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.