arthritis – A Most Unreliable Narrator

we were all waving flags

Street words on the side of a church delivery door.

Dear Internet,
This morning I cried because I couldn’t put on a pair of shoes.
The inability to put shoes on is not an uncommon thing, but it is a frustrating one. Over a year since my first surgery and six months after the second, I still unable to fit anything beyond flip-flops or Chucks on my feet, with the occasional foray into a ballet flat. This is made even more difficult as my right foot post-surgery is now an 11.5W while my left is a 10.5B.
I’ve been piecing out my shoe wardrobe to keeping only what fits or I absolutely positively love rather than keep everything. While I was never really a heel girl, even the ones I own and loved are almost useless to me at this point and into the pile they go. A recently purchased and rather expensive pair of flats I got at 75% off, talked into buying them via a beloved shoe courtier who silkily promised they most assuredly would fit, turned out to be a “thank fuck I did not buy these at full price” mistake. Several wearings indoors per their instruction and then the eventual public airing of the shoe found they were, after an hour or two, almost unbearable. How a pair of flats could cause so much issue with my feet is beyond me. I do not blame the shoe courtier for the pressure because they do fit at slip-on and comfortably so at that; I blame my feet for their rebeling at being fashionable.
My current obsession is finding a pair of dress boots that are flat heeled (more due to height than comfort) and can accommodate my tennis calves and odd feet. Boxes have been arriving from various vendors for me to try on — funny how I never thought of the shipping of shoes from Zappos and the like to Throbbing Manor to be similar to the receiving of gifts from my subjects but there you are — and again, the frustration at mismarking and advertising of wrong sizes and widths is causing more stress. Last winter, after the first surgery, TheHusband counted I had purchased and returned a dozen pairs of everyday boots before finally finding a pair by happenstance at the mall.
The crying this morning was not simply over the fact my shoes don’t fit, but more about this bottom of this often never ending and seemingly black oil pit I find myself in. Yes, it sucks I couldn’t wear my walking shoes to go on a walk and had to opt for flip-flops, but it’s not the end of the world. Yet to me, it was and also rather symbolic of everything going on in my life.
As I continue the tapering down of Lithium, in fact today is the first day I’ve been Lithium free, my moods have started shifting like a radiograph, even more rapidly in the last week. I started bawling yesterday reading Facebook and then proceeded to go into a several hour depression that quickly, and shockingly, emptied me of life. The black clouds descend so quickly and with such force, I felt powerless. TheHusband spent a couple of hours walking me through my feelings, which continue to be a catalog of everything I feel are to be truths:

Nobody loves me
Everybody hates me
I will never be happy
Everyone leaves me
I will not amount to anything
I will have never accomplished X,Y,Z
I will never have the kind of life as seen by X,Y,Z
I am too old
I am too young

This has been the same laundry list since I could remember keeping track of all of my demons.
TheHusband got me calmed and by bedtime I felt relatively able to sleep with peace. This morning however, when I woke, the black cloud was back and circling with a vengeance. Since we woke at mid-morning, the sun had been up for several hours and our bedroom was bathed in light which was even more depressing. This blinding happiness depressed me more as the idea of staying shut in all day while the day glowed like the summer. Toss up: Stay indoors and become more depressed because everyone is seemingly having some kind of life, the world looks shiny and new OR go outside, even against your will, to at least experience what it feels like. Which will hurt more?
TheHusband made the executive decision we were going to walk Wednesday and then talk a walk ourselves. Chop-chop, wash your face, put on a sports bra and let’s go. He tempted me with treats from a local bakery conveniently located around the corner from our house if we did at least a quick jaunt around the neighborhood. Instead, we found ourselves roaming farther and longer, and the quick jaunt turned into a four mile walk in flip-flops, which ended with breakfast at a local place and some Gerbera daisies for the dining room.
We made half-heartedly plans for the afternoon, but found ourselves hiding in our offices while I read and wrote and TheHusband played video games. I was also opposed to the idea of having to put on pants for some reason, but that is not a black cloud thing, that is more of a sensibilities thing. Because, well, pants.
On occasion there will be days where I’ll get a glimpse of happiness, where I know that even at the darkest hour there will be a snap and things will become stable again. That as is before, as in the future, and as is the now, I will climb out of this slick pit of despair and change something. It’s hard to remember the positive in your life, when you’ve gotten so used to the idea that happiness is fleeting. HOW DARE YOU NORMAL PEOPLE HAVE HAPPY LIVES? Which is why I cry at Facebook. And stalk some people’s lives online because I find it so fucking hard to believe someone could legitimately be happy. SURELY, they must be faking it. Or projecting it. Or something. The world is unreal, ergo, what I am seeing is also unreal.
It’s hard to remember not everyone is like me, that feelings are felt and gone so fast, their tail is often the only reminder they are there. It’s hard to remember often what I’m seeing in other people is really a projection or a sum of their life, I don’t know everything going on in their world. All I do know, their happiness reinforces my lack of having any. It’s hard to remember a trigger by something sending me into a spiral, should not be reinforced by swimming in that sea.
And even harder to remember, no matter how prickly I may be, I am not unloved.

x0x0,
Lisa

This day in Lisa-Universe in: 2003

Cabinet of Curiosities

Dear Internet,
This morning I met with my neurologist to confirm if my epilepsy has returned.
For this to make better sense, we need to go back to 1975 where Lisa, age 3, has a grand mal seizure. Over the course of the following decade, we would head to Detroit Children’s Hospital, where I was poked, prodded, and EEG’d to death to see what was the status of my brain. Drugs were taken, phenobarbital, mebaral, and lord knows what else. It is during this time it is discovered I’m allergic to the aforementioned drugs as well as penicillin.
Sometime in 1982 or 1983, the visits stop and I’m declared cured? Better? Healthy? Something? All I know is that at the age of 11 or 12, there are no more drugs or visits to Detroit’s Children’s Hospital.
In the later years, the stigma of being epileptic follows me like a lost dog. Some of my medical records have it listed and if it is missed in any kind of interview, it comes up with my drug allergies (“Why are you allergic to anti-seizure medications?” “I had seizures when I was a child.” “This could complicate things.).
It’s a shadowy grey area. Am I epileptic? Am I not? How much do I disclose when asked and do I make mention of this at all to anyone – employers, lovers, friends?
Over the years, I disclosed on when necessary and when warranted.
I did not have any seizures, that I can recall, in the intervening years.. That changed a few years ago, long before I started any of my second round of bipolar drugs, I had two of what I termed as seizure within six months of each other. One when walking through a tunnel in a fun house that had the pulsating lights and the second when watching the Kanye West video for “All of the Light”¹ .
This was in late 2011 and early 2012.
When I had the first ankle surgery in June 2012 and the follow up surgery in January 2013, the triggering EPILEPTIC on my medical history was potentially problematic with anesthesiologist.² And it was because of this that I decided to finally make an appointment with neurologist this spring, but there was nothing available for nearly six months.
Which brings us to today. I was so nervous, I showed up 25 minutes early.
I walked Dr. T. through all of my issues, matters, and concerns. After the interview, Dr. T. then put me through a series of neurological tests, which some of them made me giggle. After the tests were done, Dr. T. explained that he believes I did have epilepsy when I was younger, for there is a type where it starts out in very youngs kids and as you age, it starts to dissipate. By the time you’re late teens / early 20s, the epilepsy is gone and typically never comes back. He thinks this is what I had.
But do I have epilepsy now? Unknown. What he does think is what I thought to be seizures were actually migraines triggered by stress or other factors. Since I did not smell anything or get auras or get a build up, then I never associated with what was going on in my brain, in addition to the brain freezes (tremors, sometimes loss of feeling, sense of deja vu). I never thought of them as being migraines. This was news to me. When I told Dr. T. I didn’t take drugs for my headaches, he seemed incredulous.
What’s next? EEG to confirm the epilepsy (or not). That will be good times!
The most interesting thing out of this whole experience today was the discovery that phenobarbital and mebaral cause bone density problems. I have bones like a 90 year old, and they are so fragile at my first ankle surgery in 1994, they were surprised I had not broken anything before that. So drugs make my bones brittle, I have a double fracture in my right ankle, which then sets in arthritis that is the worst my orthopedic surgeon has ever seen.
It’s all goddamned connected.
Dr. T. is also ordering a bone density test and then depending on the results, vitamin therapy will be applied.
Can I get a new brain please?
xoxo,
Lisa

This day in Lisa-Universe in:

1. The video was tagged by Epilepsy Action to potentially trigger seizures and I ignored the warning.
2. My neurologist says this is a teaching moment – anesthesia does not trigger seizures so riling me up before the surgery was unnecessary.

Those who fight alone, good warrior

Dear Internet,
I’ve been remiss in keeping you up to date on what has been going on with me these last few weeks, primarily with the outcome of my surgery. When we last spoke, I was six weeks into to my lay up. A week later, the doctor gave me the all clear to walk, perchance to drive when I could, and also I was freed to work. Physical therapy to immediately start. There are conditions, of course, the main one that I am to be kept sedentary at all times and to ice my ankle as much as possible. Thus, if I drive, the ankle gets iced after driving. If I walk, I need to take my cane with me. If I work, I have to be always sitting which means no teaching. That later is huge as teaching is a huge part of what I do. I’m on restricted work hours in order to ramp up to going back full time and I often find that driving the short distance, walking to my office, working for a few hours and then back home is always exhausting to me.
While everything professionally is neat and tidy, emotionally I’m still a giant mess. Frustration, and rage, rue most of my days. I drive for long periods, I’m laid up for days. Trips to the grocery store have to be split into multiple trips because I cannot physically handle doing it all in one go. I walked up and down three flights of stairs the other day without pain but my ankle was swollen to the size of grapefruit and I had to ice it for two days straight.
Thursday marked ten weeks since the surgery and I’m nowhere where I physically thought I would be. I asked my physical therapist about training for a 5K or even a walk-a-thon and she laughed at me. Genuinely laughed. Next spring if I’m lucky. Next fall if I’m not.
It’s interesting to me when people comment on my lack of full mobility in that they always comment as if it is an age thing; that my slowness to heal is because I’m getting older. I’m always feel like I’m on the defense about this, because no, I healed slow last time this happened, over 18 years ago. I have brittle bones. I smoked for ages. The surgery was much more intense then they thought. There is a myriad of things as to why I’m not training for Dancing With the Stars right now.
I’m always, always sensitive about my age. I succumbed a few weeks ago and bought bottle dye (forgive me divine hairdresser!) as I could not afford my regular appointment since I was off all summer. My hair was a jumble of colors, over seven hues and shades from greys, reds, browns, blondes, and whatever else lurked under its depths. I do not look my age, sure, but once the dye was applied and rinsed, I effectively created a facade to hold against time temporarily all over again. The nurses at the surgery center kept arguing with me that my band with my age was a typo – I could not have possibly been born in 1972. Moisturize, moisturize, moisturize. (It is as if I am Cassandra!)
But I digress.
My body’s slow progression is temporary, I know this. A year from now I will be mainly free from pain, will be running, biking, and walking with the best of them and this will all be a distant memory. I know. I choose to do this to myself. There was no accident, no repair, there was only the choice of continue living in great pain or get better.
I choose to get better.
TTFN,
Lisa

The Hours (6 Weeks and Counting)

Dear Internet,
Thursday marked the six-week anniversary of my lay up (lay in?).
When TheHusband and I started discussing what exactly the surgery was going to entail, I genuinely thought I would be laid up for 2 weeks of bed rest and than have a walking boot for another 4-6 weeks, then physical therapy as prescribed. I thought I would be back to work by mid-July.
At the two-week follow-up, 30+ staples were removed (20 on the interior incision, 10 on the exterior incision, and 6 on the fascia incision. I went from this to this (go Hammers!). I was told to remain 0% weight baring and due to the nature of my job, was off of work for the another five weeks.
Three weeks after plaster cast was placed, I started getting a lot of irritation inside the cast, against the incision. With two weeks more left before I could go back for the next followup, the irritation may not be able to wait, so I called and was immediately seen. When they took the cast off, which due to how ticklish I am had me laughing like a loon, this is what greeted us. The MA said that we caught the pending infection in time, for if I had waited, things could have been a lot worse.
Because they were planning on putting me in the walking cast in the appointment two weeks out, it was decided that I would get the walking cast now instead of another plaster case, on the condition that I would remain 0% weight bearing. They would also load me up on antibiotics to stave off any infection cooties. As I was to continue to be 0% weight bearing, work would still continue to be out of the question. The advantage this time around was that instead of having a plaster case that weighed 5 lbs, I would be wrapping my ankle in dry dressing twice a day and wear the walking cast boot. My foot and lower half of my leg could have freedom, but I could not shave my leg. If you look closely in some of the more recent pictures, you could see the inches long hair on the top of my feet. I could now wash my foot in the shower, instead of wrapping the leg in a garbage bag as I was doing before and I could put lotion on my toes to ward off the dehydration that was occurring from lack of moisture.
So six weeks of near complete bed rest; the number of times I’ve left the house can be counted on one hand and the number of times I’ve gone down the stairs wouldn’t be that much more. I started the convalescence before the beginning of one of the hottest summers on records and for every small break we’ve gotten in the heat, I’ve cracked the windows open and gulped the fresh air like a person long deprived.
We found that any small movement could and would disrupt the healing process, like sitting upright in a chair longer then a few hours or wearing the walking boot, which fitted while the leg was swollen and caused undue pressure. I’ve spent much of my time in bed, my leg propped at varying degrees, all my electronics spread around me, a TV in front of me, and pretended I was some modern version of Rear Window. This has been Wednesday’s position for almost the entire time.
I had set up loads of plans to keep myself occupied while I was laid up: Watch a TV series I haven’t seen (or haven’t seen in forever) and write about each episode, finish my cross-stitching (I got a total of two letters added), do some knitting, work on research for a writing project, catch up on professional interests; the list was endless.
And I’ve done almost none of that.
[to be continued]
ttfn,
Lisa

Tragedy in the style of the Greeks

Dear Internet,
I’m deeply sorry for the last month of silence. It was not fair to you, to me, or to the dozens of wonderful people who have reached out to me. I have a fairly good reason for at least half of that time:

If you’ve been following me around the social spheres, I talked about this surgery quit a bit in which I opted to have the arthritis and bone chips literally chipped away from my right ankle and the tendon in my right calf cut and lengthened. The original injury occurred in December of 1994, when in the throes of exam week, I slipped and fell on the ice glossed driveway at my parent’s house. This ice aerobics gave me a double fracture and a dislocation in my right ankle, later binded by 12 pins and a plate. When the pins and plate came out, the doctors told me at 22 that I would have fairly severe arthritis. I laughed. By the time I turned 30, the arthritis started making its introductions to my body and by the time I was 35, was becoming a roommate in the vein of single white female.
Continue reading “Tragedy in the style of the Greeks”

on arthritis

I’m gonna drop a little back history for those of you in the know:
In 1994, I slipped and fell on my parents driveway, giving myself a dislocation and a double fracture. I ended up with 12 pins and a plate inserted. Since then, I’ve had fairly minor trouble, and it wasn’t until last year when Kethryvis came to visit and I could barely walk half way while she was here because the swelling and the pain was so terrible that i had to keep my leg elevated for most of her trip. Off to the docs i went to find that the ankle itself was fine and dandy, but what I had was Osteopathic Arthritis and well that’s when hell kicked in.
It was like when you find out something, it intensifies. My hands (I’ve sliced off my left pinky, sliced open my right palm), my knees (busted both open).