“Friendly” negative feedback

   Wow, I have not logged on in a super long time!  It’s been over a month! The stats and site looks different and for once I actually like it.  A pipe beneath our kitchen floor busted and very small puddles were forming between the tiles of our kitchen floor, the leak went all the way to the bathroom. I spent m of last month trying to keep my anxiety in check while I was alone with a group of strange men (plumbers) working throughout my house.
I tried to spend one of those days in Skas’ room rearranging and organizing things for him; and while I was on the floor separating Lego’s from army men two of the plumbers came in and informed me that the crawl space is in his closet!  My anxiety that affects me when I’m in front of people I don’t know is directly related to my hemiparesis/hemiplegia.  The spasticity of my affected side increases and everything physical becomes difficult.   I know how to get up from the floor on my own without anything to hold onto but it can be difficult and I have fallen a time or two in the process.  Because my methods have proven to be somewhat faulty in the past, I get anxious trying to do this simple task in front of people who are not fully aware of my disability.  It’s really difficult to do things like taking one step in front of people when simply not knowing them causes your foot to become tight and turn more than what is your level of normal.  It’s also difficult to trust your weak leg when it’s extra stiff; can it really support your weight even for a moment?  Your arm becomes tight and it either curls up and into your torso or it 43731sticks out (gentleman on the far left) which can throw your balance completely off.  I have a similar gait as the gentleman in the far left picture when I’m anxious or when something is affecting me like the weather.  It’s difficult to function when your body turns on you like this.  It’s also embarrassing which was why I did my best to avoid the plumbers.  I sat on the couch watching T.V and hoping to not have a need to get up.  God forbid I had to pee and not only had to traverse the obstacle course their disorganized work created between my couch and the bathroom but also had to speak to one of them! Oh, how I wished I could have slept it all away but that would have been far too awkward.

   Now that things are calming down once again within our house, I decided it was time to ask my doctor about picking up therapy again.  I really want to learn how to bend my left knee and walk without my cane.  I can live with my AFO but carrying a cane with you everywhere is inconvenient.  It gets in the way all the time, I drop it at least once in every location I’m at and sometimes the rubber foot  is the complete opposite of non-slip on some floors. The only good thing about having a cane (aside from the obvious) is that a lot of people see the difficulty you have, or assume there’s difficulty and tend to move out of your way.  I don’t know how it will be when I’m able to walk without a cane.  I’m not sure how steep a limp I may end up having; there will always be one but how bad will it get is anyone’s guess.
So, yay, I got a new referral for therapy! I requested something a little more specific this time and I think I may have got it.  I went in for my eval and she was incredibly positive.  She didn’t make any promises but she said she sees a lot of potential.  She thinks my spasticity can work in my favor (never heard that one before) because flaccid muscles leaves little to work with.  At least with tightness you can do a deep tissue massage, work the joints a little and next thing you know, you can work with it. Every therapy session I’ve ever had begun with some sort of stretching but no massaging and I heard massage therapy can help with one-sided weakness.   Then she said she’s going to help me see about the Bioness system. I’ve had other therapists bring this up but one would not be working with me long enough to try to get it for me and the other was just a really horrible therapist.  This woman had never heard of it before (slightly concerning) and was immediately interested in it.  She actually did her research on this which is impressive for anyone that works in the healthcare industry.  Usually they have someone else research it and they then read what the assistants gathered for them.  I’m only mildly informed on the Bioness system and others like it.  Bioness seems like the most intricate as it targets multiple nerves and muscles; it’s more than just a band unlike the WalkAide.  From what I gathered in previous searches, it’s best if used in therapy though it’s not designed for just that purpose. With the help of a therapist it’s possible to use the system as an assistive device to help retrain muscles, possibly even atrophic ones.  My left leg is ridiculously thin with very little muscles meanwhile my right calf appears equal to the Hulk’s.

  When I came home from what I felt was a successful eval, I went straight to Facebook. I’ve had therapists ask me questions and nod as if they understood the point of my answers and concerns but rarely would I get any type of feedback.  This woman listened, added, took away and provided information I could understand with each statement I made and question I asked.  She made me feel like more than paperwork on her desk and this is an important factor for a patient/doctor (healthcare professional) relationship.  I posted my positive review of my eval and then mentioned the Bioness.
So there I was, thinking of how great it would be to have the Bioness system and a therapist that is still committed to her job to help me with my left leg; I’m innocently posting about these things and my joy while mentioning my hopes are only allowed to get so high for self-preservation purposes.  There’s a decent amount of ‘likes’ some positive “good luck!” comments in there and then this one chick, Toto; we met through a FB support group for parents that survived stroke.  She’s pretty bad off but I don’t think she really knows it just yet.  She doesn’t realize that she doesn’t talk very well with her speech or overall communication.  It’s not just aphasia or facial paralysis but this inability to speak with a cohesive structure; she rarely makes sense and holy wow is her typing simply awful! She drives the grammar Nazi in me batty! I make the same mistakes as everyone else but this chick…I don’t think she ever proofread anything that she posts. Right away she’s telling me the Bioness sucks, Medicare and Medicaid both don’t cover it and it’s a huge waste of time and money and she bought one out-of-pocket and it just doesn’t work.  Well, I’m not an insurance expert but I’ve been on state insurance three times (this makes three) and I’ve been following the PPaACA and all that comes with that since I was taking a health insurance class just before my stroke (2011).  Like gun control, I think people forget that every state has their own set of regulations, guidelines and laws.  There’s different barriers and loopholes that vary by state.  The federal government only sets the minimum while each state has the option to raise the bar or keep it at the minimum.  I live in Texas, we try to keep everything provided by the federal government at its minimum (except big company tax breaks and subsidies amirite?!).  But even in Texas there is a little more leeway when it comes to loopholes and what can be done for people in situations such as my own.  Also, your level of disability, your doctors and therapists recommendations, your social worker and other reps working on your behalf all have their own significant roles in deciding what can be done for you.  Toto doesn’t understand that so I ignored her.
I’ve been accepted as a candidate after going down the checklist from the Bioness rep.  Everything looks good so next month I go for a demo with the rep.  Toto didn’t even know they did demos (I assume because she was not a candidate for the device) and if the demo goes smooth enough, their rep will help get my insurance to cover it.  Toto is right, Medicare does not cover Bioness for stroke patients, only spinal injuries but with Medicaid there are loopholes.  I have yet to find out what these loopholes are but I’m willing to wait and find out.  Hopefully I get it and can start therapy using it.  That’s the other thing.  Toto got hers for daily use, I want mine to use in therapy.  I am very limited in resources with this stupid Medicare therapy cap.  Luckily, this therapist actually knows her stuff and wants to help me map out the best care possible. This also means waiting for therapy to find out about Bioness and my insurance.  She doesn’t want to waste anything and it’s awesome of her to put thought into it.  I’m more positive about all of this than I should be but I really can’t help it.  It’s not the Bioness that has me excited but having an actual therapist, something I haven’t had since I was in inpatient.
I’m just going to continue ignoring Toto and her ignorance.  Maybe I will have more success with it and as I post my experiences with it she will reconsider.  I’ll have to wait and see how it works for me, if my insurance will even cover it.  I hope Toto is wrong on all fronts.

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