Thursday, October 31, 2013

Day 22

Day 22:   How do you feel you have been treated by the medical system?   Explain.

I've written about this countless times - but I was definitely unfairly treated up until I met Dr. P

I was NEVER taken seriously, I was immediately judged just based on my weight alone.

I am so thankful for Dr. P and his staff.   That's no secret.  In fact, I see him on the 15th!!!

Wednesday, October 30, 2013

Day 21

Day 21:   What networks/websites have you visited for support or information about this illness?

Click my "articles" label!

I did go on soulcysters from time to time but most of my networking has been done via email and facebook/twitter.  

The good news is the more PCOS is "talked about" online, it seems the more information is out there.

I can't imagine having PCOS pre-Internet.

I also have read a wide variety of books.   My favorite is the Savvy Gals Guide to PCOS

Tuesday, October 29, 2013

Day 20

Day 20:   Have you met anyone with the same illness?    Has it helped?

Oh my goodness, yes!!!
I have met so many wonderful women/cysters with my condition and I truly can't imagine my life without them.   They've been a source of comfort, information and strength.   Definitely a blessing!

Monday, October 28, 2013

Day 19

Day 19:  How do you feel about the future?

I'm a bit concerned what will happen with my body and health as I get older.

I'm optimistic.    I managed to lose 30lbs on my own this year and while it's not "a lot" to a normal person, it's a lot to me.    I keep thinking I'll be at goal this time next year, and that's a nice thought!

I do want a second child but I worry about how that will work out health wise and also in regards to finances.     We teacher folk aren't exactly rolling in the dough.  

Sunday, October 27, 2013

Day 18

Day 18:  Do you think you are a better person through being ill?   Explain.

I do.   I think having these conditions and especially going through infertility has taught me to enjoy life.   To take time for me.   It has taught me compassion, patience, and understanding.    I take nothing for granted.   There isn't one day that has gone by where I haven't thanked God for Elliot.

Saturday, October 26, 2013

Day 17

Day 17:  How would things be different if you weren't ill?

This is really a tough question because PCOS and Hashimoto's has impacted my life so deeply that I can't really imagine a "normal life."

Perhaps I'd be thinner?
Less tired?
Maybe actually enjoy running?

I'm really not sure....

Friday, October 25, 2013

Day 16

Day 16:   What is your favorite inspirational quote?

I have found many quotes that I find inspiring.
Such as, "I have PCOS, PCOS does NOT have me."

My favorite quote was actually part of the sermon my Pastor gave at our wedding.
He said, "Love God.  Love One Another.   Nothing Else Matters."

This was really important to me, and still is.   It helps keep me "grounded."

Science daily article

Science daily article about PCOS

Thursday, October 24, 2013

day 15

Day 15:  What would you say to people newly diagnosed with this illness?

  • Research
  • Make sure you have a doctor that knows their stuff.
  • Make sure you are comfortable with telling your doctor anything and everything
  • Trust your body and what you are feeling.
  • Do not take "no" for an answer - you know you - you know what it is you are experiencing - voice those concerns and get the medical attention you need.
  • Find some sort of support group whether it be online or in person.
  • Make sure you are eating healthy and not making the condition worse by polluting your insides with junk.   Eat as clean as possible.
  • Exercise daily - even if you only go for a 10 minute walk - do it.   
  • Pay attention to your body.
  • Have labs done at least every 3 months...

Wednesday, October 23, 2013

Day 14

Day 14:  Give 5 things you are grateful for.

1.  GOD.   Enough said.   He dealt with my anger towards Him.   He helped me out of dark places.   My faith is so much stronger because of infertility, pcos, and Hashimoto's.

2.  My husband.  He's the love of my life.   He has loved me when I haven't loved me.

3.  My grandmothers (now in Heaven).   Especially the conversations with my Mommom as we were struggling.

4.  My friends, including cysters near and far.  

5.  Dr. P and his AMAZING staff

and all of these things lead to me being most grateful for the honor of being Elliot's mommy.   :)

Tuesday, October 22, 2013

Day 13

Day 13:  Has your physical illness had any effect on your mental health?   Explain.


I worry.   However, the problem is I don't worry "enough" to be medicated.   My anxiety is not crippling per say.    I worry over silly things.   For example - say I'm in a meeting in the school auditorium and I end up getting a seat in the middle or not an end seat.   I may then worry, "Oh my gosh, what if I have to get up to use the bathroom and crawl over all of those people?"    It's a silly thing to worry about.   And sometimes (not all the time) I worry about what people think of me.

Or if my husband doesn't answer his phone/texts/emails - it causes me to worry.

I think a lot.   However, I'm also a writer.   It's what we do.   Sometimes I think too much.   Too deep.   I'm too critical.   I often joke that I have no enemies because I am my own worst enemy.

Anxiety has definitely impacted my life - but luckily I know ways to deal with it now and the people close to me know how to help me with it as well.

Monday, October 21, 2013

Day 12

Day 12:  Briefly explain to a healthy person what it is like to live with this illness.

Briefly explain PCOS?   AND Hashimoto's?

My body is a bit broken.    Things don't function as they should.   When these things don't function, it impacts other things.   For example, when my ovaries decide to go on strike it can mean I have a rapid weight gain or a missing period or a violent period or a rapid weight gain with no period followed by a ridiculously painful and heavy period.    When my thyroid is acting up I can be extremely cold, extremely tired, and feel all-together horrible.    When both act up together, I'm in excruciating pain.  I'm broken.   That's the cliffs notes of it.

Sunday, October 20, 2013

Day 11

Day 11:  Why do you believe you have the illness?   Bad luck?  A higher power?  Or something else?

It's truly my belief that everyone has a cross to bare.   For me, I have several all under the umbrella of PCOS.   Even my thyroid condition is a manifestation of the PCOS.

I could get angry and think I'm cursed or being punished, but that's just silly.

This is my challenge, this is something that has happened that is not my fault.
I can't change my genetics.   I can't change the diagnosis either.  

What I can do is pay attention to my body.
I can talk to my doctors about anything I'm experiencing.
I can network with other women and voice my concerns.
I can remain well educated and well versed and keep up on the latest research.
I can fight back by making healthy choices for my life.  

Saturday, October 19, 2013

Day 10

Day 10:  What little things make your life easier?

  • Having a doctor who GETS me and understands me now.   This sounds so silly but it took years to find this doctor and to find out exactly what the deal is.   Even if he retires (he's been doing this for almost 40 years) I now have that hard data PROVING the issues are there and exist.
  • Having a patient husband - he is incredibly helpful.    My husband gives me my medications so I don't forget and either take something twice or not at all.
  • Social networking - when I have a problem and I can't solve it right away - I can go online to one of my groups of cysters and see what the deal is - if anyone could relate.
  • Taking time to BREATHE and think things through.
  • Writing.

Friday, October 18, 2013

Day 9

Day 9:  Have you ever tried any alternative therapies?   If so, what?   Did they work?

I did try inositol and choline for some things and it was working but not working enough to bring on a strong ovulation.    I also tried cinnamon when I was on straight up metformin and metformin XR and that did not work at all.    The only thing that TRULY has worked for me thus far is being gluten free.

Thursday, October 17, 2013

Day 8

Day 8:  Where do you see yourself in five years time?

I honestly don't know.
doing the same things I do now....

Hopefully with a second child?

I'm not sure, I've learned that if I plan God laughs.  He's in control.

Wednesday, October 16, 2013

Day 7

Day 7:   What was the biggest realization that you've had?

Well, don't hate me for this ya'll....

Everything happens for a reason, and it's in God's plan for me, and in His time.
God created me, it's not always my place to understand my body which was His creation and His plan.

I think back sometimes and think "If only someone took me seriously...."  
"If only my doctors listened....."
"If only we knew my progesterone issues sooner...."
If only...
If only....
If only....

But the reality is I learned from my miscarriages.
I learned from my pain.
I grew from it.
It changed me.

And my pain has helped other women.
I've gone through things that may have helped prevent the same things happen to someone else.

Maybe God was using my body as a vessel because He knew I wouldn't lose my faith in him.
He knew I'd get angry with him, and with myself and with my doctors....
But God created me and He KNOWS when I have a problem - I find a solution.

Years ago while going through infertility, if someone said to me - "Everything happens for a reason" I probably would have beat the tar out of them.   Or threw something at them.   Or even told them off.    There was such anger with infertility - anger out of frustration - out of pain - out of loss!    There's lots of "Why me?"   And "Seriously, God?   Trust me, I had it out several times with God.    I told God that He was being completely unfair to me.    But then it hit me.   Look what Jesus went through for me.    Look what God has done for me.    I had to let that anger at God go and direct it elsewhere.   I directed it at my doctors at the time.   I demanded answers.   And as stupid and corny and ridiculous as this sounds, I believe the God lead me on that path.    I needed to get angry.   I needed to find my angel in the world of medicine.   I think too often I took too much for granted and if there's anything that makes you stop and smell the roses, it's infertility.  

There were blessings in infertility.
Look at my ticker on this blog - I have several readers!
I've met amazing women whom I'm proud to call friends.
I've helped my friends.
I've networked.
I've given PCOS a voice and plan to continue to do so.
My marriage was strong but it made us stronger.
It made our love stronger.

And there is not one day that has passed in the past 2+ years that I haven't thanked God for Elliot.    I prayed for Elliot to exist, I prayed for him while in my womb and I pray and praise God daily for him.

It's funny, not too long ago someone made a comment to me about how they were surprised that I am still an advocate for PCOS and infertility after having Elliot.    I looked at them and said, "Wow... you really don't know me at all then....."

Maybe my diagnosis is part of my calling.

I've learned not to question God but to trust in Him and His plan.    He knows what's up.   Everything happens for a reason.    There are lessons.    And for me.... the lesson really wasn't fully learned until I held Elliot in my arms for the first time.   Don't hate me.

Tuesday, October 15, 2013

Day 6

Day 6:  If you could have told yourself something when you first remember these symptoms arising, what would you have said?

I did tell myself something.... over and over again.... 'I'm surrounded by idiots!'


No one caught on to it - but I'm glad those days are O-V-E-R!

Monday, October 14, 2013

Day 5

Day 5:  How does being chronically ill make me feel?

Like a million-fucking-bucks!

Ok, seriously?   This question is stupid.

It makes you feel a bit crazy from time to time!
It makes you a bit pissed!
And sick!
And tired!
And annoyed!

Sunday, October 13, 2013

Day 4

Day 4:  Reaction of family and friends.

Telling my mom I had PCOS was interesting.   As a nurse, I felt she should have seen it.   Known about it.  Something.   But she really didn't.    I still don't know how seriously my family takes it because I think they see it as my "excuse" for being the way I am.   I know that as I began to lose babies, then it started sinking in to people that it was serious.    My Mommom is the reason I have a diagnosis, and she was my biggest supporter.    She understood every single thing I was going through, and I wasn't alone.   My Aunt Anne, also suffered from infertility.   In fact, she was a Dr. P patient!  (yep, he's older, ha)    My grandmother and my aunt were my biggest supporters as well as my Godmother.    My Pastor kept me sane and was incredibly helpful on so many levels as well.

As far as friends - through the power of the Internet I was able to meet many women just like me.   Women who have the same physical issues I do - and not just regarding weight.   Women who were built like me, bled like me, worried like me.... women who had experiences just like mine.    Women who knew the  pain of PCOS and the confusion.   Women who knew the heartache of loss.    Even though PCOS is no fun, nor is the Hashimoto's....I consider myself incredibly blessed .... without these chronic illnesses I wouldn't have met such extraordinary people.   Blessings in disguise.  

I have learned who to talk to about this and who not to.  

Saturday, October 12, 2013

Day 3

Day 3:  "How did you get your diagnosis?"

By being 1000000000000% STUBBORN AND DEMANDING!

I knew something was wrong with me since I was 13!

My family doctor and my family always told me I was being over dramatic.   I needed to eat better.   I needed to exercise more.   I needed to calm down and understand this is puberty and "these things happen as your body adjusts to being a woman."

By the time I got to college I found a new doctor.   They thought the best thing for me was to just put me on the birth control pill.   It didn't help with my weight woes.   I ate healthy.   I exercised at our gorgeous fitness center.   I didn't have a car until my junior year and I walked everywhere.   Weight either maintained or rose.

After graduation and before our wedding we moved to Ephrata, PA.   Met yet another doctor and he said, "Here!  Have some phentermine!   That will help!"    He never ran any tests on me.   I was desperate.  I took the medication and lost FORTY pounds in one month.   I also couldn't eat.  Couldn't sleep.  Was turning into a yellow (literally) raving bitch.   But hey!  Skinny jeans!   Score!   Hubby flushed the pills and the weight came back on in less than two weeks.   Not even kidding.   40lbs.  Just. Like. That.  Off. And. On.    I hadn't a clue what to do so I discovered weight watchers and that rocked my socks.    After being hired for my first teaching job and being married, we moved to Myerstown.

By this time I had had some serious conversations with my Mommom who really gave me a lot of insight I would have never known had I not come to her.   She struggled with infertility, too.   She struggled with a lot of the issues I have and she told me about PCOS being in an article she read about and how she knows she had it even though it was never diagnosed.  

I met a new doctor, got tested and voila!  PCOS.   And a bum thyroid!    I was 24 years old.... I went through over a decade of hell before finding a doctor willing to listen.    But little did I know that that was as far as it would go help wise until 2010 when I finally met Dr. Pellegrini.

I feel my PCOS is under such wonderful control now because of him and his staff.    They listen to me.   They know I know my body.  

Friday, October 11, 2013

Day two

Day two:   How have these illnesses affected your life?


PCOS has affected my life big time.      Growing up I always knew something was wrong with my body and no one would take me serious.   They thought I was over reacting or being dramatic and it made me feel completely insane because I knew something wasn't right in my body.    All doctors saw was a number on the scale.   My issues were chalked up to just going through puberty and that "this too shall pass" when in reality damage was happening, nothing was being corrected, and I suffered for it later in life after my wedding when my husband and I decided to start trying for a baby.

I had expected to have issues getting pregnant because I was over-weight, but I had no idea I'd have the hell I went through with chemical pregnancies and miscarriages.   Because I don't have the cysts on my ovaries, I think most doctors often overlooked a pcos diagnosis when in reality my body just screams it. Many women with pcos lack the actual cysts.

Even as I type this, I feel angry about the past which is completely ridiculous because I can't change what happened.   BUT I can be an advocate NOW for pcos awareness and IF my husband and I were to decide to have another child I now know what to "look for" if the baby happens to be a girl.     I just sometimes wonder "What if...." in regards to PCOS.    What if I would have been taken seriously?   How would my life be different?  

When my thyroid is off it impacts my life mainly due to the level of exhaustion - I can't really function properly at all what-so-ever if I'm "off."     Prior to going gluten free I had joint issues and my hands locked up a lot.    That hasn't really happened (maybe once or twice) since being gluten free.    Also, when my thyroid is off my weight is just all over the place.   I typically know my thyroid isn't "right" when one of two things happens.   Either 1.) I'm super crazy tired, as in no amount of sleep is enough or 2.) My feet are usually ice cold.     When I notice these two things, I then step on the scale and if I have some sort of crazy gain that happened over night (literally), then I know it's time to get labs done.

I will say I am blessed with great doctors NOW and I know my body and I'm grateful.

Thursday, October 10, 2013

Day 1

Day One:  Introduce yourself.   What illnesses do you have?   How long have you had them?

My name is Leigh Anne, friends call me LeLe.   I'm 31 years old and I've been married to my bff since May of 2005.    We have one son, Elliot, who truly is our miracle baby boy.  

I have a wide variety of interests.    I consider myself a life long learner and a memory collector.    I love to laugh and can't stand being bored.    I need to be intellectually stimulated at all times.    I speak fluent sarcasm.  

Now on to the fun stuff....
I am diagnosed with PCOS and Hashimoto's Auto Immune Hypothyroiditis.  

I have always known "something wasn't right" with my body since my teen years.    I never received a PCOS diagnosis until my TWENTIES which is flat out ridiculous.    MANY doctors simply told me I was just heavy and lazy and if I worked out for x amount of hours a day 4-5 days a week I'd drop the weight.   Well, I tried that and all it landed me was some mono.    Pretty much nobody listened to me, or took me seriously.    Very unfortunate.     I was diagnosed with the hypothyroidism when I was about 24.   As the condition progressed I became diagnosed as "hyper sensitive hypothyroid" and after having my son I went from having a thyroid condition to a thyroid disease.   My thyroid went absolutely nuts after I lost my milk supply and stopped nursing.    

Blogging challenge

A few "cysters" are participating in the challenge below.   I was asked to do it as well, and of course I agreed.    I'm hoping I remember to take time to blog each day.

PCOS and Hashimoto's are both considered chronic illnesses.    I hate the term "chronic illness" - let's just keep it real and say we have "issues" - HA!  

Come back to read - comments motivate me!  

Monday, October 7, 2013

Gluten free update!

Going gluten free has truly been one of the best decisions I have made for my health.    My weight loss is at a stand-still right now and I'm actually 100% A-ok with this because I had a wicked case of bronchitis and the medications I was put on caused weight gain.   I'm "up" 4 pounds but I know it's not a true gain.    Even though I've had this minor setback with my weight loss, I'm feeling especially motivated.   Being gluten free has allowed me to feel less bloated and look less "puffy" if that makes any sense?

I think right now the most difficult thing I'm seeing in "Pcos world" is women thinking that going gluten free is going to immediately make them lose weight.   If you were a carb-a-holic beforehand, yes.   It will.   That's just how it will go down.   However, I was not a carb-a-holic, so therefore it is taking time.

I'm just really thrilled with my progress and the meal selections/variety.   It's not difficult at all.   And even though I'm not losing in pounds all the time, I'm seeing changes in my body .... literally!

Right now the big thing on my mind is when to TTC for baby number two.

We're thinking next summer ..... we'll see!   You know how that goes - "Man plans.   God laughs!"

Thank you, Fitbit!

My Fitbit Charge HR broke.   I took it off and it just ... broke.    I got in contact with FitBit customer service and even though my...