A2A, 38 mile finish line; 2011

Sunday, March 9, 2014

Long Road Still Ahead

As inline skate season looms and I'm still nowhere near 100%, I figured it was time for an update. I'm sorry to deviate from the main purpose of this blog but this is still part of my journey. I've been enjoying the cold, gray, snowy days because the sunshine makes me think of skating and running and being outside; and not being able to do those things depresses me even more. At this point I don't know if I'll ever do them again. Oh I know, I have people telling me "You'll be back! Stronger than ever!" but the truth is - I don't know that for sure. I might not be. I HOPE so, and that hope is what keeps me going; but I have come to terms with the possibility of it not happening. 

Here's what I do know - my body is still pretty jacked up. I'm on doctor #4 as far as hormones go; but this one seems to be more focused on my thyroid. I was diagnosed hypothyroid several years ago, and have been on medication for it. Last year my numbers suddenly shot high; then after lowering my medication, they were good for a short period of time, then suddenly dropped. I raised my medication again, but my numbers are still low. My dr thinks I have Hashimoto's Thyroiditis. This would explain some of the symptoms I'm still having. She ran a few tests, and my tests came back pretty conclusive of Hashimoto's. I do not know what this means for me yet, it's an autoimmune disorder, I've been reading that one thing that may help is cutting out gluten.

I see my doctor again on the 19th to discuss a different delivery option for my hormones, I'm still fluctuating a lot on the cream and not absorbing right. These fluctuations make for some pretty bad days; I'll have a day where I'm suicidal depressed; next day I'm happy as a clam. Some days I can drive like normal; next day I'm so anxious and panicky I can't even walk to the mailbox. It's FRUSTRATING. I'm considering BioTE hormone pellets, I am hoping to have those inserted on the 19th. They seem to release a more consistent dose of hormones. I'm sure we'll discuss the thyroid results and what that means for me as well.

I'm still having issues with the Gastroparesis, but it seems to be getting a bit better. I got down to 115 lbs in December but since starting the hormone cream I've gained 10 lbs. The bad news is that part of it is due to horrible sugar cravings; so I'm not eating quality foods. The weight I've gained is also all in my stomach; so I have these little stick arms and legs and a nice round stomach. Gross. I'm hoping the pellets will balance out whatever is causing these cravings; they are horrible. I end up eating stuff I shouldn't and them I'm uncomfortable for the rest of the day...

Also - still with the shortness of breath and no idea as to what's causing it. The slightest bit of exertion (like a short walk, less than a mile) leaves me winded and feeling like I'm starving for air; this sensation triggers panic attacks. I've had 2 panic attacks while out on walks; and one while walking around shopping. The panic attacks have gotten better, I am no longer taking Xanax during the day; but I'm stuck in a cycle of situational anxiety where I avoid the things and places where I've had them. I am extremely uncomfortable driving by myself; although I can now ride as a passenger in a car without medication or having any discomfort. I see that as a positive sign of progress. I just wish I knew what was causing the shortness of breath - it's very disconcerting.

I saw my GI doctor last Thursday and that too was disheartening. She was abrupt with me, told me I needed to accept my diagnosis of Gastroparesis and quit looking for some magic wand that will make it go away. She told me to buckle up because I was looking at a good decade of struggling with menopause and getting my hormones balanced. I wanted to punch her, I left her office in tears. She wrote me a prescription for an antidepressant (Elavil) which is supposed to help with the 'visceral response' to the discomfort of Gastroparesis (example - my stomach bloats and makes it harder to breath; that triggers panic. This medication is supposed to help with that.) Then she told me I can't take it until I get my other hormones sorted out - so who knows when that will be...

I'm not a fan of medications as bandaids anyway, I hate it when doctors throw a prescription at you and send you on your way without even trying to dig for the root of the problem. It pisses me off. I know that by correcting the primary issue (in my case I honestly believe it's hormonal; be it thyroid or sex hormones) that the gastroparesis will calm back down. I am sorry, Mrs. GI doctor, but I do not just accept this and I do think I can fix it enough to regain my quality of life. I've always had slow digestive transit; but never to this extent. I believe that when my hormones went haywire, my gut did too. I still believe that once I find the balance with hormones and nutrition then I should be in a much better place.

And that's where I'm at. I already know for sure that this year will be a sidelines year for me, but I've accepted it. What else am I going to do?

Monday, February 3, 2014

Still Holding On

I'm almost afraid to write this. My life has been a roller coaster ride for the past 8 months with no signs of slowing down yet. Every time I think I'm on the way up and I'm in the clear; I take another ride down. The rides down are harsh and do some serious damage to my confidence. I know this is supposed to be a skating blog and I sincerely hope that soon it will be once more; but for now it's a place for me to work through the situation and update anyone who is wondering how I'm doing.

I'm trying not to feel angry, or bitter, or let down. Nobody told me it was going to be like this. Nobody told me that this stuff is all tied together, our bodies work in harmony and when the chemicals that drive those systems go wonky - everything goes wonky. My GI doctor had no idea if my hormone imbalance was affecting my digestive system; research I've done says yes it is. My original gynecologist said there's no way my anxiety and panic attacks were caused by my hormones being out of balance; research I've done says yes they are. I think it sucks that you have to go out and educate yourself about these things; then go back to your doctor and tell them they're wrong. I know, I know, just because I 'read it on the internet' doesn't make it right. But I'm reading medical research documents, I'm comparing to postings by numerous other women, I'm reading blogs and articles posted by members of the medical community. I can tell you from experience that my digestive stuff IS getting better since using the hormone replacement cream; I'm eating more, I'm gaining weight, and I'm not having as many issues as I was having before. (Like constipation or feeling overly full and unable to take in enough calories.)

In the meantime, my primary care physician is still out on leave - he should be back in a couple of weeks. It has been very hard going through all of this without his guidance and advice. The PA they have filling in for him pushed two types of antidepressants at me and won't give me anymore Xanax. She also got mad because I wouldn't drop my thyroid medication down to bring my TSH levels up - so she's still in the dark ages as far as how to dose for thyroid as well! I refused to drop my dose so she wouldn't refill my prescription - I asked my hormone guy to do it. He also goes by TSH unfortunately, but at least he filled my prescription. The problem is that I'm having hypothyroid symptoms, so I increased back up to my original dose on my own (from 90 mg to 120 mg) because based my my T3 and T4 numbers I already know that my primary care doctor would've done the same thing. Been on that dose for 3 days now and I'm already feeling better.

As far as my other hormones, I saw my doctor a couple of weeks ago and had blood drawn, my estrogen levels barely budged (went from 52 to 54) and my testosterone is still below optimum; but my progesterone was really high. So he cut that back and increased the E and T. Been on that dose for about 3 1/2 days and yesterday I actually felt totally normal for the first time in months. I didn't feel overstimulated, I didn't feel anxious, I didn't feel fearful; I felt normal. I'm actually starting to WANT to get out of the house, to go drive, to go walk, to just get out - and I have not been feeling that way. I've been extremely reluctant to leave the house. I had a very bad panic attack 3 weeks ago at the nail salon, and that was a huge blow to my confidence. I had driven myself and needed my dad to go pick me up. It's frustrating when you feel like you have zero independence. And it also makes it hard to want to move forward when each time you do you get knocked back. You get sick of it. It's easier to not bother.

I gave into easier for a while. Hid out at home. Started accepting that this is it - this is the new me, this is my new life.

But I really don't want this. It's not acceptable. But fighting is exhausting. Panic attacks that won't go away are exhausting. And as far as people giving me advice all I can say is if you haven't lived it - if you haven't been where I am - then I don't want to hear it. I'm currently only able to relate to women who are in menopause and dealing with anxiety. They know it's not 'just anxiety'. It's a whole bunch of other things too. I've made a couple of new friends who are in the exact same situation and they are the ones I turn to because they get it. They understand exactly what I'm going through and they help me understand. I don't want to delve into the whole list of other symptoms I'm experiencing along side the anxiety; but some of them are bizarre and just as debilitating. This is by far and away one of the worst phases of my life ever. The only thing worse was dealing with the deaths of my little brother and my mom. This is definitely testing my limits.

And now the part I'm afraid to write. I'm feeling better. I am not taking the drugs the PA pushed at me, I trust my hormone guy when he tells me he believes that it's only a matter of getting my hormones balanced. (I was totally fine without antidepressants before my hormones went wonky so to me that makes sense.) I'm anxious to sit down with my primary care physician to discuss everything with him, I really need to find a better solution for my sleep disturbances - right now that's what I'm using the Xanax for, to help me sleep and even that is losing it's effectiveness. I dread bedtime. One of the antidepressants the PA gave me is called Silenor, it's for insomnia but I'm afraid to take it... I want to talk to my primary care doctor first.

So this is where I'm at. I'm extremely anxious to get back to life - back to working, back to driving, back to being a functioning member of the human race. As much as I want to skate, and I do; I dream about it - I honestly do not know when I'll be able to. I'm pretty sure I won't be racing this year, but I'm holding out for next year. I just have to keep being patient...

Thursday, January 9, 2014

Finding My Way Back

Today I walked a mile. It took me 36 minutes and I had to stop twice to rest; but I walked a mile. It's been 5 1/2 months since the last time I skated, almost 6 months since the last time I ran - and I still have a long way to go before I can do either of those things again. But I intend to. I am starting over, completely from scratch; as I have lost the majority of my muscle tone and all of my conditioning. 

Since my last post in November, a few things have happened. The first and most important one being my finding a hormone specialist. I saw him at the beginning of December, he took blood work and discussed my symptoms then put me on a compounded bio-identical hormone cream. I've also learned a lot about hormones; our female hormones do a hell of a lot more than just prep the body for making babies or making you feel like a mental bitch before your period - they affect every system in your body. Low hormones can wreak havoc! This is what happened to me. I had too little Estrogen, Progesterone, and Testosterone. My symptoms have been first and foremost the anxiety and panic attacks; insomnia, depression, hair loss, heart palpitations, night sweats, muscle tension (in my neck and back) worsening of digestive issues, irritability, crashing fatigue; and a few other fun ones. I suspect that low hormones are what caused my already slow motility issues in my digestive system to get even slower - they're still not 100% but it's getting better. I can eat almost normally again and have been gradually adding foods back into my diet. I got down to 115 lbs but I think I've gained a few pounds. 

I'm slowly getting better, I have more energy and less anxiety; I do still have some hesitation towards driving (since most of my panic attacks occurred in vehicles) but I know that I'll have to continue to work on that to overcome the fear and get back to driving myself normally. I'm pretty much completely off the Xanax (I just take it to help me sleep but that will be changing after my Dr appt tomorrow.) But the biggest thing is that I feel optimistic. I feel hopeful. I don't feel the crushing despair or the hopeless fear that this is how things are going to be from now on. I refuse to accept that. This is not living. So far I have not needed to take an antidepressant; my hormone doctor is pretty confident that I won't need to. So I'm just taking my thyroid medication, my hormone cream 2x a day, and compounded progesterone orally at night. I also take Vitamin D, digestive enzymes, probiotics, and a multivitamin.

I see my hormone doctor again on the 20th for blood work, possibly another increase in my cream but I should have an idea of what my new normal is by mid-February. I hope to start skating again in April or May. I am going to skate on my rec skates for now. I don't know if I'll do any races this year and that is okay, I just want to regain my independence and my strength. But I'm getting there!

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.

Thursday, September 19, 2013

Still In The Middle

This past Saturday was the Northshore Inline skate marathon, the biggest race of the year; and I was not there. My body is pretty messed up - but so is my mind. My emotions. My life. The only thing keeping me going is the hope that this is fixable, and that it's temporary.

First of all, is the physical. I've had a bunch of tests done, apparently my one remaining ovary is not only engulfed in a large cyst, but it is also failing. I get sporadic good days where it pumps out enough hormones to make me feel almost normal, then it sputters and I have a few days of hell. The most interesting thing I've noticed is that when I'm having a good hormone day, my gastroparesis symptoms are not as bad and I can actually eat. It's all tied together. I'm having surgery to remove the ovary (I had a hysterectomy 4 years ago, they took everything else) I'm waiting for my two surgeons to consult and get their schedules aligned. (One surgeon will remove the ovary and any endometriosis, the other one is removing an enlarged and painful lymph node from my armpit.) She will also be on hand to remove adhesions if necessary. The lymph node is benign, it's just been bugging me for almost two years. I figured if I was going to be under anyway, may as well remove it...

After surgery, I will be in menopause. Even though it's obvious that I'm heading that way anyway, I'm still very nervous about it. I will be starting hormone replacement therapy immediately following surgery. I'm scared. Which leads to the other part of my crisis; the mental.... I'm worried about my bipolar disorder acting up, I'm worried about being all moody and evil; and I'm worried that the anxiety will get worse....

I'm not sure what triggers the intense anxiety and panic attacks - I'm suspecting hormones - but I do know that it has completely taken over my life. I do not leave my house unless I absolutely have to, usually just to go to Dr appointments. I also have to have someone drive me because I cannot get into a car unless I'm doped on Xanax. Both of my doctors have urged me to get counseling so I'm starting that on Monday. I really hope it helps because I'm stuck in a cycle that I do not know how to break. Anxiety and panic attacks are the worst things I've ever experienced. I would not wish this on anyone. I cannot even believe how debilitating this has been!! I have no desire to do any of the things I love - I'm trapped inside of my house because I feel safe here....

My quality of life sucks but I have good support, my husband and my dad are taking good care of me. I'm trying to stay upbeat and positive but sometimes it's really hard. I have really bad insomnia right now too, which really doesn't help. I've dropped down to 118 lbs from the worst of the GP flare, but have managed to maintain that weight for over 3 weeks now. I'm eating a bit better, still not back to normal. My hope is that my transition into menopause won't be as rough as I'm fearing, that I'll find a hormone balance that will level me back out, that getting my hormones on track will settle my stomach AND the anxiety down; that I'll find my way back to actually living instead of just existing. I can feel it, it's so close. I just need to stay strong and keep going. I refuse to accept that THIS is my life....

And I will be at Northshore next year.

Thursday, August 8, 2013

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.

Thursday, July 25, 2013

Taking it one day at a time...

To be absolutely honest, I feel like I'm in hell right now. My body feels completely out of sync, and my mental health is also suffering. I have to change the way I'm looking at it - obviously there is no quick fix, my skating/running season is more than likely over for the year; so I need to focus on getting my body and mind healthy again. It's a lot harder than dealing with an injury because I don't even know exactly what's wrong yet. I have ideas but until I can get in to see my GI specialist (4 more days....) then I only have some theories. With an injury it's pretty obvious; this bone/ligament/tendon/muscle is injured, you need to do this and this and this to fix it; and no physical activity for x-amount of days/weeks/months...

My painful realization came this past Tuesday. I went skating. I am having trouble with shortness of breath; and I went skating. I was 8 miles in with 2+  miles left to go, and I felt like I couldn't catch my breath. My limbs and face started tingling, I had to stop to focus on slowing down my breathing because I was beginning to panic. It took me over 15 minutes to get back to my truck. I thought I had it under control but I realized I was having a panic attack and I could not deal with it on my own. I asked a cyclist to call 911 and an ambulance arrived about 15 minutes later. I don't want to write too much about it, just reliving it is making me feel some anxiety. But I have to note that the paramedics were WONDERFUL. I was lucky to have 2 of them who had actual experience with panic and anxiety so they were very compassionate. When the breathing exercises couldn't bring me down and I couldn't get it under control; they gave me 2 shots of Valium and took me to the hospital. I went to Littleton instead of Skyridge this time, and I actually had a much better experience there. The nurses were a lot more caring ad compassionate, and we had a very thorough discussion with ER doctor. 

I had a CAT scan done and it came back normal, my potassium was low and something with my heart was a little off - he said it wasn't alarming but worth noting. I was given a potassium pill and sent home. I slept from 4:30 pm Tuesday until 7:30 am Wednesday morning. I woke up, took my Thyroid medication and a Reglan, and 20 minutes later I was having a panic attack. Upon doing some reading I have come to the realization that the Reglan exacerbates my anxiety so I am no longer taking it. This really sucks because it was helping with the bloating and overly full feeling in my stomach; which allowed me to eat more.

My primary care physician had me cut my Thyroid medication dose back from 120 mg to 90 mg - apparently my labs for my Thyroid were high last time I was in so I may be over medicated. This can cause a whole host of issues; including some of my current ones. He also mentioned I might have some adhesions; I had 3 abdomen surgeries a couple of years ago, including my gallbladder - I've been having some sharp pains in the area where that used to be. Who knows. It's like all of these 'maybes' but nothing definite yet. Frustrating.

For now, I am having a great deal of anxiety around eating. I am hungry but I'm afraid to eat. I feel dizzy and short of breath; I just want to sleep. I cancelled my trip to Minnesota - there is no way I can even think about traveling with my heath this unstable; let alone competing in the duathlon. Northshore is still a maybe but for now I am thinking I won't be doing that one either. I feel like my season is over.

But I have to get healthy again. I know I will. I'm just right in the middle of it so it's hard to see a light at the end of the tunnel. I feel frustrated. and scared. and sick. I have moments of utter despair and hopelessness but these seem to pass quickly. I just want my life back. I have a lot riding on my visit with the GI doctor. In the meantime, I am taking a lot of Xanax to keep the anxiety at bay so I can at least eat... And I'm watching a lot of movies. (They keep my brain occupied so I quit dwelling on where I'm at right now.) I also had to put my job search on hold as well - I just don't feel stable enough to be starting a new job on top of everything else.

My next update will come after my GI visit. My guess is that I'll have to have another Endoscopy done (camera down the gullet) and maybe some other tests (gastric emptying, etc...) I just need answers; definitive answers so I can start fixing it. The not knowing or just guessing is very, very discouraging.