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17th October 2017



Today marks 5 weeks since my surgery.

(Me pre-op just as they were wheeling me away and at my first therapy appointment)

It’s been a long 5 weeks, full of pain and swelling, and lots of physical therapy and manipulation and stretching and disappointments and hurdles. The surgery went well – I had conscious sedation and a modified peripheral nerve block, which made for so much easier of a recovery. I was groggy for a couple of hours, slept in recovery for a bit, and then went home almost feeling like normal. The surgeon reported that he got full range of motion of my fingers in the OR after making incisions and cutting across the joint capsules, but he warned that it was going to be a constant fight against scar tissue formation and I was instructed to start moving my fingers pretty much instantly, which stressed me out so much in the recovery phase, as I had so much pain but was panicky that I wasn’t doing enough. I saw the physical therapist two days later, and was given a list of exercises to do, which felt so discouraging, but I persevered and little by little, I could move my fingers again.

The first week was painful and swollen; the second week was a dream. My fingers felt like butter. Nearly all of the stiffness was gone and with the range of motion activities, things felt so good, with the exception of swelling and tenderness. And then the scar tissue started to build up, and by the end of that week, I had lost 10+ degrees of motion. It’s been challenging since then.

I’m so much better than I was before the surgery. Before surgery, this was the best passive range of motion that I could do, without heat:

With some heat, I could get nearly a fist, but I could never get my ring finger to touch my palm. I went through my physical therapy records and compared my range of motion, because I like numbers and data:

AROM 10/24/16 11/4/16 11/18/16 11/18/16 s/p paraffin tape 12/5/16 12/21/16 1/3/17 1/18/17
Ring MCP 40 45 50 50 50 55 55 60
PIP 40 55 60 65 55 60 60 60
DIP 30 35 45 55 60 65 65 65
Total flexion 110 135 155 170 165 180 180 185
Small MCP 40 50 45 50 50 55 55 50
PIP 25 50 55 65 75 75 70 75
DIP 35 40 60 60 65 65 75 75
Total flexion 100 140 160 175 190 195 200 200
(MCP=metacarpophalangeal joint (aka the finger to the palm joint), PIP=proximal interphalangeal joint, DIP= distal interphalangeal joint (the tip of the finger)) (Numbers are degrees of flexion – 90 is roughly normal)

The first date is the first time I was able to see physical therapy, nearly 6 weeks after my injury. The last is the best measurements I ever got (I continued to see the therapist for another month, but we didn’t take measurements), which took extensive heat therapy – and I couldn’t maintain it for more than ~ 15 minutes. And after my second injury, when I broke my finger and didn’t know it, my range of motion became even more limited. By the time I saw the surgeon, I could only get 20 degrees of flexion at the small MCP, even worse than when I was first injured.

Here’s the numbers post-op, including today!

AROM 9/14/2017  9/20/2017  9/29/2017  10/3/2017 10/10/2017 10/17/2017
Ring    MCP 40 60 53 55 55 60
           PIP 45 70 71 80 75 80
           DIP 60 56 65 60 70 80
Total flexion 145 185 190 195 200 220
Small  MCP 25 66 55 50 50 60
           PIP 50 60 70 85 85 80
           DIP 65 78 80 70 85 85
Total flexion 140 205 205 205 220 225

And this is what my hand looks like tonight:

I can just barely touch my ring finger to my palm (there’s a small bone growth there that I’m pretty sure is impeding a little – I tried to get my surgeon to take it out at the time of surgery to no avail) and I have difficulty completely extending my ring finger too, but that is a damn fine fist, if I do say so myself. There’s still stiffness, especially in the morning or if I haven’t used it in an hour or so, but I can break through it easier. My hand no longer feels like I’m trying to bend a steel rod like it did before. I still have pain, especially in the bases, and the incisions are starting to tighten up. I saw my surgeon yesterday, who was overall satisfied with how things are going, but suspects that I will always have some stiffness and will probably not get full range of motion, but we won’t know until about the 6 month mark.

My incisions won’t be tiny – they spread a little because of all of the active movements that I had to do (and there were a couple of spots that I noticed that should have had a stitch in between), but they shouldn’t be too noticeable either.

I do several hours of therapy a day – wrapping it in heat, stretching and mobilization, finger bends and taping a fist, massaging the scars. It’s been such a joy working in the ICU while trying to find time to do the exercises. It’s still painful to put on gloves and I haven’t dared let any one shake my hand yet. I have several braces that I wear now; every time I see the therapists, she gives me a new toy. This is my current collection:

When I injured my hand, I realized that I had never consciously taken a picture of my hand before – I’ve lived my entire life embarrassed about my bone condition, trying to minimize it as much as possible, not draw attention to it, and in so many ways, I minimized its impact to my life as well. I remember in college, being so shocked when my doctor wrote in my medical chart that I had severe MHE – severe? Me? It’s only been in this last year, that I’ve been able to acknowledge that I have a disability, one that I compensated for until I no longer could. But trying to ignore it, not documenting how my body worked meant that when I was injured, nobody really believed me of the severity when I tried to explain.

My hand has felt like a stranger’s for the past year – all of those things that I used to be without second thought were gone. Now, now, there’s signs of real recovery and it is such a relief. I can almost hold a pen like I used to do. I can wash my hair with all of my fingers – not as smoothly, no, but the movement is there.

I am not optimistic that things will ever be as they were before, but I think that there’s a good chance for function and I’ll take that.

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5th September 2017

health update

I’m schedule for surgery for “capsulotomies” on Tuesday. Tuesday September 12th. Because I called today to ask why I hadn’t heard back (*SIGH*) and the availabilities was either December 5th or a week from today.

I hadn’t even had a chance to reach out to the tumor orthopedic here because my weekend was so so busy. I emailed him tonight (I hate these kinds of emails, ugh). I don’t know if he’ll have time to see me or if he’ll have any recommendations. I worry that I’m doing the surgery too fast without considering options. I’m worried that I’ve taken too long already.

My sister has been with my parents for most of the summer – she and my mom are going to drive back this weekend so they can be there for my recovery. If they can make it because the entire state is on fire.

I’m teaching the med students this week – I taught the neuro exam today, I’m teaching stroke subgroups tomorrow, and a lecture on coma on Friday. I’m taking stroke call Thursday night. I’m working nights on Friday, Saturday, and Sunday. I’m hosting this neurocritical care course in 3 weeks and I’m not sure we are going to have enough attendance. I’m trying to find a replacement for the week that I won’t be working because I’m going to be recovering from surgery.

I’m so stressed you guys. My anxiety is out of control and I am so sad and despondent about the state of the world and the destruction of the prettiest oasis in the country, that I feel like I’m barely holding on.

I’d really like a hug. Just a nice long, “things are going to be okay” hug while I cry and then carry on. Good wishes, thoughts, prayers and words of encouragement are desperately needed right now.

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31st August 2017


My previous ortho doctor emailed me back.

In his words: “the Venn diagram for MHE [my disease, multiple hereditary exostoses] and hand is quite limited”. He has a suggestion of a tumor ortho to see at OHSU, but more as a reestablishment, in case I need to any other surgeries and for followups (my bone growths have a small chance of transforming into cancer, whee!) but probably won’t be helpful with this situation. I’m going to be emailing him just in case. The only hand tumor specialist that he knows is a doctor in New York City, so who knows when I’d ever get an appointment to see him.

I’m still waiting to hear whether my (ridiculous, worthless) insurance company to approve the capsule surgery, 10 days later.

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30th August 2017


My previous post didn’t go to my RSS feed. Hmm. Anybody know how to troubleshot that?

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29th August 2017

broken wings

Nearly a year ago, I fell. Missed a step and went down hard on my hand and instantly couldn’t bend my fingers (I wrote about that here). The ED sutured my bleeding eyebrow, took an xray of my fingers, gave me a split to wear which I wore for a couple of days and then stopped because it hurt and wrote me a pain subscription (which I took for a couple of days but then decided that the nausea was worse than the pain, so stopped and just bore the pain). By 10 days, I knew that something was really, really wrong. I saw my primary care doctor, got an x-ray, which showed again that it wasn’t broken, and a referral to an hard orthopedic and hand physical therapy – both which were booked up and I couldn’t get an appointment to see them for a month (I’ll save my rant about people believing that it’s an issue only for socialized medicine. It’s not).

So, six weeks after I fell, I saw the ortho PA, who wasn’t sure what was going on, but thought she saw a hairline fracture (there wasn’t), and that it should get better with time, and agreed that hand therapy sounded like a good thing. I started seeing the therapist that day. I used braces to stretch my fingers and when that didn’t work, I switched to a TENS unit where I sent shocks of electricity into my skin for hours a day. I dipped my hand in wax to mold my fingers. I saw some improvement, mere 5 degrees at a time, which would last a matter of minutes and then disappear, leaving my fingers stiff and painful.

After a month, I made an appointment with hand ortho again, this time with an attending that I’ve interacted with on rare occasions. Who basically implied that it was all in my head and I wasn’t trying hard enough. It was devastating. Never mind that I have a genetic bone condition, with a legitimate reason to have pain that could be contributing. Based on his non-diagnosis, my (utterly ridiculous and waste of money, again I’ll save you the rant about socialized medicine) insurance company denied the MRI, which I didn’t find out about until after I got it (I may have written a strong email to my doctor informing him that he would be calling and get it approved that day – which his staff did). The MRI showed possible reasons for the finger stiffness but nothing clearly conclusive. My doctor never contacted me about the results, and by this point, I had so little trust in him that I wanted him nowhere near my fingers.

So I did more therapy. I met with my therapist nearly every week. I underwent “iontophoresis with dexamethasone” which is a fancy term to say that my therapist used an electric current to try to get a steroid into the soft tissues of my fingers. Pain got a little better – I could put on gloves, I could (mostly) shake hands, but movement and stiffness didn’t. And then my therapist stated that she didn’t think more sessions would help. So I continued to do it on my own. I wasn’t perfect, but I tried to do the wax treatments once or twice a day. There was one week when I wasn’t working, so I dipped it 4-5 times a day. Nothing I did really made a difference.

I knew I needed to see a new doctor, but honestly, I was really burned with the experience. I felt completely dismissed. And I just didn’t have anybody else I trusted to evaluate and likely operate on my dominant hand. And trying to navigate the system – getting referrals, collecting my medical records, getting copies of the imaging – exhausting.

So I dallied and delayed.

And then I fell again. I went to San Diego to vacation with my college girlfriends and on our first night, walking back from dinner, I stepped off the sidewalk and (I think because it happened so fast) tripped on a water sprinkler that was jutting out of the ground, and went down. It swelled up and bruised pretty much within minutes.

IMG_1274 IMG_1276

Beautiful, right? I lost every bit of progress because the pain was unbearable to even attempt to bend, and once again, it was agony shaking hands and putting on gloves.

Finally, after the swelling went down, and I started crying to a colleague, because this has been utterly depressing and devastating and I am not dealing well with it, he recommended one of the hand plastic surgeons at OHSU, so I emailed him, and managed to get set up with an appointment last week. It was a better experience – he at least took me seriously and did a full physical exam, but he was also somewhat, I don’t know, a little victim-blaming? Basically, he thinks that my joints have stiffened, because of the initial immobility (which mind you I was instructed to do, and again I couldn’t get an appointment sooner and my therapist was terrified to work with me for days), and that I should have sought him out months ago.

He proposed taking me into the OR, putting me to sleep, and then forcing my fingers to bend – and then if that doesn’t work, he’ll open me up and lyse the joint capsules. Which may or may not work but we won’t know for months afterwords. So I agreed, and have been waiting for insurance clearance to schedule it – which probably won’t happen until late October or November.

He wanted repeat xrays though. Sure, fine, whatever. I got the xrays and then went back to work (it’s awfully fun trying to break away for a doctor’s appointment when you’re on service and your entire morning was interrupted for the eclipse).

I didn’t even look at them until the next day, when I was reviewing my patients’ images right before I went to bed. I actually read the report first, because I’ve already stared at my fingers a year ago looking for something wrong and didn’t think that it was going to show something new.

Screen Shot 2017-08-22 at 10.20.22 PM Screen Shot 2017-08-22 at 10.21.10 PM

Can you see it? The fracture at the base of my little finger, slightly displaced and extending into the joint. And at this point is over two months old and likely healed out of place. The fracture that I didn’t even know I had because why would this fall be any different than the last one?

(You can also see my shortened ring finger due to the short bone in my palm, and then many little bumps which are all of the bone growths that I have from my bone disease).

I broke down at work four times the next day, to colleagues that had known about my appointment and had asked how it had gone. I was a mess – honestly, I still am.

I emailed my new doctor, who felt that the treatment for the fracture (which would involve rebreaking it and putting pins in it) would be the exact opposite of what I needed to treat the joints and the stiffness, but again, he won’t know until after I’ve undergone the surgery of whether or not the fracture will interfere with my joint being able to bend.

So I’ve screwed myself over in so many ways and I may never have function of my fingers again.

I think one of the most frustrating aspects of this all, well, besides just the overall awfulness of having a hand not function properly, has been that I have been utterly without resources. In Utah, I had trusted doctors, who when they said I needed surgery or didn’t, I could take them at their word. They knew me, they knew my disease and how it manifested. And here, I’m seeing surgeons who have a passing familiarity with my disease. They aren’t even considering it as being a factor.

I emailed my old surgeon in Utah today, poured out my story in as few words as possible and asked him for a referral, either here or back in Utah (he’s not a hand surgeon. Hands are tricky and small and delicate). I don’t know if he’ll respond. I don’t know if it’ll make a difference.

I’m nervous about the surgery. I’m nervous that the surgeon will put me to sleep and my fingers will just move when they are relaxed and under a neuromuscular blocker and he’ll think that we’ve fixed the problem. I’m nervous that he’ll do the surgery and the fracture really will impact movement and I’ve just caused myself a whole lot of pain for nothing. I’m nervous that the little bone growths really are at the heart of all of this and nobody knows enough to fully evaluate it. I’m nervous that I’ll do all of this and it won’t do anything. I’m angry with myself, for not getting that xray after the second fall (it felt just like the first), for getting myself into this situation. I’m scared that I’m going to have a minimally functioning hand for the next 40 years of my life and what that is going to mean.

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4th May 2017

dig the grave


It passed.

The amoral, atrocious, vindictive, abomination of a bill passed the house today. The more I read about it, the more I am horrified. Truly horrified. The media has been focusing on the pre-existing conditions clause, but what has made my soul ache is the complete destruction of Medicaid and the loss of $880 billion in funding. $880 billion. The fact that every single medical society, every single healthcare advocacy group decried it should have meant that they considered the ramifications and had a thoughtful, careful approach to it. But I overestimated their moral conscience.

I’m enflamed and outraged. I am also terribly depressed and worried. I’m not comforted by knowing that it has to go through the Senate, as everybody keeps saying. All this revealed is how much our voices are ignored. I hope that this really does bring change at the midterm elections – but it didn’t when the republicans shut down the government for weeks so I don’t know why this would be different.

A few years ago, I was really into politics – I read about how the Supreme Court worked, I followed different bills and lawsuits, etc. A colleague of mine suggested getting involved in the AAN (American Academy of Neurology), as they have some political leadership courses and I could get involved in advocacy. And 4 months into this presidency and all of those kinds of thoughts have vanished. I’m tired and the thought of getting involved more… I hear that this has encouraged many people of the democratic party to seek office, and boy do I wish them well, and sort of wish it was me, mixed with gratitude that it’s not.

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3rd May 2017

in the red

I met with my department’s financial administrator today. A year or so ago, my division suddenly had a shortage in our budget, which has meant a year of trying to figure out why. So, in response, I took over in understanding our numbers and working as a liaison with the financial administrator. I’ve spent hours trying to figure out why, met with the billing department, changed our documentation, etc. etc. And found out today that it hasn’t made much of a difference.

Working in the health care business (and not just as a health care provider), has been filled with these frustrations. I work in a academic hospital and there is still so much pressure for better billing and collections. I spend so much time writing notes, putting in accurate diagnoses, making sure that the wording is clear and detailed and it still doesn’t feel like enough.

And it’s only going to get worse with the likely repeal of the ACA, in so many ways. Patients losing insurance again and not getting the care that they need, not being able to go to the rehab centers that they need afterwards, not getting their medications – being a resident in Milwaukee when so many of my patients didn’t have insurance was a nightmare, and I can’t believe we’re going back to that. Our hospital, as pretty much every hospital in the country, has been dependent on funds from medicaid for funding, which impacts the care we can deliver and so on.

The health care debate and debacle has been so stressful that I haven’t been sleeping well again. Having absolute ignorant, greedy politicians refusing to listen to how this impact their constituents, refusing to take their time and make improvements to the system. I hate them. I utterly loath them. I am having a very heard time thinking charitable thoughts about them – and I don’t like that. Even though I’m a fairly hard left leaning person in my politics, I’m also someone who believes pretty firmly in compromise and that there could be value in some conservative values, but this is truly trying.

It’s been months since the election and I’ve had this constant pit of anxiety that never really goes away. I started seeing my therapist again because I wasn’t sleeping and was cycling into a really dark place – that’s improved, with a couple of relaxation apps. My grandfather died when my mom was 15, from a bleeding ulcer and complications related to that, but my mom will say that he worried himself to death. While I know that the two are unrelated, I wonder how much of that worrying nature I’ve inherited.

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1st May 2017

finding my voice

At a Mormon feminist retreat this weekend, one of the sessions was about narrating your story and I felt such a longing for the time when I first started this journal, and the bits of my soul that I recorded and preserved. I’ve had spurts throughout my life when I’d attempt to be a great journallingist (compared to being a journalist). In junior high, I poured out my loneliness and crushes and sins into our old computer, saved carefully on floppy disks that I no longer have access to (they’ve either been lost or can’t be opened). In college, I wrote my words in bound books, but sporadically; long, passioned descriptions of the events of my life. Once my car was broken into, and a bag containing my journal was stolen. The absence of my thoughts from that time gnaws on me to this day, more than any other valuables lost. And then gradually, I found myself here, where I opened up and shared my life to the anonymous public and then to friends and family when they discovered my blog.

There’s so many small details from the last five+ years that I have lost because my journalling petered out, memories forgotten. I try to recreate them at the end of the year, but that’s relying on vague Facebook confessions and photos taken, and there are so many holes (also I am bad about getting them done on time).

For much of the last five years, I would open up this journal and try to write, the words stuck beside my inner turmoil about so many things: my faith and how it wasn’t fitting quite right anymore, even though I desperately wanted it to; singleness and trying to adjust to a life that I never thought I’d have; imposter syndrome; anxiety over work, etc, etc. So I didn’t write and it was harder to come back and try to write.

Anyhow. With the slow destruction of LJ and the migration away of so much of fandom, I’ve been hit with nostalgia and with a need to hold on a little longer. So I’m going to try blogging again this month. Yay?

LJ apparently celebrated their 18th birthday (and then sold us all to the dictatorship next to Alaska). I haven’t been here the whole 18 years – but I was sort of shocked to see that it’s been well over a decade – this is my entire 30s and a good chunk of my 20s encapsulated here in fragmented form. No wonder I am grieving at the loss.
Screen Shot 2017-05-02 at 12.38.29 AM

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5th January 2017


Test post – checking out cross posting.

ETA: Okay, that was the sweetest thing ever. I should have switched over to dreamwidth from LJ years ago. Wrote this on my personal blog, used a plugin to cross-post to DW, which automatically cross-posted it to LJ – and the formatting preserved better!

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