Always be open to possibilities even when they may seem more challenging or at odds to popular thinking. This is not just for medical but for everything.
A couple weeks ago I visited a new physiatrist in hopes to get a referral for my wheelchair. I've been using a loaner one that the company kindly gave me until I get my own.
Back in March 2011 I wrote a post It'll be Alright sharing the arrival of the next major stage of progression, a wheelchair.
It was suggested that I go into a standing chair and use e-motion wheels, a power-assisted wheel mounted on the frame in place of manual wheels. A sensor inside the wheel registers the propelling movement and activates the electrical motors which greatly aids my weakening arms.
The standing frame: Since, I am in a seated position more often it's important to increase circulation as much as possible. The "don't use it, lose it" phrase is one I use alot to explain the situation. While, I myself can't stop the progression there are things one can do to maintain a little though the disease eventually wins. While these efforts and results may seem like microscopic measurements to some, it is the world to an HIBM patient. Every second matters and if I can hang onto any physical ability just that much longer then it's worth the effort.
For anyone sitting all day is terrible, so for a patient whose body is sort of dying it's even worse. As soon as you sit activity in the leg muscles shuts off, calorie burning drops, enzymes that break down fat drop, insulin effectiveness drops and these are just a few.
For a patient who has limited muscle to work with it's important to keep moving as much as possible. One needs to find a personal balance of walking, standing and sitting to safely maintain what they have. As HIBM has progressed I noticed the time span in between the need to move my leg, for example, before it cramps, bloats, feels dead and falling asleep has decreased. For example, 3 years ago, I may have started feeling these symptoms after 2 hours of not moving my leg. Today, my legs do this every 10 minutes.
I still don't use a wheelchair in the house. It's my way of telling HIBM, "Screw you!" I shuffle and leave my wheelchair in the car to avoid temptation of retreating to the easier path. But, outside of the house or at work I need to employ my chair almost all the time. It's just safer.
With the standing chair I can elevate in the chair by pulling the frame to a standing position. This act alone give my limbs a break.
These little things seem small but it helps to break up the monotony of sitting and relieves the body. Who knows, these types of tricks could shave off a year and allow me to maintain my mobility for that much longer.
The e-motion wheels: My arms, shoulders, fingers and hands have gotten weaker. With HIBM patients upper extremity weakness is very obvious. The fingers and hands end up not moving and have a frozen look to them and the arms cannot raise. This all happens slowly and for every patient the journey, or which limb experiences weakness first, can be very different.
My weakness began in lower extremities; hips, legs, feet, toes, etc., and now it has moved upwards to my neck, arms, shoulders, wrists, fingers and hands. This weakness is not quite as visually recognizeable compared to others, though I absolutely feel it. It's obvious when I can't open a bottle, lift a dish, grab small objects, etc., but my fingers haven't visually "froze" yet.
With that, though I am ready for a wheelchair I am not ready for a powered chair. I could go directly to a powered wheelchair but I'm avoiding it. Just like 7 years ago when I avoided a wheelchair after my doctor tried to put me in one.
Though, I can propel a manual chair slightly on flat ground, for the most part I don't have the shoulder strength to propel one alone. But, with these sensor assisted wheels it helps me to maintain independence by completing my rotations for me. I push and it pushes the complete cycle for me making it easy for me to tackle any evil terrain, including carpet.
Yes, carpet is evil. I've often day dreamed about carpet as it innocently lays there while I try to trek across it. In my mind it suddenly billows up as this evil carpet monster looming over me as it mocks me.
So, there I gave some background of these contraptions that will significantly help me gain independence. I look for these tactics of holding onto what I can because I want to be able to function and not depend on others. At least for another day.
I walked into the physiatrist's office hoping he would be on board. I haven't really gone to a doctor in quite some time because really there isn't much they can do for me when it concerns HIBM. Walking, or excuse me, rolling into his office brought back some eery memories but I did my best to ignore them.
I talked to the doctor, and like all doctors I've ever met, he never heard of my condition nor could he comprehend. I could tell he's the doctor that is used to a very typical protocol.
A meets B, so I give them C. Very formulaic type of treatment. Only problem is people are not formulas.
He listened to my spiel explaining the nuances and needs and afterwards he was condescending and pandering looming his doctor badge over me.
Now, we all know it is a bear dealing with insurance companies. The trick is you need a good doctor that is willing to fight for you. There are two different types of people, those who stick with status quo "it's never been done" attitude, and those who like to break the mold and give it a try anyways. This guy was status quo.
I was already aware that a doctor would have to send these DME (durable medical equipment) requests in several times because they will almost definitely be turned down the first time by private insurance, if not the second. But, he didn't even want to try. He wanted me to go into a powered chair. He told me that me "sort of" propelling my own chair would not do anything for me and not save anything. I disagreed, my way required utilizing more energy than twitching a little stick on a powered chair.
As he spoke it conjured up past memories, memories that I'm not sure I've really dealt with. The journey of finding a diagnosis.
I should probably one day document it here. I know I am not an isolated case. So many people go through this and obviously not just for my condition.
This post is not intended to pick on doctors. I am speaking of my specific journey. I've come across many doctors and prior to my move to California they were mostly all bad with terrible stories attached to them.
For example, my physiatrist from seven years ago telling me that I needed to go into a wheelchair right away and quit college. HIBM hadn't even taken over my body fully, I was functioning and yet he read the prognosis of my alleged, at the time, diagnosis and requested me to go into a chair. It was a good thing I refused to do anything of the like. I left his care immediately.
Another past doctor stands out in my head very clearly. A high powered, well-known leading doctor at Detroit Medical Center of Michigan. He was very clean cut, white jacket and always at golf outings for "business" affairs. He would treat me like a little girl, something I severely hated. I kind of have that innocent, young kid look and I notice people automatically assume my capability levels upon meeting me. But, I'm anything but that impression. I was on a mission with no time to mess around.
They did a muscle biopsy on my leg and in the same area that a previous hospital had done it at that.
I said, "Hmmm, I'm no doctor but would it be better to do it in a different area, or even on a limb that wasn't as progressed, like my arms?"
They did it on my leg anyways because what do know.
Typically a biopsy result should be in your hands in a couple weeks. Detroit Medical Center took seven months. Seven months of me constantly going into his office only to hear they didn't have an answer yet as he ushered me out the door, patted my head and handed me a lollipop. At the time I was in design college, a heavy heavy major in automotive design. I barely had time to sleep let alone go on these medical ventures, but he didn't mind wasting my time.
My last visit consisted of me in his office hoping that he wouldn't be a douche again.
The last visit he came in, "I'm sorry, we will have to schedule another time, I still don't have the results."
I started to cry. Part, because I was so sleep deprived from school and part, because this was a ridiculous situation.
He grabbed my arm and said, "Awwww, is it because you're parents are getting a divorce?"
I said, "No, it's because you're an asshole. First, why not tell me you don't have it instead of having me trek in here for an appointment. Do you know how hard it is for me to physically get here? Second, it's been seven months for something that should have taken 2 weeks".
I left his office ready to move onto another doctor. They later called me with a concluded "diagnosis". I found out they lost the sample and were hiding the fact. Even later, I found out, from the Mayo Clinic, that the sample was so deteriorated that Detroit Medical Center could not have reached an accurate pathology diagnosis, which means they sort of made up a diagnosis. Mayo Clinic also was confused why they would do the biopsy on a deteriorated limb.
Yes, I thought the same.
The stories could go on and for most all of them I was alone in my search. I never had time to accept a diagnosis or cope with it because I was too busy on a search. When a doctor didn't tell me what I wanted to hear or I could tell they were full of it, I left and moved on. As I got good and experienced I became good at identifying bull shit and would get out as soon as possible.
So, a few weeks ago as I sat in this San Francisco Bay office listening to his condescending manner I felt like I was reliving it again, except this time I was more educated about what I had. I tried to hold back tears and in my mind debated on whether or not I should let him finish his "care" or just walk out.
I tuned out just waiting for him to finish so I could go off and find someone that would listen and help. He wanted to put me into a powered chair and I was crying inside.
"Didn't you just hear what I said?" I thought. "It's important not to give in too early. Why would you want to debilitate me quicker than I need to. In the long run I'm doing more disservice to the system because I'll just be another body for the state to take care of. Don't you get it? I'm trying to avoid this it's actually saving healthcare money." I thought.
As he finished, I nodded and left as quickly as I came. He didn't even want to try. It brought back so many memories, the lonely times in the cold doctor offices, the time I went to Mayo Clinic on a 4 day diagnosis excursion alone and at night would cry alone in my hotel room while Golden Girls played in the background. It sometimes comes rushing back and when I can't control the inner tears, it's all obvious that those times affected me more than I realized.
The difference this time was someone was with me. Jason.
That day I had another doctor appointment on the other side of the clinic and as we waited I bursted out crying. Leaning forward in my silly wheelchair I put my face into my hands and cried. "I don't want to go into a powered chair".
I hate people who love the word "can't" and I've found alot of people do.
Doctors, what do they know? They're groomed, knowledgeable in their craft, but it doesn't mean they know everything. You can't measure heart. You're instincts are good, follow them and don't take ONE answer as THE answer. All the doctors that told me I was too rare for anyone to ever care about developing treatment for or that I would never meet a patient like myself were all terribly wrong.
Keep pushing in an educated and balanced manner. Know your stuff and always be open to possibilities even when they may seem more challenging or at odds to what others think. This is not just for medical but for everything.