Cowden’s Syndrome – Page 33

“I’ll get you my pretty…”

Published on March 12, 2013 by beatingcowdens12 Comments

It is late, but I need to decompress. my apologies to those of you I meant to reach out to personally.

Really – the last few days again have been a whirlwind.

The Wizard of Oz seems the appropriate metaphor – so bear with me.

Some time last week Meghan began complaining of shoulder pain. Left shoulder – mildly irritated. So, we gave some tylenol and kept on moving. But come Sunday afternoon it seemed to take a marked turn for the worse. And that is where the story began.

She was struggling to move it at all, and the pain face was coming. You know – the face that tries to be brave but is so strained it just ends up looking exhausted? That one.

We got her to bed Sunday night but started to wonder if she would make school the next day. We waited until she was sound asleep and began poking at the shoulder. Sounds mean I know, but we figured if we got a pain reaction out of a dead sleep… and we did.

So I began to Email her awesome PT who did her best to help guide me and keep me calm. She also got me a 1:15 appointment for Monday.

I emailed my boss that I would be out and I let her sleep in Monday. Then she woke up. I guess that’s where it started to get trickier.

Well, maybe not quite that tricky yet – but close. The pain was intense. We decided to try the Urgi Care to see if she needed an Xray. We waited and were seen by a perplexed doctor who decided against the Xray and suggested we see the pediatrician. Great plan. He was on my list but I was hoping to get a jump start since his hours didn’t start till 2.

In the mean time, we went to see the PT. Have I mentioned Jill and Lauren at Leaps and Bounds PT are the absolute BEST? We saw Lauren who calmly assessed Meghan through careful range of motion activities. It was clear she was in great pain. Lauren told me she was worried about the muscles – clearly strained, and the potential that there might be a slight injury to the rotator cuff.

At this point I swear I heard the sound of Cowden’s Syndrome, like the Wicked Witch, cackling in the background, “I’ll get you my pretty…!”

My heart sank. The shoveling hadn’t helped I am sure. But the swimming. That had to be the real culprit. I felt like I had been punched in the stomach, or perhaps that someone had dropped a house on me.

It had taken years to find a sport that she enjoyed. One that she was ENCOURAGED to do. The pride and excitement on her face – amazing. And now the threat that maybe it caused this injury. My thoughts flooded with wonderings about the future.

At 2:30 we headed to the pediatrician. He evaluated her but wanted an orthopedist. We tried three. None took my insurance. Finally they found one local that takes my insurance who would see her Weds. (tomorrow) at 4:40 – but don’t worry because they are triple booked and we should plan on waiting 3 hours.

Um… no.

So as I stood at the window of the pediatrician’s office I asked him to order the MRI that seemed inevitable. He reluctantly did. Then I asked him what to do for her for pain. He called us back in and looked at her again.

He said what I already knew. He said, ” No one around here has a clue about Cowden’s Syndrome, and they don’t want to touch her.” Take her off Staten Island. Go up to Memorial Sloan Kettering where they first diagnosed her AVM. Go to the ER up there. We have no way of knowing if the knot behind her shoulder is a muscle or a soft tissue tumor. (Thank you Cowden’s)

“I’ll get you my pretty…” There goes the cackle again. And a firm reminder to Cowden’s that it WILL not get us

This was at about 5. So, we had a quick bite to eat and headed up to 68th and York. They were perplexed by our arrival, but they handled it fine. They got an Xray, and made Meghan comfortable with heat packs and pain medicine. The Xray wasn’t read because there was no radiologist on, so we were discharged hours later with the pain pills, and orders to see an orthopedist – the one who diagnosed the AVM, and to call our endocrinologist for the Xray results in the AM since he is the one we see at Sloan.

At this point Felix had joined us and we were all a bit punchy. Meghan was stiff and in pain. I was over thinking and exhausted… together we made quite a sight.

We arrived home after 11 and I headed down the street to the 24 hour pharmacy for her pain medicine. Except – they didn’t have it. And they offered me no suggestion as to where to get it. So, at 11:20 – armed with my smart phone, and facebook, I relied on the guidance of a few night owls to get me to a pharmacy. Medicine retrieved, heating blanket purchased, and Twix consumed – I headed home some time close to 1AM.

Felix was staying home Tuesday. It was Parent Teacher Conferences for me. So my head touched down on the pillow some time around 1:20 AM.

Too tired to even think, I could still hear the cackling of the witch – reminding me so much of Cowden’s Syndrome… threatening… “I’ll get you….”

I headed out to work by 7:30.

I called for the Xray results and got a reprimand by our doctor at Sloan that was appropriate for a child. He was annoyed that I had even brought her to the ER last night. I told THAT doctor to take it up with my pediatrician. I really despise arrogance.

In contact with Felix and Meghan we got an appointment for the orthopedist, on the 21st of MARCH!

Since that wasn’t going to work a long term plan, a call to the rheumatologist led to an appointment at 2:30 PM today.

Basically she feels the lump is a muscle and not a tumor…. (So take that bucket of ice water witch!)

She gave Meghan an order to rest for a week. Better than a season! She also gave a script for PT and a muscle relaxant for a week. We will reevaluate then…

In the mean time, she is asleep. Resting with a heating pad. School tomorrow will be tough, but she will make it.

I got through hours of conferences and stayed alert and awake!

I will find the number and call the coach about swimming.

We will not give up. But apparently she needs PT AND swimming, not PT OR swimming. We have time. Not a worry. We will fit that right in.

You know what, it has been a wild two days. But it could have been a whole lot worse.

Everything with Cowden’s seems to have a sense of urgency. There is always the “what if…” Her joints are hypermobile because of the Cowden’s. She injures easily. But all that means is we have to teach her to get in control of her body. So the PT is a have to. That’s ok. Could be worse. Least we love our PTs.

AND… it will be PT AND Swimming. My girl loves to swim. And she’s not half bad.

A few readjustments. A few more bumps in the road. A few more skipped meals, and some more gray hair. But it will be OK again.

Cowden’s Syndrome gives us obstacles. We work around them, through them – whatever is appropriate. As long as we don’t stop.

And well – if anyone says we can’t… we just melt them. It’s much quieter now.

Hopefully tomorrow runs smoothly.

But for tonight…

Happy Birthday to my boobs!

Published on March 4, 2013March 4, 2013 by beatingcowdens12 Comments

Remember where you were a year ago?

I do.

A year ago this evening I was pacing the floors. Making sure Meghan was packed for school. Triple checking my hospital bag. Planning my last meal by midnight, and pacing the floors – quite sure I wouldn’t sleep.

I was right.

I hadn’t arrived at that moment in my life by accident. It was the result of years of breast biopsies for suspicious masses. MRIs, sonograms, mammograms – and a mother who was a bilateral breast cancer survivor. Not to mention my diagnosis of Cowden’s Syndrome that had been confirmed only months before I met the warm, caring, and decisive surgeon that was about to remove part of my body. Don’t wait till the summer – she somehow convinced me. March 5th. Get it done.

One year ago, on the morning of March 5th 2012, after vomiting repeatedly from terror, my husband and I left and headed to NYU hospital for my “prophylactic bilateral mastectomy.”

We checked in by 6 AM. I can remember every detail of the morning. It is imprinted in my subconsciousness. It may fade over time – but for now…

My brother in law called my cell phone by six. We prayed together. Then, I just focused on breathing.

Checking in takes forever. Everyone stopping in. Lots of waiting. I paced that small room so many times I swear my footprints are probably still there.

And my husband – my pillar of strength – just waited with me. When I wanted him to pay attention – he stopped and held my hand. When I wanted him to ignore me, he dutifully read comics on his iphone. I would not have wanted to be him.

I had to explain to the resident filling out the paper that I was not having “tissue expanders” put in. Well this was not an easy concept for him. Apparently that is just what everyone does. The expanders are placed during the mastectomy, and then “filled” until the tissue expands to the size you would like, and then the silicone is placed.

Well I had already had a long talk with my plastic surgeon. I had no desire to have giant boobs. Nope. I was sure.

She can keep her award... — She can keep her award…

At 38 years old, and the mother of a nervous 8 year old, all I wanted was to leave the hospital and not have to return for another surgery. (The sweet irony of that wasn’t realized until I returned 10 weeks later for my hysterectomy… but anyway)

I had convinced the plastic surgeon to use whatever silicone implant she could – and put them right in. After a lengthy discussion, she agreed. It was more important for me to get right home to Meghan.

This resident was having a hard time wrapping his head around this, but finally we got the papers right. They were to put in whatever one of these fit best – preferably a matched pair.

Finally it was time to head to the operating room.

I have had lots and lots of surgeries, but the thought that I was engaging in such a major procedure “prophylactic-ally” was literally making me weak at the knees. Fortunately I managed to hook up with an absolutely awesome surgeon/plastic surgeon team. Two women who are talented, compassionate, and understanding. They gave me the peace of mind I needed right before the anesthesia. The last words I recall before I woke up – “You’re doing the right thing.”

They expected a “clean easy procedure.” After all I had had an MRI just a month prior to confirm I was cancer free.

Recovery from anesthesia isn’t my forte, although I have improved with experience. I got to visit with my sister, and enjoy my husband.

The peace I felt after this surgery can not be understated. I was so relieved. The storm had been calmed. It was done.

I left the hospital about 28 hours later on March 6th. I couldn’t wait to see my girl. The drains were still in place and they would stay for another week, but the hardest of the hard work was done.

So, on March 5th – my boobs are officially a year old. At least that’s the day I adopted them.

And what a year it has been.

A week after my “prophylactic” mastectomy, I held in my hands a pathology report that clearly stated I had DCIS – early stage Breast Cancer. Among the other “precancerous” conditions embedded in that report was the reality that I no longer had to be concerned with the “what if?” It was done. I was OK. By the Grace of God alone – the cancer was out before it was ever a problem. And, whenever I doubt, or get angry or frustrated by our Cowden’s Syndrome journey, I am reminded of that moment. Without Meghan, and without her diagnosis. I would have never proceeded with such an aggressive surgery. God gave me my little girl, and spared my life. We will use that gift as often as we can.

The weeks of recovery went smoothly, with lots of help from mom.

And then it seemed – no sooner was I back at work, that I was being told by another surgeon that I NEEDED a complete hysterectomy – now. So, in May we went back. This time at least everything was benign.

This is the year that included 2 surgeries for Mom and a thyroid biopsy for Meghan. It included a car accident that I am still healing from. (And the very first thing I checked after I realized I had been in an accident was that my silicone was intact!)

It included Grandma’s fall, and ongoing recovery.

It included circumstances that caused me to step away from my church, and blessings that led me to a new one.

This year I laughed deep laughs, and I cried gut wrenching tears. I got re-acquainted with old friends, and I met new friends in support groups online.

This year I learned there are some benefits to small silicone boobs… (with no nipples!) I got to go bra-less for the first time in YEARS!

This year we vowed to make a difference,

This year we gave out over 2,000 denim ribbons, and taught a whole lot of people about Cowden’s Syndrome and Rare Diseases, and the Global Genes Project.

This year was only the beginning of the rest of our lives.

One year without my old boobs. One year with the new and improved CANCER FREE version. One year of countless blessings. One year of boobs that will never sag!

HAPPY BIRTHDAY TO MY BOOBS!

Cowden’s Syndrome – You’re NOT the boss of US!

Published on March 3, 2013March 3, 2013 by beatingcowdens1 Comment

“You’re not the boss of me!”

Sometimes little kids can be misguided. Sometimes, Mom, Dad, or teacher is in fact the BOSS of them. But that statement from the mouth of a child is the beginning of their move towards independent thought. And, if nurtured properly can lead to a productive, independent, determined adult.

That’s what we are getting at here.

You see I spend enough time around children, that their words and phrases sometimes stick with me. And this one is stuck with me this weekend. So I reflect how it applies to my 9 and a half year old daughter and my 39 and a half year old self.

See, even though Meghan is very good at realizing I am often the BOSS of her, she will not be easily ruled. And while I love her independence, I love more the fact that she remains respectful towards her father and I – and dare I say, all the adults she deals with. She, as an only child has lots of bosses, but I encourage her to rise up against the tyrant that is Cowden’s Syndrome – and she does.

If Cowden’s Syndrome were her boss, she would sit idly by while the pain persisted; in the knees, the ankle, the shoulder, the wrist or whatever joint it currently is attempting a choke hold on.

But, since its not – she goes to dance class on Monday, Swim practice on Tuesday, Music and Movement on Thursday, and Swim Meets on the weekend. She often cries in pain in the hours following these events. But never once does she talk of stopping.

You see, Cowden’s Syndrome is not the boss of her.

Cowden’s Syndrome would have her hide in a corner, ashamed of an “orphan” disease that no one can really understand. But hiding is not for my girl. Instead she asks for a denim ribbon necklace. She learns about the Global Genes Project, she understands “Rare Disease Day,” and she actively participates in the “Wear that you Care” campaign. She makes thousands of denim ribbons, and informational fliers. She gives 2 speeches at her school. She even wrote a book about it. HA! Don’t tell her no one really knows about Cowden’s Syndrome – because she will take it as a challenge, and fix it.

A denim cause ribbon, crafted after the Global Genes Project's slogan, "Hope it's in our Genes!" — A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”

https://www.facebook.com/photo.php?v=10200149863021946 (To see Meghan’s speech)

Cowden’s Syndrome – with its biopsies and cancer risks would like to leave us terrified. Instead, we are empowered. Meghan got the anesthesia she needed and deserved, to have her last thyroid biopsy with dignity. The terror is gone. We will have anesthesia next time too. And, if the cancer hits – we are ready. We are empowered.

Cowden’s Syndrome – You’re NOT the boss of us.

You certainly don’t rule me. 85% risk of breast cancer – yeah, so? Endometrial cancer? Nope – don’t need that either. Thyroid cancer – half gone already, and checked every 6 months. Melanoma – nope. And annual skin exams just to be sure. Colonoscopy – did that. Clean enough to wait until 2015. My spleen – well. That’s still in limbo. But you know what? Whatever. I have stared down worse.

Just came back from my girl’s first swim meet. Time to relish in the satisfaction that something normal happened here today. We will handle the pain, with the smile of knowing – she’s pretty fast.

I know you’re staying Cowden’s Syndrome. I know we can’t ever get rid of you. But, seriously. Unpack in the basement closet and stay away from us.

Cowden’s Syndrome – You’re NOT the boss of US!

Moving…backwards

Published on March 3, 2013March 3, 2013 by beatingcowdens1 Comment

After a ton of work uploading the video of Meghan’s speech on “Rare Disease Day,” we got it to the Facebook page – Beating Cowdens. She spoke for all those who suffer from rare diseases, with poise – and HOPE.

It is about 5 minutes, but the proud Mom in me couldn’t resist.

Tonight though I have to send you backwards to Facebook to view it.

And, while you are there, if you are a Facebook user – “like” our page.

“Next Year…”

Published on February 28, 2013February 28, 2013 by beatingcowdens4 Comments

We left the house today with only the normal jitters. We even had time for a few family photos.

I have been teaching for 16 years.

I have addressed hundreds of students, if not thousands through the years.

I pride myself on being able to get their attention with minimal effort, and keeping it in most cases.

Sometimes it can be a bit more trying – like a full auditorium, as opposed to a closed classroom, but with the right presence and message, it can be done.

I did not get to hear Meghan’s speech today first hand. I was thrilled to see her happy smile when I picked her up. I knew she felt it had gone well, and that was most of the battle won.

While she was doing her homework I watched the recording her para had kindly made for me. I was awestruck.

Not only was I impressed with my little girl, and the clam, confident way she spoke, I was AMAZED by the quiet in the auditorium.

Now I know they are taught good manners, but this went beyond that. She HAD them. They cared about what she was saying. They were interested to learn about Cowden’s Syndrome. They were hanging on her words. The applause at the end confirmed it. She nailed it. Public speaking is not an issue for my girl.

The day followed with a Skype call to her friend Connor in Colorado. They struggled with the video feed, but they had audio and will try again next week for the video.

I know its only the US, but “Rare Disorders without Borders” here we come!

HUGE smile. Giant fatigue. Her day was a success. And now, tomorrow, she will give her speech all over again to the 4th and 5th graders – her peers. May it run just as smoothly!

Meanwhile, back at my school – the ribbons were distributed. The jeans were on. The kids were charged.

Many of them even decorated their doors with the Global Genes Project – denim ribbons. This was a huge school spirit event. I received cards, letters, and even a pack of thank you notes from one class. It was beyond touching to see my colleagues, supervisor, and students, all in their jeans with their denim ribbons.

“Hope it’s in our Genes”

We clearly are not alone.

All day long the photos came in. My Facebook page was hopping.

My nephew’s PreK staff on Long Island, my friend’s Catholic School on Staten Island, a few ribbons to a local HS, junior class at another school wearing theirs to support a family member. My sister had hers at work, and so did some dear friends.

“Next year…”

Next year can we do a fund raiser too?

Next year can we involve more schools? Maybe all of Staten Island?

Next year…

I got tons of requests, and offers of help. We know LOTS of really great people.

Next year, maybe we will help raise awareness even more.

But this year, tonight. I am tired.

I am grateful.

We are smiling. We are blessed.

Right now, Tylenol for her pain. TLC for her nerves.

There will be time to plan for next year…

This is it!

Published on February 27, 2013February 27, 2013 by beatingcowdens2 Comments

Yesterday was another trip to the rheumatologist. She is lovely, but hasn’t a bit of a clue why Meghan’s pain persists – often through the Celebrex, and ALWAYS without it.

She prescribes the medicine. She examines her. She sees no signs of Juvenile Rheumatoid Arthritis.

We speak for a little bit about Cowden’s Syndrome, her thyroid, and some of the other battles she has endured. I ask the doctor if this could all be related.

And she, candidly, honestly replies, “I don’t know. I am starting to think there is some link, but I don’t know enough about your syndrome to put it together.”

Well at least she is honest. But it is tiresome. The traveling. The doctors. The lack of answers.

So tonight, as I gave Meghan Tylenol after swim practice because the knee pain wouldn’t cut her a break. We turned our thoughts to tomorrrow, and the 6th Annual World Rare Disease Day.

This year’s motto is “Rare Disorders without Borders.” It got Meghan and I to thinking about how nice it would be if doctors in all the countries would share their research. There are so many rare diseases throughout the world. So many more dire than our own. There are so few people even looking for cures. As she chats and gets to know a girl in Australia with Cowden’s, we can’t help but think about how much more voice each of our disorders would have “without borders.”

http://www.rarediseaseday.org/solidarity (This link takes you to a video on Rare Disease Day)

We talked a little about the newspaper article, and how it has helped spread awareness in out community. We talked about all the ribbons we have made and distributed, and how nice it will be to see them tomorrow, and know we are not alone. We have raised awareness of Rare Diseases, and we have only just begun.

http://www.silive.com/northshore/index.ssf/2013/02/staten_island_9-year-old_and_h.html (This is a link to our article from the SI Advance – February 20th)

Meghan, and her determination will see her dream of the “One of a kind” necklace with the Global Genes Project Logo, find its way into their new store. She will see more and more people recognizing that “Hope is in our Genes,” and the denim ribbon gives an identity to those who too often have none.

Tomorrow people will understand what it means to “Wear That You Care,” as they don their jeans locally and globally.

My daughter, one of the compassionate people I know, is also the least judgmental. She is kind. Because she knows what it means to need kindness. She is kind because she has faith, and wisdom gifted to her. She is kind because, “You can’t tell by looking at someone if they are sick or in pain.”

We share a genetic mutation. I am her mother. She is my role model and my hero.

She makes me a better person.

Wear your jeans – February 28th, 2013.

Meghan Speaks Out!

Published on February 25, 2013 by beatingcowdens8 Comments

Maybe tonight I would have to call Meghan the “Guest Blogger.”

What you read below is her speech. She was asked to prepare something to read for her school for “Rare Disease Day” on Thursday. She is an excellent public speaker, and fights only a few “butterflies” before she speaks. She always makes me so proud. I wish I could be there!

The text of the speech was written by her. I typed it, and then she went back in and changed it again. I added the pictures… just for here – because I like to!

She will review the speech with her principal tomorrow, but I don’t expect many changes.

When did my baby grow up?

**********************************************************************************************************

Some of you, who know me, know me as Meghan Ortega. Or, maybe you know me as Meghan from 4^th grade, or Meghan from Mrs. Worsdale’s and Mrs. LaMonaca’s class.

You might, if you know me a little better, know me as Meghan who loves to read, and swim. You might know me as Meghan who loves dogs.

Maybe you know that I have 2 dogs that I love, and a mom who is a teacher and a dad who is an electrician.

Lucky, Meghan and Allie - My three girls — Lucky, Meghan and Allie – My three girls

But, until today, very few of you knew that I am Meghan Ortega and I suffer with a Rare Disease called Cowden’s Syndrome.

Until September of 2011 I didn’t know I had this Rare Disease. What I did know was that something was wrong and my body was far from that of a “normal” kid.

For as long as I can remember, every week of my life has included AT LEAST one doctor’s appointment, and lots of times even more.

You’ve all been to the doctor and you know it’s not fun. It involves waiting and waiting…and even more waiting. It also involves poking and prodding. For me, it often means being sent to more and more and more doctors…

My mom says when I was a baby I wasn’t really comfortable, and I cried all the time. I almost never slept, and wouldn’t drink my bottle.

When we talk about it now, we think my body knew I couldn’t handle dairy products, and dairy is in milk.

Mom also tells me that I started seeing lots of doctors when I was just a few weeks old. Soon there were doctors to check almost every part of my body.

I have had 9 surgeries. I remember having my gall bladder out before I turned 4. I also had a lipoma (a soft tissue tumor that people with Cowden’s Syndrome get.)

I had knee surgery 4 times for an AVM in my right knee. An AVM is a vascular malformation. It is also common in Cowden’s Syndrome. It feels very strange because it pulses like your heart beat. Every time I had that surgery the doctor thought I wouldn’t need another one. But they have already done 4, and they are not sure if the AVM will ever go away, so I will probably need more.

Because I am in pain so much, I get physical therapy in and out of school. My outside physical therapist, Dr. Jill told Mom that she should take me to see a geneticist. I didn’t really understand what that was, but we went because that is just what I do.

Dr.Pappas at NYU was really nice. He examined me and he talked to me and mom. When he was done he drew some blood. He said he was pretty sure of what I had, but we had to wait for the test results.

In September of 2011, just as I was starting 3^rd grade, we went back to his office and he told us that I have Cowden’s Syndrome. It means that my PTEN gene is broken. Your body is made up of all sorts of genes, but these are G-E-N-E-S, not J-E-A-N-S like the ones you wear. PTEN is the gene that keeps your body from growing tumors. Because mine is broken I get more growths, like the AVM, the lipoma, and the nodules on my thyroid that I have to have checked every 6 months.

As soon as I was diagnosed, the doctor talked to my mom and said she probably had Cowden’s too. He took her blood and a few weeks later she tested positive.

Because of the Cowden’s my mom had lots of tests done, and it explained a lot of things about the 17 surgeries she has had. On March 5^th it will be a year since she had surgery for breast cancer. She is just fine. She says that knowing she had Cowden’s helped her find it early. She says to everyone that my diagnosis saved her life.

When I am here at school I smile a lot. I don’t like to dwell on anything bad. We spend enough time with doctors so I try to enjoy my time with kids.

You would probably never know by looking at me, that I am in pain a lot. I take medicine every day that helps my joints hurt less than they used to, but still most days I have pain. It is hard for me to climb up the stairs, and play at recess, but I do it.

We first heard about “World Rare Disease Day” last year, but at the time we were a little too stunned to do anything about it.

This year I told my mom I wanted to do something to make people more aware of Cowden’s Syndrome and all rare diseases. I was not ready yet to do a fund raiser – I just wanted to get the word out that Rare Diseases like ours exist. There are over 7,000 of them!

I shared my idea with Mrs. Manfredi and she said I could give out the ribbons and information you received today. I was really excited.

“Hope it’s in our genes” is the motto of the Global Genes Project. They try to raise awareness and find cures for all rare diseases.

Today I think it’s important for you to know you can’t ever really judge someone by how they look on the outside. You never know what’s going on inside of them.

Be kind.

Be aware.

Rare Diseases are everywhere.

Thank you

** By Meghan – Age 9!

This is the story… RARE DISEASE DAY!

Published on February 21, 2013 by beatingcowdens1 Comment

http://www.silive.com/northshore/index.ssf/2013/02/staten_island_9-year-old_and_h.html

Hopefully this link takes you to the full article.

Thanks everyone… and I mean all of you.

Lots of people were mentioned in here. In reality our support network is much larger and includes people we will never meet.

Love you all!

Lori

Priceless!

Published on February 19, 2013February 19, 2013 by beatingcowdens4 Comments

Waking up before the rest of my family on a vacation day – 2 cups of caffeine.

Filling the car with gas- $50.

Traveling through the Brooklyn Battery Tunnel $13 roundtrip.

Parking for 4 hours – $25.

Two doctor Copays $20 each.

Trip across the Verazanno Bridge… about $6 with my EZpass.

But, the news from the dermatologist that I can stretch the visits a whole year, combined with the news from the breast surgeon that “everything looks great and I will see you in 6 months!”

ABSOLUTELY PRICELESS!

So we cross small hurdles gleefully.

We had 7 appointments carefully scheduled for this week to avoid time off from work/school. Three doctors apparently realized last week they have kids at home and cancelled. So this concise week of appointments will stretch a bit, but I have begun scheduling the 11 doctors and 4 scans I can remember that are due in June/July.

I will do everything in my power to consolidate them.

Cowden’s Syndrome WILL NOT run our lives.

We are actively preparing for RARE DISEASE DAY…. (FEBRUARY 28th – Get your denim ready!)

Until Friday when we see the vascular surgeon about that pesky AVM…

Riding a bicycle

Published on February 18, 2013February 18, 2013 by beatingcowdens3 Comments

I was looking for something to describe my mood today, and there it was. Simply stated by a brilliant man, and there on the “Perpetual Optimism” Facebook page.

We keep going because we have to.

We keep going because if we DON’T, then we will fall.

We keep going because it is the only way to keep our balance.

I am tired. Tired of running, and sorting, and organizing and doing – all the time. Tired of working full time, being a full time Mom, and being a full time researcher, full time medical billing secretary, and a full time organizer… of all things.

I am not perfect at any of those jobs, and that frustrates me more. I want to do them all perfectly, but there is precious little time to pause for fear I might lose my balance.

I am grateful. For my husband and my daughter. I was never very good at riding a bike. Now that I do it full- time, they are my training wheels – always ready to hold me up… just in case.