“You Look OK… “

Well, that’s great !  I’m glad I don’t look like I feel...  I’d have to worry about the dogs mistaking me for a fire  hydrant or other excretory depository.

I’m not sure what THIS looks like: 
– autonomic dysfunction: inconsistent regulation of blood pressure, heart rate, temperature
– diabetes w/complications on insulin
– degenerative joint disease (with one shoulder now having symptoms, both shoulders, both hips, and both knees involved- and no “elective” replacement surgeries because of my history of pulmonary emboli).
– degenerative disc disease, from cervical spine to sacral spine (or neck to butt)
– severe fibromyalgia
– carpal tunnel
– TMJ
– peripheral neuropathy (progressive sensory, diabetic amyotrophy)
– nocturnal epilepsy
– neurocardiogenic syncope/POTS (related to autonomic dysfunction/dysautonomia)
– GERD (fairly severe)
– epigastric hernia (vs. ventral- still getting worked up)
– sleep apnea
– diabetic nerve pain (feels like thighs are on fire, or hot needles in feet)
– defeated patient with little hope of getting anything addressed without some sort of support.

And I’m not sure how ‘visible’ my history is, either:
–  APL (acute promyelocytic leukemia)
– acute, subacute, and chronic pulmonary emboli in all three lobes of my right lung and           right pulmonary artery
–  multiple concussions
–  mild stroke
–  TIAs
–  falls
–  hydration issues
–  kidney injury (related to dehydration)
–  pyelonephritis
–  sepsis (r/t pyelonephritis, cancer, and post knee replacement UTI)
–  and I’m sure things I’m forgetting, including several surgeries.

Now add a doctor for nearly each of those, who don’t talk to each other.   I’m supposed to manage it all, AND manage the communication (or lack thereof) between doctors.   BTDT, and it ain’t working !   My job is to be a compliant patient.  But how can I be compliant when decisions are being made without any input from myself, and the doctors not communicating with each other before ragging on me?  I get to be a participant in my own life !!   If not, I can’t work with that physician/NP/PA/XYZ.   I can’t trust anybody who won’t hear MY concerns.   The first part of assessment is focusing on the issue at hand- and that includes patient concerns.  LISTEN- it’s cheap and used to be fairly standard.

Otherwise, if I’m not a part of my own healthcare, why should I go see those who have ME figured out without my participation?

 

 

 

Why Handicapped Parking Spaces Matter… Even If I “Look” OK

To look at me, I probably don’t look ‘disabled’- or ‘that bad’.  I have all of my limbs, don’t use a cane because of vision issues, am not in a wheelchair all of the time (though I will have a wheelchair by the end of the month for longer distances), etc.  I don’t have contracted or withered limbs, use braces to support my legs, or any other visible disability.  And yet handicapped parking spaces make it possible for me to go to the store on my own. Period.

My disabilities include peripheral neuropathy (my right leg is deteriorating and both feet burn at times), autonomic neuropathy (if I stand up for a period of time my heart rate accelerates and my blood pressure drops, or if I get overheated, I pass out), degenerative disc disease (my spine is ‘collapsing’ from the discs deteriorating- lots of pain), degenerative joint disease (have had one knee replacement, should have had another, but leukemia got in the way, and both hips have bone spurs), and at times my chronic pain is really bad.  (Did I mention fibromyalgia?)  It’s always there, but some days are worse than others.  I’m a gimp.  Who might keel over if I’m not careful and prepared.  I am also very intolerant of temperatures over about 65 degrees for any length of time.

Having handicapped parking makes going out at all possible.  That along with my cooling vest.  Those two things (and soon the wheelchair) make it possible to be ‘normal’- or at least take a stab at doing normal things.   I already look weird from leftover chemotherapy side effects: my eyebrows never grew back right, and I’m much heavier than I was prior to cancer.  I keep my head shaved because of how my hair affects severe heat intolerance.  But having a closer parking space gives me some freedom on the days when I am able to leave home.  It’s a big deal !

When I see someone park in a handicapped parking place, but leave someone IN the car in that place, and walk in to the store with no indication of disability, I get annoyed.  Now there are a lot of disabilities where the person is able to move around relatively normally.  Some folks have handicapped parking for emotional disabilities.  Those are valid.  But I’ve heard people talk (or read) about using their friend/spouse/partner’s disability placard to get good parking.  That is illegal, and morally reprehensible to me. Then there are those with no placard or handicapped license plate at all.  On a day when I can leave home, those closer parking places are crucial !  They’re not just a convenience.  I can’t leave home just any old day.   Walking an extra 20 feet can be incredibly painful.  More pain can cause unstable blood pressure and heart rate, and that can lead to losing consciousness.

I know which stores I can go to and be safe, because of the proximity of the handicapped places (one hospital here has the handicapped places down a flight of stairs or a lengthy ramp… great planning; they do have valet parking until 5 p.m., so I have to schedule any tests prior to then).  I know how far I can walk before getting a grocery cart to hold on to.  I haven’t been to a mall in about ten years, except for once when I was waiting for a new battery to be installed in my car- I gimped to the food court for a soda while waiting, then gimped back.   I’m hoping the wheelchair will allow me to ‘chair walk’ (use my feet to propel myself as a form of exercise and general mobility) in the mall.  I’m not a huge fan of shopping, so it’s more of an issue of seeing other human beings and being more mobile. As it is now, I shop about once a month, and aside from my dad, I might not see other people for weeks. It’s been like this for 11 1/2 years.  I have joined a Bible study recently, which has been great.  It’s hard to walk from the parking lot  (with handicapped parking) to the room we use, but I’m getting there. It takes about 36-48 hours to recover.

But without handicapped parking, leaving home is not even an option for me and millions of others.   Staying as independent as possible is really important- not only to maintain whatever physical mobility is left or do ‘routine’ chores,  but to interact with others.  For those who need handicapped parking, it is not a convenience.  It’s a necessity.