Incredibly Weak Quadriceps

I’ve been struggling with knee pain and difficulty (sometimes downright impossibility) with any activities that involve putting weight on my knee while also bending it.  I can’t squat to watch my guinea pig munch on his lettuce anymore, which is possibly the cutest thing ever.  I can sometimes barely make it up and down stairs and my legs shake when I do.  A couple of times recently I’ve been faced with steep slopes and not even dared to try.

At my physical last month, my doctor told me to avoid long walks, ice my knee 2-3 times per day, and start taking diclofenac, a pain medication that she prescribed.  She scheduled me to follow up a month later, at which point I had run out of the medication and noticed a definite spike in the pain again.

I had my doctor appointment Tuesday and on Wednesday I was at the hospital starting physical therapy.  I’m falling apart so badly that the physical therapist, Alice, put me back together with kinesio tape.  After the assessment she commented that I have “incredibly weak quadriceps” which was allowing my knee caps to shift slightly to one side and rub the other bones.  Ouch.

I learned the six exercises that she started me out with, and scheduled another appointment for today.  Both Wednesday and Thursday I stared at the papers of exercise instructions, hoping that I was doing them right.  Each exercise has 3 sets of 10 reps, for each leg.  As I counted, it went like this on each set: “One, two, three, four, five, six, this sucks, this sucks, this sucks, this sucks.”  This is definitely a “things will get worse before they get better” type of situation.

At today’s appointment, Alice had me start out doing six minutes on a cross trainer.  It stung a little when around minute four she checked in on how I was doing, I mentioned getting a little tired, and she said, “That’s because you don’t like to do anything.”  I know she didn’t intend to be mean, but I almost got defensive – of course I don’t like to do anything, because it hurts and I’m scared I’m going to fall!

Next up were some exercises with parallel bars for support and a small step that is much shorter than those in a set of stairs.  Then I was back on a table doing one set of each exercise she taught me on Wednesday and having her correct my form.  Then it was over.  20 minutes.  She asked if I wanted to ice my knee while I was there, and it hurt a little, but I said I’d be okay until I got home.

I asked for advice about going to the walking trail, because I love the trail and hadn’t been going since my doctor told me not to take long walks.  I couldn’t figure out how long was too long.  Alice’s answer was that I should stop when my knee hurts.  Well, that’s logical, but if I wait until my knee hurts then I still have to turn around and walk all the way back.  She did say that I should be fine except if there’s an incline, and there is a big arching bridge a little ways down the trail, so I plan to try walking to the bridge and turning around at first.


Adventures in Imaging

I am sitting at the computer and struggling with chapter 9 of my book.  It covers over a 2-month span between major events, and despite (or maybe because of) my detailed notes I can’t pull together the minor details into stories worth telling.  I know there are stories there, but the events happened over a year ago now and there are so many other stories crowding my mind.

Naturally this means I have to do something to procrastinate.  In response to a meme on someone else’s blog the other day, I answered a question about x-rays I’d had and she said it was a lot.  I had only included actual x-rays, not other imaging tests, so I guess that means that list would seem even lengthier.

1993 or 1994, I was in my early teens and began having severe headaches.  When I finally had one that left me screaming uncontrollably in the middle of the night, my grandparents rushed me to the emergency room.  I remember nothing of this trip other than lying in the backseat as we went down the twisty road to the hospital, and being embarrassed that they took me there in my nightgown.  I don’t know whether they gave me some kind of medication or if the headache subsided on its own, but they did have us schedule some follow up testing: an MRI of my head and a carotid Doppler ultrasound which felt like they were trying to strangle me.  Nothing was ever determined about the cause of the headaches and they went away after that summer, but based on the timing I suspect they were triggered by exposure to too much chlorine while swimming.

1999, I was in my freshman year of college and taking a step aerobics class.  On the day before Spring Break I stumbled off of the step and sprained my ankle.  I ended up walking several miles on it to go to the local library before finally being picked up by my mom and taken home, where they insisted I get it x-rayed.  As suspected, it was just a sprain and I limped around in an aircast for a couple of weeks.

2001, I was in my junior year of college and doing some work for a local community theatre.  I had climbed up to “heaven”, the area in the ceiling above the theatre which served as storage for costumes and props, and when I stepped out on a beam to reach something my right foot slipped off.  I got two sets of x-rays this time – one on my initial ER visit and a follow-up set back home after the radiologist saw a suspicious line on the first x-ray.  This was also just a sprain, although worse than the previous one, so not only did I get the aircast but I also hobbled around on crutches for a few weeks.

2014, after many years of avoiding doctors, I was in a car accident and ended up getting x-rays of my right knee (which hit the steering wheel when I was trying to brake to avoid the accident) and chest (which got smacked with the airbag).  In both cases, I just had some bruising.

2015, I went to the ER after a day of abdominal pain and got a CT scan that showed gallstones.  A few hours later they also did an ultrasound to get more information in preparing for the surgery that I had a mere 12 hours after seeking help.

2015, I was in another car accident, this time hitting my left knee on the driver’s side door and getting smacked in the left arm with the airbag.  The ER doctor said it was unlikely anything was broken but recommended getting the x-rays for peace of mind, so they x-rayed my knee, upper arm, and elbow.

2015, a couple of weeks after the latest car accident, my nurse practitioner ordered another abdominal ultrasound because I had complained of some digestive issues and pain in the former location of my gallbladder.  I had my money on there being a gallstone left in one of the ducts, but it turned out to be fatty liver.  This doesn’t typically cause symptoms, but I’m “lucky” in the same way that I got symptoms from my high blood pressure.

This little off-topic jaunt has not exactly worked to encourage making progress on the book, so I guess I’ll procrastinate a little more with a snack of kiwi and some raspberries.

Liver, No Onions

A couple of months ago, I lost my appetite.  I also woke up in the middle of the night with severe heartburn, to the extent that I had to get up and sleep upright on the couch the rest of the night.  I continued to have occasional heartburn, which did not encourage me to eat more.  Then I started having a mild discomfort and occasional twinge of pain where my gallbladder used to be.  I had an appointment scheduled with the nurse practitioner anyway, for December 17th, but at the urging of my coworkers (who were concerned that my lunch often consisted of Jell-O), I moved the appointment up to the 8th.

The nurse practitioner, Kelly, had me pee in a cup and poked and prodded at my abdomen before declaring it could be: a gallstone in one of the ducts, my liver, or my upper intestines.  She scheduled an ultrasound for the 16th, and in the 8 days in-between I nervously Googled my symptoms.

The ultrasound felt like it took a really long time.  This could be because my previous one was only looking at my gallbladder, or maybe because I was so drugged up that I barely even remember the previous one.  The technician said Kelly might have the results later that day, since it was early in the morning.  Late the following day, I still hadn’t received a call but I did get an e-mail notifying me that the ultrasound report was posted to the hospital patient portal.  Naturally I read it, and was unsurprised that the finding was hepatic steatosis – fatty liver.

Lots of people have fatty liver, which is, kind of obviously, caused by consuming too much fat.  Given that my triglyceride level in September was double the upper end of the healthy range, this diagnosis is not a surprise.  I figured Kelly would recommend diet and exercise, but really wanted to hear that officially and was frustrated when I called her office on Friday and was informed that she hadn’t reviewed the results yet and was already gone for the day.

Monday morning I did get a call, from Kelly herself, and she wanted me to go get some blood tests to check my liver enzymes.  She faxed the order to the hospital and I went over before lunch to let the lab vampires suck my blood.  I hoped she’d call the next day, which was the last day she was in the office before Christmas, but it was late that day before my test results finally appeared on the portal.  Both ALT and AST were elevated, although I didn’t know if they were elevated enough to be a concern.

I was surprised when I got a call from someone in her office on Wednesday.  She said Kelly wanted me to get retested in 6 weeks, but if I had increasing pain before then I should call and they’d refer me to a liver specialist.  That makes me wonder…if the results aren’t improved in 6 weeks, will they be referring me to a specialist then?

I worry.  I worry because Latuda, which I’ve taken most of the time since April 2014, can cause increases in triglycerides.  I worry because my liver is already at risk because I have the gene for Alpha-1 Antitrypsin Deficiency.  I worry because I’m a worrier.

As for the recommendation to eat healthy, I went grocery shopping today and loaded my cart with fruits, vegetables, oatmeal, and fat-free yogurt.  I came home and ate an orange and then a carrot.  I also ate several pieces of peanut butter fudge and a slice of pumpkin roll.  Baby steps, right?

The Silent Rejection

About a month ago I woke up in the middle of the night with terrible heartburn.  I ended up having to spend the rest of the night sleeping upright on the couch.  The heartburn has been recurrent since then – never quite so bad as that first time, but then I’ve also started taking medication when it crops up, so I don’t know how bad it would really get.

At the same time, I lost my appetite.  This normally only happens when I’m manic, but I am decidedly not manic.  In fact, I fluctuate between normal and mildly depressed, with about 1/3 of days in the past month spent in a mildly depressed state.  When I’m depressed my typically healthy appetite turns into non-stop eating, but right now the exact opposite is happening.

I manage to eat half or less of most meals, if I even bother getting a meal at all instead of opting for a cup of Jell-O (which I don’t always finish).  On Thanksgiving I gave half my turkey away to my cats.  Tonight I went to a friend’s house for her belated Thanksgiving and despite taking the smallest portion imaginable of each dish I was still having to force the food down by the end of the meal.

My coworkers have been nagging me to reschedule my December 17th doctor’s appointment for an earlier date, and when I finally did give in and call the office was closed for Black Friday, which I pretty much expected when I called.  This is probably why I was willing to call then, because I knew it wouldn’t lead to anything.  It occurred to me tonight that some part of me is putting this off in the hopes that it’s serious and could be fatal if left untreated.  I can’t actively try to kill myself without jeopardizing my graduation from DBT group, but I can let a serious illness go unchecked.

I screwed up tonight.  Two people who I’ve been involved with via their professions have been in some community activities I participated in.  There is only the slimmest chance I would ever again have to deal with them as professionals, so after months of waiting and wondering if it was okay, I tried to friend them on Facebook tonight.  I’d just given them a Christmas card when I saw them at an event, and one of them even hugged me.

I don’t know what I was thinking.  I had myself convinced they were going to accept.  Not only did they reject my friend requests, but they untagged themselves in the photos I posted from tonight’s event.  There was no hesitation where they could have considered the possibility of accepting.  There was no message to say “I’m sorry, but I can’t accept.”  Just the silent rejection.

Now I’m trapped.  Not only do I have to face them for at least two, maybe three more events in the next couple of weeks, but I also can’t ever again make use of two services.  If anything ever goes wrong with my job, I can’t get help finding a new one.  If I’m ever unable to keep myself safe, I can’t be protected from myself.  And right now I don’t even want to keep myself safe.  All I can see is how I can never do the right thing and am always going to be a completely worthless failure with terrible judgment.

I’m seriously thinking about cutting myself and lying on my diary card.  I wonder how long it would take before I caved in and confessed to Sadie?  I’m counting on not going back to DBT group after this year, but I wonder if I even care that much about actually graduating?

Hello Kidney

When I was 16, we were about to go on a big family vacation when mom bailed on us and insisted the rest of us go ahead without her.  She had a good reason – she had been waiting on the kidney transplant list and a match became available for her.  A few months later she was standing next to me as I got my first driver’s license, and I couldn’t say no when asked if I wanted to be an organ donor.  I felt it was wrong to move parts of one human into another human.  Of course I wanted my mother to be alive and in good health, but I was uncomfortable with how it happened.

Fast forward 19 years.  I had the organ donor notation removed from my license a long time back.  Transplanted kidneys don’t last forever, and mom’s first one started failing about 2.5 years ago.  She started dialysis, and went through testing to get back on the transplant list, but her doctor soon suspended her from the list due to an unknown finding on a CT scan.

She’d had a recurring fungal infection in her abdomen, and he feared that if she got a transplant the immunosuppressant medications would cause the infection to return and kill her.  There was a little spot on the CT scan that he insisted was the infection again, and he kept saying things like “take this antibiotic for 6 months and if it goes away we’ll put you back on the list” then “oh, it’s still there – stop the antibiotic for 6 months and if it doesn’t grow we’ll put you back on the list”.

This summer he told her that what showed on the CT scan might be a tiny bit of ureter that had been left behind during a previous surgery, and if she had exploratory surgery and they could find and remove it, then she’d be put back on the list.  Otherwise, she could count on being on dialysis the rest of her life.  She postponed the surgery a bit due to first her prior commitments and then the surgeon’s leg injury, but it was due to be done on October 29th.

Her doctor threw out one last bit of hope a couple of weeks ago, deciding that if she had another CT scan and it still hadn’t grown he might consider letting her back onto the list without having the surgery.  She said it was false hope, but got the test done anyway.  He finally called her Wednesday night and announced that the surgery was cancelled.  As soon as they get the required paperwork done she’ll be back on the transplant list.

The time she spent waiting still counts, so she has 27 months of time accumulated.  There’s a good chance of her getting a kidney quickly.  However, I can’t stand to watch her going to dialysis 3 times a week when there’s a chance that could be stopped sooner.  Tomorrow I’ll be calling the transplant center to find out how I get tested to see if I can donate to her.

I still feel really weird and uncomfortable about the idea, but some things have changed in the past few months.  I had my first surgery, an emergency one to remove my gallbladder, and although I was terrified going into it, I found that it wasn’t as bad as I had feared.  The possibility of donating to mom surfaced in my mind, but I still had to work on that problem with moving body parts between bodies.  So I signed up to donate blood.  This wouldn’t have even been considered at the time mom started dialysis, as I’d never had blood drawn in my life before last year, but it has happened repeatedly since then and I figured I could handle them taking even more blood than usual.

I’m not in any rush to go change my driver’s license back to organ donor status, but for my own mother I would give a kidney up.  There’s no guarantee that I’ll be a match, or that they’ll deem me eligible to donate a kidney, but I have to try.  In the meantime, I’ve found a gift to celebrate mom’s future transplant, no matter where it comes from.