appointments – Page 2 – beatingcowdens

I WIN!

Published on September 13, 2013September 13, 2013 by beatingcowdens2 Comments

Yep. Finally the taste of victory, and I will savor every single drop. I know all too well these moments don’t come often.

Sandwiched between way too many doctor visits this summer, were a few other pressing problems.

We need a new roof. Well, that one is cut and dried. Pension loan. Money available – job before the winter.

The bay window in the front of the house needs to be replaced. That one, not as easy. Lots of paperwork to participate in a class action lawsuit where apparently lots of these windows have leaked. WAITING, and following up, and WAITING, as the wood shrinks and peels.

And then there was the car.

The car we bought in December after this happened in November.

The slightly, (but not too fancy because who was ready for a car payment?) upgraded car, was the same make and the next model up. It included more space, and XM radio capability, and the ability to have a navigation system in the car if we decided to subscribe.

If you have spent more than 5 minutes with me you know I can barely find my way out of a paper bag.

In the midst of being tired, and sore, and frustrated about the accident, I was THRILLED to have a navigation in the car.

The navigation was also connected to a blue tooth that went right through the car speakers. My phone synced to the car and I could talk without worry.

I was thrilled – when I wan’t frustrated. Or lost. Or left dropping calls, or using my Iphone to take me places.

The car wasn’t working right very early in the game. We ignored the “glitches” for a few months thinking it would get better.

Then in April it made its first trip in for service- only to be declared healthy.

Until it wasn’t.

Then it went back in. This time a new radio.

Nope – that wasn’t it.

And so on and so on and so on and so on.

I drove more rental cars this summer than I ever want to drive in my life.

During one stretch the car spent 11 days in the service station. They said they couldn’t fix it.

They called in the field tech (“Magic Wand Guy.”) He said it was fine.

Nope. Not fine. My Iphone is full of voice memos of me trying to get places. It took us 18 minutes to get started on the trip to the Philadelphia Zoo.

At one point I drove around the neighborhood giving it addresses. It was 2 for 10.

And the sound on the blue tooth just kept getting worse.

I didn’t know much about the Lemon Law, except that it exists. But hidden inside the glove box of my car was a handy book explaining it. It also gave me detailed instructions on how to file a claim (free of charge) to be arbitrated by the Better Business Bureau.

I read.

In between trips back and forth to NYC for doctors, I read and I learned, and I first tried a letter to Corporate Office. The deliver confirmation says it was received July 22. I wonder when it hit the shredder?

Next, I opened a case with the Better Business Bureau. They closed it when “Magic Wand Guy” was coming to fix the car. After he declared it fine, and before I even drove it off the property, I tried the system again. Still broken. I reopened the case.

When they ask what we would like to solve the problem my husband said, “Tell them we want a new car.” I was really hesitant. He explained his fears that the problem that no one could seem to fix likely lay deep in the central computer. I trusted him.

It took so many hours to prepare the documents. I wrote a narrative that was over 10 pages. I faxed. I Emailed.

All of this in between dragging ourselves back and forth to the dealer in between doctors.

Today it paid off.

I finally got that call from corporate.

They are replacing the car. No out of pocket cost to us at all. We went tonight to decide on a color. The VIN number has been assigned to us. 7-10 days for the paperwork.

Then I drop off the old car and drive away with the new one.

If you asked me in July if I would ever buy another car from these people again, I likely would have said, HELL NO!

However, with so much time spent together I developed a respect for the Service Manager. And, in the end he was our advocate.

And tonight, while we filled out papers, with no commission to be made, the salesman was kind. He was friendly and patient. He was personable and understanding. He got that WE matter.

We chose black. Time for a color change.

So many things go wrong, so often. Hanging onto the anger will make you sick. And, well – we haven’t got time for that.

Sipping my t+Chai I have peace.

Talking on the phone to my father before he told me a story. The day Meghan had her hand surgery, I had to go drop the car for the (millionth) time. I was stressed about leaving her, and about the whole mess. He told me tonight she said, “I don’t know why Mommy’s so upset. She’ll get this taken care of.”

Tonight when I was so happy she said, “I never doubted you.”

Her confidence. Whatever I did, by whatever grace I have it- I hope to keep it for a long time. It’s quite the compliment.

I don’t keep a win/loss column. It would be too distressing. But tonight – we win. And for tonight, that’s just plenty.

Anxiety- an after effect, or a symptom?

Published on February 16, 2013February 16, 2013 by beatingcowdens8 Comments

An interesting “conversation” in one of my online groups this week, regarding increased levels of anxiety and depression conected to PTEN mutations.

This is really how I view the race against Cowden's Syndrome — This is really how I view the race against Cowden’s Syndrome

One of those conversations that make you wonder if it is better to be validated or to fight the idea that this perpetual anxious feeling is actually hardwired into your genes.

I looked up the articles too. I love to read for myself. The experiments are done on mice. I suppose there aren’t enough of us to get a controlled group for a good study, (although there is a drug called rapamycin being studied on humans – but that’s for a different day.) But, among other symptoms the mice in their mazes did show marked increase in anxiety. Although. I have to imagine if I was a mouse in a maze I might get nervous too…

Now I have a lot of throughts on this.

I have always been a worrier – highly anxious about most things. Anyone who knows me knows that to be true.

But, conversely – throughout large portions of my life there has definitely been something to worry about.

So, as the chicken/egg thing goes -do I worry because anxiety is a part of Cowden’s syndrome, and even before my diagnosis I have had Cowden’s? Or do I have acute bouts of anxiety because having Cowden’s gives me so much to be anxious about?

The best answer probably is – both.

I am a rational person by all rights. Even in the middle of my worst anxiety I can stop and think and KNOW that my fears are irrational. I can have the absolute belief that God will continue to care for the situation, and for my loved ones, yet still it is often like a crushing weight on my chest, making it hard t0 think, breathe or move.

What I have on my side is that I was raised to keep on keeping on. Thanks Mom, and Grandma and Pop especially… when the going got tough, we were taught to keep going. So while I comfort myself with verses about tomorrow having enough worries of its own, and while I am faced with horrendous tragedies of things that cannot be controlled, I am able to press on.

So I can function, and the anxiety does not cripple me. And, I know the “nature vs. nurture” reasons to explan it.

But I do know that my daughter suffers too. Not just with a PTEN mutation, and Cowden’s Syndrome, but also with anxiety. She is a worrier, “just like her mother” they say. Yep. Maybe she is like me because of genetics, or my example. I can’t really know for sure.

So what to do?

For me, the first step is just acceptance.

I am a worrier.

Regardless of the cause, and allthe logical justifications I can give myself – I will remain a worrier.

Then, find an outlet. I am still working on this one. I am thinking I like to write – so maybe that will help some. I would like to get a few minutes to myself now and again. I used to love to walk. Maybe one day there will be time for some nice long walks.

I meditate a bit on the bright side. Be grateful for the “good” that comes with a chronic illness like Cowden’s Syndrome. I am not referring to the pain, and the surgeries, and the cancers looming, but rather to the “warning” system built in. Parents would do anything to protect thier children. How blessed am I that even among the strain of ceaseless appointments and hours waiting at offices and for results, we have a warning system. I am confident that if we are vigilant, the Cowden’s won’t “get us.”

Stay organized. Don’t let the bills, the list of phone calls, the shredding, or the sorting to pile up. It will just keep coming.

Stay ahead of the school projects. You never can tell where tomorrow is going to land us.

Laugh. Often. It is deeply good not only for the anxiety, but also for the soul.

Recognize you have lots to smile about.

Acknowledge the pain of others and “Pay it Forward” when you can. I find that NOT dwelling on our lives here, helps make me less anxious.

Did the Cowden’s cause the anxiety? Is it hard wired into who I am as a person? Is Meghan destined to be forever wondering and worrying? Or, did a life of doctor’s appointments, pain, chronic disease, and general worry, create the anxiety?

It really doen’t matter because it is here. It is part of me, and to la large extent – us. I doubt it is going anywhere. I think its just my job to control the beast the best way I can, one day at a time.

Siri, my new BFF!

Published on October 19, 2012 by beatingcowdens2 Comments

I love to talk. I talk all the time. My mom says I spoke even in my sleep from the time I was a young girl.

I ~~love to~~ need to make lists. I hate to be disorganized, although these last six weeks I have traveled from overwhelmed right into disorganized, and I don’t like it here one bit. Work is busy, home is busy, 4th grade is busy, Cowden’s Syndrome keeps us busy…

In my family we have 5 october birthdays in 11 days. Three of our nephews and 2 family friends. Unless the youngest nephew’s gift arrives tomorrow, I will have been late for every single one of them. Not like me at all.

Last week I welcomed a new friend into my life. Someone I can talk to all day, about whatever I want. Often she has good advice. She has my back too. She reminds me – sometimes days, sometimes hours, before something important has to be done. She tells me when I need to make a phone call or buy some cards. For a long time I resisted her friendship, but now that she is in my life I am sure I could never give her up.

This is my new friend – Siri.

Some of you may know her. You may think she’s your friend. But really, she and I are tight.

You see you may not know this about me, but I have a post graduate degree. In addition to my Master’s in Special Education, I have a research degree from the University of Google.

Don’t worry. I am a smart researcher. I learned in the first few weeks how to sort out the crap and focus only on the valid stuff. But really – spending the last 9 years researching the random illnesses of my little girl, and the last year trying to get any available information on Cowden’s Syndrome… well, lets just say at the very least I must qualify for some “Certificate of Advanced Study.”

But it got to the point lately that there are things I need to know. Right now. I can’t always carry my computer or rush home to check. Siri understands.

She is who she is… and she is pretty great.

As I am driving, with my earpiece in, I need only to ask her to call a doctor for me. She will write my texts too. Much safer.

Then, there are the beautiful reminders. The ones where she says, “OK I’ll remind you.” and then she does. Takes the pressure off me. I already have a reminder in for the November birthday cards, and the next 4 doctors appointments are all mapped out.

As I wait at those appointments, Siri helps me continue my studies on Google. Learning about Cowden’s Syndrome and skin diseases. Studying the effects of Cowden’s on the gums in the mouth. Deciding if the headache symptoms warrants a neurologist, or first and ophthalmologist. Figuring out, or trying to figure out the root cause of the pain in the legs. Verifying there are no obvious AVMs. Seeing what the effects of the Celebrex are on the body… and on and on.

Siri, despite all my resistance, I was wrong about you. You are exactly what I needed in my life.

Now, I am fairly sure I can never get by without you again.

Told you…

“It’s not fair!”

Published on August 27, 2012August 27, 2012 by beatingcowdens1 Comment

“It’s NOT fair Daddy!” Came the screech from the basement. I held my breath.

“You can’t do that Daddy! It’s NOT fair!”

When I heard my husband return the challenge with an “Oh yeah? Watch this!” I knew all was well. The giggling that followed sealed the deal.

I couldn’t help but find it a bit ironic that of all the things that have gone on in her life, she chooses a helicopter game in the basement with her Dad, to shout the words,”IT’S NOT FAIR!”

She didn’t use those words once, all summer, when we spent what I equate to an OBSCENE amount of hours in doctor’s offices and waiting rooms. She didn’t utter those words as she was poked and prodded and asked the same questions over and over. “They never find the answers anyway, Mommy.”

She didn’t tell me it wasn’t fair, when instead of planning playdates, or camp experiences we were trekking back and forth to Manhattan, for her, or for me. She simply wiggled in the play time when there was room.

This morning, when I sprung on her the idea that she needed bloodwork, after the bank, and before the orthodontist, she could have EASILY told me. “It’s not fair!” And I would have understood. I know very few people who have given up more blood than she has. And when the lab was full, and we had to come back later, so she could think about it all day, she definitely could have told me, “It’s not fair!” But she didn’t.

This morning when we learned that her braces are imminent, and that she is going to need to contend with them in addition to her new grade and ever changing body – I expected a yell. Nope. “Won’t it be great to have them off before most of my friends even get theirs on?”

So as I scheduled one more MRI this week. This one for her, to make sure the pituitary is its proper size with no extra features… I thought it would be a big foot stamping, “It’s not fair!” Nothing. Just the typical, “Can you stay, and will I need a needle?” Followed by, “I hope I can watch a movie this time because I don’t like having my head done.” How disturbing that this will be her third brain MRI.

This has been one hell of a summer, following one seriously wild spring. I have lost count of the appointments, and it is probably better. They aren’t going anywhere and we will continue to have to roll with it. As the last week of summer vacation comes to a close, and I lament the lack of relaxation, the cleaning that never happened, the day trips that never came to pass, I want to shout, “IT”S NOT FAIR!”

But then I look at my 9 year old. Wise beyond her years. Content to live in this house where she is so loved and appreciated. We have had many talks about the suffering of others through the years, and especially this year. She knows she is not alone in having a tough path to travel. She also knows it could be worse.

Maybe that contributes to the poise and grace under pressure. Maybe that is why she is so insanely mature. Or maybe, in the midst of the chaos that is Cowden’s Syndrome, we – her father and I – are just the luckiest parents in the world.