Thriving Thursday

More on Depression

It's a known fact that people with Neurofibromatosis suffer from depression. I mean who wouldn't be depressed with having a condition that alters you physically, and causes severe, uncontrolled pain?

Sometimes I still find it hard to accept that I was "tagged" with this disorder...and sometimes I still find myself wavering in my explanations to others, about what is happening to my body.

I am a work in progress....I continue to strive for the honesty, rather than the hiding or flat out deceiving others about my NF. Not because I no longer can "hide" my NF, but because it honestly feels good to talk to others about it. When I can teach another human being, and have them look back at me, with shock and amazement that I am 'doing so well' , I get an overwhelming sense of peace and happiness.

I don't take any medications for my depression. Mostly I take accountability for my actions and push through it. But I tell you what, it is HARD to do. I find myself struggling with keeping my moods even, and my spirits up.

If I could find a magic pill to take that would keep me happy, I would....but I honestly feel that there are no magic cures for depression. It takes a lot of acknowledgment and responsibility to manage your moods. Accountability and realizing that you are not alone...and sometimes, the hardest thing of all....reaching out to others.

My New Year Goals:

To Acknowledge I am NOT alone :)

To be a friend to EVERYONE--even the stinky /jerky people :)

To THRIVE with NF, in everything I do

To finish / publish / and sell my book

To donate and support CTF

To continue to support my fellow NFers! (I love you all)

To go to NIH and have surgery, and arrive home safely

To lose 30 or more pounds

To support the changes in my hubby's career

To help my kids THRIVE and stay healthy

Post your NEW YEARS GOALS!!!

Happy New Year

Whacky Wednesday

My daughter looked at me the other day, after I mentioned being a little scared for my trip to NIH. "Aren't you a little old to be scared of doctors?" she asked. I rolled my eyes at her and drew her near to me. "You can be too old for a lot of things, but you are never too old to be afraid." (quoting one of our favorite holiday movies 'Home Alone')

My inquisitive little 9 yr old daughter began asking questions about why I was going to a hospital "ALL the way on the other side of the planet"...

She knows about Neurofibromatosis, at least she knows her mommy and 2 sisters and brother have it...But I thought I would take this opportunity to teach her a little about the disorder. (I mean hey, that's what we are all trying to do here, right? And you never know, she may just grow up and be the person to discover a real cure for NF)

So I went to the handy dandy Netbook, and typed in WWW.CTF.ORG ( I love this site ) and read to her the definition of Neurofibromatosis. I was amazed at her understanding and praised her for wanting to know more about this lifelong disorder.

As I was talking to her about the tumors that mommy has (glomus tumors) I told her that they cause mommy a lot of pain. "The drs here don't know much about NF, honey so I'm going to a place that knows ALL about it."

"I thought Drs were supposed to know everything though...why don't the ones here know how to help you...?" LOL My reply to that question could go on forever....but, I simply stated that there are soooo many illnesses, and diseases out there and not enough doctors. Which is true.

"How do we get more doctors to know about NF Mommy?" (Dang this girl is smart!) I hugged her and told her, "We just keep fighting, keep talking, and we don't hide from what scares us." She just looked at me and said something that melted my heart...."You're the bravest mommy I know, I will miss you when you are gone."

Another person educated about Neurofibromatosis.....will you take the time today to teach someone about it?

Turn it around Tuesday

Beating Depression

I've battled with depression my entire life. I've been on countless medications, only to find myself feeling lost and numb. I never quite figured out what was going on.

I watched my mother battle depression, and even to this day, she is in a daily - constant struggle.

Some days, I really have to fight to stay positive, and some days I lose, but what is most important, is that I always come out of it.

Here is a great website I found, that has awesome information about overcoming your depression.

http://www.lifedynamix.com/articles/Mental-Health/Tips_Overcoming_Depression.html

1. Recognise and acknowledge it.
Recognise that life is full of ups and downs and even though now you may be feeling unable to cope, it will not last forever. Know that you are not a failure for being depressed, you are brave for addressing it and wanting to overcome it.

2. Be aware of your thoughts toward yourself.
You will just add to your depression if you get up every morning and tell yourself how depressed you are feeling and how difficult life is for you. Focus on the positive. There is at least one good thing in your world. Maybe it's your family, children, hobby, job, friends or church. Think about it when you are feeling down and of how lucky you are to have it in your world.

3. Develop an attitude of gratefulness.
Many people feel depressed when they look at the negative conditions in their life. Learn to think and dwell on the positive. Get somebody to help you and pull you up each time you begin to complain about something. Find one thing every day to be grateful about.

4. Avoid substances that can cause mood swings such as alcohol, caffeine and high sugar foods.

5. Keep yourself busy.
When you are active, your mind has the chance to wander and focus on negative thoughts that cause you to become depressed. Find something that you love to do, something you are passionate about. Maybe cooking, making crafts, animals, web design. When you find your passion, get busy working on it and keep yourself busy.

6 Exercise regularly.
Outdoor exercise is a key element in recovery. If you are sitting in a dark room all day with the TV on and the curtains drawn, it won't make you feel good about yourself! Get out at least once a day into the fresh air. Go for a walk for 20 minutes or a jog. If you are on medication, always consult your doctor before starting up a regular exercise regime.

7. Go out of your way to do something for someone else each day.
When you are feeling depressed, usually all you thoughts and mood are focused on you. Turn your attention to somebody far worse off then you and then start to reach out to them. You can do this by volunteering for a local charity, taking a group trip to a 3rd world country, visiting a lonely elderly neighbor. It will do you so much good because it takes your attention off your own problems or grief and helps you practically help somebody else in the midst of your own pain.

In overcoming depression, remember that
“You haven't lost your smile at all, it's right under your nose. You just forgot it was there.”

Motivational Monday

Back to the Eye Doctor

The hussle and bussle of Christmas is over and we must now get back to "normal". Strange isn't it, that we spend so much time and energy on a day that passes like all the rest?

We had an amazing Christmas! The gifts that poured in were amazing! I don't know if anyone who gave to our family reads this blog, but I wanted to thank them anyway....The amazing lesson you teach, by giving and blessing others, is priceless! God Bless you!

Today, Rachel and I get to go back to Dr Shae. Rachel will have her vision tested again, to see if there are any changes. Today, I will not worry about the results....I will simply hold Rachel's hand, and walk to this appointment bravely, just as she does (She actually runs, skips and gallops) She isn't afraid of these results. Rachel just faces life bravely and moves on.

So today, I am letting Rachel take the lead.

For those that don't know, Neurofibromatosis, has affected Rachel's vision....but not with an Optic Glioma. Rachel has a brain tumor on the basal gangelia (we are still learning what all this means, but so far we are learning it means Rachel's vision in her left eye is very poor)

We go in to the Pediatric Ophthalmologist every 3 months to check on Rachel's vision...The last visit, showed no changes to her vision....the 2 times before that, showed significant changes...So today, we face the unknown.

But just as Rachel holds onto that hope, every single day, I hold onto it too. I know that whatever the outcome is for our day today, we still have our HOPE to build our dreams on.

I love you Rachel!

Thriving Thursday

In 2 wks, I will be leaving for another trip to The National Institute of Health for surgery. I am both excited and nervous for this trip, and I know the outcome will be worth everything I have gone through to get there.

I have what's called Glomus Tumors. These painful little suckers are fairly common, with my disorder, Neurofibromatosis, but I have yet to come face to face with anyone else who has suffered from these things.

When I visited NIH, back in July of 2009, I had the privilege to meet one on one, with a doctor who specializes in Neurofibromatosis. I got to ask questions, and let every frustration pour out of me, about the health care I have gotten] . It was an amazing visit, and I had a lot of my questions answered.

During on of the discussions, Dr. Stewart asked me if I had any pain in my fingertips, or toes. I hadn't mentioned this to him, because I really hadn't thought it was related to NF at all....but to my surprise, it had everything to do with my NF.

I was sent for an MRI of my left hand and it was confirmed I had these tumors that a small percentage of NFers have. (Lucky Me...eh?) I was asked if would be interested in coming back to NIH to have the tumors removed....so, here I am, 6 months later and VERY ready to have this done!

A week away from the family is both a blessing and a curse. I'm scared to go and leave things here in Washington. Not that my family can't handle things...I know they can, I guess it's just the control freak inside of me that wants to be sure everything is handled for the family.

I will try to keep my mind on the task at hand, but I know, even being on the other side of the country, I will be thinking about my hubby and my kids here at home and missing them so much.

For now, I can enjoy the Christmas season, and soak it all in. Living for the moment, just like good ole Frosty the Snowman.

Merry Christmas Friends