Day Four and then some...

Day Four.  SIGH.

Day Four, all those days ago, was another day of disappointing medical news that I just couldn't take. I mean, I made no progress in the testing.  The next step was another high resolution chest CT and a whole lot of scary IFs to consider if the CT did not show progress at least.

I worried over the IFs right up until I read the report, which was actually not bad news.  But I remain in a holding pattern over the next steps.

The rheumatologist wants to put me on immunosuppressants.  The pulmonologist will need to switch me off of steroids and she mentioned an immunosuppressant.  The rheumatologist wants to know what the pulmonologist is going to do, because she can piggyback on many immunosuppressants.  But she also wants to know what the neurologist is going to do.  However, I am in yet another holding pattern for the BLOODY MRI.

Yes, that spiel that I got from the cardiologist about the radiologist finally agreeing to the MRI seems to have hit some sort of snag since he has been "talking to scheduling" for nearly a month now.  Without the MRI, the neurologist would then make a "best guess" as to which direction to take.

The thing is, I've started to have fluctuating days with the shocking in my hands.  My GP and the neurologist both think that is because of the duloxetine.  However, on the bad days, the shocking in my hands now extends up my forearms.  In other words, it is getting worse.  And we are mere days away from marking the year anniversary of the start of this bit of misery in my body.  SIGH.

So, right now, I'm still on steroids.
And I'm holding my breath on my kidneys.

I'm two days away from taking a micro-urine test for protein and more kidney blood work.  The former is because a cruder test during a physical last week showed protein in my urine.  That's bad kidney news.  I cannot be having bad kidney news when I am almost a month into giving up Celebrex AND drinking between 80 and 100 ounces of water a day.  [I REALLY dislike drinking water.]  I am supposed to be having good kidney news at this point, especially since I WANT THE BLOODY MRI when and if it ever gets scheduled.  I am fearful of those kidney results, at this point ... but I am not going to put off checking the way that I first thought to do so.  I need to know.

So, after Day Four, I was discouraged and worried and plumb exhausted.  Plus, my planned rest from the 20th until October 2nd got interrupted because I needed to do the CT that following Monday and then the physical on Tuesday.

Tuesday.
Tuesday.

I am trying to find another way to volunteer.  Eons ago, I was a hospice volunteer, so I thought I would look into doing that once more, even though the training is much more involved and I wondered if I could get it done.  The position I would like to do is vigil volunteer, which is someone who sits with those who are actively dying and who do not have family or friends to be with them.  However, I kept missing the training opportunities once I decided to try.  Finally, I decided to not let another month go by no matter how many other things I had in the week the training was scheduled.  The training is what I did on Day One of that bloody long week.

It was not until I had officially signed up and having already sent in my application that I learned I would have to have a physical to be a volunteer.  This is something that was new.  As in ... if I had gone through the training any time before September, I would not have to have a physical.

I almost skipped the training session, but I decided to at least get part one out of the way.  Who knows ... maybe I couldn't even hack a four-hour session and that would be the end of this journey.  Alas, I gutted my way through the end of it and managed to get back home where I could collapse for a while.

After much thinking, and determining that I could have a female doctor, I decided to make the physical appointment and go from there.  If I could get through it, then great.  If not, then I wouldn't punish myself because I at least tried.

The registration process took just over half an hour.  I was exhausted before even getting past the first door.  I then had an eye test, a urine test, a TB blood draw, and the first of three shots for a Hepatitis B vaccine.  Finally, I was back in a room going over my history.  It was there that I learned, having been at the location for nearly two hours ... the location that is nowhere near my home ... that the doctor was a male, not a female.

I felt sucker punched.
And I despaired.

I honestly feel cursed.  If it can go wrong, it does.  And no matter how much I try to advocate for myself, to ask for what I need, I do not get it, for one reason or another.

My choices were to leave and come back another day, making the long drive once more, or to stay and deal with the male doctor.  I wanted to leave.  I didn't want to make the drive, especially with the expense of gas and my utter dearth of funds at this point.  I mean, I have the $300 spinal tap bill looming over my head.  I finally decided to stay.

I wasn't ready.
I wasn't ready for a physical by a strange doctor.
I wasn't ready for a physical by a strange doctor who was a male.

Why the silence for the past week?  No Facebook or blogging or reaching out?  Because I feel dirty.  I still feel dirty.  I am drowning in the filth of me.  SIGH.

I do not really want to talk to anyone because I do not believe anyone will understand and I just do not want to hear something that is the equivalent of "if you just go to bed earlier...."  And, frankly, I just do not want to hear about how Jesus was ashamed, too.  This isn't even about shame.  That will come later.  This is about being dirty.  

It doesn't have to make sense to you.  It does to me.  Although I will say that I read recently someone talking about how child sexual abuse survivors are not revisiting their past (and just need to stop doing that), but that their past is their present, is in their present with them.  In a way, it is like that PTSD quote that I posted everywhere that explained that the anxiety is about something that happened in the past, but something that is still happening in the present.  In both instances, the idea is that the memories (or flashbacks) are being relived instead of merely remembered.  Relived with all the trauma happening again and again and again.

I wasn't ready for a head-to-toe physical by a male doctor.

I don't know where to go from here, from this place of utter filth.  It didn't help that the doctor's attempt to put me at ease came across as person and not professional at all, given what he was saying.  And it felt like the same sort of calming words abusers use to try to make a terrible experience somehow better.  As if they are doing you this favor and you ought to be grateful for the comfort no matter what is happening to your body.

I wasn't ready.
At all.

And I feel dirty.
I am dirty.