Normal People Stuff

Two weeks of as much rest as I can possibly stand.

The trouble with having a rare disease, as I’ve said so many times before, is that you ALSO have real life.  You ALSO have “normal people stuff.”

After that early January fall, I was quite consumed with my shoulder, and pretty bothered by the flippant attitude of my breast surgeon.  All of which still stew inside of me as the real possibilities of breast implant associated illnesses are all over the news this week.

Just one of the many stories this week outlining a possibility. That’s where it begins. With someone saying it “could” be. 

And then there was the new endocrinologist on March 12th.  It was a backwards progression of sorts.  A referral from the surgeon who has been following me since my PTEN diagnosis.  I never really settled into a new endocrinologist after I disagreed with my long standing one in 1998.  He was bothered by my questions.  I bounced in and out of a few.  I found them mostly arrogant and out of touch.  I held with one during my pregnancy in 2003, but ditched him soon after my C-section.  I had a primary running bloodwork, and I was guiding treatment based on my labs until the Cowden’s Syndrome surfaced.

At that point I was handed off to an endocrine surgeon.  The possibility that the half of my thyroid which remained after a partial thryoidectomy in 1993 could fall into the 35% lifetime risk of thyroid cancer that comes along with a PTEN mutation was real.  We agreed on annual follow-ups using the ultrasound in her office.  All was smooth until February 26th, when she saw some calcifications on the ultrasound.  She got spooked and wanted a “fresh pair of eyes.”  She referred me to an endocrinologist in her hospital.

He sent me for a “proper” ultrasound before my appointment.  He then, with some promising knowledge of what a “Cowden’s” thyroid looks like, went through the images from the exam.  He told me that there were some potentially concerning features, but nothing that appeared urgent.  He questioned why I had not been using the formal ultrasound at the hospital, as there was now no baseline to compare it to.  In another episode of wondering why I don’t ask enough questions about my own care, I had to let it pass…

He told me the radiologist would read the ultrasound with more concern than he did.  He was right.  So there will be another ultrasound in August.  We’ll talk about the status of that right thyroid lobe then.  In the mean time he offered me a change of medication that in 30 years on Synthroid no doctor has ever entertained.  Monday I will begin a lower dose of Synthroid combined with a twice a day dose of T3, liothyronine, in hopes that I might get some of my sought after energy back.  With a standing order every 3 weeks to monitor blood levels, at this point, I have nothing to lose.

So back in circle to the “normal people stuff” intertwined in this balancing act.   April 18th is still the earliest day to contend with the chronic ear pain and fluid I’ve been handling since September.  It doesn’t matter that it has headed into my mouth and is bothering my teeth.  That it is somehow messing with the nerves so badly that I ended up with a root canal specialist yesterday.  Of course, she won’t touch the painful tooth because no one can know exactly what is in my ear.  Pain management.  Maybe it’s Cowden’s.  Maybe it’s allergies.  Maybe it’s simple.  Maybe it isn’t.

And then there is that foot. Snagged on a kids chair in a third grade classroom in the middle of teaching a lesson.  It knocked me on the floor.  I was so worried about the shoulder, and the breast implant that I ignored the foot.  At least I tried to.

About 2 weeks after the fall I saw my primary and asked for help.  She suggested an MRI.  GHI promptly denied the MRI and told me to ice and elevate as much as I could, and reevaluate in 6 weeks.  I was left with no choice but to continue a job that kept me more hours on my feet than off.  By March 6th I couldn’t take the pain anymore and headed to a podiatrist.  He evaluated the foot, ordered Xrays, and got them read within hours.  By the next day he had the MRI approved and I went in for the exam.  About 72 hours later I got a call asking me to come in to discuss the results.

That’s never an actual good sign.

So when I walked into the office in two sneakers, I kind of suspected that I wasn’t going to leave in both of them.  And I was right.

MRI revealed a partial tear of the lisfranc ligament in the left foot.  Apparently this is an incredibly rare injury, (insert shock and surprise here) that the podiatrist anticipated before the MRI.  Apparently you can only get this injury through a twist and fall, you know, like catching it on a student’s chair mid-step.

I got a soft cast, and a giant walking book.  I got pulled out of work for at least two weeks, with no idea when the good people who review these cases will approve this as the clear work-related injury it is.

I have another appointment with the podiatrist tomorrow.

There is State testing at work this week. I’m always there for testing.

But right now I’m actually testing my inner strength.  Resting my foot.

I’m preparing for my clearance to return to work.  I’m preparing for my ENT appointment.  I am preparing to get my ear fixed.  I am preparing to get ready to lose the other half of my thryoid.  I am preparing for another plastics consult…

And all the preparing in the world won’t matter.  Because life will come in the order it wants.  That is the lesson for Cowden’s Syndrome and real life…

The dog hair and I will be here until then….

#beatingcowdens

 

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

Passing time….

So here we sit.  Again.  For the second time post thyroidectomy, we are in the hospital. meg hospital May   The girl doesn’t feel well.  She just doesn’t.  End of story.  But, not too many people seem ready to listen until she’s in a full on physical crisis.  Even then sometimes the numbers are frighteningly low. Yesterday she knew.  She NEVER tells me to stay home from work.  She KNEW.  And my pediatrician heard it in my voice.  She was admitted soon after he saw her.  He wanted it to be the flu.  In some ways I did too.  A little Tamiflu and some rest.  Buts she’s negative for flu.  No real surprise.  Too simple a diagnosis for my girl. Since her surgery in February,  her TSH (Thyroid Stimulating Hormone) which is supposed to rest somewhere between 4. and 4.0 has been lingering well over 10, despite numerous medication adjustments. The TSH is supposed to be down regulated when the synthetic thyroid hormone takes the place of the T4 and T3.  Enough thyroid hormone and the TSH decreases.  Not enough and it increases causing hypo (under active) thyroid symptoms which can range from bone crushing fatigue, to generally feeling unwell and a whole host of issues in between. He medication has been adjusted upward with no effect – several times. I know it takes time.  I barely remember my own battle with thyroid hormones over 20 years ago.  The veterans of this surgery tell me 6 months, a year…  I get it.  I do. But then there is the reality of watching your kid feel crappy every day.  The reality of watching her FIGHT with all her might to do the normal things others take so easily for granted.  And then I get impatient. impatient smiley To complicate things it may not just be the thyroid hormones keeping us hopping. That “lymph node” turned “salivary gland” is now back to a lymph node in the neck.  We are awaiting the ultrasound that I feel should have been done with her appointment last Monday. And there is a fever.  She never gets fever.  Not really.  And yesterday it was 102.  Today around 100.  No answer why.  Not even the White Blood Cell Count gave a clear indicator. And the reflux.  Painful.  Like fire. Lack of desire to eat much of anything leads to weakness. fire And the throat clearing.  Reflux? or lymph node? or something totally different? So we temporarily stopped the celebrex to try to solve the GI issues.  The medical equivalent of robbing Peter to pay Paul.  The joint pain – managed for now – is rearing its head. And why does a 10-year-old, with no gall bladder and a week of the worst reflux of her life – with no dietary changes – begin vomiting bile? Maybe just maybe we will meet up with a decent GI.  Girls can hope. So I sit.  We sit.  Waiting for answers to questions.  Waiting for answers to more questions than we will ever get.  But we are hopeful.  Anxious. At least right this minute the worst part of being here is passing the time with the stupid IV.

They got it the second time!
They got it the second time!