Betrayal

So, I am not hurt anymore, but I was last night.  Truly teary-eyed hurt, and betrayed.  I mentioned this therapy in one previous blog post but, only in passing, I think.  For the last 4 months, I've been having electro-pain management therapy by a therapist, lets call her Henrietta.  It has come to our (mine and Tim's) awareness now that she is manipulating me.  A large bill was sent a few weeks ago, at which time I immediately cancelled the next appointment.  I texted that I wasn't comfortable spending that much on the therapy (I hadn't gotten any bill from March until the very end of June, so I didn't know how much it was costing each month.)  Now, let me stop here and mention that this therapy helps me.  It is hard to know how much since life and my condition is so fluid, but it definitely does help me, and without any side-effects.  And, Henrietta is the only therapist of her kind in my city.  There aren't any other choices for me to go see.  So, let me say that I mention that I usually look forward to it, not the bus ride there and back, but the therapy session, yes.

Well, it has become clear that she is trying to bill me twice for my treatment.  There should be no bill whatsoever, or maybe one for under $20ish, but certainly not several hundred dollars.  Her reply to my original text was to call me and tell me that she "thought what was happening was that the billing specialist had not applied any of my co-pays to my balance"  and that she would have them call me that afternoon.  Also, she said she "never wants me to cancel an appointment due to money".I said ok, and I rescheduled that week's appointment.  So, at the next appointment, I was in a crap cognitive state and she didn't mention anything about the bill.  Nor did I.  But, she was very, very nurturing.  She took more careful care of me than ever before.  She even asked me what else she could do for me before the session ended.  She's never been nearly that patronizing before.  Just sort of "kissed my a__".  Which feels like a good thing when you live in chronic pain, to have someone nurture you so much, but it was unusual.

More than 2 weeks went by and the office never called about the large balance.  I texted her asking about it, blaming Tim, saying that he didn't want me having any more treatments until we understood what we owed.  Her text reply was that my copay was $45, not $40, per Shannon, who must be her billing specialist.  I replied, "what about the over $400.00 balance?"  She said, "bring me the bill when you come on Tuesday."  This is no mistake.  This is not incompetence.  This is manipulation of me.  She is counting on me feeling too crappy to have the strength to confront her, which is true.  She is also counting on the fact that this treatment is the only one I have found that helps me, which is also true, which she knows because I told her, repeatedly.   She's been told now that my Tuesday appointment is cancelled.  I offered no reason or excuse.  I feel compelled to do that, because I think it's expected of me, but, I am now convinced by my spouse that it's unnecessary.

She provided therapy that helped.  I have tried many, many therapies that have not helped.  It is covered by my insurance.  It is in a part of town I can actually get myself to and from.   She, and here is where I'm hurt, pretended to care about me and my health.  She advised.  She instructed.  She even scolded to some degree.  But, I felt cared for.  I felt taken care of.  But, I'm really, an opportunity to double-bill.  Nothing more.  So, Henrietta, I am breaking up with you.  I don't have the physical or mental strength to confront her about the issue.  But my spouse does.  And he is taking up the reins.  And I am going to leave it in his hands.  I am going to think no more of it.  Let it go.  But, it is betrayal.  Just because I was paying her copay, it is not any less betrayal.

Grateful that I can even afford therapy like this.  Grateful that my pain isn't so blinding that I'm willing to let her continue to defraud me.  Praying it won't get to that point.

Have happy days, and watch out for yourselves.

My Poor Sweet Little Subconscious

I feel bad for her.  When I am awake and in my knowing state, and have the ability to access my faith, my friends, my family, my spouse, my dogs and cat, I really can say without reservation that I don't have fear related to being disabled.  Honestly, I don't.  But, the deepest part of me might still.  When I dream, I dream of not being able to save myself from something due to the limitations of my disability.  I know that lots of folks dream of suddenly not being able to run when they need to or can't move their (whatever body part) when they want to, and someone is lurking or chasing them,  yadda, yadda.  For me, my dreams are more specific.  I am always in a dire, catastrophic situation and I always cannot physically move my body quickly enough to avoid being hurt or killed.  (Sometimes, I cannot get anybody to help me, despite the begging.)  Last night's dream was new.  I was on a college campus, and one very good high school friend was with me.  I left lunch early, alone, walking with great difficulty with my cane, on my way to the Science buliding.  As I passed by another building, I got about 20 feet away from it when it collapsed on top of me.  As it fell, I tried to move faster down the sidewalk, and I couldn't.  So I dove for cover underneath a bench.  And I did survive the disaster, but I also lost part of myself.  One of my fingers.  So, I am not as fearless as I claim to be, or want to be.  Or maybe the primal part of me is always going to fight for survival and strive for it, even though I am peaceful with the concept of meeting Jesus.  Probably that's a biological thing, just like fighting for air when you are drowning.  I'm tired of waking up thinking, man, if I hadn't been in that wheelchair, I'd have been able to get down the stairs and away from (whatever).  What it really means is that in my subconscious, she knows that I am permanently changed.  I'm not able to protect and save her child-like innocence.  She is at the mercy of what happens, as am I.  She is scared.  I'm not, but I'm awake.  Don't get me wrong, I'm not welcoming death any time soon, but I am absolutely ok with it when it happens.  I love life, and I avoid danger, but I am not afraid of dying.  This life has shown me what faith really is, and how much My Father adores me.  That being said, a whole building did fall on top of me last night.  And I lost part of myself.  And, if I hadn't been disabled, I might have saved myself.  I might not, but, in this situation, I physically could not.  Subconcsious me is a bit sad when I wake up from those dreams.
Grateful that I haven't had any buildings fall on me.  And for the nice, safe, comfortable one I sit in now.
Have happy days.

What I Have To Live With and How I Manage Not to be Scared

Yesterday was a doozy for me.  It began with a lovely morning dog walk.  Both dogs behaved, too, so that’s always a bonus.  I walked with them easily and quickly, and only needed to use my cane at the very end.  It was humid so, we only walked about 25 minutes.  That’s quite a long time for me to walk.  The key is to do it first thing in the morning, before I even feed us.  Got home, got myself ready for my bus ride to my psych appointment.  Had an enjoyable ride, the driver and I laughed and laughed together.  I was in a good mood and had some positive, proud moments to tell my therapist about my life.  Had a nice, uneventful meeting with her, and then went downstairs to wait for my return home bus.  I had an hour to wait.  I ate a protein bar and some quality jerky, took my lunchtime pills, and had plenty of salty hydration, so, I was set.  I have to constantly watch and make sure I am getting both enough protein and enough salt.  I have POTS (Postural Orthostatic Tachycardia Syndrome) and two of the effective treatments for me have been those adjustments, high salt, high protein.  Also, I have hEDS (Hypermobile Ehlers Danlos Syndrome) which is a painful connective tissue disease.  It’s rare, and genetic, incurable and painful.  On top of those, my little basket also holds migraines, Raynauds syndrome, MALS (mesenteric artery ligament syndrome), gastropariesis, some arthritis, and reactive depression.  Oh, and fibromyalgia.  Anyway, I have lived with symptoms of these for about 13 years so, I have learned how to cope and what my body needs and when.  Except for yesterday. 

While I was waiting for the bus to come, sitting in my wheelchair reading, I felt a sudden flushing of my body.  Immediately nauseated plus the feeling of needing to go #2, badly.  (Neither of those happened.)  I felt way too warm, like I wanted to begin peeling off my clothes, but I wasn’t sweating.  I was very confused, very dizzy.  But, the thing that was a bit scary was the profound weakness.  It felt like my head weighed at least 20 pounds and my neck was a few stalks of dry straw.  Couldn’t hold it up.  In fact, when the bus pulled up, I was in the process of getting out of my chair to lie on the hallway floor because I couldn’t sit up any longer.  Slowly, I got myself out to the vehicle, and the driver was jovial, and remembers me as being such in the past, and I told him I didn’t feel well.  He turned up the AC and let me sit quietly.  Kept checking on me throughout the ride.  Got to my home about 45 minutes later, and I couldn’t have stood up to save myself.  That’s downright scary when I’d been walking independently just a few hours before.  Timothy, my husband, was already home from work, and I called him on the way and told him I needed help.  He could hear in my voice that I did and it was serious.  So, he met us at the curb.  I couldn’t lift my bag.  My head was lolling on my shoulders, which is really painful if you have EDS because our necks seem to always be sort of unstable and out of whack. 

As soon as he wheeled me inside, I could feel the drastic depth of my symptoms because, normally for me, just being back in my home makes me feel a little better, if only psychologically and emotionally.  Yesterday, not so.  I had him take me straight to my bedroom, and it was a chore to strip and get into the bed.  (I don’t tolerate any clothes on me in bed.)  By then I had a migraine working.  After I had rested 30 minutes or so, I got up, into my chair, to the bathroom, and then to the kitchen to get a drink, and headache pills, then back to my bed.  All from my chair.  I had to take about 4 steps from the door of the bathroom to the toilet, and those were risky.  Migraine wasn’t the controllable kind, so I knew things were different.  Bad different. 

At that point, I wanted so much to pass out and escape, but I reached out instead.  I got on both of my two support groups and told of my afternoon.  Told of the symptoms, the onset, the results, my safety, my current status.  I was home safe.  With a responsible adult.  But, I still didn’t know what was going on, nor why it happened.  And this very thing wasn’t brand new, it had happened before.  I needed to understand it.  I wasn’t at peace.  I wouldn’t be able to rest peacefully until I knew what was going on.  I knew this.  A few hours after I’d been in bed resting, chatting with my friends about what it may be, the migraine bloomed into a full-rose, and the vomiting began.  This was new and different.  So, now I had to make a choice whether or not to be scared. 

And that’s exactly what I did.  I made a choice not to be scared.  The unknown is terrifying, if you give it that power.  Also, it can be thrilling, if you give it that power.  It’s unknown after all.  Just neutral.  When you’re suffering, you already have momentum on a certain path, and it isn’t good.  It’s only natural to think you will continue on where you’ve got momentum.  Not that irrational to suspect things could continue to feel crappy, and wonder just how crappy they’ll get, and whether you can handle it.  But, here’s the truth.  The truth of my life and what living with chronic illness has taught me.  I keep surviving.  Every single time.  And as long as I have faith that I will survive it, it no longer worries me.  I have deep faith that the one time I don’t survive, if that happens, I will be in the Best Hands Ever, with Christ.   Until then, I reach out to my support system to keep me from panicking.  They jump in with good vibes, and suggestions, and possible triggers.  And prayers.  And I feel loved.  Cared for.  And then, I could rest peacefully.  I could sleep.  After seeking help.  Help is out there. 

This morning is better.  I figured out that I think I was feeling side-effects from a muscle relaxer I took yesterday morning (I tweaked my low back changing the sheets on my bed the day before).  I wouldn’t have even remembered that if not for my friends suggesting possibilities.  So, that’s entirely understandable.  And no wonder my head was too heavy to hold up.  And I can say that I don’t have fear going forward.  I always want to be able to say that, with honesty.  There are a crap-load of events and issues that are entirely out of my control, and then there are even more happening within my skin that are outside my control.  But, if I can control something, even if only my attitude, then I control everything.  Lovely finish.  Gotta go back to bed now.