Going through hell

This is going to be a really hard blog for me to write. I like being a positive, upbeat person. I love life, I love living out loud - feeling like I'm out there participating. I have a tendency to hide any sign of weakness (perceived or real) behind a smile and a positive attitude because I don't want to be a downer. I like to feel strong, energized, and involved; I enjoy living life to the fullest.  

But I'm not right now. I feel broken. I feel frustrated. I feel sick. Even with the diagnosis of Gastroparesis - I know there is something else going on. I have not met one other person with GP who has constant shortness of breath or feeling easily winded ALL THE TIME. Some of them get it after a meal if they're bloated - I have it all the time. I get winded just walking up a flight of stairs. Two months ago I was running 8-12 miles at a time. How is this possible?? If it were just the stomach stuff, I would be coping just fine, I'm eating pretty good, adjusting to the new diet and not having too many issues on that side; the acid reflux, some abdominal pain, and feeling overly full for about an hour after I eat. 

But the shortness of breath... It triggers panic attacks. I've had a lot of people tell me that anxiety causes shortness of breath, you have to slow down your breathing; etc. DUH. I know this. I've had panic attacks in the past, but my breathing issues came BEFORE the anxiety. Looking back through journals I found where I wrote about several instances of feeling like I couldn't catch my breath hours after finishing a run. I recall in particular one 10 mile run way back on June 22nd, I was in the shower and felt like I just could not get enough air. No anxiety, no panic - just sort of a 'huh, that's weird' kind of thing. I noticed when I bent over a little, it was easier to breathe. This was hours after my run. Then, after my half marathon on June 29th, I experienced the same thing. I could not catch my breath after the run. I had to walk around for about 20 minutes and my heart rate was accelerated the entire time. My chest hurt, and I felt like I could not get enough air. I also have a pain in my back on the right side, in the middle of my shoulder blade. This comes and goes. The panic attacks didn't start until after my run on July 13th.... 

Anxiety and panic attacks are like a rash. For people who get them - you'll know what I mean. For those of you who don't - I will try to explain. Like a rash, it starts small. After my run on July 13th, I felt overly full and short of breath after a meal. This made me feel anxious - for the first time, I felt really panicked. I took some medication for it. But that was the start of the rash. I scratched it, so it began to grow. Soon I was experiencing anxiety around every meal, worried I would have a panic attack - scratch scratch scratch - before I knew it; I was having panic attacks out of the blue, not triggered by anything in particular. I had one while getting my hair done. I've had 2 while driving; and several as the passenger in the car. Yesterday morning I had the worst one yet; all I did was get out of bed and walk downstairs. Panic attacks are very uncomfortable, they make you want to avoid the things that seem to cause them. For this reason, I am currently feeling extremely agoraphobic. I won't drive. I only go somewhere if I have to and someone has to drive me AND I have to be doped up on Xanax. I have found that I breathe a bit easier when I'm semi-reclined, so guess where I spend most of my time...  

I've had a whole bunch of tests done. Lung tests came back normal. Hormones came back low, doc thinks I might be starting menopause (I had a hysterectomy in 2009 - keeping one ovary. So I lack the conventional sign of impending menopause.) I have a few symptoms and maybe this is also contributing a little to the anxiety and the depression. I'm scheduled to discuss 'options' later this month. I'm also set up for a stress test for my heart. I've had a couple of EKGs come back with abnormalities but the doctor didn't think they were note-worthy. I had a CT scan in the ER and they also noted a heart abnormality that they didn't think was serious but was worth investigating. My heart rate always got up into the higher zones and stayed there whenever I exercised; and took a long time to come back down. So who knows. 

All I know is that I'm tired of this. I feel super fatigued. I'm in pain (lower back and across my front, right under the ribs.) I'm angry; I'm scared. I'm frustrated with my GI doctor (who can't seem to make the time to call me to answer some questions I have...) My primary care physician has been wonderful - answering my emails, getting me in on short notice; listening to me and making me feel like he genuinely cares about me. 

I was unable to run the AIDS Walk, but even worse was that I couldn't even walk it. I didn't even want to GO. But I doped myself up on Xanax, and my dad took me so I could turn in my money and at least feel like I was involved. I had a nasty panic attack on the way home - it's the first time my dad has witnessed one. I think it scared him. My dad has been amazing, even if he doesn't understand. He called me when I was having a melt down and my husband was out of town; and he came over just to sit with me. I never wanted him to see me that way - but I needed him. He's been an amazing source of comfort and security - I was having another hard time this weekend and he held me and cried with me. I don't know what I would do without him - especially when my husband has to travel.

I don't want pity. I don't want advice. I'm just venting. I KNOW this is temporary. I know it is. I know I'll get through it, and that I'll adapt to whatever modifications need be made to my life. I'm a fighter. I'm a survivor and I will get through this.I just wanted to share because when I'm feeling the way I do now, I do an internet search, and I find blogs like this one - and when I read them I suddenly feel not so alone. And that helps. I'm not alone. Sure, I have moments of utter hopeless despair, where I wonder if this is it - if this is how it's going to stay; but those moments pass. I am going through hell right now. But I've been here before. I know the drill. And I will get through it.

My diagnosis - and an uncertain future

I went in for a gastric emptying test this past Monday. Basically I ate a meal consisting of scrambled eggs and 1 1/2 slices of toast; the eggs contained a radioactive tracer. As soon as I was done eating, they put me in a scanner that scanned the food in my stomach - I stood there for a minute, then headed to the waiting room for an hour. They scanned me every hour for 2 hours, then I had a 2 hour break before coming back for my final scan. The purpose of the test is to find out how long it takes for food to move from your stomach to your small intestine. At 2 hours, I was at 63% contained (normal is 60%) and at 4 hours I was at 20% contained (normal is 10%). Basically, I still had more food in my stomach than normal. This confirms a diagnosis of Gastroparesis - I was told that mine is 'mild'. 

My particular symptoms are acid reflux, feeling overly full after only a few bites of a meal, shortness of breath, loss of appetite, and abdominal pain and bloating. In the past, I've had flare ups of these symptoms that usually lasted a few days to a couple of weeks, then things calmed back down and life resumed. I'm over a month out since the first sign of this flare up and still no sign of things calming down yet.

There can be a couple of causes for my particular case - I have hypothyroidism and I also have had 2 abdominal surgeries where the vagus nerve could have been damaged. Either way, my digestive system is sluggish. I was put on the drug Domperidone (a motility drug to help speed up the contractions in my stomach) in addition to taking 60 mg of Dexilant (for acid reflux) in the morning and 300 mg of Zantac at night to help control the nighttime acid reflux. (It's been pretty horrible this past week for some reason. I wake up feeling like I'm having a heart attack.) I've also added a probiotic and now have to eat a special diet that consists of some seriously bland food. 

The other thing I'm dealing with is the panic cycle that was set off with the shortness of breath. It has gotten so bad that I can't even drive without having a panic attack. I take Xanax every day. I'm still afraid to try to drive - I can't even imagine skating, the memory of having a panic attack right there on the bike trail is still too fresh in my mind. I doubt if I'll be doing any more skating this year. I'm also severely depressed; and understandably so. Been here before - I know the way through this is time. It just takes time.

I am trying to process what this all means as far as my future as an athlete. The fact that I'm still so new at even BEING an athlete makes this feel even more unfair. I have a theory as to why this flared up when it did and to the extent that it did - everything started once I started training really hard for my first half marathon. I honestly believe that the increase in the intensity of my physical activity is what triggered this. During intense exercise, blood is shunted away from the internal organs to focus on oxygenating the muscles - causing the guts to slow down. In a normal person, this is temporary. For someone with an already slowed down system - it can be pretty devastating. The harder I pushed myself to run, the farther I pushed, the faster I went - the worse my symptoms got.  

So - what does this mean for my future? I'm fairly certain that I won't be running any more half marathons. My bucket list was to do at least one; I did two - so I am okay with this. My HOPE is that I can continue to run, going slower to keep my heart rate down and not going as far so that the stress on my guts won't be as intense or prolonged. As far as skating - well, I don't know yet. Probably the same thing. Not pushing as hard or going as far or as fast to keep my heart rate down. If I race next year, I will be in the rec group skating slow - I hope I can still do full marathons, if not- I'll drop down to the half. As long as I can still skate and run, I'll do whatever I have to do to keep my symptoms in check. But that comes later. I've tried to do a Google search to find athletes coping with Gastroparesis; and only found ONE person. And she's a power lifter. I could not find any runners or endurance athletes. Disheartening. I don't know what to expect.

I do know that my season is over. I won't be skating Northshore. I won't be running the Rock n Roll half marathon. My focus now is getting my body back in balance, and getting my life back to normal. My energy level is pathetic. I'm in pain. I'm depressed. I'm taking in maybe 800 - 1000 calories a day, if even that. I'm really hoping to get to a point where I can start eating normal food instead of pudding, and eggs, and peanut butter, and fruit cups - I feel like my diet is that of an elementary school student!! I miss salads..............

I hope I am open to whatever comes next. Right now I just don't know what that is yet.