Friday, April 26, 2013

Self-care versus obligations

Two circular x-rays showing vertebra, 4 screws, and two rods
My surgery x-rays showing the screws & rods

I'm at my "day job" all day today, my fourth 8 hour day since surgery on 1/16, and my third full work week.  I'm a 3.5 month old cyborg, and my body is telling me, in one of the most fierce ways possible, that I'm doing too much.  It's almost finals week, and I have been wracking my brain all day (in between my job duties of answering the phone and greeting people at the reception desk) trying to work on something that is supposed to be due by email in less than an hour.

I started the day with severe fatigue that didn't decrease after two cups of caffeinated tea, extra B-vitamins, and a prednisone (to help my poor adrenal glands out since my pituitary gland doesn't know how to do "proper" stress responses).  The severe fatigue left my brain just barely able to get to work and be at work, and every attempt at working on a project left me with my eyes trying to close (combined with the fact that I'm trying to do a non-traditional project, and the feedback left me wondering if I had enough time to either fix what I was doing or scrap it and do something completely different but in the realm of more traditional scholarship).

I'm left with a lot of panic, both panic at the project itself and panic at my body/brain's inability to actually do this work right now.  I feel like my body is trying to tell me that I shouldn't have taken classes this semester, that I shouldn't have gone to work, that I should have listened to the surgeon's advice to take 3-6 months off both work & school (note:  I really don't know why I split work and school these days.  At the doctoral level, my schoolwork is my work;  however, since I don't receive departmental funding, I have an outside graduate assistantship (what I usually refer to as formal work right now).

I'm trapped between academic time and crip time.  I'm petrified of the aftermath of sending an email saying that my work is going to be late, partially because I know that it probably won't be sent until tomorrow as I'm working on a wicked sinus headache (hello North Carolina pollen....or a cold that I may have picked up with my overtaxed, underperforming immune system).  The intellectual work that I have done on this project is all in my head.  There has been a lot of labor done, but it's not tangible for an instructor to grade.

I apologize for having a string of blog posts that are less-than-perky about my situation (I promise that there is a happier post that will be up after the semester is over about my weird home mods to make this recovery more manageable!).  This healing-while-having-faulty-physiology thing is a rough road filled with potholes.  Hopefully the fabulous people in my life will continue to be patient with me :-)

Wednesday, April 10, 2013

Mourning the loss of my 1 rep maximum

Photo of a steel 15lb dumbbell sitting on brown carpet with a pale foot resting on it
A lonely 15lb dumbbell & my foot
For those of you non-weightlifter types, the title might not make a lot of sense.  For those of you that are, this post is probably not going to be what you're expecting.  I like bending words like's probably one of the reasons why I'm working on my PhD!

Yesterday morning I had my first real physical therapy appointment post-surgery.  I don't know if it was fatigue, PMS, percoset, or just plain absentmindedness, but I asked my therapist if I would ever weightlift again.  She gave me a sad look and said "yeah, sure....high reps, low weights though" and said something about toning versus bulking.

I started crying.  So much of my identity as a person has been wrapped up in my strength.  I loved lifting heavy things and putting them back down in all sorts of ways.  It didn't matter if it was a dumbbell, a piece of furniture, someone's heavy box of books that they were moving, a tractor tire, or a big dog.  I absolutely love the feeling of my muscles getting tight and moving that heavy thing through space.

Being strong was also something that got me through a lot of hard times in my life.  I have had a lot of internalized fat phobia and ableism, but finding that my body type (both the fatness and the dwarfness) was particularly well-suited to lifting really heavy things made me feel incredible.  It showed me that athletic bodies come in a diverse array of shapes and sizes.  It gave me the emotional strength to deal with all the crap that fat folks deal with at the gym.  The gym was a place where I felt like I had control over what happened both to my body and to my life.

Now, I'm mourning the loss of ever finding my 1 rep maximum.  I used to be able to back squat at least 165 pounds (that was the highest I hit in Crossfit before I screwed up my knee....and I would have been able to go higher once I cleaned up my form).  I could deadlift around that much as well (I was being really careful with my DL form because of my already diagnosed spine issues....I was in chronic pain management at the time, including opioids, but was trying to be stubborn and "athlete-like").  I won't even be able to do a 5x5 program like Stronglifts (warning: not a HAES page) because my lifetime lifting maximum will likely be the weight of a standard barbell (45lbs).

Picture shows xrays of lumbar vertebra with four screws and two rods
The xray of my hardware, day of surgery
This new reality hurts.  I'm not sure if it would have been easier to deal with it had it not been part of a long drawn out process (more like an acute and severe injury that requires immediate surgery).  All of this "will I or won't I be able to do xyz" is exhausting.  It also sets up this expectation that I need to try and see if I can still do something, whether or not it hurts me....particularly because of my embodiment as both fat and disabled and how society thinks that if I can just "fix" being fat, I'll no longer be disabled.

There is a possibility that I may still be able to do heavy bench press work, as long as someone racks my weight (this also means I have to learn to ask for help and accept help more readily, something I struggle with).  I'm not sure if this is a ray of hope, or another weird place where I wonder if I'm disabled enough for para-athletics (I would hope that broken spine + fusion + nerve damage/SCI = eligible for IPC powerlifting, but IPC standards have very specific categories of impairment).  Many powerlifting organizations have bench-only competitions as part of their competitions, if I wanted to pursue them.  I don't know if that would make me happy or if I would just mourn squatting and deadlifting.

So for today, I mourn the loss of my 1 rep max that I will never actually experience...and it hurts.  And tomorrow?  Well, I go back to physical therapy and just keep trying to get stronger, no matter what kind of sport or physical activity outcome comes of it. 

Bodies are always changing, no matter what.  Age, injury, illness, hormones, environment, oppression, emotions....every body, everybody's bodies never stay the same.

Tuesday, April 9, 2013

Alternative medicine and me

Newly opened box filled with nutritional supplements and packing peanuts
It's starting to look a lot like Cripmas...
This is one of the several posts that has been sitting unfinished in my blog queue.  I've tried to clean it up to make it more current, so I apologize if there are any weird timing-based issues with the writing that I missed.

One thing that comes up a lot when talking openly about one's illness or disability is the question "have you tried [insert therapy, medicine, supplement, herb, exercise]."  It's a question that I know many times comes from a place of love and sincere desire to help.  I've written a little about it before on this blog, and other people have discussed this more succinctly than I have (for instance, Toni Morris from Psychology Today).

I used to have a pain management physician's assistant that was into complementary and alternative medicine, so sometimes my prescription would include the names of various supplements to try.  Magnesium, GABA, valerian root, melatonin, fish oil, l-glutamine, l-carnitine, B-complex....some on an empty stomach, some only with food, some at mealtimes, some before bed.  Every time I try something new, it involves a financial commitment along with a commitment to making a constant rattling noise as I move around my day with a horde of pills, all in the name of hurting less and functioning more "normally" in society.

I also tried several things in a book called From Fatigued to Fantastic, which is geared towards folks with chronic fatigue and fibromyalgia.  My pituitary birth defect has a lot of fibromyalgia-esque symptoms (and many folks with hypopit get diagnosed with both disorders, although a rheumatologist told me that fibro was a diagnosis of exclusion, so I couldn't have both).  I didn't try everything in there, partially because of finances, and partially because of the time commitment many of those suggestions would involve.  A lot of the author's suggestions overlapped with the supplements my pain management PA was suggesting, so I tried with the desperate hope of avoiding the knife.

None of this helped me bypass surgery.  I don't know if any of it really actually helped, partially because I tried too many things at once.  I've learned that some of these things do make a quality of life difference (B-vitamins when my energy is lagging, melatonin, magnesium, and valerian root for making me sleep better).  Some of these supplements are hard to gauge effectiveness on (like CoQ10 for brain function and memory...memory problems being a huge problem for many folks with chronic pain, and something that makes my scholarly work incredibly difficult).

A green dish sitting on a wood desk holding eleven different pills
This is my non-food breakfast of champions
Since I made a sizeable order at Puritan's Pride for some of these experiments, I keep taking a lot of them.  I did enough research that I feel confident that I'm not doing any harm to my body, and most of these things are vitamins and minerals (the bottom picture shows several fish oil capsules, vitamin D, several magnesium pills, a B-complex, & two different amino acids).  I'll see what happens to my quality of life when the supplements run out.  I just need to be content in knowing that I at least tried.

It's all part of my "keep on keeping on" plan....just keep trying.

Friday, April 5, 2013

Eleven weeks

Author with auburn hair cut to the chin, wireless glasses, holding a dark blue-purple mug in front of her mouth.  Mug reads "Innsmouth Academy 1798" with a stylized Illuminati symbol
Me & my nerdy "Innsmouth Academy" mug
I've meant to blog, but a combination of fatigue, trying to stay on top of school, and get back to work have kept me from doing much "extracurricular" writing (or really much of anything fun that doesn't involve laying in bed or on the couch).  Because of the surgery, I've had to learn to do a lot of things while laying down....doing schoolwork for instance.  I think that's been one of the hardest things to cope with honestly.  I don't work well from home, so to be forced to not only work from home but ALSO work while laying down (without falling asleep) has been incredibly frustrating.  Heck, this post was started several days ago but is just now getting finished and published.

I've also struggled with what to say at this point.  I'm still in a lot of pain, but I am doing better.  I'm walking with a cane outside the house, but have been unable to use my wheelchair because I cannot sit upright long enough to make it a useful form of locomotion.  I haven't hit ER-necessitating levels of pain (thank goodness).  I would have to say that I'm at where I was about a year ago...taking prescription pain meds a couple times a day but able to walk short distances (about a block, maybe two at most).  The pain still interferes with my sleep, despite medication.  My balance is better, although I've lost even more feeling in my legs post-op (some of that may be temporary though).  I now have muscle spasms in my legs, which I didn't have before the surgery....but hopefully those are temporary as well.  Any nerves that were touched during the surgery, even just to move them away from the surgical field, get to have an unhappy synapse party for months after the surgery.  Any nerves that were freed (like the smashed nerve that the surgeon found), will take an extremely long time healing....if they heal at all.

This is where my body gets really complicated by my birth defect.  Since I'm not on the growth hormone replacement I ought to be on to treat my hypopituitarism & pituitary dwarfism, my body is going to take even longer to heal all of this mess....the cut muscles, the angry nerves, the vertebrae that need to figure out how to make friends with a chunk of cadaver bone to create the fusion, the vertebrae that now have titanium screws as uncomfortably close neighbors.  This was one reason why I tried to avoid the surgery for as long as I could....I knew that my particular biological reality would make this really difficult and take much longer than someone with "normal" physiology.

Black and white photo of the author, a fat woman wearing black cycling shorts, a jersey that says "Erik's", a helmet, sunglasses, and a ponytail.  Bike is a road bike with thin tires and close curved handles.  Text reads "I STAND for fun physical activity for all. Weight =/= health"
My STANDart poster with my racing bike
I think the hardest part of the whole ordeal is just wondering what my life will be like in the future.  Will I still need a wheelchair for longer distances?  Will I be able to walk without a cane?  Will I ever be able to run again?  Will I ever be able to use my beloved racing bike that sits underneath my house (that I still can't bring myself to sell).  Will I ever get back to powerlifting or Olympic weightlifting?  Bellydance, hooping, African dance, spinning poi, kickboxing, Crossfit....  Will I ever be free from prescription pain medication?  Will I ever have my full mental faculties back, free from pain & medication (even for small chunks of time to do my scholarly work)?  When will the fatigue lessen to a level where I can do more than just work and go to classes?

I'm trying to not feel bad when people ask me how I'm doing.  I had the most progress the first month, and it feels like I've been in a holding pattern since then (I know intellectually that's not true...I'm able to sit for longer periods of time and I've restarted physical therapy).  I still have to decide what to tell people when they ask how I'm doing.  Do I go with my usual Minnesota-nice and say "just fine" when I'm struggling with the feeling that my body is trying to get rid of the hardware Alien-style?  Or when I can't get out of bed without taking pain meds, to just be able to get up and get moving?  Do I pretend that I'm making more progress than I am?  So many of the questions are the same as pre-surgery, and that just makes the emotional component of healing harder.  From my completely unscientific putzing on the Spine-Health surgery forums, it seems like weeks 10-16 are the ones where the depression and anxiety hit the hardest.  So many questions, and so little (comparatively speaking) progress.  This is the real hard part of recovery.  It's like hitting the wall in a marathon.

For now, I'm just trying to keep on keeping on.  I'm struggling with a work/school-life balance as I scholarly work takes so much extra effort that I find myself wanting to use any "spare" energy to actually enjoy myself (shock & awe! grad students have fun??).  Any low-energy free time has been spent with the great American past time: TV (via Netflix & Amazon Prime on my iPad).  I'm twitching to get out of the house and work out, go to a coffee shop and write, hide in the library and read....but my life is on crip time, and crip time does not live harmoniously with graduate student/scholar/worker/"normative" time.

Now, my friends, I need to get horizontal and my brain is too foggy to keep trying to write coherently.  As the journey continues, I'll try to write more often....but it is the last month of the semester and I have a lot of work to do if I'm going to manage to get all my work completed (the goal is to not take an incomplete in either of my classes).  I realize that trying to stay in school this semester was probably not my smartest choice from a health standpoint....but from the good old American fiscal standpoint, I had no choice.

On a lighter note, if anyone has suggestions for things to watch on Netflix or Amazon Prime, feel free to post a comment with your suggestions :-)