If I could change one thing...

It would be those in agony of spirit are not left alone by the church or brothers and sisters in Christ or neighbors or family or ...

I said this day would be hard.  To many.  I said I was afraid.  Afraid of the pain of the appointment.  Afraid of the shame.  Afraid of my weakness.  Afraid of myself.

I said it.
I blogged it.
I posted it.
I messaged it.
I texted it.

No matter.
I was still alone with the agony of this day.
Not a word of encouragement, of prayer, of the Gospel.

I should have expected that.  I was alone with other ... days.  Even so, I was caught off guard.

The pain was so hard to bear the doctor was counting down for me in a very loud voice.  The failings of my body is so often cruel to me.  Nerves making things already hard for me nearly impossible.  But it was more.  My doctor asked about my father's history of something and I started wailing.  Wailing. Oh, how I was caught off guard.

I tried.  I tried to manage how I felt and the lingering pain and the unexpected question and all that arose from that by getting my blood draw done and trying to schedule the three referrals and the mammogram. Only it took nearly an hour to understand where I could go for the latter and then when I tried to schedule an appointment for the thing that would be nearly as hard as this day, I couldn't.

I couldn't because they wanted to know about my history, which has a bit of bother in that area, and so wanted to know the date of my last one and where to get my records.  The woman on the phone asked if I had one here.  I don't know.  Surely.  For a while they were three months and six months apart.  Surely.

I don't know.
I don't know.
I don't know.

I tried to give the place in Alexandria, so my records could be sent, but it wasn't in my phone.  I have all my older doctors in there and all the facilities.  I have been systematically adding them. I even wrote the imaging center a letter when I was applying for disability since all medical records were somehow necessary.  Yet the address, the information, was not in my phone.

It wasn't just that I don't know, but that I struggled to answer questions.  Is this a normal screening?  Yes.  No. I don't know.  Do you have a history?  Well, yes.  At one point I was sent to a surgeon.  Then, suddenly, after all that bother, the imaging was nothing to worry about.  Two years?  Three?  I am not sure.  I know the name of the surgeon I saw ... because she was kind.  Very kind.  A woman who did not mind a quivering patient, a teary patient.  I know, though not when, that the first imaging center I was at abruptly went out of business so all my ... bother ... was transferred to another one.  And I know the last time I was there I threw up in the parking lot trying to face the fear and the shame.  The overwhelming, all consuming, blinding, bewildering, crippling shame.

But was that the last time?
Did I have one here?
Of course I would ... wouldn't I?

I don't know.

I don't know and I couldn't explain.  And I couldn't explain that neither the surgeon or my regular doctor probably didn't know any of that because I probably had never brought it up.  Even with my family history.  That was then. I was trying to face the now all those months where I was trying to utilize the last of my insurance.  

I couldn't understand what the medicare insurance woman was saying and then the imaging center personnel I ended up contacting couldn't understand what I was saying.  In my head, there was sense.  But that sense could not come out my mouth.

That happens more frequently.  Of late.

I could not schedule the other appointments, for one because, somehow, I can see a doctor if I drive to her office in another city, but I cannot see her at her office here in town.  I do not understand that.  The next was a general referral; I have to choose a cardiologist.  How do I choose?  How do I find one  who is familiar, to some degree, with Dysautonomia and how it impact cardiac function? I know it should be an electrophysiologist-cardiologist, but even then there are no guarantees.  I just don't have it in me to go through doctor after doctor after doctor, as I did before my insurance ran out here.

I said as much, when my doctor today asked about the reactive hypoglycemia.  I told her the third endocrinologist I saw flat out said he could not help me because he could see Dysautonomia was affecting my reaction to my blood sugar levels, but did not know how or know what to do ... other than to keep taking the drug I use.  Thus, the referral to the out-of-town doctor who is, actually, practicing on the floor above, I believe.

The cardiologist referral came promptly after mentioning the POTS episodes and the increasing shortness of breath.  When she asked why I didn't have one here yet, I started weeping again.  I tried.  I tried for 18 months of COBRA.  I tried to find help.  But medicine is NOTHING like it is on television.  There are no doctors out there who welcome challenging cases, who will stand by your side and fight for you, leave no stone unturned. Spend 5 minutes reading Dysautonomia forums and you will see that.  But even before that wretched diagnosis.  Malaria.  Tuberculosis.  Both come up on my chart and become problematic.  That was then.  I care about now.

The surgeon said that she wished for a better quality of life for me.  She meant it.  Though even she said she was not sure I would find it ... medically.

I tried to make it through this day ... unscathed by my own flesh.  I did not.  Not by my hand. Not by my mind.  Not by my emotions.  And not by my body.

After the long day, after my failures, a migraine.  I shut down, taking the meds and turning off light and sound.  But when that began to ease, the innards writhing began.  The swelling, the pain, the rolling around on the tile floor, wanting to badly to let Amos near me, but unable to even bear the touch of cloth on my abdomen, much less the attentions of my puppy dog.  I whimpered.  He whimpered.

I am, thankfully, on the down side of the writhing.  The swelling is diminishing, though I still cannot bend my torso without terrible pain still.  I am, thankfully, belching fetid gas and signs are that the foul food left too long in my stomach is moving on ... a different sort of agony for later.  But between now and then a bit of respite.

And, hopefully, some sleep.  In a few hours ... when my innards finish ... punishing me.

I do not mean to twist Scripture in a way not intended, but, to me, I feel like the poor man, lying in the doorway, covered with boils and begging for scraps.  Scraps of the sweet, sweet Gospel that are so oft elusive to me and yet others seem to have in such abundance.

And, it seem to me, that sores born of an agony of spirit or anguish of the mind are somehow more offensive than sores born of more understandable things such as a known illness, the death of a believer, a job loss, a large home repair, or some sort of disaster.  Sores of addiction, sexual abuse, mental illness ... those, well those you walk past.  Yet the same Gospel is balm to all sores.  The same Gospel will sate the hunger, sustain the needs, of all wounds, all illness, all loss, all anguish.  

I thought that being brave and bold and honest and vulnerable about this day—this that day is still going on for me long into the night—I would not be alone.  I was wrong.


I am Yours, Lord.  Save me!