Not for the faint of heart...

Dysautonomia is not for the faint of heart.  Neither, probably, is this blog entry.

Yesterday was such a terrible day, one of those days in which you wished you lived in Florida so that there was a very real possibility of a sink hole swallowing you up and ending all your battles.  Incidentally, I have no clue why anyone would buy a house in Florida.

From 9:05 AM until 4:18 PM, I battled to get my Celebrex refilled.  And I very nearly lost my mind in the process.  Of course, maybe I already have lost my mind and just haven't realized it yet??

You see, I have worked and worked and worked to make my prescriptions less of a battle for me.  And yet it seems that no matter what I do, some part of them always are.  I have a 3-Part Plan for prescriptions now, not that it has helped me: 1) Bring my formulary to any doctor's visit to see if we can choose a medication that does not require an authorization.  Or, if one is needed, to get the authorization started before I leave the office and discover that I need one.  2) Before coming to an appointment, check with Target and my bathroom cabinet to see which prescriptions are in need of re-fills, since I now see my GP every 8 weeks.  3)  Start annual renewal of authorizations on January 2nd so that they are ready by the time I need my first re-fill in the new year.

I checked with Target.  I checked in my bathroom cabinet.  I made a list of refills and handed it to the nurse straight off, when I went to my appointment on the 5th.  The nurse told me that all were re-filled and my appointment summery reflected that.  When Target received the prescriptions, one of the pharmacists called me to say that in changing my theophylline level, the GP's staff sent over a prescription for the old brand ($1,000 capsules) instead of the new brand ($10 tablets).  The pharmacist sent over a fax of the proper prescription, and I sent over an email telling the staff why the prescription was necessary.

When I called before leaving to fetch my prescriptions yesterday morning, I learned the Celebrex had never been sent over.  The pharmacist sent a fax to the GP's staff. I sent an email.  The staff declined it, saying I still had re-fills on my old prescription and therefore did not need one.  I could give you the blow-by-blow, but HOURS of back and forth finally forced the GP's staff to notice that the last prescription was written for pills not days, which made it 3 months short of what they thought it was.  A new prescription was sent to the pharmacy.  But the battle was not over at that point.

The insurance company would not fill it.  My authorization is valid through the 31st, through the end of the year.  The pharmacist called my insurance company, then the authorization department, then my GP's office, which was now "gone" for the day (meaning no more answering of phones so as to finish up their work).  I called the insurance company. I called the authorization department.  Then, I called the pharmacy management company for my insurance, finally remembering that Envision RX is who you have to deal with on problems, not the insurance company.  The bottom line, Celebrex just went generic, so my insurance company automatically requires that it be filled generic, but the generic is not on the formulary so I cannot have the prescription filled.  At 4:18 PM, the pharmacist finally got a code to override the order and it was filled.

I drove to Target.  I discovered that my small zippered pouch with all my cards was not in my purse. I drove home.  I discovered that my pouch with all my cards was not on the counter where I thought I left it when I got it out to call the insurance company, but was actually in my pocket where I had obviously stuck it as I passed the counter walking out the door.  I had actually had it with me the first time I drove to Target.  I drove back to Target.  At 5:35 I finally arrived home with prescriptions I should have been able to fetch over eight hours earlier.

You see, even though I told the staff I needed re-fills, they did not believe me.  This has been an on-going problem with my GPs new office staff.  They do not believe me, there are errors in the electronic records that keep going un-corrected, wrong prescriptions are sent, and I constantly have to call and email with regard to prescriptions.  I get lectured about using my appointment time for prescriptions instead of the appointment times of others, but no one acknowledges that I am actually doing the former.  The errors are not on my part.

Yesterday, at one point, two of the staff gave scathing lectures on how people in my condition need and usually have someone to manage their prescriptions and help with their care (one written lecture, one verbal).  I wanted to scream and shout and maybe even punch someone in the face. I wanted to jump off a bridge. I wanted to never take another pill or go to another appointment again.  I DO NOT HAVE ANYONE TO HELP.  AND IF I HIRE SOMEONE TO HELP THEN I WON'T BE ABLE TO PAY FOR MY PRESCRIPTIONS AND MEDICAL CARE.  Why should I be punished for that??

I try.  I talk with the pharmacy staff. I talk with the GP staff. I plan and schedule and ask for what would help each.  I have notes and reminders and alarms and checklists, but the battle remains.  The problems remain.  And I am viewed/received as/criticized as a problem, as one who always makes more work than need be.

For the record, I repeat:  Obamacare has made my medical life far, far, far more difficult with all the regulations my GP has to deal with regarding electronic records.  And, with regard tot those regulations, the patients are the ones who bear the fall-out for the headaches and battles the staff have to face in trying to follow them.

Give me a bloody paper prescription and I could at least compare it to a written list and check that everything is right before I leave the office.  But, no, electronic is somehow better.  Of course, now that the anxiety medication is a controlled substance, I have to take the paper prescription to the pharmacy in person, hand over my driver's license for it to be entered, and then hand over my driver's license again each and every time I pick it up, both times so that two pharmacy staff can verify who I am.  SIGH.

I asked the insurance company, the authorization department, and the pharmacy management company how I am supposed to continue to get Celebrex if the formulary is not going to change until 2016 for the generic.  I mean, Celebrex is on my formulary. I should be able to pick it up regardless of the generic.  No one had an answer to the problem: default settings in the computers for my insurance plan ... settings that do not accommodate changes mid-year.  SIGH.

I wept so much yesterday that I actually moved beyond tears into this weird state of dispassionate euphoria.  I think I could have walked into a burning building to rescue Amos without any feelings or worries or ... thoughts.  I mean, at that point, all I could think was that worse was always going to be around the corner so fight the inevitable.

During that prescription battle, I was also engaged in fierce combat with the sewing machine.  It took me FIVE BLOODY HOURS just to thread the stupid thing.  Winding a bobbin took an hour because one of the steps was left off the video and the directions.  You cannot wrap the thread around the bobbin and then around the cutter and then move the bobbin against the spinner and expect the thread to not come unwound UNLESS you press down on the bobbin to trap the thread that you have wound before you cut it and move the bobbin against the spinner.

That was bad enough and I thought the worst was behind me, but the battle to get the machine threaded was enough to make me want to chuck it off a bridge.  Or myself. Or us both.

There are five steps in the video and on the machine to follow.  Threading the machine, however, takes six steps.  I watched and watched and watched the video and then many others, trying to see what that sixth step was.  It had/has something to do with a tiny little guide actually on the needle holder contraption thingy that is NOT numbered like every other step on the machine, but behind which the thread must be placed.

Using the automatic needle threader was a mere twenty minutes of a learning curve by comparison.

For twenty-five minutes, I kept trying to force the finger power button to be the needle up button because I could not figure out the symbols.  The finger power button does not work when the foot power pedal is attached, so all you get are errors.  And the needle up button does not work if the sewing foot is lowered.  Practically the entire day went by before I could even start my attempt to actually sew something.

I seriously do not know why anyone in the world would actually want to use a sewing machine.

Remember those scraps I have?  Well, apparently I down-sized them.  I had absolutely nothing to use for practice.  So, I decided to use the curtains in my bedroom that I had "hemmed" with stitch witchery.  Because I had done so, I could not wash them.  By actually sewing them (after much trial and error) I was able to pop them in the washing machine.  I also washed the curtains from the guest suite just in case, being all cotton, they were going to draw up when washed in the future.

Yes, that means I have never washed those during all the times I gathered up the curtains around the house to clean the dust from them.  I am rarely ever in the guest suite so as to keep it pristine (including the vacuum patterns on the carpet) for next use.

Washing all cotton curtains means that you have to dry them and then iron them before you can try to work out the math to short them.  While they were cleaning, I worked on hemming the airing porch door window curtain.

See that nice, three-inch hem?

I wasn't able to replicate it because my measuring was first too long, then still too long, then still too long, then two short.  Four cuts later, I only had enough for a two-inch hem.  All the other curtains in the solarium are pushed to the side to frame all the windows and let in the light. I would rather this one be split and pushed to either side, but I don't know how to do that and sew where I cut on the curtain pocket.  I think it looks better than the whole curtain looped over the rod, but not all that much better.

When I washed, dried, and ironed the curtains in the guest suite, I discovered that they were old and fragile and had little holes here and there.  I handled them, thus, with kid gloves.

I had decided that I wanted to have the little gather up top, instead of a straight hang, so I worked a very long time to figure out the math for that.  Finally, I decided that adding a half inch to accommodate the change would be enough.  It was not.  SIGH.

The opening is 56 inches.  I thought 56.5 inches of length to the curtain would be enough since it is a thin curtain rod. I was—as I usually am when it comes to measuring—wrong. So, my error in math means they are a bit short for the opening.  After much internal debate, I ended up making the other curtain the same height as this one so that they looked the same in both window openings, instead of one being a tad short and one being right.

I do think that this curtain-fixing-job is far better than my first attempt (the airing porch door window).  However, clearly, I cannot cut straight if my life depended on it.

Not even the use of my grandmother's sewing measuring tape helped overcome my utter inability to measure things correctly.  The latter is a distressing lack of skill that has long plagued me as a home-improvement DIY gal.

Amos did not like being away from me all day, and many times jumped up and down in front of me until I stopped and held him for a while.  He also went and fetched the blanket I keep in the kitchen to wrap around myself whilst waiting on him to do his business and a few of his babies and created this resting place for himself right near the ironing board where I was standing a lot.  He did not make it by the sewing machine, I suspect, because of the cords.  Amos is afraid of cords of any kind.

[You can see that during Gorilla Baby's many surgeries, I had to amputate the majority of both his lower legs.  But he is still much loved.]

I stopped battling the stupid sewing machine around 11:00 PM, gave Amos a bath since I used my bedding to make up the rest of the load to wash the curtains), and held my sweet-smelling, swaddled, snoring puppy dog for a couple of hours before heading up to bed.

I really did hope that someone would break into my house and steal the sewing machine whilst I slept.  Sadly, that did not happen.  I am girding my loins to try and tackle the curtains from the servant's quarters.

Early this morning, I battled one of the many "joys" of dysautonomia.  I awoke in great pain and nausea.  I knew immediately that I would be up for a while.  You see, my blood pressure was tanking, my heart rate climbing, and the nausea crashing over me because something in my intestines was pressing on that damn mal-functioning vegus nerve.  Plus, this was going to be one of those days where I would also battle the pain of something pressing the wrong way on the scar tissue I have from my childhood.

It is hard, very hard, not to fall into the abyss of despair being so ill and in such pain, knowing that there is nothing you can do but endure.  You have to endure the passing by—from build-up, to height of symptoms, to their falling off—knowing that the same will come again shortly when you actually are ready to go to the bathroom.  A half hour, an hour, two or three.  It is random, or rather it merely depends on how close to the end of your intestine the offending bulk first irritated your Rat Bastard of a vegus nerve.  And, if you endured my childhood, the second part not only has the "joy" of the blood pressure plummet and ensuing heart rate skyrocket that is bodily functions dysautonomia style, but also the searing tearing of flesh that is a result of internal damage from sexual abuse.

Damage that may or may not be correctable.
Damage that even your surgeon hesitates to tackle.
Damage that most likely will remain un-corrected because your neurological disease causes your body to struggle mightily with sedation.

Amos is such the soldier, rudely awoken from his own slumber by my weeping and writhing, and yet remaining at my side the entire time of both battles sparked by the failings of my body ... and mind ... and spirit.

Michelle, being Australian, when talking about battling illness and fainting whilst engaging in bodily functions, always references "the loo."  I think that term is better than "toilet."  "The loo is my arch enemy" sounds ever so much better than "the toilet is my arch enemy."  "Spent hours on end with my best friend the loo."  "You know where to find me if looking:  plastered to the floor by the loo."  Really, is that not better?

After both battles, I managed to fall back asleep before Amos suggested that we both get out of bed so he could tend his needs.  We did. I ate lunch. Amos cleaned my bowl.  I built a fire.  And, whilst I would rather the distraction of sewing math than the thoughts in my head, Amos and I are ensconced in the GREEN chair.

These are going to be hard (there are two curtains on the rod since the fabric is so sheer).  The hem line is just below the window ledge.  So, I either have to figure out how to rip out the existing hem stitches on this very fragile lace or how to do the math to shorten the curtains from the top by making a new curtain pocket.

I would like to do all that thinking instead of facing the thoughts in my head.  Thoughts about all the losses from dysautonomia.  Thoughts about the loneliness of having no one to help with this journey of chronic illness.  Thoughts about the embarrassing and devastating effects of the neurological disease that I have to face nearly every single day, since the bodily function of expelling waste is not something you can avoid.  Thoughts about the physical wounds that are a constant, brutal reminder of sexual abuse that I can never escape.  Thoughts about how there is no one to share that journey either.

On her blog, Michelle has written about how dysautonomia strips away the bits and pieces of your life and your identity, remaking you into something difficult to face.  It is a disease not for the faint of heart.  And it is an isolating one, because so many of its facets are ones that either incomprehensible unless lived or too uncomfortable for others to bear.  Plus, its passivity makes for difficulty in relationships, for you are oft unable to do things with others and others are unable to do things for you.  Well, they cannot fix you.  And the doing that is helpful is not seen as helpful by others.

Isn't that the weirdest thing?  The truth is that if someone else doesn't believe a thing is helpful for you, he/she is most likely not to do it ... most likely not to help.

When giving Amos a bath, my broken eyes were close enough to the tub to see that it is in dire need of being scrubbed.  Having fainted enough for one day, I do not plan to scrub it.  But I want to remember the need so as to try on the morrow ... or the day after.  Five minutes with a sponge and comet for the average person is but a moment of less-than-desirable labor.  For me, it is labor I'll count the cost for the whole day or even longer.

I'm still paying the piper for the internal (both literal and figurative) battle from this morning.  Being the wimp, I'm not willing to take on anything else.

Funny.  Dysautonmia is most definitely not for the faint of heart.  How ironic is it, then, that such a weak and broken one as I must face it.

I did have one bright spot yesterday:  the arrival of my new "memory system" for feeding Amos.  It grieves me to admit that I have been struggling to get him fed twice a day.  The magnet will both help me remember that he needs two meals and whether or not I have already fed him.  I can forget the latter in mere moments.  The odd thing is that whilst Amos gives no indication, upon receiving what is most likely to be a second meal, neither does he note that he's missed a meal.  I'm fairly certain that my little piglet has lost weight.  A pound or three would be good, since he's a ginormous version of the bichon poo, but regular meals are as important to him as to me.

I'd be lost if my inability to remember the feeding of my beloved fluff ball meant that I could no longer keep him.  The fear of that has been weighing on me lately, nearly making me insensible in the best of times.  Seriously, where would I be without the one created being on earth that is willing to walk this difficult journey with me?