“There’s a chance you have cancer but I don’t want to speculate until we know more.”

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“But don’t worry. Even if it is cancer, you’ve probably had it for months or years – waiting a few weeks for a biopsy isn’t a big deal. This cancer grows slowly.”

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Let’s back up.

I started noticing some difficulty swallowing in late spring. I felt like I had a lump in my throat – like when you have a cold – only I didn’t have a cold. My sinuses, ears and lungs were fine. I just had a sore throat and didn’t feel like I was running at 100%.

I couldn’t take my morning pills and vitamins all in one gulp of water like I used to. I actually choked on my medication a couple of times.

I felt like something was wrong, but I wasn’t ready to deal with it. June was going to be crazy – I was moving across town, my brother was getting married and I had a three-day sorority conference out of state.

I told myself that if I still felt off after I had gotten through my move, the wedding and the conference, that I’d get in to see my doctor.

On June 29, I saw my primary doctor. I told her that I felt like there was a fullness in my throat/neck and that I was concerned that there was something wrong with my thyroid. I’ve had hypothyroidism for almost six years and I am able to recognize the symptoms when I’m having a flare up. This seemed more than a flare up.

My doctor examined me and said it did feel like my thyroid was enlarged on the right side. She recommended I have an ultrasound to rule out any problems. She also ordered a blood test to see if my TSH counts were off. My counts were off, so she increased my meds again.

I had an ultrasound the following week. I was very nervous but the technician was really nice – even though it felt like I was suffocating as she pressed the ultrasound wand into my neck to get images of my thyroid. I was told that I would get the results in a few days.

I left the hospital nervous, but figured I wouldn’t worry about it until the results were in. I went and got my nails done and was headed home when my phone rang. It was my doctor’s nurse. Just 90 minutes after I left the hospital they were already calling with results.

The nurse said I had multiple nodules on my thyroid and that my doctor was giving me a referral to an endocrinologist. I was transferred to the specialty area to make an appointment.

I made an appointment (but couldn’t get in until August 19) and asked to be put on a wait list. I followed up with a friend who works at the medical college (and whose dad is a retired ER doc). My friend spoke to colleagues who recommended I make an appointment with one of the endocrinologists there (who happens to specialize in nodules and thyroid cancer). A friend’s younger sister who had thyroid cancer seven years ago also recommended this doctor so I called to make an appointment but I couldn’t get in to see him until September 28. I am also on his wait list.

I wasn’t handling this well – that i had all these nodules and I had to wait so long to even have a consultation. Meanwhile, the fullness in my throat is getting worse and every week i notice another head/neck position that makes me hyper-aware of these nodules.

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The next week, I got a call from the guy my doctor recommended – there was a cancellation and they got me in for an appointment. Dr. S. did an exam and asked me lots of questions. He said that my thyroid is very damaged and that the damage is irreversible. It’s enlarged all over with multiple nodules on the right side and there’s one on the left side that is 1.7cm. He said this one is suspicious – partially because of its size, but also because it’s by itself. He also said my personal health history as well as family history (aunt had thyroid cancer a few years ago and my grandpa had half of his thyroid removed a decade ago due to suspicious nodules) combined add to the suspicion.

The doctor said that it could be cancerous but he didn’t want to speculate until we did a biopsy. But he said the “C” word and I didn’t hear much else he said after that.

I do remember him saying that depending on the test results, we may take a variety of treatment paths: Surgery, additional biopsies on the other nodules, ultrasounds and close monitoring every six months.

I had a FNAB (Fine Needle Aspiration Biopsy) yesterday. Guided by an ultrasound, the doctor inserted 25 gauge needles into the nodule and removed tissue. Four times. (For comparison, blood donation uses 16 or 17 gauge needles).

The first two biopsies were unpleasant but bearable. The last two were so painful. No anesthesia at all. My neck/throat hurt a lot when I left the clinic. Obviously after leaving, I got a frappuccino and went to acupuncture because my anxiety is through the roof and when you have giant needles shoved in your throat the obvious next step is to jab a bunch of needles all over your body.

The last seven weeks have been torture. My anxiety is getting out of control. I’m trying everything to remain calm.

I feel the nodules every time I swallow. Every time I turn my head. I frequently have a sore throat or hoarse voice.

On top of that, despite the increase in dosage, I am still suffering the effects of a prolonged hypothyroid flareup. I am exhausted. All.The.Time.

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It takes all I have to get through the work day. I come home and crash. On weekends, I wake up around 6 a.m. and then take my first nap around 9 a.m. Yes, I said first nap. I nap all day.

I even stayed home from work today because I’m just so tired. And my neck is sore. And my voice is hoarse. And my neck is swollen. And I just can’t.

I am working on the anxiety, thanks in part to acupuncture, essential oils/baths, prayers and meditation. But the chronic exhaustion is taking it’s toll on me mentally and physically.

The next few days will be torture as I try to get through the day while worrying about when I will receive a call from a doctor telling me if I have cancer or not. Or if things are suspicious and surgery is recommended for further investigation. It’s all nerve-racking.

Please keep me in your prayers. Send your positive thoughts and wishes for strength and faith that I can get through this.

Please also send ice cream. Preferably this:

Photo: LauraLeeMarx
Photo: LauraLeeMarx

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Day 14: FODMAPs

A lot has happened in the past few days. I’ve seen the Hunger Games. Twice.

I had the MOST AMAZING RUN (and experienced “Vomit Hill”).

Vomit Hill - I almost contributed to its namesake.

And yesterday, I saw a nutritionist. I have been thinking about seeing one for quite some time and this past week I was pushed to the edge. I feel like my body is attacking itself whenever I eat.

You see, I was diagnosed with Acid Reflux at age 5; Irritable Bowel Syndrome (IBS) at 10; Chronic Daily Headaches due to decreased levels of Serotonin at 19; Lactose Intolerance in early 20s; Hypothyroidism at 27; Gastroparesis at 28. Not to mention Asthma and Seasonal Allergies.

That’s a whole lot of auto-immune problems going on.

When you have IBS, you’re told to eat more fiber. When you try to lose weight, you are told to eat more fiber – because it is more filling than other foods.

When you’re diagnosed with gastroparesis, you’re told to eat less fiber – that fiber is one of the worst things for that condition.

So, when you have it all (aren’t you jealous?), what in the hell are you supposed to eat?

I don’t know. And that’s why I went to see a nutritionist. No matter what I’ve tried, I can’t lose more weight. I’m down 27 lbs. from my highest weight 2 years ago, but I cannot get past this hump. It’s frustrating because I work out – hard. I work out 4-5 times a week.

The appointment was very eye-opening. Rachel was very friendly and helpful. I was afraid that I would scare her off with all my problems. After listening to my history, taking a look at a food log and asking me some other questions, Rachel suggested I might benefit from eliminating FODMAPs from my diet.

I know what you’re thinking – what in the hell are FODMAPs?

FODMAPs are short chain carbohydrates which are poorly absorbed in the small intestine. The term is an acronym.

FODMAPs are: Fermentable, Oligosaccharides (eg. Fructans and Galactans), Disaccharides (eg. Lactose), Monosaccharides (eg. excess Fructose) and Polyols (eg. Sorbitol, Mannitol, Maltitol, Xylitol and Isomalt).

Basically, they are sugars, starches and fibers in food that some people (especially those with IBS) can’t fully digest or absorb. Because FODMAPs aren’t absorbed properly in the small intestine, “They end up in the large intestine along with water, where they undergo bacterial fermentation into hydrogen, carbon dioxide and short-chain fatty acids.” Sounds sexy, right?

Can I be honest here? Good. I can’t even explain just how bloated I’ve been lately. And gassy. Again with the sexy talk.

After researching and reading more about FODMAPs, I wonder if the size of my gut will go down as I eliminate FODMAPs from my diet. Can I blame my bloaty gut on them? We’ll see.

First attempt at FODMAPs elimination diet - salmon cakes.

For the past two weeks, it hasn’t mattered what I eat – I always feel horrible after eating. It’s frustrating. It makes you not want to eat. But I know I have to, so I keep eating. Honestly, I’m willing to try just about anything at this point. So, Rachel and I decided that I would try to eliminate FODMAPs from my diet for the next month, and then return to discuss how the month went. I am going to keep a food journal, detailing everything I eat for the next month. I will be including my energy level and other physical symptoms with each post. You can follow my food journal (if you’re interested) at http://fodmap.tumblr.com.

Initially, I’m going to completely eliminate FODMAPs from my diet. If things get better, I may attempt to bring certain (borderline) foods back in to my diet, to see which FODMAPs my body can tolerate. I’m hopeful this elimination diet will change my life for the better. Otherwise, I’m gonna be pissed to give up things like apples, pears, avocados, watermelon, artichokes, asparagus, garlic, onion, mushrooms and EVERYTHING THAT CONTAINS GLUTEN/WHEAT.

Yeah. I’m not happy about this diet, but I’m trying it because I so desperately want to feel normal. Even if it means eliminating favorite foods from my diet. Basically, eliminating FODMAPs from your diet means eating no packaged foods – it is difficult to find packaged foods that don’t contain FODMAPs, so this afternoon’s trip to the grocery store was a lengthy one – full of reading labels on EVERYTHING and trying not to feel too depressed. I’m to the point I just NEED to feel better and I’ll do just about anything to get there.

Anyways. Whew. There’s that. Here’s to new beginnings.

Here are some resources I’ve found helpful so far:

 

Health Update: Lazy Stomach

My name is Amy and I have a lazy stomach.

Ok, actually I have a “mild gastric emptying delay.” AKA gastroparesis. AKA my stomach doesn’t easily digest food. AKA my stomach is slow. AKA my stomach doesn’t empty itself into my intestines properly.

So you see why I’m calling it “Lazy Stomach.”

Figures, my stomach is as lazy as the rest of me.

Anywho, after the gastric emptying scan where I ate eggs with radioactive dye in them, my GI doctor, Dr. K, had me come back in to talk about the results. Since I have a mild case, he didn’t want to put me on meds just yet. This isn’t a health issue you can cure. It’s something you just learn to live with. Like my hypothyroidism, it will be a lifelong problem for me and if we can put off worse symptoms until I get older, we can put off adding another medication to my morning cocktail.

Interestingly enough, Dr. K says that my thyroid issues are probably contributing to the lazy stomach. He thinks that once we finally get my thyroid levels under control (they were more than double the highest end of “normal” when I was diagnosed a year ago – now, they’re just a little bit higher than normal) hopefully some of my issues will subside.

Of course, me being the paranoid expert Googler I am, I was constantly researching the gastric emptying scan and gastroparesis on countless medical web sites. One of the interesting tidbits I uncovered was that gastroparesis can be caused by prolonged usage of SSRI’s (aka antidepressants). I have been taking Zoloft for more than nine years. My freshman year of college, I got very sick. I had horrible headaches every day. They were debilitating. Many days I just couldn’t get out of bed. I had MRIs and many other neurological exams and my neurologist (Dr. V) diagnosed me as having a serotonin deficiency. Basically, people who are clinically depressed have super low levels of serotonin. Normal people have normal levels. I’m somewhere in between. For me, the serotonin deficiency presented itself in headache form. I’m also convinced that if I wasn’t taking this medication for headache prevention purposes, I would have been on it eventually for depression. I think I’m just wired for depression and anxiety issues. I’ve dealt with both over the past 5-6 years.

Ok, I’ve rambled on long enough.

So there you go. I have a lazy stomach, likely caused and/or influenced by my thyroid disorder and prolonged usage of antidepressants. Good times.

Learning to live with hypothyroidism

It’s been about two weeks since I was diagnosed with hypothyroidism. My TSH level was a 10.2. The normal range is 0.4-5.0. In a nutshell, the higher this count is, the less your thyroid is doing. From what I’ve read, there are many people with hypothyroidism who don’t have an elevated TSH… but this is often the biggest tipping point to the diagnosis… along with a myriad of symptoms (bold=my symptoms):

  • Poor muscle tone (muscle hypotonia)
  • Fatigue
  • Cold intolerance, increased sensitivity to cold
  • Depression
  • Muscle cramps and joint pain
  • Carpal Tunnel Syndrome
  • Goitre
  • Thin, brittle fingernails
  • Thin, brittle hair
  • Paleness
  • Decreased sweating
  • Dry, itchy skin
  • Weight gain and water retention

And these are just a few of the symptoms… So you can imagine how I’ve been feeling lately… especially if you add in the anemia.

There’s a lot of debate out there over taking drugs like Synthroid or something like a natural dessicated thyroid supplement. Right now I’m taking Synthroid and seeing improvements. I’m not cold all the time anymore and my energy levels are slowly on the rise. If you have any research or information on thyroid treatments, please share in the comments below.

And so it begins…

I’ve never been one to make New Year’s resolutions… to me, it’s a bit cliche. Besides, if you want to make a change in your life, why should a day on the calendar dictate when you start? When you’re ready to make the change, make it. JUST DO IT. Waiting “one more day” or “starting Monday” just gives you a crutch to hold on to — holding on to the old habits you’re trying to stop.

And yet, here I am, writing a blog post on New Year’s Day. I disgust myself.

I actually started making some changes a couple of weeks ago, but those were more for health reasons than anything else.

And my health is why I’m doing this.

I’m making a life change, and I need you all to hold me accountable, mmmkay?

Here’s a back story on the health issues I’m dealing with:

Over the past few months, my lack of energy and continual tiredness was attributed to my new work schedule – 5am to 2pm weekdays. Even though I was getting plenty of sleep, I never felt 100%. I could take a 4 hour nap after work, wake up to eat supper and then go back to bed and I was still always tired. Then, the coldness kicked in. I was always cold at work, home and everywhere else. It became the norm for me to keep my scarf, hat and coat on at work… and this was soon joined by a blanket on my lap. My skin always felt warm to the touch to others and I never had a fever. I took my temperature multiple times a day because I was convinced I had some type of infection. Why else would I be so cold so much of the time?

Conversations with family and my Twitter friends led me to wonder if something bigger was going on. Luckily, I already had my yearly physical scheduled for the following week, so I just toughed it out until that appointment.

My doctor confirmed what friends hypothesized – I probably have a thyroid problem. Numerous blood tests later, I found out that not only did I have hypothyroidism (with a TSH count of 10.2, normal is 0.4-5.0), I was also very anemic.

No WONDER I felt like death. Seriously, if I had to guess what death felt like, it would have been how I’ve felt for the last month or so.

Looking back, the symptoms started this summer… but I attributed them all to my work schedule and a changing routine. My symptoms didn’t come on suddenly – I was just ignoring them.

My doctor also suggested I get tested for sleep apnea. Sleep apnea is when you stop breathing when you sleep. Yeah, super scary. My uncle has it and I’ve heard it can run in families. Awesomesauce. Sleep apnea can also be caused by being overweight, which I am. My doctor and I decided to wait to do that testing until I have the thyroid and anemia issues under control. Baby steps.

I also had high blood pressure for the first time ever. I am about the age that my mom and her brothers all went on high blood pressure meds, so I’ve always been closely monitored. My doc thinks it could have been a result of another medication I was on, so she ended up taking me off it. Hopefully that plus weight loss will do the trick.

Can you say scary? All these problems coming at me at once?

Obviously, I need to change my life.

I’m not a skinny girl in a fat girl’s body. I’m a fat girl in a fat girl’s body. I will always be a fat girl, no matter what my outward appearance looks like. I’m an emotional eater. I eat when I’m stressed, depressed, happy. I love rich, tasty food, forget about the calories. Sometimes, it just doesn’t matter.

But now, it does.

I am committing to living a healthier life. I am committing to document my journey by writing this blog. I am committing to losing it without losing me.

I want to lose the bulky weight, the plus-size clothes, the getting-short-of-breath-when-I-walk-up-a-flight-of-stairs. I want to lose it all…. but not lose who I am in the process.

This is where you come in.

Hold me accountable.

Don’t let me lose who I am.

Encourage me when I fail.

Praise me when I triumph.

I’m not planning on making any crazy goals, like “lose 50 pounds by summer.” But, if that does happen, I won’t be upset. I just want to get to a healthy weight, no matter how long it takes me to get there.  I will be outlining my goals in a future post.

So that’s it. I’m committing to losing it without losing me, will you commit to holding me accountable?