Every Fighter Needs a Theme Song

Walk

A million miles away
Your signal in the distance,
To whom it may concern.
I think I lost my way,
Getting good at starting over
Every time that I return.

Learning to walk again,
I believe I've waited long enough
Where do I begin?
Learning to talk again,
Can't you see I've waited long enough?
Where do I begin?

Do you remember the days
We built these paper mountains,
Then sat and watched them burn.
I think I found my place,
Can't you feel it growing stronger?
Little conquerors.

Learning to walk again,
I believe I've waited long enough
Where do I begin?
Learning to talk again,
I believe I've waited long enough 
Where do I begin?

Now!
For the very first time.
Don't you pay no mind.
Set me free, again.
To keep alive, a moment at a time.
That's still inside, a whisper to a riot.
The sacrifice, the knowing to survive.
The first decline, another state of mind.
I'm on my knees, I'm praying for a sign.
Forever, whenever, I never wanna die.
I never wanna die.
I never wanna die.
I'm on my knees, I never wanna die.
I'm dancing on my grave.
I'm running through the fire.
Forever, whenever.
I never wanna die.
I never wanna leave.
I'll never say goodbye.
Forever, Whenever.
Forever, Whenever.

Learning to walk again.
I believe I've waited long enough.
Where do I begin?
Learning to talk again.
Can't you see I've waited long enough?
Where do I begin?

Learning to walk again.
I believe I've waited long enough.

Learning to talk again.
Can't you see I've waited long enough?

-- Foo Fighters

My Journey So Far

Up until about 9 months ago, things were going really great for me. But let me go back just a little further to set some things up before I begin my story. I was diagnosed with bipolar disorder in the summer of 2000. I was 29 years old. At that time, I had complete faith in my doctor, I handed him my broken spirit and asked him to fix it. He put me on a bunch of drugs that only made my situation worse. I had never had a panic attack in my life until I took bipolar medications. In 2006, I got off of all medications and focused on diet and exercise. In 2007, I had a new primary care physician, I went to him because I thought I was starting menopause. He said my thyroid wasn't working right and put me on Armour thyroid. That helped and I was good to go for a while. In 2009, I ended up having a hysterectomy. They took everything except my right ovary. I had a pretty rocky year after that, but started to level out. I started having bad acid reflux and ended up having my gallbladder removed in 2010. (That seems to be a consensus, if it's not working right - take it out...) Things got better, I got healthy, and life went on.

In 2011 at the age of 40, I started participating in inline skate races, I had a full social calendar, I had a full time job; life was good. I was lifting weights and in January 2013, I started running and began training for my first half marathon. I ran my first half marathon in May, (I finished in 2:05 - my goal had been 2:30!) and several other races after that. I quit my job at the end of May, the plan was to take a month off and start looking for a new job. I skated my first inline marathon of the year on June 15th in Wisconsin and aside from some low level anxiety and trouble eating the night before, I felt okay. I ran my second half marathon on June 29th, and that's when things really started to fall apart.

Me nine months ago

It started with an increase in acid reflux and feeling overly full after some meals - usually after a hard training day. I was running a lot, and running was new for me. I started having a harder time recovering from a workout, feeling breathless for hours after I'd finished; especially after a long run. I was having the overly full feeling more frequently, along with some dizziness and feeling light-headed and anxious. I kept tweaking my nutrition, thinking it was something I was - or wasn't - eating/drinking. After I ran my second half marathon, I could not catch my breath or get my heart rate down afterwards. I walked around for a good 30 minutes to get my body to calm down. I felt dizzy and had stomach cramps. I was supposed to run another half on July 13th, but I dropped down to the 10k. I should have skipped it; that was the last time I ran.

I felt good during that race, finished strong, paid attention to after race nutrition, and figured I was okay. Later that night I had the overly full feeling, which made me feel like I couldn't catch my breath; and I had my first panic attack. The feeling of not being able to get enough air landed me in the ER 2 days later, hyperventilating so badly that all of my muscles froze and I couldn't even walk. It was the most terrifying experience of my life. I described to the ER doctor that it seemed to get worse after I ate, so without any tests he prescribed Reglan and sent me on my way. I took a week off from exercise, took the Reglan, and started feeling better. I needed to start training for my next race: a duathlon in Minnesota the first weekend in August (skate a half marathon, run a 5k.) On July 23rd, I went for a skate. Immediately into it, I was having trouble breathing. I decided to just take it easy and keep it short. With just over 3 miles left until I would be back to my truck; out in the middle of a park on the bike trail; I started having a panic attack.

If you've never had one, it is hard to describe how absolutely terrifying they can be. My heart was racing, I was shaking, I felt like I couldn't breathe. I honestly do not know how I got back to my truck; but I did. I tried to get my breathing under control so I could drive; but I just couldn't do it. I had some cyclists call an ambulance; and it was off to the emergency room again. This time they did a CT scan. They found a minor heart abnormality and a large cyst on my ovary. 

At this point, I knew that my season was over. I set aside my athletic goals and began a quest for answers. What is wrong with me? Why do I feel like I can't breathe? Why am I having panic attacks?? What the hell just happened??? I found out that anxiety is a side effect of Reglan so I quit taking it, I figured it had a hand in making a bad situation much worse. I had to cancel my remaining races and focus on getting healthy.

So began my journey to find out and fix what was wrong with me so I could get back to my busy life. Little did I know what I was in for.

The gastroenterologist 

Since it seemed like things got worse after I ate, I started with the GI doc. At this point I'm barely eating, I have a lot of anxiety around mealtime (and in general) and I'm dropping weight like crazy. The panic attacks are spontaneous and awful so I'm taking a lot of Xanax. the GI doc ordered a gastric emptying test; I ate some radioactive eggs and had my stomach scanned once an hour for 4 hours. At 4 hours I still had food in my stomach. Diagnosis: gastroparesis (stomach empties too slow.) I'm put on this ridiculous diet and given a prescription for a drug you can't even get in this country.

The primary care physician

First of all, my primary care physician is fantastic, I love him. By the time I went to see him, I was a mess. I didn't believe that the stomach issues were all that was going on; I believed they were a symptom of something else. One of the things I had my Dr do was check all of my hormones. My T3 and T4 (thyroid) were a little high, while my estrogen and progesterone were practically non-existent. My doctor lowered my thyroid medication and told me that my one lone ovary was more than likely failing. So I figured it was time to follow up on the cyst.

Gynecologist #1

I went to my gynecologist convinced that low hormones were the cause of all my woes. She did an ultrasound and concluded that the cyst was complex and about the size of a small orange. She wasn't interested in my hormone labs, and told me that the only symptoms of menopause were hot flashes, night sweats, and trouble sleeping. She told me to see a cardiologist, and endocrinologist, and a psychiatrist. She said we could wait to see if the cyst resolved on its own; or I could have surgery to remove the ovary. But she would not give me any hormone replacement as long as I still had the ovary. She told me it could be cancer, and ran some tests. After several agonizing months, I had the ovary removed in October. I started hormones, the Vivelle dot .025 mg. 

My primary care physician went out on personal leave in September, leaving me to try and figure out all of this shit on my own. I know, it's not his fault but I still felt abandoned by him. I saw a cardiologist and my tests all came back normal. Still feeling like crap 4 weeks after surgery, I asked my gynecologist if I could increase my hormones. She bumped me to the .0375 mg patch. 

In the meantime, I lost 15 pounds, going from 130 to 115. (I'm 5'3") I had horrible panic attacks anytime I got into a car, I would get winded just going up stairs. I was constantly cold. I was sleeping like crap and relying on the Xanax to give me relief and help me sleep. I was also having major issues with constipation - extremely major. My gynecologist wouldn't do blood tests to see where my hormone levels were and refused to increase my patch again; so I decided it was time to find a new doctor.

The Endocrinologist

I went to the Endo in November. I really had high hopes, because I figured this doctor is an expert in hormones, right? Well, all she cared about was my suppressed TSH (which is common in people who take Armour or other naturally desiccated hormones) so the first thing she wanted to do was take me off of Armour and put me on Synthroid; she didn't even want to talk about my other hormones until January. I left feeling frustrated and confused. I had no idea where to turn next.

Me - Dec 2013: 115 lbs. I haven't been this thin since my early 20's...

Hormone Specialist #1

I did a Google search and found this guy, and at first I was reluctant to go see him because he was pretty far from the house. I still couldn't drive and still had issues with being in a car. But I made an appointment and had my dad drive me. The doctor saw me right away, we talked about my symptoms, he drew some blood; told me that women without ovaries were the 'easiest to treat' and promised to have me 'back to 99%' by January. He put a rush on my labs and I had the results within 4 days. No surprise; I was low in everything - estrogen, testosterone and progesterone. He was okay with my thyroid labs where they were so opted not to change my thyroid medication or dose. He put me on a compounded hormone cream consisting of estroil, estradoil (two of the main components of estrogen) progesterone, and testosterone. He also put me on oral compounded progesterone to help with my anxiety and to help me sleep. I tore off the stupid patch and started the creams. On my own I decided to increase my Armour back up to 120 mg. At this point I am also seeing a therapist to help with the anxiety. She wants to put me on Prozac - I resist.

I did pretty well on the cream at first; I started gaining weight (in my case that was actually a good thing) but I was still having lingering symptoms. We increased the dose at the end of December, and again in January after labs showed I was still low in everything. Obviously I wasn't absorbing enough of the cream; so he put me BACK on the stupid patch along with a cream that was only progesterone and testosterone. Within 2 days I was back to the horrid constipation and fluctuating hormones. I took off the patch and went back to the cream - in the meantime, since I apparently didn't fit into the profile of the typical 'easy to treat woman without ovaries', this doctor pretty much gave up on me. I refused to accept this as my quality of life - so on to yet another doctor.

Gynecologist #2

I went back to my original gynecologists office; only this time I saw a different doctor. We talked for about an hour, she asked me a ton of questions, and told me that some women have trouble absorbing transdermal delivery options (like creams, gels, and patches.) She also asked me if I had Hashimoto's. I didn't even know what that was. She had a ton of blood drawn, then scheduled me for hormone pellets. I was so excited, I figured at last I would get some relief. Since this doctor is so popular, it took me 4 weeks to get in to see her again. About a week after my blood draw, I got my labs back - my estrogen and testosterone were sky high; apparently I wasn't supposed to put my cream on prior to the lab draw. I called and asked if we could re-check it because I knew that wasn't right (my E was 508 and my T was 334 - there is NO WAY I was that high.) They said there was no reason to recheck and the numbers weren't important. They called me two days later saying they forgot a lab and asked me to come back in. When I went in to get that lab drawn; I asked again if they could recheck my E and T; they again told me it was not necessary so I trusted that and let it go. My labs also showed my thyroid peroxidase antibodies to be at 117; anything over 35 is abnormal, confirming Hashimoto's.

Four weeks passed. I went in for my pellet insertion; only to find that I'm scheduled to see an RN, and not the regular doctor. I had a lot of questions - primarily about the pellets, and my thyroid and what did the antibodies mean; the nurse said yes, you have Hashimoto's. So what do I do? Do I change my diet? Take medication? What? After a while it seemed like she was sick of me asking questions and went and got another nurse to come in and talk to me. This nurse took a look at my labs and said I was 'way too high' in everything and that doing pellets would be a mistake. I tried to tell her that those numbers were a false spike but she told me no, and that was why I felt so crappy. She wanted me to drop my Armour to 90 mg for two weeks; then drop to 60 mg; and then come back to see her again in 4 weeks. She told me to start the Prozac, I mean really; what could it hurt? So I started 10 mg of Prozac...

After I got home, I got an email saying that they had, in fact, checked my E and T again at that second blood draw; my E was 99 and my T was 62.... I emailed the nurse stating this, asking what does that mean? My emails and phone calls went un-answered. I emailed again after dropping back down to 90 mg on my Armour and told her I felt horrible. She finally emailed back and said it was time to switch me to - you guessed it - Synthroid AND Cytomel - two totally synthetic thyroid hormones. Not one word about the complete and total difference in the two hormone results...

At this point I'm feeling extremely frustrated. I have been out of work for almost a year. I can't hardly leave the house; most days I'm so fatigued and so cold that I spend the day on the couch under an electric blanket. I feel like I can't breathe and get winded easily. I have muscle aches and tension, stomach issues, my weight keeps fluctuating, I can't sleep worth a crap. I'm exhausted during the day but unable to nap. I'm so depressed that I go for days without showering - it takes too much energy. I have absolutely zero quality of life. The only time I leave the house is to go to dr appointments or the grocery store and it's never by myself. I've thought about suicide. I've gotten totally lost in the past because my memories of what was are so much better than what currently is. I hate my life. Another Google search, another doctor...

Hormone Specialist #2

On April 14th, I went in to see a new doctor. I had zero expectations and actually felt a weary resignation that this one would also be a disappointment. We talked for two hours. He ordered more blood work and told me that I should actually not use my hormone cream the night before or the morning of my blood draw. He told me to take my thyroid medication 5 hours prior to my blood draw. We scheduled our follow up appointment for April 21st. I went in, we talked again - and I opted to have pellets inserted at that time. He injected 12.5 mg of estradoil, 100 mg of testosterone, and 25 mg of progesterone. He left it up to me if I wanted to stay at 90 mg of Armour or go up to 120 mg (I'm opting to stay at 90 mg for now.) He also put me on an assortment of supplements: oxytocin, DHEA/Pregnenolone, Vitamin D - 5000 i.u., 5-HTP,melatonin, and a probiotic. I also take vitamin C and a vegetarian multivitamin. I have not started the 5-HTP yet; I quit taking the Prozac and wanted to wait a week before adding the 5-HTP, since they both work with Serotonin. My experience with the Melatonin was not comfortable; it made me feel sleepy and drugged but I still could not fall asleep. Not sure what to do there.

So... That is where I am now. One week out from having pellets injected. So far, I feel the same; although I'm not as cold all of the time anymore. I do still have the strange internal tremor feeling, my jaw/ears ache, my eyes bug me a bit, tinnitus, and the ever-present shortness of breath. The thing that started this entire journey. 

Sorry this is so long - but I swear I left out a bunch of stuff... I'm currently stabilized at 125lbs and eating gluten free for the Hashimoto's. It helps with bloating but other than that, I don't know if it's making any difference. My primary care physician is still out on leave and I don't know when he'll be back.

 Below are some links for anyone who wants more detailed explanations of any of the disorders.

For a more information about Gastroparesis - click here

For a more information about Hashimoto's disease - click here

For a more information about surgical menopause - click here

I believe that all of these things are connected; I believe the hormones (thyroid and sex hormones) have aggravated my already slow digestive system - giving me the diagnosis of gastroparesis. I feel that once I get my hormones balanced, that my stomach issues will calm down. I know that Hashimoto's is an autoimmune disease, but it seems like a lot of doctors think it's 'no big deal' and don't seem interested in finding the root cause of it to heal it. My first step is getting my female hormones aligned. Then I'll go from there. This big long winded blog will be for that. Thanks for sticking with me...