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)

1219988821512034089Little Angel4.svg.med

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…”

Keeping It Together

When it’s all about to fall apart, what is a mother to do to hold it all together?

Anything she possibly can!

Months ago I wrote a blog about how Cowden’s Syndrome changed… my phone.  And its true.  I could not manage the appointments and chronic craziness without Siri, my BFF.

And, when the navigation in my car quits, which it often does, Siri is the one to get me home.

So how did Cowden’s Syndrome change my entire way of eating?

After our diagnoses in the fall of 2011, my dear husband ate his way through his stress.  I can’t blame him.  Imminent cancer risks for your young daughter.  Thyroid nodules galore.  Biopsies every 6 months.  Vascular problems.  Pain.  A wife facing a mastectomy, and subsequently a cancer diagnosis, and a hysterectomy.  Tumors on her spleen… and the list goes on.

By November of 2011 he was here.

Felix and Meg November 2011

I had known him since 1997 and had seen his weight fluctuate from attempt after attempt to get the stress eating in check.  Being a big attractive guy, he was able to disguise his weight very well for most of the “ups.”  But I knew this level of yo-yo dieting was not good for him.  I also knew we needed him, strong and by our sides.

My husband is soft-spoken, and talks to very few people by his own choosing.  I had to get his permission before I hit “publish” on this one.  But if you listen carefully when he does talk, he always has valuable advice and a story to tell.

Some time over the winter of 2011, into early 2012… maybe it was right after my double mastectomy in March of 2012, he had a revelation.  While sitting uncomfortably on the couch one night, he tried to move a pillow out of his way.  Only to realize it was his waist.

A month after that during a physical he left the doctor’s office with prescriptions for his high triglycerides, his high blood pressure and his high cholesterol.  Darned if I was going to put MORE junk in his body we went to a trusted cardiologist.  He told Felix there was nothing wrong with him that losing 50 pounds wouldn’t fix.  He gave him a script for a prescription strength fish oil.  We tossed the other scripts in the trash.

That was the moment of truth, and we went on a hunt together for what would help.

Fortune, and opportunity, and the grace of God had placed a new friend in our lives that year.  She was a blessing to Meghan, but subsequently to all of us.  She had begun her Isagenix journey that  year and was seeing incredible success.

For years I knew that diet and nutrition were the key to so many things.   Meghan never even spoke until we removed gluten, dairy and soy from her diet at the age of 2.  We saw her developmental delays resolve as her stomach quieted.   We moved mountains to feed this kid right, and provide her with nutritional supplementation of only the highest quality.  As I listened to my new friend describe Isagenix, I heard words I already knew to be true.  This company had everything I knew about nutrition – ready to help my husband.

So we started him on the “30 Day Cleansing and Fat Burning System.”  Within days he reported feeling better.  He was expressing clarity of mind.  He had energy.  He had less of a desire to eat junk.  His palate was changing and he was fighting me for the rest of the vegetables at dinner.

I was amazed, grateful, and impressed.  But not surprised.  It all made sense.  Put maple syrup in your car’s engine and you ruin it.  Run it of pure gasoline, change the oil regularly, and you are golden.  Why would we treat our bodies any less efficiently?

Felix and Meghan January 2013
Felix and Meghan January 2013

Over the next 11 months I dutifully adjusted his “autoship” so that the products would arrive at our home ever 29 days.  He modified the portions of the program that work for him, and he woke up in August on his 40th birthday 50 pounds lighter than he had been over 18 months before.

For the first time, in the 17 years I have known him, the weight is GONE.  RELEASED – not lost.  It will NOT be found again.

He tells me this is not a “diet” but a lifestyle change.  He will not start his morning without his shake and his ionix vitamin.  He will not go more than 3 weeks without a “nutritional cleanse” that is the lifeblood of why this works.  (Nutritional Cleansing releases toxins from the body.  Without that release of toxins your body begins to hold onto the weight again.)

http://www.isagenix.com/us/en/areyoutoxic.dhtml

After all of this regulating the autoship, and paying monthly for high quality nutrition, some time in May I looked up and realized I was missing a HUGE piece of this.

First of all, I ordered myself some meal bars, a few shakes, and some E+shots.  My body, stressed to the max, even though it was thin – needed nutrition badly.  I was able to eliminate my diet soda habit – something I had tried to do for years with no success.  I can not stomach dyes and junk foods I used to live on.  My body just WANTS the real stuff.

Then they came out with a shake that would meet Meghan’s needs.

isagenix berry

And then we were three consuming Isagenix, and feeling better each day.  What an amazing thing to listen to your ten-year old TELL you when she NEEDS a shake.  I am convinced the only reason she can swim the way she does is because she refuels with Isagenix.

So, what does a family benefiting from a product do?

They talk.  Finally.  After all that I finally got around to telling people of our success.  Of the quality of these products.  Of the positive life changes.

And people wanted to know more.  So I learned more.  And I helped them.  And they are getting healthy too.  What a rewarding feeling.

I have had to contend with the negative folks along the way.  The ones who whisper, “That’s a multilevel marketing company..”  as if that made it evil?

Yes. Isagenix is a multilevel marketing company.  There is no mystery,  And no one tried to hide it.  There is no one breathing down your neck to sell or share the products, and you are free to purchase and use for as long as you like.  We did it for 11 months.  But if you share (which is what I learned to do as a small child in school – simply share) and you help others, you get rewarded for that.

Then I signed someone up.  And they were happy.  And I felt good.  And then another, and another.

And before I knew it there was this Visa card on my desk with money on it.  Money I had earned from telling our story.  Money I can use to do whatever I’d like.

It got easier and easier.

You see people say to me, as I had said to my friend, “I am not a sales person.”  Me either.  I am sure I couldn’t sell knives, or vacuums, or other random products.  What I CAN do is tell the truth.  I do it well.  My candid honesty ties into my “take me or leave me” philosophy.  I have no time for nonsense or drama in my life.

But now I tell people, quite honestly, that I don’t pay for my Isagenix.  We eat MORE products than ever, and we eat them for FREE.  Now in my 8 years of buying nutritious food, THIS is a new concept.

And I like it.

Isagenix has changed all of our lives in different ways.  And we have all benefited.  Felix needs to be strong for Meghan and I.  And my Cowden’s Syndrome buddy and I, with our tendency towards cancer, tumor growth and a whole host of other problems, need to give our bodies pure nutrition so we have the strength to stay healthy.

We are now, and forever an Isagenix family.

It’s one of the strategies we use to keep it all together.

We can help you too!

www.meghanleigh8903.isagenix.com
http://www.meghanleigh8903.isagenix.com