in the future.

-Trying to find a mental health provider that is familiar with SPD/ASD in adults AND takes Medicaid (I anticipate this taking a while).

-Continuing with my occupational therapy for SPD.

-Working with my GP to find out if my sound sensitivity has a physical cause versus a neurological cause. Her preliminary diagnosis is Eustachian Tube Dysfunction (i.e. I have fluid buildup behind my eardrums), but a referral to an ENT/audiologist will give me some more details.

-Tutoring 3 students until the end of the school year, 2 in high school and 1 in middle school. Pay and hours are crap, but it pays the student loans and prevents the dreaded “resume gap”. And I guess it’s also good for experience in general. So, it’s something.

-Trying to incorporate all the changes my OT and I come up with consistently in every day life (transitioning into me cooking dinner instead of my fiance more often has been very helpful).

-Volunteering at my sensory processing therapy center and at the library.

-Job shadowing various PT/OT clinics and researching PT/OT graduate programs.

-Listing out other potential career choices, keeping in mind my sensory needs.

-Coming up with other activities that are productive (i.e. not Facebook) but don’t aggravate my physical issues (bye bye knitting, it was nice for the 15 years it lasted).

-Learning to advocate for my sensory needs in all variety of situations (such a constant, delicate balancing act).

-Joined the Autistic Gaming Initiative, despite knowing next to nothing about Twitch/streaming video games in general. The community has been very supportive so far, and even though it’s a learning curve to get started, it’s one that I’m looking forward to (I suppose caring greatly about the cause probably helps).

Most of the time, even though I know that I’m doing what’s best for me and my body, progress feels agonizingly slow. My OT says that this is actually a good thing. If I were to make sweeping, dramatic changes, it’s very likely that they wouldn’t stick long-term. That’s just not how the brain works. The key to making significant life changes as an adult with SPD is small, incremental steps. When I take the time to actually sit down and think about it, I really have made some tremendous progress. It’s just been over the last 3, 6, even 12 months. It’s easy to be blind to the progress we make when it happens slowly.

So, that’s where I am at the moment. Still feels like I’m on a crazy roller coaster about to be launched out of my seat any second, but at least I’ve ridden it a few times now so I know where the particularly wild sections are and can tighten my grip in those spots.

Update

IUD Removal

This is part 1 of a write-up of my experiences with a little-studied women’s health issue not commonly seen in the media, but I think is more common than we realize.

I originally wrote this post not too long after this experience over a year ago around February 2016. It is intensely personal, sometimes graphic, and absolutely necessary for me to share. I think many women experience something similar at some point in their lives, but are too ashamed to talk about it. Breaking the taboo starts with sharing…as scary as that is for me.

*deep breath*

Content note for…description of painful medical procedures? Not sure exactly what to put here, but I do get detailed in describing my intense sensory reactions to the procedure.

–begin original post–

CAN YOU JUST. PLEASE. SLOW. THE FUCK. DOWN. AS YOU ARE SHOVING. YOUR FINGERS. AND THEN THE LARGEST SPECULUM YOU HAVE. INTO. MY. SNATCH!!!

Goddammit, I hate the gynecologist.

There is much more to this story. It will be added later once words fully come back.

Update:

So. Let’s start from the beginning shall we? This is gonna be a long post.

I had a Mirena IUD inserted in September of 2014. It hurt, but I was expecting that, and the cramping in the few months following was the worst I’d ever experienced (4 ibuprofen at a time 2-3 times a day), but again I expected it. The 3-month follow-up appointment went fine, my periods mostly stopped (I just had light irregular spotting), and the cramping eventually…mostly subsided. However, they persisted. This was weird. On the pill, my cramps were much better, so in theory the hormonal IUD should have had the same effect. But there was another weird thing going on: The cramping seemed unrelated to my period and more related to my bowel movements.

I know, gross and TMI. But, I’ve had BM issues my entire life, and so I’m very attuned to that part of my bodily functions. Every morning, I take a probiotic supplement along with a hi-fiber protein powder to keep me regular (I mix it with rice milk. The fiance refers to it as “sewer sludge” since it doesn’t really dissolve well and has this sickly greenish tint). However, I also developed a need to drink a cup of coffee in the morning to prevent myself from falling asleep on the drive in to work. I noticed that this, in combination with my sewer sludge routine, would cause some colon spasms and cramping. So I started taking my sewer sludge in the evening with dinner, thinking that would help. Not so much. Last December, I finally got fed up enough with popping ibuprofen nearly every day and just decided I wanted the damn IUD out.

I go in to the Planned Parenthood clinic where I had it put in, and we discovered that my strings were gone. The nurse told me that I should make an appointment at another clinic for an intravaginal ultrasound to make sure that it was placed correctly and not perforated (she emphasized that this was unlikely, but if it wasn’t positioned correctly it wouldn’t be effective as birth control and I would need to use backup). I wanted to get this taken care of NOW, so I immediately started calling all the places on the list of referrals she gave me. The only place that could get me in within a week was the huge university hospital all the way across the city. But, I was desperate, so I made the appointment and took the afternoon off work. The ultrasound itself was basically painless, in fact it was kind of cool because there was a TV set up so I could see the whole thing. The technician tells me that they’ll send the official results to my doctor I provided on my intake sheet in a couple of weeks, but that unofficially the radiologist thought that everything looked okay.

I leave a few days later to spend 9 days over Christmas with the future in-laws and try not to think about it too much. Fast forward another few weeks and I still haven’t heard anything. Huh. Probably should call in and get this taken care of. So, first I call Planned Parenthood again to make an appointment for removal. I very specifically tell the girl on the phone that there are no strings and ask how that will affect the removal process. She assures me that that’s no problem, and schedules me at my normal clinic. When I tell them this at my appointment, they tell me that she was incorrect and that I will need an ultrasound guided removal, which is only possible at the main clinic across town. So, another appointment scheduled, another day to be taken off work.

I decide to try and find another clinic that can do the removal. I start calling places near where I work since there appears to be nothing close to where I live. I get lucky and find a clinic about 10 minutes from my job. So, I go through the same process: Call for an IUD removal, ask if they can do ultrasound guided removal (they can!), tell them I have no strings and I’d like an appointment ASAP. At this point, I shouldn’t have been surprised that when I arrived, I was informed by the nurse that ultrasound removals are only performed on Wednesdays and Thursdays when a physician is present, and I will need to reschedule. However, she treats me for bacterial vaginosis (for which I was completely asymptomatic until she tried to insert the speculum, at which point I experienced a stronger-than-usual burning sensation-more on that in part 2-and she noticed angry, inflamed tissue), and helps me make an appointment for the following week after the infection has cleared up.

This is the part where I’m about to get very descriptive with my sensory experience. Proceed as you see fit.

I arrived for my appointment fully expecting it to be uncomfortable and painful. The intake technician was very nice and did her best to answer my questions. Then, the nurse practitioner breezed in. I could tell immediately that this was probably going to be worse than I expected. Her manner was not rude, but definitely brusque; the type of person that likes to get in, get it done, and get out. At one point I told her that a smaller speculum would probably be best, and she switched to that condescendingly smug tone I’m so used to hearing from doctors and informed me that she would have to use the largest one she had in order to try to make the removal as easy as possible (I was visibly agitated and nervous about this). Crap. I know from experience what that tone means (lots of pain for me). She tells me that she will try to remove it without the ultrasound first as that will be much easier, but fires up the machine just in case it’s needed. She tells me that she’s going to perform an initial exam of my uterus to get and idea of the placement. Now, I’ve had my fair share of latex-gloved fingers up my hoo-ha, but good god this woman. First off, she goes way too fast and gives me no warning for when they’re going in. I immediately gasp and clamp up (my typical reaction to this sort of thing), and she starts telling me in that same condescendingly smug tone to “slow [my] breathing” and “relax”. At this point I’m heading very quickly to sensory overload and my anxiety is through the roof. Forget calm, I’m about to scream.

She finishes her exam and decides to bring in my intake technician in case she needs an extra hand. I manage to mumblingly ask if she can go a bit slower, to which her response is a condescending “I’ll try.” The technician comes over to let me hold her hand (god bless this woman, I may have had a fit if she hadn’t been there). The nurse inserts the speculum in the same way as the glove exam: Fast, and with much obvious pain and discomfort on my end, followed by condescending words from her. Now I’m crushing the poor technicians hand and tears are streaming down my face through tightly-clenched eyes. I feel a hard, deep pinch, give a loud “OUCH!”, and the nurse exclaims “I got it! Look, it’s right here!” She keeps berating me to look at it, so I manage to crack open one of my eyes and I see this hazy T-shaped thing dangling from the end of her forceps. I manage a weak nod in solidarity. Meanwhile, the technician is clearly distressed at my level of anxiety, and is doing anything she can to comfort me. I think she felt a little out of her league, but damned if she didn’t try her hardest.

I should have thanked her more.

I should probably mention that at this point I’ve lost words. I’m just sitting there still holding the technician’s hand and focusing on controlling my breathing and alleviating the unpleasant tingling sensation that has spread through my arms and legs and up my neck into my face (WTF, I’ve never experienced that before??!!). The nurse is babbling about something, but she then looks at me for the first time since the removal and finally seems visibly upset at my agitated state (I’ll admit this made me happy), and tries to adopt a more caring tone. She keeps asking if I’m okay as she cleans up, and I manage to hand signal to the technician that I just need 5 minutes. The damn nurse keeps touching me, in an attempt at reassurance, but it’s only making things worse. Words come back after a few agonizing minutes, and I manage to squeak out that I’ll be fine, I just really don’t like being touched. The nurse TOUCHES me one last time and tells me to take my time and to come up front when I’m ready. I shakily put my clothes back on after a couple more minutes and manage to make it out to the checkout area. As I’m leaving the clinic, I’m just so relieved that the damn thing’s out that it helps me calm down enough to be able to drive home.

That was a hard few paragraphs to write for me. But I think it’s important to document what happened so I (and maybe others) can learn from this. For the record, I don’t hold it against the clinic. I’ve met my fair share of doctors and nurses with this manner. However, I think I’ll be more forthcoming in finding a doctor from now on that’s willing to accommodate my sensory needs. Because I’m just so tired of being in pain.

–end original post–

There is a bright side to this. Part 2 will be about my ongoing recovery, from a physical and sensory perspective.

IUD Removal

And Then I Have a Bad Week

After that last cracker of a post, would you believe I felt like doing nothing but crying most of the day last Monday? I mostly did just that, though while doing various things around the house that needed doing. Crying being one of them.

I’m teetering on the edge of the Overwhelmed Cliffs most of the time these days, but I don’t usually cry unless I topple over the edge. For me, crying comes at the end of a long chain of events and feelings that I don’t/can’t identify, and then there’s that final tiny push that’s just too much. In this case, I think the tiny push was completing my application to work as a page at the local library.

Now, I’ve worked in libraries before, in high school and college, and my mom’s a librarian who will be retiring next year with nearly 4 decades working in the same position. I think it will be a great fit for me at this point, as it’s part time and it will allow me the time I need to go to all of my medical appointments in the near future. It’s also moderate physical work, which works perfectly for me as sitting at a desk all day is equally as difficult as hard, physical labor (both of which I know from experience).

What I’m trying to say is, I’m no stranger to library work.

And yet it made me feel awful to fill out that application.

Okay, back up, try to identify the feelings that were happening before the tiny push. Go slowly, link by link.

Well, for one thing, HOLY CRAP I NEED AN INCOME BECAUSE I NEED TO PAY MEDICAL BILLS BUT I CAN’T WORK THE SAME TYPES OF JOBS AND HOURS THAT I USED TO BECAUSE OF SAID MEDICAL ISSUES AND MY FAMILY WON’T LET ME FREELOAD FOREVER AS THEY’RE FOND OF REMINDING ME WHEN I ASK FOR MONEY!

O…kay.

ALSO I NEED INSURANCE BUT CAN’T AFFORD OPEN MARKET OR GETTING MARRIED AND ADDING ME ON TO HUSBAND’S PLAN.

Well, on paper you’re a low-income single woman, so you’d probably qualify for Medicaid. You should fill out an application.

NEVER DONE THAT BEFORE, COMPLICATED GOVERNMENT PAPERWORK, WHAT IF I FILL IT OUT WRONG AND EVEN IF I DO GET APPROVED WILL I CONSTANTLY HAVE TO PROVE THAT I’M ELIGIBLE AND WHAT IF THEY THINK I’M LYING AND TAKE IT AWAY AND I KNOW SOME MEDICAL PROVIDERS WON’T TAKE IT AND WHAT IF I NEED TO FIND NEW DOCTORS WHEN I’VE ALREADY SPENT SO MUCH TIME AND EFFORT FINDING THESE DOCTORS THAT I LIKE AND WHAT IF-WHAT IF-WHAT IF-

Stop.

This is what catastrophizing looks like, and it’s so hard to explain to people. It’s often an invisible struggle, and putting it into words is hard to do without sounding whiny or just plain crazy. I know that some of those things won’t happen. I know that I just need to start the process and take things one step at a time. Knowing these things doesn’t negate the feelings slowly building up, link by link, until one little push is all it takes to crash to the bottom.

Neurotypical people do this too, but it often is not as disabling. Autistic/depressed people are more likely to fall off the catastrophe cliff due to our tendency to think in black-and-white (and also our tendency to perseverate on a single topic for extended periods). Developing the skills to overcome this takes time, effort, and probably some professional help. It’s not something that can be just willed away; you have to completely change your thought/emotional patterns.

For now, this is what I live with at least once per week. Until I can get a better handle on my sensory issues, which I’m hoping to hear about next week at my follow-up at STAR, the emotional/behavioral side of things will have to wait.

UPDATE: I started this post last week, and am just now getting around to publishing it. I have an appointment next week to take to a Health Care Assistant that specializes in finding health plans that are affordable and will cover unique needs, such as mine. From the brief phone conversation we had, it sounds like I’ll be on Medicaid for the time being (I did try to start the online process but CHRIST is it confusing). I also met with the OT at STAR for my SPD evaluation follow-up, and there were definitely some interesting things in it. Working on a post about it now, might have to break it up into a series (my first series-post??! That could be exciting).

And Then I Have a Bad Week

I CAN PLAY THE HANDBELLS AGAIN!

ICANPLAYHANDBELLSAGAINICANPLAYHANDBELLSAGAINICANPLAYHAND-

You have no idea what I’m talking about.

Hooooookay, I’ll back up and explain (but seriously, I CAN PLAY HANDBELLS AGAIN!).

I’ve been playing the handbells on and off since I was in middle school, along with many other musical endeavors. My favorite bells to ring are the lower ones, which may surprise folks due to my slim stature. Prior to all the issues I’ve had with my right hand, this was no problem. Plus, I just love subverting stereotypes at every possible chance (like working manufacturing jobs until recently).

Last fall, I decided to audition for a local ensemble as I knew a couple of ringers in it already and I had substituted at rehearsals a couple of times prior. Plus I was excited to try out for an ensemble that I thought would push my ringing skills. I was worried about my hand issues, but I had nothing to fear. There are a variety of ringers in the group with a variety of restrictions in terms of what bells they are able to ring, so our director is very accustomed to accommodating everyone’s needs (and it usually works out pretty well). I was put on the smallest bells for a majority of our Christmas program, but that wasn’t without its challenges.

In our group, the upper bell ringers are expected to ring octaves when called for in the music using a technique called shelley ringing. This means that you have two bells in one hand. This was no problem for my left hand, but because of the way you have to rotate your hand to ring this technique, and the added strain on the fingers, I was unable to do it with my right. Fortunately, other ringers in the group were able to help and fill in the gaps when they were not ringing their own bells. It required a bit of coordination, but we were able to pull it off for the first part of the season.

Fast-forward to November, and I’m getting ready to have hand surgery the day before Thanksgiving. We’ve just played a concert on the 10th, and are rehearsing for our busy December schedule. My doctor assures me that I will be fully recovered from the surgery in 2 weeks, no therapy needed, in time for our first concert on the 11th. Just to be safe, since I’ve been having hand problems for so long, she wants me to keep the bandages on for a week rather than the usual 3 days.

The bandages come off and my hand is frozen. I mean, I can barely move it in any direction without excruciating pain. I’m thoroughly bruised from my top knuckles all the way down to the middle of my forearm. I can’t even form a full grip, the tendons in all of my fingers have tightened so much. And it’s not getting better as the days tick by. Then, three days before the concert, my thumb tendon starts acting up and I can barely hold a pen long enough to sign my signature, let alone a handbell. I am panicking.

Fortunately, this handbell ensemble is full of wonderful, talented people. On the fly, they step in to help me where they can by taking on some of my right-handed ringing, and I fill in the rest when I can and use mallets when it’s too much. It doesn’t sound great, but the notes are there. I’m disappointed and frustrated, and feel like I’ve really let the group down.

After our last December concert, I finally get in to see my hand therapist, and begin twice-weekly torture sess-I mean, therapy sessions. I’ve been through hand therapy before, but holy crap this is brutal. The main problem is this massive mound of scar tissue that’s formed on the incision site, locking up major tendons and nerves and inhibiting joint mobility. The only cure for that is manual manipulation, or “massage”, but not the fun kind of massage. I sit there, squirming in my seat, trying not to scream, remembering to breathe (heavily and loudly), while she twists and pushes and pulls on the frozen tissue. I have stretches and manipulations to do at home in between sessions

Already, after just a few weeks, I can’t believe how much improvement I’ve made. My grip is mostly back, my mobility is much improved, and I have less tendon pain every day. Last week, she started me on strengthening exercises in addition to the passive stretches, that’s how much I’ve improved. I was excited to test my new abilities at our rehearsal, but it got canceled due to the snowstorm that blew in last Thursday. There was some debate as to whether or not we would still play our concert yesterday without rehearsing, but on Friday I got an email that we were gonna go for it.

During our warm-up, my hand is feeling good. I mean, zero pain. Holy crap, this is incredible. I keep it warm by doing stretches before we start. As we’re playing the concert, just for fun, I decide to try shelleying with my right hand.

It rings, clear and true, with no pain at all.

I can’t help myself. I bust out a big, goofy grin right in the middle of our concert.

I excitedly whisper to my cohorts on the next few pieces that they don’t need to ring my bells for me anymore. I can shelley again! After the concert, I’m flailing and bouncing around exclaiming that I can play again! Everyone else is excited too, because they know how much of a struggle this whole process has been for me.

Since the surgery, I’ve been using mundane, everyday things to track my progress. First time I could grip the steering wheel at the top instead of underhanded, first time I could adjust the car heater without multiple hand movements, first time I could turn the key in my house with one motion, first time I could pick up a full dinner plate without pain, etc. This, being able to play with two bells in my hand, is the biggest step of all because I couldn’t do that before the surgery. I was so scared at first when I was having so much trouble after the surgery that I had made a horrible mistake and would be permanently unable to play (or do many of the things that I love) again.

Now?

Maybe I’ll even be able to go back to playing the taiko drums again eventually (which I love so much and it has been so hard to be unable to play them).

I CAN PLAY THE HANDBELLS AGAIN!

Names Are Hard

I struggle with coming up with names for things. Over the years, I’ve found that if I just give it some time the right thing will often come to me, usually in a blaze of “AHA!” and then scrambling to find a pen and paper to write it down before I forget.

This blog was no different. I knew after reading several blogs by other autistic and disabled adults that I wanted to start my own, but I was utterly stuck on a name. Everyone else has these cool, quirky, creative names and I was shooting blanks.

Last February, I was officially diagnosed with Autism Spectrum Disorder. Things have been…a bit of a dumpster fire since then. Not because of the diagnosis so much as a cascading series of inevitable events that have happened at THE WORST possible time. Damn you, Murphy!

This Friday, I go in to the STAR Institute here in Denver for my evaluation for Sensory Processing Disorder (SPD). This has turned out to be the most troubling part of ASD for me recently. I’m hoping that the occupational therapists there can help me find some coping strategies, because shit has gotten incredibly real this year, you guys. In addition, I finally found a psychologist (who works with STAR) that I finally feel “gets” me. Umpteenth time’s the charm, right? As she put it, the occupational therapists at STAR will help me with more functional, daily living aspects of SPD, while she will help with the emotional and behavioral issues that tend to go hand-in-hand with it. She’s not fully on board with the ASD diagnosis, but in a way I think this may prove better in the long run, because she’s already seen the invisible struggles I’ve been having. She suspects that I’m “twice-gifted” with  some undiagnosed learning disabilities, specifically praxis issues (trouble with sequencing events, motor skills, etc.), possibly ADD, and possibly some non-verbal learning disabilities (she hasn’t been specific on those yet). I also suspect a form of Central Auditory Processing Disorder (CAPD), but I haven’t brought that up yet.

All of this is in addition to some physical and occupational therapy I’m already in due to various other medical issues that have just become too much to deal with.

Do I consider myself disabled? At this point, yes, though you won’t hear me say it to most people. All of my disabilities are invisible, and I just don’t feel like explaining how fully emotionally draining it is to be putting in so much effort just to function like normal. How why my 3 hand surgeries in the past 3 years have been difficult to deal with because I have to put in small amounts of effort constantly to re-think how to do things that were once instinctual. How I don’t go to the movies, live concerts, local attractions, or even sometimes friend’s houses much anymore because I have to weigh whether or not the sensory load will be too much. How I used to feel confident in putting “learns new skills quickly” on my resume, but no longer feel that that’s truthful, and now I feel there’s a monstrous hole in my skill set that I don’t know how to fill. What kind of work am I even qualified for? How do I find a job that doesn’t set off my sensory triggers so much when all of my job experience has been just that? Can I even work with all the appointments I have to schedule and go to in the coming months? There’s kind of a limit to how flexible and employer is willing to be, especially with new employees. Is there a part-time job that will even look at my resume without immediately deciding I’m over-qualified?

You’re starting to see my dilemma.

This will be a place for me to document my process, a resource for others in similar situations, and another voice in the growing community of invisible disability.

So, how do I come up with a name for that?

 

Deep breath, just open up a Word document and write what’s on your mind for now. It doesn’t even have to make sense, you’re not publishing anything yet. The name will come in time.

One of the first autistic blog articles I read was Cynthia Kim’s When Being a Good Girl is Bad for You. It was like she was in my head, narrating a movie of my childhood. I immediately began to read more of her articles in a binge session. Some of them resonated just as strongly with me; others not so much. There was a hint of myself in all of them however, and I continued my search for more.

I can’t remember exactly what I was doing when it came to me, but I had the good fortune of being at home and could easily write it down: In Plain Sight. I scribbled it in big, uneven letters and circled it several times before setting it in front of the computer. What I couldn’t pin down was an exact explanation as to why I had chosen it. It was more of a feeling than anything else, and like a typical autistic I have trouble putting feelings into words. I loved the sound of it, but I couldn’t put my finger on why.

A month or so later, I was perseverating on Musings of an Aspie once again and I came across a paragraph from this article:

As girls, we learn to hide in plain sight. We hover at the fringes of social groups, giving the impression that we have friends. We sit quietly through years of school, creating the illusion of shyness. We let older girls take us under their wings, mothering and mentoring us in the social skills that they sense we’re lacking. We learn that there are rules and we set out to master them as best we can. We learn that we have roles to play and we struggle to fill them, often at the cost of our self-esteem.

Bam. There it was, the words that I had been unable to form with my flash of insight. As a child with likely undiagnosed disabilities, as an adult with invisible disabilities, I have been subtly learning to hide my quirks and stims and blend in to normal society. To pass as neurotypical. A year and a half ago I had never heard of two of those terms in that last sentence. Now I’m slowly opening my eyes to all the ways that I have squashed and squeezed myself into this mold that I’ve constructed from arbitrary societal expectations and norms. That mold is still there, and I still sometimes try to cram myself into it despite all the self-discovery that has happened for me recently.

The difference is, now I get to choose to smash it to bits.

So, here’s to all of us that have broken our chains and revealed our true selves from behind our masks. Here’s to the shy weirdos that have learned the rules and chosen which ones to reject and which ones to keep. Here’s to us with invisible disabilities that choose to smash stigmas. Here’s to us that are living life on our terms, not on someone else’s. Here’s to the mothers and mentors that have helped us along the way.

And most importantly, here’s to those that are still forced to hide in plain sight. I’m still right there with you at times. This will always be a safe place for you, and I look forward to walking this journey together.

Names Are Hard