Good to Have Goals…

And every time I sit down to write I get distracted.  Forgive my attention issues.  There seems to be too much to attend to at once – and I have issues.

I didn’t want to go today.  I didn’t.  But I had to.  Cause it’s time.  It’s actually way past time to address the chronic, throbbing, aching in my legs.  I saw a doctor last summer when I was near the end of my rope.  That was a mess, which ended with me quite sure that a doctor with a staff that obnoxious would never be operating on me.

end of my rope

And, maybe it was for the better.  Because I never felt quite right about him anyway.  So I pulled myself together and I went to another doctor.  A second opinion.  This one was worried about an abdominal aneurysm, which thankfully was not the case, but at least he paid some attention.  “You need a CT scan,” he said.  “I need to make sure nothing vascular is wrong in your abdomen triggering all these veins to go bad. ‘ (I’ve had 7 addressed so far.)

I explained that I should only have CT scans when absolutely necessary.  I told him about the radiation risk, which is especially dangerous for those of us with a PTEN mutation when cells can misbehave and develop into tumors of all sorts with ridiculous frequency – especially when provoked.  I even explained I was allergic to CT contrast dye.

I was sent for the scan – premedicated for the allergy.  Left only to pray that the radiation minded its own business.  And the report came, and there were unsettling omissions – like checking the box that my ovaries and uterus (gone now since May 2012) were doing fine, and ignoring the large tumors being carefully watched on my spleen, and the cyst on my kidney.  I was bothered.  The doctor called to go over the report with me but didn’t have my chart and couldn’t answer my questions.  I had the report amended.  I tried to find someone else to read the disk.  I thought I had struck gold in November when a doctor took an interest in our case, but that – like all other things – was not to be.  So I waited a few more months.  When January came and I was pretty sure Meghan would not be using the February week for surgery, I called to schedule mine.  It was time to get the vein removed – starting with the right one.  Triage.

I asked if I should see the doctor again since it had been a few months.  I was told no, and given a date for the surgery.

hand in a door

Today was Pre Admission Testing at the Hospital.  I think I’d enjoy getting my hand stuck in a door more than that.  It is a mess of people who know very little asking the same questions over and over when they don’t know the answer.  Instead of Pre testing, perhaps they should call it CYA – a way to prove to everyone you were healthy before they did whatever you needed.

Stop all your over the counter medications today.

Why?

Because some of them thin blood.

Which ones?

I don’t know – but they tell us to have you stop all of them.

My probiotic thins blood?

I just have to tell you to stop them all.

sigh

We were moving along until I read the consent form.  “Left leg.”

Um… right leg…

At first she questioned me.  Then she picked up the phone to question the doctor.  The answer came with a new consent form and a request for me to see the doctor.  Tomorrow between 9 and 2.  Um, no.  How about Tuesday?  That I can do.  Cause I LOVE spending my entire vacation – every time – in a doctor’s office of some type.

And as I was leaving she said, “You forgot your chest X-ray.”

Insert speech about radiation and Cowden’s here.  As well as, why would I need a chest X-ray if I am not sick and my lungs are clear?

Right.  You can get your x-ray down the hall.

radiation

No one asked for a supervisor.  No one checked in on anything.  This woman undoubtedly knew nothing of my condition, only told me my procedure would be cancelled if I didn’t go.  For a hot second I did wonder if that wasn’t a better idea.  But, there was a kid to get home to, and a dance she wanted to get to, and so many reasons to run away, and so many reasons it has to get done.  But, in the end the pain in the legs drove me down the hall.  Where I took another, albeit small, hit of radiation to the spot where my breasts that were removed harboring early stage breast cancer once lived.  But, for good measure they put a cape on my abdomen.  To protect the uterus and ovaries THAT AREN’T THERE!

I left angry.  Sad.  Mad.  Frustrated.  And grateful.

Grateful at least that the bungling was being practiced on me and not Meghan.

Next Thursday the 19th.  It’s a minor procedure.  But, wow.  I think I need some prayers.

And them Friday the 20th it’s off to the orthopedist for Meghan

You see the MRI she had January 22nd – that I battled to have read until February 2nd- showed a decent size residual AVM in the knee.  It’s not gone.  In reality, its not much smaller than it was.  Perhaps a bit less angry, without as intense of a blood flow, but yet still 2 x 1 cm embedded in the meniscus, and aggravating all sorts of other things.

ER 11/24

ER 11/24

And just for fun this MRI showed evidence of problems in the knee itself.  Too much messing around with loose blood flow for too long.  There is some deterioration and its time for an orthopedic surgeon, the chief at a Long Island Children’s hospital to take a look.

I didn’t write the week I was ready to string up the vascular surgeon for not getting back to me.  I thought it better to say nothing, because I could find NOTHING nice to say that week.  Now,  I am calmer.  And we need him.  So I breathe deeply.  And I told his PA in my calmest angry voice, that no matter how busy they get, they need not forget there are humans, with families and real pains, and anxieties on the other end of those CD images.

In reality it doesn’t matter, because I suspect there is no good solution.  They offered us another embolization.  She recovers poorly from them.  And truth be told, they aren’t working.  And since insanity is defined as doing the same thing over and over expecting a different result – we decided to hold off a bit.

Just-Tired

Plus, there is the whole endocrine thing to deal with.  Like the TSH level that again doubled in 6 weeks on a higher dose of synthroid.  And a kid who is functioning with numbers that would level me.  So the doctor said, “I can’t explain it.”  And he won’t prescribe an alternative medication.  But he acknowledged the idea of insanity, and raising her synthroid again with no plan is definitely insanity.  So we talked about T4 (Synthroid) and how she is at the upper dosing for her weight.  And then we talked about how its the body’s job to change T4 into T3 so it can be used.  So, I asked if it was possible that her blood levels of T4 were there, but her body was flubbing the conversion, which it has done before.  If that was the case, that would explain her symptoms.  So, we added some T3 to her existing dose of T4.  And then she gets to wait 6 weeks again for a chance she may feel a but human.

Thankfully we’ve chosen to surround ourselves with positive distractions.

Thankfully 163 people are coming on Sunday to the Jeans for Rare Genes fundraiser, benefiting the PTEN foundation and the Global Genes Project.

Fortunately, my girl had influenced lots of people, and motivated them to raise awareness and support her favorite charities.

Fortunately, we have places to look to besides ourselves.

As I sit here with the seating chart to my right, and raffle prices to be typed on my left, I am grateful that there is a project.  I am humbled by my girl and her determination to be “normal,” and a powerful advocate all at the same time.

photo 4 (1)

It will all work out.  It’s got to.

We’ve got things to do…

We are BEATINGCOWDENS!

Rare Disease Day Fundraiser

2 thoughts on “Good to Have Goals…

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