A2A, 38 mile finish line; 2011

Friday, November 8, 2013

And I'm STILL On A Detour...

So by looking back over old journals I'm seeing that some of this stuff started long before I became fully aware of it. I was having some weird dizzy spells at work every once in awhile but wrote it off as allergies/sinus congestion. Little vague symptoms that I always found reasons for. I've had issues with GERD (acid reflux) for a few years and every so often I would have a couple of days where I had no appetite and felt overly full. I would skip a few meals, take some medicine and it would pass. Never thought anything of it.

When I started training to run my first half marathon in February of this year, I felt fine. My training went great. I grew to really love running and ran my first half marathon (the Colfax half) on May 19th. I did it in 2:05 and was very proud. I felt great after the race but as the morning went on, I felt really, really bad. (Dizzy, light-headed, very nauseated, stomach upset.) I got very sick for a couple of days. I figured it was due to my pre and post race nutrition. So I started doing research on what to eat/drink before and after a long run so I wouldn't feel that way again. I signed up for a few more running races as well as some skate races and kept on going.

On June 9th, I ran the Garden of the Gods 10 miler. I had NO issues. I had a great run, I felt good afterwards and figured I'd gotten the nutrition down. On June 15th, I skated the Apostle islands inline marathon. Again, looking back I realize I was having some issues then but didn't really acknowledge them. I had a lack of appetite the night before, and low level anxiety days before and during the race. I've always been kind of a fearless skater, but recently I'd become a lot more anxious. No idea why. I still had fun and finished but I skated a lot slower than I had anticipated. I chalked it off to not enough training. On June 22nd, I ran a 10 mile training run, and that was the first time I noticed the shortness of breath thing. I was in the shower over an hour after the run, and still felt like I couldn't catch my breath. I didn't feel anxious or panicked about it - just thought it was weird. It passed and life went on. On June 29th, I ran my second half marathon - the Castle Rock half, and that was when things really started to get bad. That was a hard race, it was hilly and I kept having to stop and walk because I felt like I couldn't breathe. After the race, I could not catch my breath or get my heart rate down. It made me feel a little panicked. I walked and walked, trying to get everything calmed down. I drank water and Gatorade and still felt extremely light-headed and dizzy. I had a rough couple of days but again, things calmed back down - except for my stomach.

On July 4th, I ran a 5K. The night before I had a lot of difficulty eating; I felt overly full and short of breath. I ran the 5k a little slow, felt okay afterwards. I was supposed to run another half marathon on the 13th, but dropped that down to a 10k. I didn't want to do it at all. I ran the 10k, felt okay afterwards. Went home, ate some lunch; felt okay. After dinner - I had my first meal related panic attack. I felt overly full and unable to get enough air. I took some Xanax and it calmed down. I had two more issues with that afterwards, and ended up in the ER on the 17th. It felt like someone had me in a bear hug, there was so much pressure in my abdomen. It hurt to take a deep belly breath, so I was taking short, quick breaths. This, of course, caused me to hyperventilate. I've never done that before, it was the most terrifying thing I've ever experienced. My hands and face started to tingle and my whole body tightened up. I couldn't walk, move my hands or talk. I thought I was having a seizure!!! The ER doctors gave me a shot of Valium and a shot of Reglan and sent me home with a prescription for Reglan. (Reglan is a motility drug, it helps your stomach empty after you eat. It also has some really bad side effects. Which I did not know.) I made an appointment with a GI doctor but it would be over a month before I could get in to see him.

So I started the Reglan and actually started to feel better. I was eating a bit more and decided to get back to training since I had a skate race scheduled for August 4th. On July 23rd, I went for a skate. I felt short of breath, so I took it easy. On the way back - with just over 3 miles to go - I started having a panic attack. I honestly do not know how I made it back to my truck but I did. I took my Reglan and a quarter of a Xanax but could not get my breathing under control. I started to hyperventilate again - which made me panic even more. I asked some cyclists to call an ambulance. I felt really stupid because I knew what was happening, I just couldn't get it under control. The Littleton paramedics/firemen were amazing; two of them actually had panic/anxiety disorders so they were extremely compassionate. One of them tried to help me get my breathing under control but I just couldn't do it. Every time I thought I was okay, another wave would roll over me and it would start all over again. So, they shot me up with Valium and took me to the hospital...

Ugh. Anyway... Littleton hospital actually did a CT scan, they found a cyst on my ovary (I only had one ovary, I had everything else removed in 2009) and a minor heart abnormality. I was also low in potassium. So they gave me some potassium and sent me home. I made an appointment with my girl doc to get the cyst checked. I stopped the Reglan (I suspect it made my anxiety 10x times worse) and basically started living off of liquids. I constantly felt overly full, short of breath and had zero appetite. I started losing weight rapidly. While waiting on my specialists appointments, I saw my primary care physician (whom I adore, he's amazing) several times. I felt desperate to know what was going on in my body. We checked my lungs (full capacity, all normal) my heart (all normal) and I had him check my hormone levels. Way low. Practically non-existant. He told me that it looked like my ovary was failing.

So I go see my girl doc; the ultrasound showed what looked like a complex cyst measuring over 5cm. She said we could wait to see if it shrunk or we could do surgery to remove the ovary. Due to my age and the size/type of cyst; she said it would be best to remove the ovary and not just the cyst, especially since I've always had issues with cysts. She told me she wanted to run some tests to check for cancer. At this point my anxiety/panic is so bad I can't drive anymore, and I need to take Xanax to even ride in a car. She did not think that my anxiety had anything to do with my hormones being low, and told me to go see a therapist.... 

Finally I get in to see the GI doc, he ordered a gastric emptying test and diagnosed me with Gastroparesis. Basically this means that my stomach empties too slow, so food is just sitting in my stomach. At 4 hours I still had 20% of my food in my stomach; normal is 10% - 0%. I already knew I had this, my first GI mentioned that I had a 'lazy stomach' back in 2010 but aside from a few days here and there, I'd never had issues this bad. My GI doc could not answer my questions - did running cause this? I have a hiata hernia, could that be getting worse? Is it my hormones? Why am I always short of breath?? He was clueless. He just gave me a print out for the gastroparesis diet (which is horrible) and a prescription for a drug that is not FDA approved so you can't even get it in the US. I managed to get a sample of the drug from a friend of mine; took it once and had super bad stomach cramps, and it made me really dizzy. So I can't take that one either!

So this is my life now, I'm fucking miserable. I'm dropping weight because I can't eat, I feel like I can't breathe so I'm barely moving, I'm having panic attacks constantly - I just wanted to die. I couldn't bear how I felt. I decided to have the surgery to remove my ovary in hopes for some relief but I'm waiting for the stupid lab results because we can't do anything until we have those numbers! I'm worried that I have cancer - WEEKS go by then finally my chick doc calls to tell me that the lab LOST MY RESULTS and I had to go have my blood re-drawn. Argh!!! In the meantime, my primary care doctor wants me to have a general surgeon there in case I have adhesions. I figured since I'd have a general surgeon there, I may as well have her remove this very painful enlarged lymph node that I had in my armpit. I'd had it for over a year, and my primary care doc wanted me to get it removed. More time goes by because my chick doc's assistant can't seem to coordinate with the surgeon's assistant. Blood work came back fine, and finally we have a surgery time, I go in for surgery on October 11h, and suddenly I'm in menopause. I had NO adhesions, and all pathology came back benign. (Yay!) I had a hemorrhagic cyst and a fluid filled cyst - both benign. 

From everything I've read and from what my primary care doc said; I was pretty much in menopause anyway. I had my hormone levels checked when I was feeling really bad and my estradoil was 16. Normal for me was about 200. My primary care physician was concerned, chick doc wasn't. She blew off my hormone levels, she blew off my list of symptoms (she told me the only symptoms of menopause are hot flashes, night sweats, and insomnia.) Uhhh... No.... There are actually a bunch of really weird ones, and the ones I have are cold flushes, tinnitus, burning mouth, bloating, depression, anxiety, increase in digestive disorders. I think my hormones are what caused my gastroparesis to get so bad.

At my lowest, I got down to 117 lbs. I managed to get back up to 119, and I've been stable there for a couple of months. Normally I like to be around 125. I'm seeing a new GI doctor on Monday and an endocrinologist next Thursday. I've been seeing a therapist too, and lo and behold; she also thinks my anxiety is from low estrogen. I found an endocrinologist who specializes in both thyroid and menopause symptoms so hopefully she'll be able to balance me out. My chick doc started me on the lowest dose patch and I actually started having WORSE symptoms... She just increased it but my hope is to eventually find a good balance then switch to pellets. I'm also hoping that when my hormones balance out, my anxiety will calm down. My stomach will calm down. I'll start sleeping better. I'll have more energy. I'll be able to get a job. I will get my life back. I honestly believe that this all boils down to hormones.

As of right now, I'm eating a little bit better, but I'm still constantly short of breath, have very low energy, and get tired very easily. I'm depressed as fuck. I can't drive, I have anxiety and I'm still having panic attacks - I'm hoping even just the little bit of increase in estrogen will help take the edge off of that. My hair is falling out. My joints and muscles ache. My ears ring. My mouth is really dry and burning. The acid reflux is still pretty bad. I feel like shit. I can't sleep. I am focused on living one day at a time, because if I look back I feel sorrow for not being able to do what I was doing, and when I try to look ahead I just see a big blank question mark and it scares the shit out of me. So the mantra is one day at a time. I have good days and bad days; a good day is one without needing Xanax and actually doing something, like taking a walk or making it to the store without a panic attack. The bad days are bad... Just bad. Days I just have to push through and they usually involve a lot of tears. I know that it takes time to get hormone levels balanced out, and I have to be patient. I'm really trying. I still have hope that I'll get past this and get back to a good quality of life. I have to have hope. Otherwise it's too easy to let the despair win.

So yeah. That's where I'm at.

UPDATE 11/30/13 

So the endocrinologist was a bust; she didn't even discuss hormone replacement with me, and she wanted to take me off of my Armour thyroid (natural) and put me on Synthroid (synthetic). No thanks.... I have an appointment with a hormone specialist on Tuesday - he specializes in compounded natural hormone replacement therapy for all hormones; including thyroid. I am very hopeful. If I have success with a compounded cream, I won't need to do the pellets. (Pellets are kind of scary.)

The new GI doc thinks my motility issue is in my small intestine and not my stomach; he gave me Linzess. I took that once and had horrible side effects. I don't think my system can handle the drugs and I need to find different options.

My therapist wants to put me on Prozac. Not sure how I feel about that, but I can't keep taking the Xanax...

Since switching to the .0375 mg patch, I'm doing a little better. I'm down to 116 lbs though, which is awful. I'm having really bad sinus headaches right now; I've been doing the Neti pot 2x a day, taking Mucinex and Tylenol. Last night was the first night in a week that I didn't have a headache like my head was being crushed. I hope that's a sign that whatever is going on (allergies, sinusitis, etc.) is clearing up on its own and I won't need antibiotics. I'm still sleeping like crap, my joints hurt, and I get tired really easily. Still no end in sight but I'm hanging in there.