Health insurance is neither healthy nor insures health

My HumatroPen...growth hormone injection pen device

Photo description: A green plastic case with grey lining, holding a white and lime green cap, two pen injection needles in sterile packaging, and the pen device that is white & lime green with a dial on the right and the orange and clear medication vial on the left side.

I was so happy a couple weeks ago that my endocrinologist's office finally got in gear and responded to one of the drug companies' patient assistance programs.  A representative from Eli Lilly worked with me to get set up on my growth hormone replacement while they worked with my insurance (for free!).  The case worker would call me when more information was available as Blue Cross Blue Shield of North Carolina would not tell her which type of synthetic growth hormone was in their formulary.  It was amazing, I was hopeful....until I get a series of weird phone calls that hinted that not all was well in pituitary medicationland.

My campus pharmacy called on Wednesday telling me that a medication was called in and they wanted to know what to do with it...but couldn't tell me in a voice mail which medication they were referring to or which doctor called it in.  Thursday morning I received a voice mail from my endo's office saying that they called in a prescription for Omnitrope (a different drug company's medication....I was initially prescribed Humatrope from Eli Lilly).  Today I get a call from the representative at Eli Lilly that my insurance won't cover Humatrope and I will be dropped from their medication program.

A corporation, in this case an insurance company, should not be able to tell my doctor what medication I should be put on.  If they want to go that route, they need to be transparent about what they will or won't cover.  I should not have my health screwed up like this.  This is medication that will likely have a copay beyond what I can afford (my current monthly health expenses are 25% of my paycheck....that doesn't include making payments for my surgery, or any of my doctors to hit my deductible).

The sad part?  Somehow this is still "affordable" according to ORomneyCare (the Affordable Care Act was initially Romney's idea, not President Obama's).  Somehow, I need to treat my body like my car (something that I have to insure to be able to use), but I don't get to choose whether or not I have a body, or what kind of body.  I didn't choose this clunker, but I do have to live with it.  I treat this clunker as well as I can with what I have, and while I don't tend to love my body, it's the only one I have.  Want to know what's more broken than this body?  The United State "healthcare" system.

The future is cloudy

My partner & I at the Carolina Renaissance Festival

I  just want to give you all a quick personal update.  I've spent the past two weeks in the throws of a pain spike that I initially attributed to my fracture shifting.  Last week, I finally went into Urgent Care and have spent 4/7 days in a doctor's office to see what had changed with my mess of a spine.

The short version of the story is that I have another fracture on my L5 vertebra on another stabilizing point.  This is causing neurological signs of spinal cord injury (instead of just peripheral nerve damage).  I'm waiting to hear about the results of an MRI that I had on Thursday to see if avoiding spinal fusion is still an option.

Based on what I've gathered from all these physicians is that I may not be able to avoid the surgery much longer, or I risk losing bowel and/or bladder function along with more mobility problems.  If it was a matter of just mobility impairment, I would probably keep waiting.  However, the combination of pain levels that hover between a 7/10 & a 9/10 (along with the increased risk of loss of bowel & bladder function) may make the surgery a more urgent concern.  While I wait for the appointment with the orthopedic surgeon, I'm pursing a second opinion with a neurologist and trying to see if I can find a spine specialist that performs fusions on people with some sort of dwarfism (I don't want the surgery to fail just because the surgeon doesn't understand that pituitary dwarfism impacts bone density and healing).

In the meantime, I'm doing my best to keep my life afloat in the midst of chaos.  It's hard to do my scholarly work with this much pain, and the anxiety of not knowing what the future holds for my body.  I'm also not sleeping well because of breakthrough pain, leg spasms, and electrical jolt-feelings down my legs.  I'm also really concerned from a financial standpoint, as the US medical system is really broken.

It's hard, really hard.  Hopefully I'll at least have something solid, even if it's bad news.  Dealing with the knowable, no matter how bad, is sometimes easier than dealing with the unknown.

The system is making me broke/n

Serenity, my grey tabby*

As a working disabled person in the USA, our system sucks. Because we don't have socialized health care, a person in my current situation has very few options. I have insurance through my job (student insurance, but still). No job/school, no insurance. I'm unable to work most 40 hour a week jobs due to this spine fracture, so quitting school to only work isn't an option (especially in this economy, especially because disabled folks are discriminated against in the workforce). Part time jobs usually don't have benefits. That would potentially leave me with trying to get on disability to get Medicare to have spine surgery.


This system sucks. If we had universal health care, PwDs could work without facing the potential loss of health care...which would make for more tax payers (yay capitalism). It would also be cost-effective because preventative health care is cheaper than ER visits (and I saw a lot of folks last night at Urgent Care with issues that would have been best treated at a primary care facility).


ObamaCare isn't enough. Look to Europe, Canada, Cuba....look at what economists call "developed" or "industrialized" countries, and look at what we're lacking. Then think back at stories like mine, where I'm literally in tears wondering if our health system dysfunction could inevitably lead me to having to take a leave of absence from school (and work, as my job is dependent on me being a grad student). Please. I know this rant is fueled by pain medication, frustration, & tears, but there's a reason. I'm definitely not the only one in this position.

*The photo is random...just a blurry photo of my elder cat Serenity in front of a stuffed penguin a good friend gave to me.

Trusting in the system

Pic taken in 2009 by Dave Stagner

A "comrade in spine crap" of mine started going to the same orthopedic clinic that I've been going to for pain management.  I've had a pretty decent relationship with my nurse practitioner there, so he started seeing her as well.  I saw her in the beginning of August, and he saw her towards the end of the month.  He found out that she was leaving at the end of the month, and I think my jaw hit the floor.

I felt like I'd hit the jackpot with this person.  I was able to be frank with her about symptoms and pain, to express my Health At Every Size standpoint, to let her know that I was a bit of a medical geek and had done a lot of research about my various spinal conditions as well as my birth defect-related minefield.  When I was trying to figure out if I should pursue spinal fusion, she gave me some markers of impairment that she thought were appropriate signals to revisit surgery.

So I found out from my friend that my NP left at the end of August, and that she didn't tell me at the appointment.  My first feeling was betrayal, then mourning, then panic.  I take narcotic pain medications and muscle relaxers daily (up to four times a day depending on the medication & how much pain I'm able to tolerate).  She understood that I usually refused to medicate my pain enough because of the side effect problems (want to try to do deep sociological analytic work while on narcotics?  For me, it's extremely difficult).  She also didn't treat me poorly because of my deep understanding of my various medical conditions.

You see, when your physiology is complex enough that general practitioners won't see you (seriously...my university's student health center has told me this recently, which makes life more difficult because my insurance requires me to use them for "general health" needs), there can be this tendency to latch on to any professional that doesn't treat you like a freak of nature.  I latched on to her fiercely.

Now?  I'm feeling lost.

I wouldn't even be seeing her for another month or two because of my prescription refills and our mutual understanding that I might just get slowly worse.  We both knew that I'm losing function and feeling.  We both knew that there was no literature about spinal fusion success in people with pituitary abnormalities, and that I wasn't willing to be a case study (well, if someone would put me as second author maybe...just kidding).  She was forthright but gentle, and had one of those faces that always seemed to tell me that life sometimes sucks but it's worth the fight.

She never told me to quit school.  She never told me to quit my job.  She told me to keep being as active as I could.  She affirmed my athletic identity.  She did tell me to quit powerlifting (I didn't initially listen...I'm stubborn when it comes to something I love).

Now I have to either trust whoever takes over her position or find a new clinic.  I have to trust that, whichever option I chose, the provider will treat me with respect, will respect my knowledge of my physiology, and that will understand that my pleasant face is many times just a mask hiding pain and uncertainty.  I have to hope that I won't be shamed for my fat and that my broken spine won't be pinned on my size.  I have to hope that the person knows that sometimes my medication noncompliance is due to my scholarly work that I refuse to give up even though it becomes more difficult, both because I'm a doctoral student instead of a masters student and because the pain seems harder & harder to manage.

I have to trust in the American medical system to help make it ok, and I'm petrified.

Adventures in insurance

I got up early before work to call both my insurance company (who never emailed me back a few days ago) and to call companies that sell wheelchairs.  Found a company that is listed on my insurance company's list, and now I have to wait for their customer service person to call me back with the exact steps I need to follow to see if my university's insurance company might pay for it.  Good grief.  It's not like wheelchairs are an awesome fashion statement...I just want to be able to get around campus, go grocery shopping, and not have to drive to campus.  Heck, there are some days where I can barely get from the handicap parking to my office without my spine feeling like it was gnawed on by a baby tiger.

I am literally about ready to just buy a chair off Ebay.  Since I've used crummy hospital-like chairs ("hospital clunkers" as AskAWheeler puts it) , I know approximately what size I would need.  The problem is that there are tons and tons of options out there, and things that other wheelchair users needs may be things I either don't need or don't want as a partially ambulatory person.  For instance, a movable footplate would allow me to put it down when my feet are being useless or put it up when my feet are cooperating some so I can use them to scoot around with a coffee in my hand.

Now that I know what my deductible is, I may be better off getting it myself, even with possible fit problems.  I found a Top End Crossfire (Top End is a sports chair company, although this model is a general purpose chair) on Ebay for a good deal less and some options that drive the MSRP up significantly.  Seat is the right size, the back isn't too high (the higher the back, the harder it can be to push if you're little like me), and the footplate is adjustable height in a range that my legs actually hit.  The plate isn't removable though, and it's lacking the clothing guards that I'd prefer to keep my shirts from getting stuck in the wheels.

So now I wait for United Seating and Mobility to call me back to see what sort of insurance dance might be ahead of me.  I may need to have a physical therapy seating & mobility evaluation, which will likely cost a good chunk of money out of pocket.  We'll see what happens...