In typical fashion, in the blink of an eye things can
change. I had called my hematologist to see if I could get an appointment to go
over everything that has been happening because all correspondence has been via
messages on the patient portal between me, the doctor and the physician assistant;
The physician assistant is working remotely and the communication just isn’t
there. When I called I found out that I have to have my blood tests done at big
barnes on Friday because the genetic testing has a special form that has to be
sent out with it that the physician has to sign. That is happening tomorrow at
1:30. Unfortunately, it takes 2 weeks to get the test results back and I cannot
get any appointments with her until September 4th I get a phone call
appointment to discuss results.
I have had to be off of my MCAS medications for days now and
I feel pretty horrible right about now all of my symptoms are flared and my
blood pressure was all the way down to 70/40 when my home health nurse came
this morning. I am also mildly anemic and it is slowly getting worse so the
hope is this new testing will reveal something. All of these tests are being
done by the blood cancer specialist because the cancerous form of MCAS has not
been ruled out and we have to figure out the anemia situation.
However, As far as the next step for the treatment of non-cancerous
MCAS goes I have been trying for about a month to get a referral to an
allergist and immunologist at SLU who would address this as a whole but they
require a referral, preferably from the physician who first suspected MCAS and
found the symptoms. That would be the electrophysiologist. Welp, they refuse to
do it because only primary care doctors do referrals, in general referrals are
due to insurance thus only primary care does for some reason but this is simply
a doctor to doctor referral where they want a note of why I need to see the
allergist and my medical records. The allergist said it can come from ANY
physician. I have spoken with about 10 people from the electrophysiologist and
some say they will pull it together and send it while others say that it can
only be done through my primary care. Nobody is listening to me or actually doing
anything so I will be calling the director of the entire company to figure out what
the deal is.
In the meantime I called my primary care to see if maybe
they would be willing to do the referral because I feel like after a month of
trying to get the electrophysiologist to do it, it’s just not going to be done
through them. I explained everything and was put on a 20 minute hold where they
came back and said because I haven’t seen the primary care doctor for so long I
am no longer considered a patient but they pulled a string to help me out and
convinced a physician assistant to see me on September 9 but I have to make
that appointment and then from there we will have to figure out what to do
because like I said I now fall into the “new patient” category BUT my physician
is no longer accepting new patients so, I could be without a primary care at
that point.
I would be lying if I said I wasn’t really struggling right
now. I’m feeling worse than I show since being off the medication but hopefully
when I resume it after the blood is taken tomorrow I will turn a corner. It’s
hard not to feel like it’s one thing after another and just when things look up,
I get knocked back down. I am on hold Still waiting to see if my bone marrow is
“ok” or not. I am on hold in with the MCAS concrete diagnosis/treatment for who
knows how long because I have to Lord willing get this referral sent on September
9th and then with specialists it can take even months to actually
get into see them as well.
So, I wait. I can’t help but grieve what I dreamed my life
would be like. It’s lonely, I am not healthy enough to do work or go to school,
my days are spent doing nothing by myself
because people have jobs and family’s. It feels like I am existing, not
really living. All that is keeping me fighting back is I know what is true, God
has a plan, I may not like it but it’s there and no matter how hard it is to
see through the fog, I know it is for my good and His glory and that is enough.
I may not feel it but I know it. So you just keep fighting because it is your
only option.
