How...

I don't know how to write on here anymore. I mean, I long to write, but I find the task overwhelming for myriad reasons.  Chief amongst those is the constant grief I battle over the loss of my cognitive abilities, such as the ease with which I used to be able to write and write well.  But, too, is that what I want to write is so very ... mundane.  It is not that I started this blog to pontificate to the world.  It was a gift from a friend who thought I should write about my life.  But now ... what my life has become ... I just don't know how to write.

For example, I am trying to get two prescriptions from my doctor's office.  I had an appointment and discussed the change on one of them with my doctor.  I should have had her send it over right then and there.  But I knew I needed to check my other medications, so I told her I would send her a message with the mail order pharmacy order.

I did.
It was sent to Walmart.
I got it stopped and put back on my insurance account.
It was sent to the mail order pharmacy with an incorrect dosage.
I've been trying to stop that order for over an hour now.

I am alternately weeping my tearless anguish and battling rage at having to fight and fight and fight because people just cannot do their jobs properly.  I have been transferred all around the mail order pharmacy, at one point transferred over to my insurance company who then transferred me back to the mail order pharmacy, which put me back at the end of the queue.

My pacemaker has gone nuts.  My heart is working overtime to frighten me with palpitation antics.  I am weary in body and mind and spirit.  Lately, I have had to fight such terrible battles with medical care and they are battles that never should have come my way.

I sent a VERY clear message to my doctor, whom I KNOW remembers the conversation we had about the change to one of my medications on the 4th.  But a nurse tried to do the prescription and made a mistake because she didn't READ the message, she just clearly jumped on my chart where the local pharmacy always comes up first.  And when I finally got that straighten out and the claim taken off my insurance so that I could have it filled via the mail order pharmacy, the person who tried to send the order over clearly just looked at the name of the drug and did not READ the message that had the change.

But, lest you think that I was not clear in my message, here is how it started:


I said that I would send you a message with the prescriptions needing renewal at OptumRX. At this time, I need just two:

1. Gabapentin 600mg 3 times a day, 90-day supply, quantity 270
2. Acarbose, 50 mg, 6 times a day, 90-day supply, quantity 540

How much clearer could I get?  I even repeated the name of the pharmacy at the end of the message, along with the two drugs and their information again.

I am weary of having to follow up on EVERYTHING that I need done to ensure that it is done correctly.  There have been so very many mistakes with medical stuff, many of them prescriptions, and house stuff and utility stuff.  Those mistakes have cost me money that I simply do not have.  But they have also cost me the burden of great distress and angst and anguish as I battle to get the mistakes corrected.

For example, it took FOUR BLOOMING MONTHS to get my Internet service bill corrected after someone or some process changed my plan without consulting me.  FOUR BLOOMING MONTHS of having to pay more than I owe because if you do not pay the full amount, as I learned when I forgot to add the $1.99 fee increase into my January bill that was being paid autonomically via my bank, you get charged $9.00 late fee.  FINALLY, my June bill is the correct amount on the correct plan and I can start whittling down the credits that I fought and fought and fought to get back.  No one disputed that I was being charged wrongly, but giving customer credits is pretty much the LAST thing Frontier Communications wants to do.  I have wildly fast FIOS service, but oh did their computer system put me through the ringer.  Since the are the cheapest service available to me, since all I want is stand alone Internet, I had to stick out that FOUR BLOOMING MONTHS and fight and fight and fight to get back to where I was in December.

SIGH.

I am weary.  And I am so very sad at what is happening to my body.  I ache with sadness that sometimes overwhelms the chronic physical pain I endure daily.  I am so very sad and so very alone, the only one to face the distressing news as I go from specialist to specialist, the only one to fight those battles, the only one to ...  well ... the only one.

I am weary of worrying about money.  If not worrying, then counting out each and every penny that I am spending and trying to figure out a way to find the pennies that I need the next day, the next week, the next month.  My dear friend Becky and her husband have helped when they can, which overwhelms me.  And it grieves me as a reminder that my parents refused to help when it would barely be a blip on their financial radar.  In comparison, Becky and her beloved have sacrificially given to me in a way that sobers me and makes me think a lot about Jesus.

And then, of course, when I am devastated by my lung news and go out and buy Blue Bell ice cream, I feel guilty over spending so frivolously when I have absolutely no frivolously room in my financial life anymore.

Six months after the distressing high resolution chest CT, I got in to see a most wonderful, delightful, nerdy, attentive pulmonologist.  She promptly ordered more tests and worked me into her schedule after them.  My lung function has continued to deteriorate, although the exact reason she is not yet ready to say definitively, since if it is Sjögren's, as suspected, that's a difficult diagnosis.  For now, it is treatment and testing and testing and testing.

I have started 35 days of steroids, to shock and awe the suspected inflammation that is restricting my ability to draw in oxygen.  Then, testing.  After another week or so, I will be starting four to six months of an antibiotic that is good with inflammation stuff.  The TERRIBLE news is that I cannot take Zofran with it.  I blanched at the news.  However, since I will be taking the antibiotic Monday, Wednesday, and Friday, she said that I could try using Zofran the other days of the week.  I sank at the news of having to battle the violent waves of nausea all on my own, but I was also grateful that she was willing to see if I could take the medication on the off days.  Of course, the interaction that would happen would involve my heart.

SIGH.

The medications, thankfully, are Tier 1 and Tier 2, so one cost $4 and the long-term one I got for free via the mail order pharmacy.  The testing ... well, that will be something doable, but rather difficult to pay for with my meager funds.  I do not know if it will include the extra test she did or the primary three lung-function tests that I've had twice now.  My share of those in the fall was $44.  I have not yet been able to see what the most recent testing will cost, despite my constant stalking of the claims section of my insurance website portal.  I am hoping it will be the same and that is the number I have to work in monthly to cover the testing until my lungs improve.

I'm not thinking about what will come next if they don't.

The neurologist appointment is a whole other blog entry ... maybe two or three ... but mostly it has boiled down in the financial department into hoping rather fervently not to have a definitive diagnosis on the constant shocking in my hands, because that would be the MS flaring once more and the recommended treatment of Rebif Rebidose.  Something that has a ~$62,000 co-pay on my part, since the manufacturer does not have any assistance programs for folk on federal or state medical plans.  I simply cannot take that treatment.

If it is not definitively MS, then the recommended treatment will be immunotherapy.  There is an excellent chance that that might be covered under Part B of Medicare and, thus, be something that I could swing.  The immunotherapy has an excellent chance at helping symptoms of dysautonomia, Sjögren's, as well as the neuropathy.  I am, thus, greatly looking forward to the possibly of helpful treatment.  But, too, I am afraid of hope, especially hope on the neurological front after having been told by three neurologists in Fort Wayne that there was no help for me to be had in this city ... that I needed to go to Mayo Clinic or Cleveland Clinic.  Yeah right ... like that is going to happen.  SIGH.

Anyway, I've been counting those pennies and trying to squeeze in more medical appointments in now six weeks than I have had in six months.  The money and the exhaustion and the ups and downs of them  (mostly downs) and expenses that I overlooked, such as using more gas in a month than I have in the past three months.  All of it.  I am weary and overwhelmed and alone.

And somewhere along the line I have become a patient whose life revolves around pain as much if not more so than revolving around a host of wretched symptoms that are atypical since they stem from autonomic and/or autoimmune dysfunction.

I live with pain.
I abhor pain.
I am trying to embrace pain.
I long to speak of it.
I long to never speak of it again.

I ache.
I stab.
I throb.
I pulse.
I shock.
I burn.
I sting.
I cramp.

My nerves hurts.
My muscles hurts.
My tendons hurts.
My brain hurts.
My bowels hurts.
My viscera hurts.
My lungs hurt.
My eyes hurts.
My throat hurts.
My skin hurts.
My hair hurts.
My joints hurts.
My iliac crest hurts.

Pain is always present.
Pain is inescapable.
Pain is discrete.
Pain is ineffable.

Pain makes me miserable.
Pain makes me weaker.
Pain isolates me.
Pain makes me a stranger to my own self.

I want to die, with my entire being, at least some point each and every day.

There is little that can be done.  There is no cure.  There is no escaping what my body has in store for me, pummeling me in body, mind, and spirit each and every day.  That is my present.  That is my future.  It is brutal. And it is devastating me.

How do I talk about that?  How do I write about that?