I cannot get well.
I CANNOT GET WELL.
I'm trying so hard to get well, it's a full time job.
Mike jokes that I'm an expensive employee
(and insurance doesn't like to cover most of
my treatments, big surprise!).
A doctor or therapist appointment every day of the week.
My arms look like I'm an IV drug user,
hematomas, bruises, they are horrible looking, it hurts to bend my arms.
The treatments help for a day or two
And then I crash and
the pain in my chest comes back.
My body is hot, then so cold,
I have a migraine all the time that no medication seems to help,
I can't think.
no short-term memory,
fatigue, I can't even shower (lucky Mike).
I finally got a longhauler test (PASC is the new term, yay it has a name).
My levels are horrifying.
They have a PASC index, so you can see where you fall within the range of abnormal/normal.
Anything less than a 5 on the index, you have PASC.
I came in with a score of 1.6. So, it's official. I have a documented diagnosis.
And now no one knows what to do with me, I have no long term treatment plan.
They say it will take years to figure out how to help us.
A test, but no next steps.
Bandaids, immune boosters, and then the crash.
Harper brings me a Kleenex to soak up the tears coming out of my eyes.
They know the symptoms, and want to create a drug for each symptom,
since everyone is different,
all PASC patients have different symptoms.
How many drugs will I have to take?
So many issues with the FDA around treatments other than drugs.
(Don't even get me started on this topic)
When can I be normal again? When can I be a wife, friend, family member, and parent?
When can I stop having to depend on everyone to help me every single fucking day?
When can I walk the dog without being certain that I'll have to pay for it
the next day, pay the piper, knowing I'll be in bed?
The piper is rolling in dough.
Will I ever be able to work again? Do I even qualify for disability?
(I know the answer to that and so do you)
I'm in this in-between place, the waiting place.
I've handled it ok up until yesterday, I think.
Then I started just getting mad. Going through my medical records,
piecing together each day since March 15, 2020.
So many times I asked for help. Western medicine Doctors just shrugged.
Tests I requested, denied. Shrug.
My naturopathic community has been a Godsend.
But they are limited in treatments they can offer here, what they are allowed to say
what they are allowed to recommend.
I asked a group of PASC friends yesterday if anyone has totally recovered?
Only 1 person said yes, out of over 150 people that responded.
Many have had this longer than me.
Some not as long, they are asking us long-longhaulers how much time it will take to get better,
all we have to share is bad news.
I worry about the people that are giving up.
We are all in the waiting place.
433 days of this for me.
I know, I'm lucky, I am alive.
I have people that love me and support me.
But I am DONE.
I'm done waiting.
An angel reached out to me today, and has a treatment
that works for her, so it might work for me.
I'm following the thread.
(I have been following all the threads)
At this point, I will try anything.
It might even cure my life-long insomnia.
I might have dreams.
Of course, it's not FDA approved, so I have to go to another country to get this treatment.
Probably multiple times.
The irony (isn't there always irony) is that it is cheaper to do this
then to continue with my regular plan, medications,
doctors appointments that insurance won't cover.
We're trying to afford keeping me in treatments, but I am not working.
I cannot work.
I blew through my FSA and it's only May (rhyme, so this is poetry instead
of me bitching, you are welcome readers).
This is the life of a long-hauler,
but it is also my life.
And I am going to fight like hell to get it back.