Now we’re back where we started…

“Do It Again” (The Kinks)

“Standing in the middle of nowhere,
Wondering how to begin.
Lost between tomorrow and yesterday,
Between now and then.And now we’re back where we started,
Here we go round again.
Day after day I get up and I say
I better do it again…”

The chorus to the old song rings through my head, as we prepare to return to work and school.  Eight days post-op and everything checked out just fine at the surgeon.  It’s ok to return to school, as long as she limits stairs, reduces the weight she carries, and generally takes it easy.  The surgery went well.  The recovery is moving along.  But, as with each time we’ve done this, there are no promises.  There are some cautious words.  There are some hopeful words.  This is what I have to focus on.  And I will.

But, sometimes it can be hard.

Like when you do research and turn up this page from an orthopedic clinic.  (Rosenberg Cooley Metcalf) and you do OK until you get to the bottom where it says “Recovery.”

Knee

Primary Inflammatory (Synovial) Disease of the Knee

Diagnosis

Your diagnosis is a primary inflammatory condition involving the lining (synovial tissue) of your knee joint.

Injury or Condition

This condition represents a primary inflammatory disease developing within the velvety lining (synovium) of the knee. In response to inflammation, the lining tissue can thicken and hypertrophy dramatically which may lead to chronic swelling.

Cause

The cause is often unknown. Some inflammatory diseases of the knee lining involve only the knee joint (PVNS). Other diseases like Rheumatoid Arthritis can affect multiple joints.

Symptoms

Typical symptoms are moderate to severe generalized swelling and pain about the knee. Marked swelling can be associated with stiffness usually in bending the knee. Increased warmth is felt about the knee in some cases.

Treatment

Standard treatment includes:

  1. Anti-inflammatory medication for six months.
  2. Safe exercises to improve strength without aggravating swelling.
  3. Ice, warm packs and knee balms can be used to decrease pain.
  4. Swelling can sometimes be reduced by application of elastic stockings and/or sleeves around the knee.
  5. Diagnostically, joint swelling aspiration and MRI can provide information, although it may not change the treatment.
  6. If non-surgical treatment fails, arthroscopic surgery to remove the diseased tissue (synovectomy) should be performed to limit or cure the disease.

Precautions

Important precautions:

  1. Do not aggravate swelling and warmth about your knee. Increased warmth and swelling may weaken your thigh muscles and may raise the risk of destructive changes within your knee.
  2. Do not ignore or neglect your condition. Follow recommendations and do not miss important follow-up visits.
  3. When arthroscopic synovectomy is necessary, elevate your limb very well for 48 hours and initiate full weight-bearing within the first 3 days of surgery.
  4. Avoid stress.

Recovery

As the cause is unknown in many cases, the recovery can be uncertain. Two-thirds of cases generally recover completely. Full recovery after arthroscopic surgery usually takes 3-6 months.

US Ski Team US Snowboarding
Rosenberg Cooley Metcalf Clinic“Two – thirds of cases generally recover completely.”  The math teacher in me is unhappy with those numbers.  The mother, the mother of this child, knows that she defies statistics whether they are for or against her.  She is her own special case.

Meghan spent the week on the couch, making up what seemed to be an astronomical amount of schoolwork.  Maybe it was a good distraction.  After surgery 13, the novelty of the whole thing has worn off.  Days are long.  Recovery is mundane.  People are busy.  Texting helps a bit, but the hours drag.

sigh

We got to PT this week, twice.  And already I see progress.  That’s why quality therapy is worth every minute.

So during my days home I did laundry, and caught up on some household things while I stayed close to my girl.  I also attacked “the pile.”

Busy_desk

There is a spot on my desk where all the bills, letters, invitations, flyers, and pretty much everything else goes.  I try to get to it every few days.  But mostly I don’t.  Then it overwhelms the table.  And somewhere under the pile is “the list.”  The upcoming appointments line the top.  Then there are the appointments I need to make, and the bills to be addressed that for some reason are not in “the pile.”  Today was a good day to tackle it.  I made some significant progress.

I also spent hours on the phone.  I dredged up the anesthesia bill from my surgery in February.  That took an hour.  But, it’s done for now.

I started scheduling appointments.  We tend to cluster a lot the first two weeks of the summer.  Some have been planned for months.  Some I’ve been blocking.  I got a few more in.  Then I got stuck.

In the hospital the pediatrician last week was really on my case.  She wanted to know who was “in charge” of Meghan’s appointments, check ups and surveillance.  She didn’t like that I said, “ME!”  (Maybe it was the way I said it… (grin))  But, truth be told, I really don’t like it either.

time struggle

I had to tell the endocrinologist that 12 weeks was too long to wait to repeat ANOTHER irregular lab finding last week.

Meghan’s blood pressure in the hospital was low.  Like at times crazy, scary low.  I know she was just cleared by a cardiologist, but…

And the lesion on her hand dubbed “vascular” by the dermatologist….  What to do with that?  The same dermatologist who promised the moon and the stars and the sky in November as I prepared HOURS worth of Meghan’s medical records for her.  The same doctor who said she’d help us.  That one.  Yep, she’s useless at this point too.

I was on the phone today pleading with the receptionist of one of my doctors to let Meghan come in as well.  Apparently the fact that she’s “adult size,” doesn’t matter.  I was left so frustrated I choked on a few tears.

run-clock

This Syndrome is big.  I can manage it.  I can and I will, because there is no other choice.  But, I need some help.  I need a point person.  Someone to force the doctors to listen.  Someone to gather it all into one place and make sure it makes sense.  Someone to make sure we don’t miss anything.

In desperation I emailed the genetecist who diagnosed us.  He responded within an hour.

Dear Mrs. Ortega,

I am sorry I said no need to return. I have been overwhelmed with patients but this is no excuse. I will find out the referrals needed for Meghan and we will together make a surveillance plan. And we will meet so we will document the whole process.

I feel that I am the least helpful of all the physicians because I do not provide treatments. However, I will gladly assume the role of coordinator of care for you and Meghan. 

Sincerely,

(The angel I need… I hope)

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I will call tomorrow to make an appointment.  I have a good feeling about this one.  Please, whatever your faith, send some prayers.  This would be huge.  Really huge, in a life-changing good way.  We are three years in and due for an overwhelming cycle of tests again I’m sure – but I know it gets easier.

I just want to keep her safe.  I want to use every tool God has given me to keep her as safe as I possibly can, so we remain BEATINGCOWDENS together.

“…Where are all the people going?
Round and round till we reach the end.
One day leading to another,
Get up, go out, do it again.

Then it’s back where you started,
Here we go round again.
Back where you started,
Come on do it again…”

Reflections on Mother’s Day – from a “Rare Disease” perspective

what youre made of

Dates, numbers, anniversaries, addresses, and all sorts of other numbers crowd my brain.  I’ve said this before, and I will say again, it is a blessing and a curse.  It is a good thing to celebrate accomplishments, and the anniversaries … Continue reading

Cowden’s Syndrome – I guess it’s here to stay!

beatingcowdens:

I Just logged onto my blog and saw that it was my 3 year “Anniversary.” So I dug up my very first post from May 9, 2012…

Originally posted on beatingcowdens:

So it was a really nice doctor – or two, who said in the summer of 2011, you have to take your daughter to a genetecist.  There are too many unconnected “dots” I was told.  Someone will be able to diagnose something.  But, having gone almost 8 years with her multiple surgeries, countless doctors appointments, and unexplainable ailments, I had my doubts.  I spoke for an hour with the genetic counselor before the visit.  I think it took the doctor all of 20 minutes to say, “It’s a PTEN mutation, most likely Cowden’s Syndrome.  We will test her today.  She will be positive, and you will be too mom.”

P – what?  Cowden’s Syndrome – What the hell?  How could he know that from looking at us?  Was I missing something – some kind of freaky attributes that made us so obvious?  I left more self conscious than curious, and…

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“Lucky” Number 13

Lucky13

People count all sorts of things.  Among the things we count are surgeries.   Although the most recent ones have been predominantly knee related – 2011, 2012, 2012, 2013, 2014, 2015… we don’t forget the others that fit in.  And … Continue reading

Hurry up… and waiting rooms…

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The early hour usually means I would be at work.  Instead, I am sitting on the 10th floor, in the waiting room.  Again. Right now my beautiful girl in undergoing surgery number 13, the 6th on her knee.  The goal … Continue reading

To My Daughter’s Team of Medical “Professionals…”

end of my rope

I went to college, and graduate school, and took 30 credits above my Master’s Degree in Education.  I earned a job as an elementary school teacher, in the school I attended as a child.  And, after 18 years on the … Continue reading

Flip It…

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Some time in the middle of this winter that lasted forever, I started to notice people complaining about a sidewalk near my school that was often left icy and uncleared.  The grumbling that would take place was sometimes quite extensive, … Continue reading

Here Comes the Sun…

sun

It’s not unusual at all that a classic Beatles song would show up on a classic rock station in the car.  And I could write it off as mere coincidence.  But, there was my Dad this afternoon.  In the car, … Continue reading

Dear Cowden’s Syndrome,

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I’ve wanted to talk to you ever since you rudely introduced yourself to my family in 2011.  Actually it wasn’t even a proper introduction.  It was more like, “I’m here.  I’m staying.  What are you going to do about it?” … Continue reading