Miserable Catch 22

I am currently ill with a thyroid condition without a doctor. I am running out of my low dose prescription.   In order to get to a doctor who will prescribe me an optimal dose of medicine, I need money. I need to be able to pay for tests and visits.  But in order to get money for treatment, I need a job. I am too ill to work , and have since quit my job. 

It’s a miserable catch 22 and I don’t know what to do.  I feel so at a lost right now.  There are good doctors out there, I just know it. I know what is wrong with me, I know now where to look. A good thing right? But now I do not have  a doctor who will treat me. OR even a doctor who will test my FT3 and FT4 levels.  I know this because I currently asked my general practitioner if she would be willing to do this until I found a doctor, Her response? Continue seeing your endocrinologist. Which makes her an A Class idiot because she knows darn well that he is currently my FORMER endocrinologist.  She won’t even help me? The one doctor I can currently afford. What gives?  The more I learn about thyroid disease, the more I wonder how anyone ever gets better. There are too many conservative doctors. They are so afraid of doing anything other than the TSH test.

Man oh man, I have been looking for 7 years trying to diagnose my illness.  It is finally figured out AND now I can’t get treatment.  I can’t put into words the frustration and sadness I am feeling right now. This is suppose to be a happy time in my life. I should be healing and progressing and eventually feeling better. Not to be.

It looks like I will be living life forever on this miserable branch. Can’t I ever fly around like all the other birds?

 

What do I do?

Tuesday Treats #2 And Recovery From Fun

Hello there Peeps!

     Since Saturday, I have been exhausted. Beyond exhausted actually.  It all started Saturday when my family and friends dragged me to a night time  corn maze, and I had to take espresso and b12 shots just to make it through the walking. It was a fun night. I am glad I went. It is soothing to be out and about on a crisp fall night. And it’s hysterical when your friends beat you and taunt you on victory bridge. Mind you, while using a microphone that reaches to the far corners of the maze which everyone can hear, 

     But the recovery time from being sick is just so brutal. I am so weak, breathing is a bit difficult. I actually have an inhaler for these exact moments.  I have to lay in my bed and just forget the world for a few days. Everyone else goes to work, or continues their October plans. Not I. I am forced to recover like a vegetable.  Before you start to think it’s fun that I get to stay in bed, let me tell you that it’s terrifying to be that weak. To not be able to breathe on your own because of this fatigue that has just settled into every organ and bone. I get plenty of panic attacks from the terror I feel. It’s just not pretty.

Well today I am still super exhausted, but I am able to walk about the house. So I decided I needed a pick me up . And there is nothing better, to me, than pumpkin and maple syrup. Put it together, and what do you get? Pumpkin Pancakes! I whipped up a batch of these babies,

Of course, whipping anything up tuckers me out, so after eating a plate, I went back to bed.  Of course. But this is the recipe I followed, and I will tell you the little tweaks I made. Riveting stuff. It makes a lot, so if you are making this for one, get ready to have it all week! That’s a good thing!

King Arthur’s Gluten Free Pancakes

Tweaks: Instead of  2 TBS granulated sugar, I used 4 TBS organic sucanat. ( a free flowing brown sugar that is unprocessed. It really tastes awesome with the pumpkin!) Instead of milk, I used Almond Milk.  I also added about 3 TBS of pumpkin pie spice, and about 1 cup or so of canned pumpkin puree. I did not measure,  I just put in enough to make the batter look nice and orange.

1) Whisk together the eggs, melted butter or oil, milk, and vanilla.

2) In a separate bowl, whisk together the dry ingredients.  Including the pumpkin pie spice. Stir in the egg mixture. Then add in the pumpkin until it looks nice and orange. But not too much, or else it will be bitter. if this happens, just add in more sugar,

3) To make pancakes: melt butter or something of your choice, in a pan.  Scoop the batter by ¼-cupfuls onto the melted butter.

4) Cook pancakes for 1 to 2 minutes, till the tops lose their shine and bottoms are golden brown. Flip and cook for 1 to 2 minutes on the other side.

5) Serve hot, with butter and syrup. – I used Grade B Maple Syrup. Yum!

 

I know it is said over and over again, never reward yourself with food. But you know what? I can’t breathe well, I feel like a corpse, and my frustration and sadness is running high. So I WILL reward myself.  And it gives me pleasure. Finally.

I can’t wait until I get to a new doctor, my thyroid medicine is increased from it’s piddly starter dose, and this weakness does not overtake me  after being active and having fun!  Just writing this has made me a bit tired. I think it is time for a nap.

 

Stay Healthy!- Nicole 🙂

 

 

VH1 Mixtape Festival <3

Hello there Peeps!

This is the video I made of our two day Mixtape Festival Adventure.  I was urged to make this as something for us four to remember as we get older. A reminder of a beautiful summer weekend .If you’re curious, I wrote about this time in my previous post- Carving Out Some Fun.  Just click on the link, turn your volume on,  make the video larger, and here we go!

VH1 Mixtape Festival.

I hope you enjoyed it.

Stay Healthy!- Nicole 🙂

Carving Out Some Fun

Hello there Peeps!

Today, as I sit in my pajamas in the afternoon, I am remembering some of the  fun times I have had recently. Sometimes when I am feeling particularly ill, like today, it boosts my spirits to think of moments in my life where I was able to push pass the exhaustion and have some fun!  Today is definitely one of those days. So I thought I would share an event from this past summer where I was able to carve out some joy and forget I was sick.  Warning: there are plenty of pictures!

FYI- As you read this, just know that I was utterly and completely terrified. It was at this time I was on a new dose of thyroid medicine, and I was unsure how my body would react. I was also just anxious to be out and about, instead of cozied up in my favorite chair.  This was a 3 hour drive from my house, and also an expected physical strain. We would be walking, and walking and walking- from the cars parked way out in the field, to the venue filled with thousands of people. I was feeling weak and incapable. I did not want a sick episode around so many people. But I did it! And it was a success! It took great effort, periods of rest when everyone was singing and dancing, and my lovely sisters to support and help me, but I did it! And guys, it was the most amazing weekend I have ever had!

It was July of this past summer, and I was setting off for a two day concert in Hershey Pennsylvania- The sweetest place on earth! This was  my twin sister’s   ( yes I have one of those) graduation gift to our friend, Monica. As it so happens, Monica is the best friend of our sister Jenna. So together, we made a lovely foursome.

It was a warm and sunny Friday afternoon, and we were on our way to The Mixtape Music Festival, brought to Hershey by VH1.

Me and my red headed twin in the front seat, Jenna and the graduation girl in the back

Me and my red headed twin in the front seat, Jenna and the graduation girl in the back

Three hours later, a few miles of walking, and locating our seats, and we were in!

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This was the two day lineup:

Obviously, with all this good music to look forward to, we were stoked. I have love in my heart for most of these bands.But I especially was dying to see The Script. Those Irish boys can turn a heart into love puddles. This would be my first time seeing them live, so that alone pepped me up and kept my energy churning!

During this first day, something amazing happened. My twin sister saw and met Jim Shearer. This was huge! He is the host of VH1’s Top Twenty, in case you didn’t know this. So seeing him officially made it VH1 baby!

Brittany and Jim Shearer!

Brittany and Jim Shearer!

After the first day we were exhausted. Me more so than everyone else unfortunately. But we were able to make our way to the Hotel. We would be here for two nights, so it was time to get cozy!

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Playing footsie with tired tootsies

Playing footsie with tired tootsies

Saturday, day two, led us onto the streets to find a late breakfast before we got to HersheyPark Stadium.. Seeing ” Gingerbread” in the title automatically got me excited, so we went here:

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And guys, we were the only ones. Turns out, before noon, this place is dead. Everyone comes here for the beer and the good greasy things later. So our breakfast looked like this :

Nachos with beer cheese ( my gluten free dish, I was not yet dairy free)

Nachos with beer cheese ( my gluten free dish, I was not yet dairy free)

And everyone else got a burger, which very cutely came with a Gingerbread Man.  Cute!

And everyone else got a burger, which very cutely came with a Gingerbread Man. Cute!

Not ordinary. But delicious!

Back at that  Stadium, the rain came pouring down. That’s right. Torrential style. And because this event was rain or shine, we bought some ponchos and continued on.

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That was of course until it started to actually storm. The lightning abruptly halted the concert, and Emblem3 announced that we had to go under the bleachers until the storm stopped. This was not a fun 2 hours. My feet hurt from standing so long, and I became very weak. But we eventually found seating in a nearby hockey arena.

Brittany and Jenna chillin' in the hockey arena. Get it? Chillin'? :)

Brittany and Jenna chillin’ in the hockey arena. Get it? Chillin’? 🙂

Eventually the lightning ban was lifted, the rain stopped, and the concert went on as if nothing happened. Before nightfall, a photographer saw Jenna and Monica sporting some homemade Emblem3 t-shirts. So they were photographed and put in the newspaper as  ” Best Homemade Emblem3.”emblem3-frontjpg-3462c8f91140c8a2

" I'm a Chloe"

” I’m a Chloe”

I’ll tell you that seeing TLC was huge. HUGE. This was their first performance since Left Eye died in a tragic accident, about 10 years prior. We felt honored to witness this. It was like we were part of music history.The whole stadium was jumping, and I have never had so much fun singing “Waterfalls”. Apparently Left Eye’s  part in this song is written on her tombstone. And they included her singing  this part during the performance. It was truly beautiful. Everyone lit up their phones and remembered her.

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The finale of the event was NKOTB. And what a finale it was! Our hearts raced, and even our feet, as we rushed to meet Joey out in the crowd.  Me and Monica got to graze him. He definitely has ” the right stuff.” 🙂

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And what do all girls do when they are back at the hotel on their last night? That’s right, take pictures!

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I like to photobomb

I like to photo bomb

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This was an amazing weekend. I was so glad I pushed myself, because there was a fleeting moment I wasn’t going to attend. It would have been easier, and safer for me to just stay home.  But I am glad I did it. Today, as I sit writing this, I wonder how I had the strength to do it back then, because I am definitely feeling weak today. But this reminds me, that maybe, just maybe, I will be strong enough once again.

If you guys can, push yourselves to do something new. Although tough on sick bodies, it’s good for the soul.

I also made a video. Something for us all four to remember as we get older. A reminder of a beautiful summer weekend. I will insert this in a post of it’s own. Look for it!

Stay Healthy! -Nicole 🙂

Tuesday Treats #1

Hello there peeps! ( Bird on a branch, get it?)

So as it may now be known, I am suffering from thyroid disease. What kind exactly, I am still unsure. But as the hunt continues, I am doing my best to ease my symptoms on my own. Especially my number one troublemaker-  bone weary exhaustion.  After doing plenty of research and experimentation, my first successful self treatment is going gluten free.  I have read that some thyroid patients lack a particular digestive enzyme, intestinal glutaminase, that helps digest gluten in various food products. As a result, they don’t absorb nutrients well. This leads to deficiencies that wreak all sorts of havoc. That’s because many energy vitamins are the ones being limited.

I have since found that I am deficient in Vitamin D. I am low in Ferritin and Iron, and b12. All energy vitamins! So While I supplement ( another topic for another time) I will be trying to increase my absorption.  So I am gluten free, and dairy free. Except butter. For some reason I feel just fine on butter. Thank goodness for little miracles.  So far, although my vitamin levels have not increased by too much, I do feel a tad less tired by eliminating gluten and dairy. So  I will take it!

So without further ado, I would like to share the treats I am finding and devouring on this journey. Because, let’s face it, there are many  gluten free options for your meals. But little feel good treats, that actually taste yummy? If gluten free/dairy free individuals find or makes these, it is practically your duty to share.  So this is me doing my duty.

While walking through my local grocery store this week, I was on the hunt for anything that would make me feel a part of the autumn passion that runs rampant at this time of year. Especially in baked goods. Then I saw these adorable babies: :

Just seeing these beauties stacked on high through the little cookie window was breathtaking. Seriously.  It is not possible for me to over exaggerate when it comes to dessert. That would be criminal. So, how did they taste? Absolutely delicious. They tasted exactly as the names suggests. They were definitely full of maple flavor, and the cookies were on the crispy crunch side. I do not know if you know this about me, but I am in love with maple. I could bathe in it and be fully content. Remember, I don’t commit crimes of over exaggeration. I truly love maple that much. This cookies hit the spot where maple is concerned, and I loved them. Even my family members who can have gluten loved these.

With a glass of vanilla almond milk, and my favorite slippers on,  I felt like a cozy rebel.

So there you have it, a delicious gluten free and dairy free treat I have been loving this week. If you see these, give them a try. You won’t regret it!

Stay Healthy- Nicole 🙂

My Doctor Made Me Cry

More like, my Endocrinologist made me cry. And here’s the thing, I hate to cry. I hate for anyone to see me cry. I mean HATE it. I do not like to feel vulnerable, and being tough is one of the only things going for me.  I just feel too exposed when I cry,  the feeling is so uncomfortable to me. There are times when I just want to cry in front of someone so they can see my pain, comfort me. But the vulnerability holds me back every time. So the fact that my Endo had elicited this response is huge. And the fact that I gave into the feeling in front of him shows the sheer sadness and desperation I was feeling.

So here’s how the tears came about,  A few Wednesdays ago I was preparing for my follow up appointment. You know, how you do. I just had recent blood work done, and I was excited about the possibility of finally getting better. I even had a book with me entitled ” Stop The Thyroid Madness.”  ( a very informative and educational read by the by ) I highlighted a page that I thought would be particularly helpful. All I needed was my Endo- we’ll call him Dr. Donkey’s Behind-  to agree it was time to increase my thyroid medicine.

And he says ” No.”

And I say ” Why not?”

” Because nothing is wrong with your thyroid.” Says Dr. Donkey’s behind.

” Oh, I see. You originally thought I was having thyroid problems, which is why you prescribed me medicine in the first place. Than you review biopsy results from a large nodule on my thyroid gland. This is not suspicious to you? This does not indicate something wrong in the thyroid department? ” I am a bit dumbfounded at this point. I mean, I am sure anyone reading this with no medical background would be siding with me here.  Little tiny growths all over my thyroid gland (nodules) plus off enough hormones to initially cause a prescription. A quote from my dad fits perfectly here. ” Where did he get his license, a cracker jack box?” Get it? Back in the day, special prizes could be found in your cracker jack box.   Incidentally, my dad has other cracker jack sayings that I have heard many times.  If anyone is the house looks upset, I hear this: ” What’s wrong? Someone steal the prize out of your cracker jack box?” But I digress….

Dr. Donkey’s Behind responds with “No this is not suspicious, nothing is wrong.  You only have mild thyroid failure. I will be more than happy to give your records over to another doctor. As always, nice to see you. ”

” But don’t I have Hashimoto’s?”

” No, that diagnosis is now off the table.”  Jerk.

It is at this point,  my hope, yet again, plummets to my toes and splashes on the floor like a new puddle. One that I will no doubt slip on as I walk out. Because I am nothing if not graceful. Anyway,  I did not even sleep well the night before, so the likelihood of me keeping me defeat in check was almost impossible. So I cried. Then I realized I was crying and was so mortified, I broke down.Like a baby.

All of the frustration of trying to feel better just tore me up inside.

Could this man really not see it?  Couldn’t he tell he was breaking my heart here? And he could have even avoided that. Listen, I saw my test results. They indicate thyroid problems. And I even need glasses.

Dr. Donkey’s Behind couldn’t have gotten out of that room any faster.  Which is obviously rude.This is a rule everyone should know: If someone has the decency to cry in front of you, you should have the decency to comfort the said crier. It’s only fair.

I am sure if he tried to not make me feel like a loser, I would not be feeling like one right now.

Lesson learned? Some doctors are stupid. And some doctors are jerks. But endocrinologist have the propensity to be both. And they usually are.  I have since learned that some of the best thyroid doctors are actually not Endos.

So this is yet again another bump on my road to wellness. I do thank Dr. Donkey’s Behind for getting me this far, and initially finding a thyroid problem.  At least I know what is the main culprit. Now I just need to find a better doctor to finish the job, Here’s to hoping that happens sooner rather than later!

Stay healthy- Nicole 🙂

A diagnosis!

 

With what you ask? Hashimoto’s. Which, to be honest, sounds like the name of a Japanese Steakhouse. Yummy. But not. Because it’s an illness silly.   And I am so happy you guys. Finally there is medical proof that what I have been feeling was not in my head. Finally people believe me. Finally I am not fighting this on my own.

So let me get medical on you now and tell you what Hashimoto’s is. I’m sure you are on the edge of your seats right now. This truly is riveting stuff. But I digress…Hashimoto’s is an autoimmune thyroid disorder. Basically my body is attacking my thyroid gland as if it were a foreign invader. This is something you are born with, so apparently I have been sick much longer than I thought. Great news! Not.  So while my body attacks my thyroid, I go hypothyroid. Which means that I don’t make enough hormones to live, become exhausted and just ready for the grave. But the good news is my body goes hyperthyroid when I try to fight the attack. So, my poor little thyroid tries desperately to sputter back to life. When this happens, I make too much hormone and have too much energy, lose weight, become jittery and my heart races.  I’ll tell ya, I like the weight loss symptom. I don’t get to enjoy that too often though, hypothyroid settles right in and switches that up!

 

So I am basically on the worst roller coaster ride of my life. I swing back and forth from hyper to hypo, and it just ends up exhausting me, depleting me, and frustrating me.

 

How did I find this out? Long story short : My thyroid felt enlarged to my doctor. This, by the way, proves that I am sick. I was so excited that my thyroid felt enlarged to my doctor, I almost mustered up the energy to cartwheel. But I kept it in check. They already think I am crazy, No need to confirm that!

So my painful, swelled thyroid enlarged enough for me to be sent for an ultrasound. After sitting in a dark room as a woman rubbed warm goo with some sort of sonic spatula, I went home and fretted. If this ultrasound didn’t show anything, I for sure would not find what was making feel so unwell. it would once again be back to the drawing board. I anticipated the heartbreak.But rest assured, my doctor called me in a few days and told me that there were 6 nodules on my thyroid gland. Success! ( see how warped this sickly is?) Nodules are abnormal cells in the body that form lumps. One of these nodules was larger than 1 centimeter. When this happens, they send you to get a biopsy done.

On the phone, my doctor said one of the nicest things. she told me ” you only needed someone to believe you.” I almost cried right than. It was so true.  Then this weight I have been carrying rushed like water to my feet. I felt relieved. And alive for the first time in a long while.  Maybe I could let down my guard and stop fighting this monster alone?

The biopsy was scary and terrible. Because, hello, they are putting a needle in your neck into a nodule on your thyroid gland. Multiple times. My doctor went through 4 times. That was enough tissue cell for the pathologist. And lucky me, my doctor was tall. Which means, he had to pump my bed up to the highest level possible. This meant that if I tried to hop off and escape, I would break an ankle. So I was well and truly stuck. Lovely.

 

The results of my biopsy showed no cancer, yay! But it did show macrophages. Again, another foreign word in need of human translation. So sorry for disturbing your brains. You need not worry about these medical things. But if your are curious, read on. Macrophages are large white blood cells. They ingest foreign particles and infectious microorganisms. So basically this proved that my body was attacking my thyroid gland. Because there should no way be macrophages loitering about your thyroid!

 

So how am I being treated? Can I get better? Soon?

That, dear readers, is something I can not answer.Yet. My fantastic ( detect the sarcasm?) endocrinologist is away on vacation. He said whatever is wrong can wait until he gets back at the end of September.  Patience is not a virtue of mine.

 

But I hope this new diagnosis means I will be feeling better soon. I hope this means that I will soon be able to get off of my branch and join the beautiful world I have been admiring for far too long. It will be nice to flap these old wings of mine. I hope so.

 

Any advice acquiring patience? If i can become a patient person, I think I might feel like I have a super power. If anyone has every heard of Hashimoto’s, drop a line. I would love to hear what you know.

 

I wish you all a good and healthy sleep, plus a productive and happy day. Maybe one day I will join you!