Update 1/15/19

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Where, how, why, what’s the point?

I know we’re encouraged to have faith during our trials.

But, how do I get some?

I’m constantly nauseous because the realization is hitting me harder and deeper: I cannot afford to live.

Why would Heavenly Father bring me through 2 brain surgeries, and a host of other surgeries, for this?

I feel terribly guilty. I feel like and AM such a burden. No one understands the inner turmoil this brings me.

This is all my life is?

Physical Therapy 9, where I worked my butt off today!

I wrote a post a while back about Lhermitte-duclos Disease robbing me of my confidence.  Confidence in work, life, etc.  But, thanks to Physical Therapy and to the P.T. (who is really awesome, BTW), I’m seeing continued progress and dare I say I’m gaining some confidence?  Progress is scary for me though!  I don’t know how to embrace this, if that makes sense.

Being around the P.T. raises my confidence, because he’s very adept in his people skills.  🙂  He says the right things to make me want to try my very hardest.  That’s the sign of a great medical professional, don’t you know.  At today’s appointment, he and I saw so much more progress in my balance.  He said something to me like, “Did you take a shot of awesome sauce before you came?” or something funny like that.  LOL.  It was really neat because I think he and I both could see the changes in me.  The balance exercises are getting a “tad” easier…I wonder if that means P.T. will have to start making them harder?  🙂  I almost started to cry again at the appointment today.  When I think about where I was 4 years ago, and where I am now, I get overwhelmed.

Here is the kicker though:  Why is it with change comes fear?  Why can’t I embrace change with all the faith in the world?  Why can’t I be joyous and free instead of feeling dread waiting for the other shoe to drop?  This is GOOD change, for Pete’s sake.  Is it because I’ll never be out of the woods with these Rare Diseases?  I’ll never be able to breathe a sigh of relief?  I just have to take my small victories as they come, I’m sure.  And, this progress with my balance is FOR SURE a huge victory, not even a small one.  I always leave the office sweaty, wanting to do more, and yet sad it’s almost over.  Is that weird?

Guest Post – Meet Gracie

Social media is a wondrous thing when used for good, and I am happy to share that I have connected with another person who is living LOUDLY with Cowden Syndrome.  Please meet Gracie!

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Hello! First of all I would like to thank Heather for giving me this opportunity to write this post. I’m very happy I got the chance to meet her via social media!
Well, I’m Gracie and I have a pretty hefty list of medical issues.  Epilepsy, goiter, sclerosis, a spine tumor, some nerve damage, tilted pelvis, messed up hip and foot due to nerve damage.. I think I got it all! Well, once my spine tumor was found they put all of this together and with some genetic history from my dad’s family they found out I have what is called “Cowdens Syndrome.” Most people are already into adulthood when they are diagnosed with cowdens. I was sixteen when they found out I have it.
I spent a lot of time.. sad. For a long time I was in a state of thinking it was unfair. I still understand feeling like it was unfair. When you’re sixteen and you’re watching all of your friends get their permits before you because you have to wait five months before you drive again, or having a seizure at a concert and realizing you can’t do your favorite thing anymore. Obviously there is a lot of bad in the situation. You see though, things started changing for me when I got the job as a missionary. The job was amazing. I worked with people in Canada and I worked with kids in numerous camps. I taught classes and I got the chance to visit some very cool cities. It was great.. then it sparked an idea.
I decided to start a blog while working as a summer missionary. Hence, The Seventeen Year Old Missionary. As my blog started writing about cowdens intertwined with writing about missions. My main goal is two things, share my faith and spread awareness. I’m currently seventeen, a freshman in college, and working towards a degree in teaching! Thank you for reading my story!
Reach me:
Twitter: @gracie_cabral
Instagram: @gracies_nail_art
Facebook: The Seventeen Year Old Missionary
Thanks again Heather for allowing me to share!

This is my new mantra

Enough said.  I may not do it right all the time, and fear is going to get me some times, but I MUST. BE. STRONG! I must live my life fully and I do not want to be that scared little girl who is fearful of every little thing.  I ran a lot on fear before July 18, 2011.  Now, more than ever I HAVE to be FAITHFUL and not FEARFUL.  This quote is fabulous.  I love it.

I wonder why?

I seem to talk a good game about faith when things are going good. But when things take a turn for the worse, or what it seems to me and I pray it’s not, I seem to forget all I’ve learned?

The 2 great things I fear most right now is having to have a shunt put in and the breast cancer risk. We have dodged the bullet for the shunt right after surgery because the ventricles in my brain went back to their regular job duties and the water can be moved around appropriately. I’m not clear if all of a sudden the water or ventricles can freak out, do something weird, or some such thing. All I know is something has been off the last 2 days.

I am in the bad place because all my symptoms match hydrocephalus (most of them anyway) but I also just started a new herb 2 days ago that in my research…is supposed to help keep the tumors small. I am stopping the herb today and praying my symptoms go away. Plus I see the oncologist tomorrow and will be telling her all this.

All the while I will continuously be praying today to stay in faith. If you pray-will you please say a prayer for me for health and strength to stay close to the Lord? Thank you.

Busy is good

Busy is good.  Being positive is good.  Seeing a counselor is good.  Researching all I can about Cowden’s Syndrome is good.  Walking is good.  Staying in faith is good.

Good days will come.  Bad days will come too.  I have to get some routine back in my life and I think I am doing some parts of that.  Or some normalcy, or some things that I did before I got sick. I walked a lot before the surgery. I read and I crocheted and stuff like that.  I really enjoyed the counselor I met with today and I should have taken notes!  🙂  But, I need to build back the trust I had before July 18.  I have all these thoughts in my head and they are so scattered, but as much as I want to write “well” – I just need to get them out of my head.  Hence – writing here.

My anxiety is heightened, obviously, but I am stronger than it and I will not let it overpower me.  So, as soon as this post is finished I am going to get away from the computer and no longer doing any more research tonight on Cowden’s and ECGC and PTEN and mTor inhibitors and things of that nature.  Part of me thinks I get the connection between all of this  but then part of me is still confused about it.  If in fact the labs come back with confirmation that I have this syndrome – the broken gene means my body has problems suppressing tumors.  Then mTor comes into play – but I haven’t yet figured out how exactly.  And there is ECGC, curcumin, and reservatrol (sp?) that also come in that are positive things.  So.  Instead of staying online until 2 a.m. trying to find the answer RIGHT NOW of what I need to do RIGHT NOW to start taking a supplement or herb or pill or whatever RIGHT NOW (so that I can be healthy and healed and be OK!) I have to remember that these tumors didn’t develop over night and that doing the footwork is going to take time.  This is OK.

Faith without works is dead and I am working on my faith and making it stronger – making that muscle stronger and I am also doing the works.  researching and praying and pondering about these things I come across in my health journey and asking God if this is the right road for me so that I may have the most optimal health throughout the rest of my life.

And, it”s 9 p.m. which is my cut off time.

Good night.

Continued research

“I live in faith not fear.”

If I had even a nickel for every time I said that throughout the day I’d be a billionaire.  I am sitting at the computer looking at all these pictures of me with the kids and I wonder, “How big was the tumor then?  Did I even have it then?  What did I do recently to cause it to manifest now?”  I know those thoughts are rather pointless but they still remain.  The road you tink you are on can be changed quite quickly before you know it.  The point, rather the important point, is what do you do once you find yourself on the NEW road.

This thing is so weird.  So very weird.  I have done some research on the computer with the terms “green tea, gene expression, and Cowden Syndrome” seeing what I can find.  Nothing much, unfortunately.  I found this article talking about green tea and gene expression with metabolism and high blood pressure, I think.  And that made me think about Cowden Syndrome.  Granted, we don’t know if I have this syndrome yet or not and while wondering about it causes the fear to creep (rather – SNOWBALL) into my mind – it’s still good to do as much reasearch as I can to try to learn.  It’s confusing though.  And, when the fear snowballs in…that is the time I strengthen my faith muscle and do all I know to remain in faith and not fear.

I’m finding good articles on the health benefits of green tea so that is great reading.  Breast cancer and fish oil possible benefits, etc.  So much to read.  So much to process.  So much information.  I think now about foods I eat, drinks I drink, stuff like that.  The people I associate with, the thoughts I keep in my mind (faith), stuff like that.  (haha, I just wrote that).  I think it’s better that I write on my blog in the mornings or afternoons, not at 8:15 at night because I really have trouble getting my thoughts out.  🙂

Today was really good – went to watch the kids play soccer and met a friend (SSJ) for lunch.  Feeling stronger every single day.

Hum

I meant to update today on the oncologist appointment but I just can’t bring myself to do it.  I know that sounds very dramatic, but I just have lots to do today and I know that it will bring up a lot of emotions that have controlled pretty well this afternoon.  🙂  So, we will leave well enough alone and maybe I’ll attempt the post tomorrow morning.

Spent a great evening with a friend yesterday for dinner (but we split a salad and sweet potato fries) and then for lunch yesterday Mom and I had Thai for lunch with 2 other good friends who are going to HAWAII in a few weeks.  Now I won’t say they are bragging or anything (BRAGGERS!  If you know them – ask them how many times they have been to HAWAII!) but – if the shoe fits….  (Now, I don’t know if they read my blog but I am TOTALLY joking.  They were not bragging at all.  But just for the record at the table of 4, I was the only one who hadn’t been to Hawaii.  Even Mom has been to Hawaii.  Just sayin.)  I love Thai food, but I guess I should say that I love curry because that’s the only thing I eat when I go.  Mom eats Pad Thai and never changes and I never change from curry.  Except that sometimes I get yellow curry and sometimes I get shrimp instead of beef.  🙂

I am going to be great.  My friend said last night that Dr. Oz said it’s never too late to make changes.  Now, we’ll probably never know what cause(s) or cause(d) the brain tumor(s) and I can speculate if it was Diet Coke, or over consumption of sugar or x or y or z…what I can focus on now is that I KNOW of this syndrome or disease that I have.  I have the awareness now that my body has some serious issues and I must keep up a CONSTANT AWARENESS of what I put in my body.  Including liquids and things of that nature.  So, I will be mindful of the food choices I make starting…well, about 6 weeks ago since today is 7 weeks since the 2nd surgery.  I sure remember waking up from the anesthesia as if it were 5 minutes ago.  GAH.  My heart hurts remembering it and I am so filled with gratitutde that I am home with my family and my cats and my routine around me.  It’s hard to be thankful when you are petrified but then when times passses your heart can be filled with the realization of time passing and the healing hands of the Lord.

I have a house full of post it notes, I think I have written about this before, and I am just so drawn to positive quotes because I just want to be filled with positivity (is that a word?) since this is a bumpy, scary, road.  But lots of people are on bumpy and scary roads and are succesful and happy and joyous and I am going to be too.  I am living my life full of faith and happiness and wonderous excitement of my future and all it holds for me.  But here’s the quote today that I really liked:

“To change your life: Start immediately, do it flamboyantly, no exceptions.”  — William Jones

Very cool quote.  It’s going on my door in my room or in the bathroom or kitchen.

Timing

I’ve been going back and forth between faith and fear.  I might always struggle with that, but I hope as I continue on this road and become a better and stronger and “Powerful Patient” (Thanks Patty!) that faith will be more and more part of who I am.  I think it is deep down, and in my head I know I have faith.  But putting it to practice is another thing.  🙂

Today in my email I received this email from  – Rhonda Byrne Creator of The Secret and The Power

From The Secret Daily Teachings

Faith is trusting in the good.  Fear is putting your trust in the bad.

The timing in me receiving this email is not just coincidence. This quote is going up on post-it notes all over my house.  🙂