What It's Really Like

Happy October!  Another October brings another dysautonomia awareness month. (Go team POTS!)

Photo courtesy of Dysautonomia International

I have been struggling with what to write about for my blog post. I have been reading others about how they won't let dysautonomia beat them (warriors on my team), how treatment sucks (which it does), how they feel trapped by this disease, and how overwhelmed by the love and support they receive from family and friends.

I feel all of the above things. Dysautonomia will never beat me. I am stronger than dysautonomia. I always have been, and always will be. Losing is NOT an option. Postural Orthostatic Tachycardia Syndrome (POTS) does not define me. I am more than POTS. POTS will not beat me. Treatment does suck. There is no protocol. There is no go to guide on how to help dysautonomia be manageable. There is no magic cure, no take this pill twice a day and you will be perfect again in no time. There is no secret to success. There is trial and error. Keep trying until you find something that works for you, and pray that it works for more than just a few months. I do feel trapped by my disease. I am 21 years old and feeling my body fail me. And yet, I continue to be more than it. I am constantly overwhelmed by the love, support, and help that I receive from family and friends. There is nothing to show you how blessed you are by family and friends than being in a time of need. Whenever I find myself doubting something, myself, my ability to keep dealing with this monster, and whenever I am tired of fighting, someone comes along and reminds me why it's worth it and why I continue to do it.

And yet, writing about all of these things isn't exactly what I want to do. What I want to write about is the truth. The truth about living with dysautonomia. I can smile all I want to and pretend that this is something easy to manage, that it doesn't consume my every thought in some way shape or form, that I fear what my future will be like, but none of that is true. What is true is the reality of what my every day is now. The fact of the matter is, I wouldn't trade my life for anything now. Let me show you though, what the reality of life is should you be living with dysautonomia.

Lets start at the very beginning. The morning. My arch nemesis: waking up. It takes me forever to wake up. Of course it does! I am in my 20s! Let me sleep in until 1 in the afternoon for goodness sakes! But I suppose there is work, school, chores, and horses to tend to. Okay. Alarm goes off. An hour and a half for you to get ready. Before you can even get out of bed, you have to drink a whole bottle of water. Why? Because fluids are a crucial part of dysautonomia. Okay, you have had your water. Now you have to start to sit up. Let me put a little picture in here to give you an idea of what happens when someone with POTS go from laying to sitting, or sitting to standing, or any weird combination of any of those:

Photo credit from http://www.lookfordiagnosis.com/

Sounds fun, doesn't it? So you start to sit up. Your head spins, your pulse sores, your blood pressure plummets. You sit there think, "my goodness, I'm just sitting up, not running a marathon!" Give it a few minutes. Depending on the day 20 minutes, or as little as 2 minutes, to let your body catch up to you after the marathon you just ran. Start the process over again. Stand up all the way, and make your way to the bathroom. Dizzy the whole time, hoping you make it there before you have a syncope episode (fainting) or "fall" (aka your blood pressure drops and you get pre-syncopal and instead of passing out all the way, you just kind of fall over.) In the bathroom you are greeted by your pillbox, your glorious pill box. Take the pills with another huge glass of water, all while finding your way to a place to sit down again. Okay, now the clock is running out on enough time to get ready to go to work or school. Shower. But not a nice warm happy shower. A cold one. The heat makes blood vessels dilate and drops the blood pressure and makes the pulse soar (another huge no no, no more hot showers for you!). Again, depending on the day, you have to sit down in your shower because you no longer have the strength to stand for the whole thing, or you skip something like shampooing or conditioning for the day to save on time. You get out of the shower, and again, find somewhere to sit immediately to let your body catch up. You fight to get ready, and to slip on those pesky compression socks while you are still slightly damp from your shower. FINALLY, you make it out of the bathroom, beautiful and ready to great the day. But now it's time to go! You're running late from the extra time you took to make sure you didn't pass out. Skipping breakfast isn't an option, you need the energy. Your poor body is already fighting so much, why give it even less to run on? But you know that eating is just going to make you nauseous and that it's going to make your stomach hurt. You eat a little though, then it's the best of both worlds; a little bit of energy and a little bit of extra symptoms.

You make it to your destination where you do your tasks at work as you need to. Don't forget all your water though (or even better, gatorade/powerade/electrolytes)! Plus you need to snack throughout the day. Salt salt salt salt! Lot's of salt. It helps to raise your blood pressure! The doctors have told you to salt and fluid load, but to also eat lots of small meals throughout the day rather than three main meals. Well still, lunch time rolls around and you need to eat something. Usually soup, or something light like that. But still, you get in your purse and fumble around for your medication. Trying to pretend you don't see the awkward stares of people knowing what you are doing. Drink more. Eat a little. Keep going. You avoid standing as much as humanly possible. Don't forget to keep drinking your Gatorade! The day goes on and you are exhausted. But the kind of exhaustion that you can't fix from a good nights sleep.

Photo courtesy of potsproblems.tumblr.com

Finally the work day is done and you get to go home! That is, unless you have a doctors appointment! (they never seem to really end) You make it home. Crawl through the door. And look what time it is! Med time again! Woohoo! You're too exhausted to cook and feed yourself, but you know you need to anyways. Something easy. Oh look! Soup again. You know on top of that you have other things to do. A part of a the house to clean, laundry to do, all that fun stuff! But you'd rather just go to bed. You end up just laying on the couch, you'll get to the rest some other time. Next time you're feeling well. You decide to go to bed. But first, another round of medication, because it always seems no matter how tired you are, you can never sleep anyways. Finally you fall asleep (or not, if it's a really bad night), just to hear the alarm go off again in the morning.

Photo courtesy of potsproblems.tumblr.com

So that's what it's like. Of how it is to wake up every day with an incurable disease, that practically no one has heard of, even some doctors. But still, that is only the surface of it! There is no possible way I could commit in writing what I do every day, how I cope every day, and how it truly feels. I cannot stand up without my body running a marathon. I cannot do anything without thinking of the repercussions on my body. I cannot eat without wondering how my body will handle it.

The truth behind dysautonomia is ugly. Nobody wants to live it. Nobody wants to hear about it. But it's true. It's all there. IT STILL EXISTS! Just because nobody wants to confront to truth about it, does not mean it does not exists. POTS symptoms vary from day to day, even just from hour to hour. Dysautonomia and POTS are not rare, they are just rarely diagnosed.

There are lots of ways to help get the word out for dysautonomia. There are many different fundraisers going on this month. However, as with most things, the most important thing is to get the word out. Make a fuss! Whenever someone gets annoyed with my preaching about dysautonomia, I know I am doing my job. I am being heard.

Photo courtesy of Dysautonomia International

This month, my job is to do nothing more, than make some noise for turquoise. To learn more about dysautonomia or learn how you can help,  please visit the Dysautonomia Information Network, or Dysautonomia International.

Education

Alright, here we go. I would like to learn you kiddos a thing or two here. I think education is very important, and I get questions about my condition all the time. My diagnosis in inappropriate sinus tachycardia. Literally, an fast heart beat that is abnormally fast almost all the time. An inappropriate sinus tachycardia originates from the sinus node, therefore it is not associated with an abnormal electrical rhythm on an ECG strip.

An inappropriate sinus tachycardia rhythm on an ECG strip
Photo courtesy of http://www.geocities.ws/inappropriatesinustachy/testsanddiagnosis.html

Inappropriate Sinus Tachycardia is characterized by a mean heart rate of greater than 90 beats per minute over a 24 hour period. The heart rate increases inappropriately with minimal physical assertion. Usually an increase of heart rate to 140-150 with something so simple as just standing up and walking across a room. Occasionally, hypotension and syncope (fainting) are observed. A nocturnal dip in heart rate is also seen with this condition. Other symptoms seen with inappropriate sinus tachycardia are a GI disturbance, pre-syncope, dizziness, extreme fatigue, palpitations, paresthesia (abnormal sensation of numbness or tingling), polydipsia (extreme thirst), shortness of breath, chest pain or tightness, headaches, general malaise, and many more.

Inappropriate sinus tachycardia is a form of dysautonomia. Dysautonomia is defined as any disease or malfunction of the autonomic nervous system by the Mayo Clinic. The autonomic nervous system is what controls most body functions that you don't have to think about, such as heart rate, blood pressure, digestion, sweating, and so on. 

photo courtesy of dysautonomiasos.tumblr.com

There are several different treatment methods seen for inappropriate sinus tachycardia. The most common being maintenance with beta blockers, calcium channel blockers, or antiarrhythmic drugs. Success has been seen using some treatments such as fludrocortisone combined with weekly (or more so as necessary) IV saline infusions. Another, but more invasive treatment, is a catheter ablation. The draw back with catheter ablations is that it is usually only a temporary solution. The effects tend to diminish over the course of six months after and patient generally see themselves back in the same position as they were in before. 

• "Isn't that just when your heart beats fast? Mine does that all the time!
• NO! It's not the same thing! An appropriate sinus tachycardia is an increase in heart rate that is an appropriate response. Like for instance, if you run a mile and your heart rate is steadily 140-150bpm, that would be an appropriate sinus tachycardia. An inappropriate sinus tachycardia is a fast heart beat originating from the sinus node of the heart, but is abnormal for the situation which you are in. For instance, an abnormally high resting heart rate (waking up and having a heart rate of 90-100bpm)
• "Can't you just take deep breaths and slow it down?"
• NO! An inappropriate sinus tachycardia is a malfunction in the autonomic nervous system. This means the body is essentially confused, forcing itself to beat irregularly fast.

Any other questions? Ask me! I'll do my best to answer. I am only a patient. 

**Most of this knowledge has come from research I have done myself after being diagnosed. I am not a doctor, or medical professional. I am not trying to diagnose anyone. I am not trying to give medical advice to anyone. I am merely trying to help people understand what I have been trying for months to get a better idea on.**

A Year in Reflection

Well, today was a big day!! I have officially hit the ONE YEAR marker since my original thyroid surgery. A lot has happened in that one year, but reflecting over it has let me see how incredibly blessed I am. I have incredible family, friends, and an amazing boyfriend who have never left my side through the whole process, and I have never once lost hope in the future that one day, I will be 100% healthy and living life the way I want to. One year ago, I didn't know what was going to happen. All I knew is I was sitting in pre op, freaking out, wondering what that pathology report to say. Would I need more surgery after this one? What will happen on the other side? But never once, did I ever feel alone in my battle and to this day I have still never once felt alone. 

I don't want to make some big long sappy blog post about what has happened with my health over the last few months. I want this to be a post about how thankful I am, and how no matter what has happened or what is going to happen, I have lived my life and continue to be lucky enough to spend it along side some awesome people. So I have decided to post some photo memories of what has happened over the last year. Each photo will have a description as to why it is an important memory and to have a last impact on the last year.

I cheered on the Bruin's hockey team along side my second family.

I celebrated victories on horseback with two of my best friends in the world.

I conquered my showing fears, and walked out victorious
 beyond anything I wold have ever imagined or expected

I continue to stay connected with the best group of friends;
together since elementary school and still going strong.

I was able to visit family I had not seen in over 10 years,
 and celebrate a new addition to the family

I was a part of a Kentucky Derby party,
and got all dressed up with my second family to watch the horses run.

I was able to do something I have always wanted to do-
I jousted with pool noodles.

I continue to spend time doing what I love

I was gifted with a plushy stuffed thyroid, to fill the hole

I spent the summer along side my best friend, traveling and just having fun

I celebrated my 2 year anniversary with my boyfriend,
and look forward to having more

I went to hockey games in Phoenix with my best friend,
and enjoyed watching such an incredible sport

I started a new job

I celebrated Fancy's second birthday, and had an incredible time

I repaired broken friendships and enjoy laughing at old memories

I celebrated a year with my current equine partner.

I cheered my dad on as he rode in El Tour de Tucson

I celebrated my 20th birthday with two amazing friends,
 whom I am lucky to have

I am so blessed, and cannot wait to see what God gives to me in the year to come.

Why thyroid care in the US is not awesome.

Alright, prepare for the thyroid rant of the century.

I have recently hit some road blocks in my quest for further diagnosis and treatment. I was FINALLY referred back to see an endocrinologist (thank goodness), which I have been trying to do for some time. Which is awesome, don't get me wrong. But on the list of things that are NOT awesome, the top two things are 1) the fact that it took a MONTH for my PCPs office to fax a referral as well as office notes to my endocrinologist, as well as 2) the fact that I cannot even be SEEN until the end of December. Don't get me wrong, I understand more than the average person that doctors are busy people. That's fine. But December is ridiculous for such a small practice to not see someone, especially since I am a previously established patient!

So since I am getting ready to see my PCP and cardiologist in the next two weeks I have been putting back together my novel entitled, "Thyroids suck: The Brief Medical History of Alana." Doing this has uncovered some interesting things which is what inspired my thyroid care rant. To make it easier to read I have decided to break this all down in to bullet points.

• My previous PCP ran a blood test in March 2013. I still have the copy of my paperwork that says he would order a complete metabolic panel, as well as a full thyroid panel. After looking at my copy of the results, ONLY a CBC and a partial thyroid panel were run. I had received a call results were all normal. However, they were flagged abnormal. My CBC showed a low RDW (red blood cell distribution width), and only my TSH were normal. My FT3 was high, and my FT4 was low. Personally, I do NOT agree that that is "normal."
• Also while going through paper work, I have had thyroid panels now run at three different doctors offices, all which use different labs for results. Some lab results which are normal in one of my doctors offices, are abnormal in a different one. Which simply does NOT make sense to me. WHY is there no standard lab values established for thyroid blood tests? Shouldn't that be one of the first things established? 
• My initial blood tests showed me not only having off the chart hyperthyroidism, but some other abnormal stuff in my complete metabolic panel run at that time, the most important of which being a high T bilirubin level. Bilirubin is something produced by the liver to help with the break down of hemoglobin as well as drains from the liver and is excreted through urine. Elevated levels of bilirubin can indicate things like gallstones but can also cause an acid build up in the stomach, which can later cause issues such as gastritis and GERD (gastroesophageal reflux disease). I was just recently diagnosed with GERD.
• One issue I saw when going through the screening and initial diagnosis process was that most people are not screened for, checked, or talked to about thyroid disorders. Most thyroid disorders become present in females between the ages of 16-25. When you have physicals as a teenager? Did you ever have your neck checked, or have a thyroid blood test? No? Me neither until I had a massive adenoma tumor present. I often wonder if in that yearly physical if I had been checked and screened for a thyroid condition, if it could have been stopped before it got to such an extreme state. 
• There are some thyroid problems that cannot be seen in a blood test, like the under conversion of thyroid hormone T4 to T3 and thyroid resistance. For the under-conversion issue, inflammation and high cortisol is usually present, but cortisol is NOT a normal thyroid function test. For an under-conversion issue, patients present hypothyroid but with normal lab values, therefore, no treatment is received. For a thyroid resistance problem, there is NO WAY to test for this. All thyroid and pituitary glands can be functioning normally and every lab marker will be normal. So how can anyone know if they have either of these? I didn't even know these two things were possible until I did lots of research pre-thyroidectomy.
• Another issue along the lines of close-minded medicine, is most conditions can generally be handled and controlled with natural methods, rather than normal medical treatments. For instance, most hypothyroid patients are treated with synthroid alone and do not even know that natural thyroid treatments such as ArmourThyroid. Synthyroid is NOT the bio-equivalent to the main thyroid hormone, thyroxine. In this case, a blood test can be normal, but symptoms of the patient can be increasingly worse or uncontrolled, but since the blood test is normal, you get the "oh well, deal with it" response. (something known all too well to thyroid patients in my opinion.)
• To close out my rant, I think this is my BIGGEST problem with thyroid care in the United States: doctors treat the numbers, not the symptoms. Doctors treat the numbers, not the symptoms. Doctors treat the numbers, not the symptoms. Doctors treat the numbers, not the symptoms. Doctors treat the numbers, not the symptoms. I cannot say it in any other way. It should always, always, ALWAYS the PATIENT that is evaluated and treated NOT a collection of numbers, which doesn't mean anything without the existence OF the patient. And beyond this, every patient responds DIFFERENTLY to thyroid treatments. Why is there always only a one way, single seen way to treat where everyone seems to have blinders on?

Okay, I think thats all I have for now. I get very frustrated sometimes. Especially right now since no one seems to be listening. Who knows a patient's body better than the patient? I think, in any matter of medicine, the patient needs to be taken more seriously, and physicians need to know and acknowledge, the patient knows the patient's body the best. 

Invisible Illness Awareness Week 2013

Well, not only is it Thyroid Cancer Awareness Month, it also happens to be Invisible Illness Awareness Week. Living with an invisible illness sucks. But raising awareness can help. There are lots of wonderful ways to help understand invisible illnesses, and I think my forever favorite will always be spoon theory. Spoon theory explains everything behind "but you don't look sick." I have never read something that more accurately describes living with a chronic illness. I will forever and always be someone who goes over board to raise awareness in every way I can, be it from wearing my thyroid cancer and thyroid disease awareness pin, posting obsessively on Facebook/Tumblr/Instagram. I will always be in your face to say that not ever symptom has to be visible to be real. Pain, nausea, vomitting, insomnia, fatigue, tremors, heart palpitations, dizziness, constant tachycardia, anxiety, heat sensitivity, migraines, brain fog. The list goes on and on. Here is my contribution on my blog to Invisible Illness Awareness week.

1. The illness I live with is: Graves Disease (GD), Paroxysmal Supraventricular Tachycardia (PSVT), Gastroesophageal Reflux Disease (GERD)

2. I was diagnosed with it in the year: GD: 2012, PSVT: 2013, GERD: 2013

3. But I had symptoms since: I can remember. 

4. The biggest adjustment I’ve had to make is: Limiting myself in activity, as well as forcing myself to stop what I am doing when I start getting PSVT symptomatic

5. Most people assume: it's in my head, because I dont look sick. 

6. The hardest part about mornings are: getting up. standing up gives me a huge heart rate increase that makes me dizzy and nauseas. I almost always wake up feeling like i need to puke.

7. My favorite medical TV show is: i dont really have any- not since they cancelled discovery health.

8. A gadget I couldn’t live without is: a pulse ox.

9. The hardest part about nights are: the insomnia.

10. Each day I take __ pills & vitamins. (No comments, please) 5 pills, 2 vitamins.

11. Regarding alternative treatments I: havent tried many aside from homeopathic remedies like vitamins and chiropractic.

12. If I had to choose between an invisible illness or visible I would choose: invisible- it's easier to pretend i'm healthy.

13. Regarding working and career: i still plan on and WILL accomplish being an RN, and eventually an NP. I won't let my illness get in the way of my dreams.

14. People would be surprised to know: how much a fast heart rate can ruin your day.

15. The hardest thing to accept about my new reality has been: the lack of understanding by many people. and not always being able to do what i want.

16. Something I never thought I could do with my illness that I did was: go running.

17. The commercials about my illness: dont think i have seen any.

18. Something I really miss doing since I was diagnosed is: running around playing frisbee with my friends.

19. It was really hard to have to give up:  a lot of different foods.

20. A new hobby I have taken up since my diagnosis is: i dont think i have taken up one.

21. If I could have one day of feeling normal again I would: do anything and everything i could

22. My illness has taught me: patience. 

23. Want to know a secret? One thing people say that gets under my skin is: when people tell me to "just stay positive." it's hard to stay positive when you never feel good. sometimes its nice to hear people just be like screw it lets mope.

24. But I love it when people: listen- it means a lot. that and celebrate small victories.

25. My favorite motto, scripture, quote that gets me through tough times is: "there will be light."

26. When someone is diagnosed I’d like to tell them: never give up. even though i just said i hate it, it's different going from one spoonie to another. an illness doesnt have to define you. it's okay to be sad, and angry, but it is not okay to live in a state of constant anger.

27. Something that has surprised me about living with an illness is: how such little things can make such a large impact.

28. The nicest thing someone did for me when I wasn’t feeling well was: sitting and hanging out with me and watching HGTV all day.

29. I’m involved with Invisible Illness Week because: awareness is important. so many people suffer from invisible illness and not everyone realizes the little things people say can cause the biggest hurt.

30. The fact that you read this list makes me feel: so great. knowing someone is listening (or reading) means a lot. understanding can only help.

Update

Life got in the way of me, yet again, and I haven't had much time to sit down and blog!!

So, since I last posted, I have had an endoscopy, have been getting my heart better managed (YIPEE), but we have started going downhill with the thyroid health again. I am LOVING having my heart rate better managed. I am still having issues with break throughs in the evenings and mid day, but over all heart health is much better. It has been a nice change not feeling like my heart is about to burst through my chest and speed away with how fast and hard it is beating. My endoscopy (EGD) showed swelling in my esophagus (explaining my dysphagia), stomach, and duodenum. The diagnosis of GERD and acid reflux were tossed around. I was put on a proton pump inhibitor that helped with not feeling ill and getting sick after meals, but no relief for the dysphagia. '

Now the little bastard thyroid however is still giving trouble. I haven't seen an endocrinologist since I was 6 weeks post op from my hemithyroidectomy. It finally came down to my doctor saying I fit too closely with the profile still of a hyperthyroid patient. He ordered new blood tests to check all of my levels, and then ordered another ultrasound. During the physical examination, he did say he felt my remaining lobe may be enlarged, but it was hard to tell (hence the ultrasound being ordered). Most people can guess that my biggest fear right now is a tumor relapse and cancer. My surgeon was pretty clear that if I were to have another tumor grow, the likelihood of it being cancerous is pretty high, so if they think the rest of the gland is enlarged then rip the sucker out!!! I guess now it has just become a waiting game. I hear the OK Go song in the back of my head, "here it goes again."

I think the hardest part of living with a chronic illness is not realizing the little battles are big victories. Like having the energy to ride the horse more than twice a week, or even just getting up in the morning and having the energy to do my hair and make up. That, and just not feeling "normal." Though the idea of normal in itself is extremely skewed, it is hard knowing what my old normal is and knowing what my new normal is. I am so thankful for my friends constant support as I struggle to learn who I am now and who I have become. I don't know what I would do without them.

I think this is all I have to say for now. I will try to be more diligent about updating and keeping track with my blog, though school is about to start up so who knows what life will be like now!

Where It All Began

The word "cancer" means so much to so many people. To some it is a tale of survival, to some it is a story of how they lost a loved one, but to some it is a tale of avoidance and learning to struggle with the unknown along the way. I was one of the extra lucky ones, I skated by without the cancer diagnosis, I got the pre cancer diagnosis.  So many people want to share their story and I can't say I am any different. I don't say I am a survivor. Because I am not. I did not have cancer, and I thank god every day. I came a little too close for my comfort. But I live on a slate of thin ice, and chance for relapse of thyroid tumor.

My story begins a little differently. After having bronchitis, I noticed a huge lump in the base of my neck. I blew it off for several months assuming it was nothing more than a swollen lymph node. When it didn't go down, I started to get concerned. I walked to work one day and asked the nurse I work for, "hey, what's this swollen lymph node in my neck?" She laughed and told me thats not a lymph node and told me I needed to go to my doctor like yesterday. Being who I am, I put it off for a few months more until she got the doctor we work with involved as well. He told me it was my thyroid and could be serious. So my mom being the loving person she is, scheduled me a doctors appointment and told me "I was going. Not an option."


I was initially diagnosed with a "thyromegally." A thyromegally is a term describing any unidentified, or inconclusive enlarged thyroid mass. I had a full CBC and thyroid pannel. My blood work showed I was off the charts hyper and I was referred to an endocrinologist.  An initial ultrasound showed my tumor as a 3cm mass engulfing most of the left side of my thyroid. After seeing my endocrinologist, I was diagnosed with Grave's Disease, and a thyroid uptake scan was scheduled. The results of the radioactive iodine thyroid uptake showed the left half of my thyroid was 6 times more active than a normal thyroid, and the right half was completely dormant.

How we embraced my thyroid diagnosis at work. We added
a Halloween themed thyroid tumor to our skeleton!

I was then diagnosed with a thyroid adenoma (an adenoma is a benign tumor). It came time for me to make a decision: radiation therapy or surgical removal of half of the thyroid gland. Being how young I am I chose to have half of my thyroid removed, after I finished my current semester at school. The testing showed half of my thyroid with the tumor was 6x more active than a normal thyroid all together.

As time came closer to my surgery date, things got weird. My symptoms were worse, a dose couldn't control my levels, and even through medication therapy, the tumor was growing. My endocrinologist told me this was typically a sign of malignancy. Surgery day came and though it was miserable, I couldn't be more relieved to be getting this tumor out of my body. I was barely able to swallow from my throat being so swollen, and sore from being intubated as well. Waiting in pre op I was so busy being terrified I forgot to ask my surgeon for photos of the little guy. Luckily, he was able to send a resident down to pathology to get photos of it before they cut it up and turned it in to a pile of biomedical waste.

In the hospital, about 24hrs post op!

Larry the thyroid tumor!

Waiting for the pathology report was absolute....After receiving the pathology report I was diagnosed with a Hurthle Cell Adenoma, with pre cancerous hurthle cell changes. The tumor was 4.5cm x 3cm x 4cm. The margins were not entirely clean from my tumor either, increasing the chance that my tumor may grow back. My endocrinologist said I avoided full blown cancer by only a couple months. I count my blessings and thank God every day. For now I only need blood tests every 6 months and a yearly ultrasound to ensure the other gland stays normal.

I can't believe how lucky I am. But boy do I thank God, my friends, and family for the support and love which I have received through this process. The world isn't so scary anymore. I live with a scar on my neck; but I live. I am a 19 year old girl, en route to nursing school and I am not letting my disease keep me down. As thyroid levels have begun to regulate, other health problems have surfaced. We are working to get my heart rate under control, as well as find an answer to my difficulty swallowing, and get other symptoms associated with the Grave's Disease under control.

I created this blog in order to chronicle my events in learning to live chronically fabulous.

This is who I am, and this is how I am learning to cope and move on with my life.

Showing off my scar at an awards banquet; but this is who I am now.