Gluten Sensitivity?

Everyone has experienced a moment of stomach upset, knowing what you recently ate isn't agreeing with you, waiting for the consequences. My moment started 20 years ago... and my stomach and/or intestines haven't worked right since. I experienced a barrage of tests and procedures and xrays and questions and prescriptions. My final gastroenterologist just threw his hands in the air and called it IBS. 

A few years later, I began discovering my food allergies; I already knew about my banana and avocado allergies, at this time I discovered I was allergic to milk, a few years after that I developed an allergy to almonds and ultimately just called it tree nuts, then pumpkin seeds.

A couple months ago, my initial symptom of upper right abdominal pain hit me hard, bringing along nausea, lack of appetite (turning into an aversion to eating when my symptoms are really bad), diarrhea, abdominal swelling and bloating, headaches, extra fatigue. Let me be clear, these symptoms are normal for me, just not this bad. I went to the ER a couple times because I felt a lot like I did last year when I got admitted with my liver enzymes off the charts. This time, everything was working fine, so they brought up ulcers (they always bring up ulcers) and gluten.

20 years ago, I was asked if I'd ever tried a gluten free diet. I said I did and they didn't ask further, but knowing what I know now says I did not try a gluten free diet. They never tested for celiac or gluten allergy. Last week, I had an endoscopy and the results came back negative for celiac (my allergist said she's happy to test for the allergy if I want her to). It's comforting to know I haven't essentially been poisoning myself for 20 years, but still upsetting in now actually going gluten free and doing much better.. saying I at least have a gluten sensitivity. Researching gluten now says even with the IBS diagnosis, they should have told me to go gluten free or at least suggested I minimize my exposure. 

I can't say wether or not this is another developed allergy or something I've been fighting since college and it just got worse. I just find there's so many things that could have been prevented if I had been given proper information during the first round. Or even the second. Makes me even more worried about my joint/muscular problems.

Final-ish Report on my Cervical MRI

This summer, I practically demanded a new cervical MRI due to increasing problems that have been ignored for three years when I got my last MRI at a visit to the ER because I couldn't feel my hand. I was continually told that my hand was still functional so no one was concerned; it's become less functional with lack of grip, lack of feeling, and lack of pain sensation. And I finally got everyone's attention.

Orthopedic offered up surgery, Neurology did some extra tests and had the MRI re-read by one of his colleagues. I spoke to Neurology today for the new report and there is a problem, confirming that's the reason for the problems in my neck, shoulder, arm, and hand; he offered up injections. I'm not pursuing surgery or the injections because they would only possibly help the pain. The pain isn't my main concern because Pain Management and my Chiropractor have that pretty well under control.

I pointed out that the concerns I want figured out are the muscle weakness, muscle tightness leading to spasms, and my balance and gait problems. They haven't been concerned about the muscle weakness because my EMG is always normal and I'm still pretty strong, but I have been fighting for at least two years to hold onto the strength I have.. I refused to give up on my arm like I did with my leg. In the last year, the muscle tightness has gotten worse and started causing spasms to the point of muscles contracting randomly, and my leg looking like it's being electrocuted, especially after workouts. My balance problems really got started a couple years ago.. even though I was able to ditch the crutches pretty fast, I tend to run my hand along the walls so I don't run into them. And my gait has been fun for a long time. My gait and balance have come more into focus with my push to walk more. All of this has been complicated by the hyper mobility that is getting worse because of the muscle problems.

Luckily, pointing all this out all at once has my Neurologist on board without the fight I thought I would have to put up. He's bringing me in for a full exam to see what he can figure out, and if he doesn't come up any ideas he'll refer me to another colleague. It's nice to finally feel like he's on my side rather than just going through the motions.

 

8 Years

 

Eight years ago today, I was told I had to stop running. And I took it hard. Even though I had expected it and my doctor had been telling me that for years, this was the first time I agreed with him and it just felt so final. I had to pull over on my way home because I had started crying too hard... in a moment of wanting some support, but not wanting to talk just yet, I posted on Facebook "Inspiring words list. Go." That list of words became a keychain, then a bit of artwork, which I just updated to the one above. To see the keychain and more of what I was feeling that day, you can read my old post.

Eight years doesn't really seem like a major milestone, but the reason for that is the painting below; in the weeks after being told to stop running, I answered a lot of questions and one of my comments was after my second knee surgery I had been told to think of it as I had limited miles on my knee and those miles were up. A few sarcastic follow up questions wondering how many that was led me to figure it out. On a knee that shouldn't have carried me thorough my first half marathon, I completed 13 half marathons (and an ultra marathon!) and 458 event miles over 8 years.

Eight years as a runner with a messed up leg opened up a whole new world to me. I had been told to stop before I even started, but I became convinced I needed to be active to avoid another surgery and other health problems. So I stubbornly pushed forward, and just kept pushing; I found a determination that I had forgotten long ago. More importantly, I found a strength I had never known, both physically and mentally.

Eight years as an adaptive athlete has been possible because of that strength. Most people, especially doctors, have no idea adaptive sports even exist and tell me to stop at every turn due to a lack of education, and I'm happy to change their minds. I now know that being active has saved me in many ways, and I wasn't going to stop just because I had some pieces that don't work. In these eight years, I've learned focus and I've been a part of several teams, finding a level of cooperation and learning from mistakes that I never knew and didn't really know were supposed to exist. These things made me confident enough to coach others. To be able pull able-bodied athletes and potential adaptive athletes into the game. To encourage mistakes as a moment to learn, to show them that athletes don't have to follow a standard way to move. To simply try.

Progress Not Perfection

 About five years ago, my body started to succumb to the dysautonomia that I believe I've had since I was 16. This was worsened by the recovery from an appendectomy; it was that slowed recovery that finally got the right attention and my diagnosis. The damage had been done at that point. My endurance was gone, my strength was inconsistent, my fatigue was horrible. Since starting treatment a couple years ago, I've slowly been working back to my preferred level of activity.

I think you've noticed that level is high.

This eight month quarantine has given me an opportunity to take a leap forward in my progress. Before the quarantine, most of my energy was spent traveling from place to place; having most of my meetings and appointments through video now gives me more time.

It started at the end of March with a threat to challenge one of my mamas to a race with our walkers. I made it around the corner and back.. not quite a quarter mile. I started riding my bike again just to make it a couple miles to the trail to see the water, then rest and ride home. As the trails became a little less crowded and I felt safe to, I even started to take my racing wheelchair out for a 5K when I could.

That all worked and my stubborn came out... I set a goal to do something each day, then at least 30 minutes each day, and I'm currently gunning for 45 minutes and more specific goals. I'm walking with a cane and a leg brace now and just made it to 2 miles. I accidentally rode over 10 miles for a fun Halloween neighborhood trail of six stops with spooky stories... by accidentally, I mean I didn't know how far it would take me, but I figured I'd be close enough to my house to ride home and switch to my car if I needed to; I just had one more stop when I did stop at home for a quick recharge and decided to go for it. And I've been out with my racing wheelchair more in the last eight months than I have in the last few years; I haven't gotten much faster or gone much farther, but I'm getting out there and that's more than I can say I used to do.

At this point, I find I'm less afraid to try things or to make plans. I'm more confident about walking and staying upright; I still walk like a drunk pirate, but I'm used to it. I also surprise everyone at rowing by standing up on the dock by myself, or pushing my wheelchair for a few steps.. my foot drop is unfortunately becoming more pronounced with the walking though (my AFO brace is on the shoes I don't wear to rowing). It really says something about my progress that even though my balance or my leg haven't improved, my endurance and fatigue have vastly improved, and with them my mindset has changed. I can do this.

Rowing Wins!

I recently celebrated three years of rowing. This is significant because all the other sports that have been my main focus only lasted two years or less for various reasons. This is also the first time I've had a coach; I've had mentors in other sports (wheelchair racing, paratriathlon, archery) or I've had coaches in sports that were not my focus (sitting volleyball, wheelchair basketball, wheelchair lacrosse). But really, for five years, I was essentially coaching myself and making it up as I went along... now I get to consult while someone else makes it up as we go along.

I know that seems like a lot of sports (I've tried even more!) and I can't say I'm great at any of them, but after years of being told I couldn't do things because of a messed up knee, I've been determined to try anything someone wanted to teach me. I've always been athletic, so missing out on that for many years took a toll I didn't really realize until I rebelled against being told to essentially sit out on everything. Lucky for me, my defining characteristic as an athlete is that I'm extremely coachable and willing to keep trying. I make coaches tear up a little whenever they catch me doing drills without being told.

My rowing coach found me as I was still trying to recover from an appendectomy a year before, struggling to sit up on my own, just starting to lose feeling in my hand, and had no endurance. Three years later, while I my hand is much worse, I'm stronger overall than I have been in a long time and I've been able to improve my endurance dramatically, especially through this long quarantine. And I loved my years as a trail runner exploring all kinds of trails, but I feel the most at home on the water or even being near water.. I always have. A couple years ago, after being told I was a natural in a few different paddle sports, I wondered why I had waited so long to try any of them!

Most importantly, I feel like rowing is the first sport I really chose. Or maybe it chose me. I did wheelchair racing because the running world was familiar, paratriathlon because I think I had something to prove, and archery was the only sport I could manage at that time. Don't get me wrong, I love all those sports and they're all still part of what I do, as cross training or just some fun. Rowing just holds a special place in my heart... and I'm pretty sure it's stuck with me now ;)

Support Your Friends

 I'm going to step out of my medical sphere for a minute and talk about a different kind of support... when I lost my last job, I just didn't feel healthy enough to get another part-time job, so I took a couple coaching/outreach positions and decided to focus more on my design and art. The two positions are currently not in play for different reasons, so my only income for last few months has been through graphic design, Etsy, and other various selling platforms I'm on. And quite honestly, I'm not doing well.

Don't get me wrong, I'm selling and becoming more known through my sales, social media, and Pinterest, just not enough to comfortably make it through another month.. and everything I saved while I had those other jobs is quickly going away. So I'm currently learning more about Pinterest to boost attention, but I also need your help.

By help, I mean pretty much anything helps! Comment on this post, even if it's just an emoji; likes are great, but comments get the post seen by more people. Comment on my posts on my Team Tsunami page to get that seen more as well. Re-pin my products on Pinterest, find me on Instagram. If you've purchased something from me, leave a review... if you can't leave a review, post a photo and tag me, I will happily repost! Tag someone you think will like what I do. And definitely go shopping!

And while I'm here, here's information on my various platforms:

Etsy: I make the string doll keychains, trial map necklaces, and decals; the stickers have been made from my artwork; I hand paint the hats and can use pretty much any of my decal designs for them; and the clothing (mostly leggings and neck gaiters) are my designs, but made by another company... the leggings are seriously my favorite, SO soft and comfortable (I do have full length and plus size options, just let me know!)

Spreadshirt (shirt shop in the shopping link): I've had this shop for a while, the shirts and printing are great quality.. pretty much all of my shirts have come from this site. And again, I do have more shirt/hoodie options I can look through if you're looking for something specific. 

Redbubble: my new favorite! They place my artwork on SO many things! And the prices are good and I've heard good things about the various products from friends who have ordered.. hoodies, stickers, pouches, phone cases, shirts (for women's sizes, make sure you look at the sizing charts, they do seem small; I've only ordered mens). I'm currently obsessed with the shower curtains, pillows, and giant scarf ;)

Spoonflower (fabric shop in the shopping link): unfortunately expensive, but it comes fast. My mom has made some awesome things from the cotton and the denim (my wheelchair cover!), and a friend just made me an awesome skirt from the swim fabric. At the moment, I just have adaptive and rowing patterns on there, but if you want one of my designs on fabric, let me know!

THANK YOU!!

Here's my link to all my shops and Pinterest; https://linktr.ee/TeamTsunami

Vicious Circle

 I have always had a sensitive stomach. My stress knows exactly where to go to make things even more miserable for me. Or in a kind of evil way, force me to finally just stop.

Back in college, it hit me hard. I had been thrown head first into full time college and part time job with no car. Between the stomach problems and suddenly so much activity, I lost 40 pounds in 3 months. I spent years bouncing from doctor to doctor, still just classified as upper right abdominal pain and handed pills for whatever theory that particular doctor had (the weight loss, acid reflux, my periods... always targeting only one thing instead of looking at the whole picture). Most memorably, my primary doctor at the time told me it was great since my BMI was almost "normal".... I looked him in the eye and pointed out that you could see my ribs through my shirt.

One doctor finally labeled my stomach problems IBS and released me into the world. I never put much credence in that, but it helped enough to get me eating again. In the next few years, I increased my exercise and eventually stumbled onto discovering my food allergies. Those two things helped me more than anything else.

Two years ago, I was diagnosed with POTS and talking to others in a dysautonomia group finally cleared up most of the questions about my stomach; it's one of those automatic bodily functions that just don't work right. Likely, my vagus nerve is damaged and the signals are messed up.

A friend was worried I might not be able to celebrate my favorite holiday properly, so I sent her a photo of my "sick pirate" costume.

Fast forward to last year when I ended up in the hospital with liver enzymes off the charts; they eventually went down on their own, and I never found out the cause.. my doctor refused to send me to GI against my protests. To say I've felt like I'm just waiting for it to happen again is an understatement. I thought that time came this week. I've had much more minor attacks over the year, but I do okay with upping my water and electrolytes. This week, it turned into abdominal pain, nausea, and lack of appetite. A barrage of tests at the hospital showed I'm fine. So instead of one mystery problem coming back, an older mystery problem may be coming back. And I've already lost 4 pounds this week.

It's fun to go into the hospital with abdominal pain right now.. yes, my Covid test was negative

And this whole thing is a vicious circle... I don't want to eat because it hurts and I don't want to exercise because it'll probably cause more weight loss (plus low energy), but exercise is what may help me eat a little easier. Nothing is a guarantee though, so I keep playing the game.

This was me right out of college; I had graduated high school at just over 200lbs, at this point I was just under 150lbs... but since I had lost weight so fast, I had very little muscle and absolutely no energy. No matter what clothes I wore, they just hung on me. I had people jealous at how easily I'd lost weight, they didn't care that it was because I had been so sick since they thought the same as my doctor, being skinny was more important.

Rough Week

I had rough week. It all started with a disappointing day... suddenly, things that should have been easy to take, to do, to finish became too hard. Those little disappointments that are usually easy to brush off and/or replan just piled up all at once. Why? I'd just had another doctor tell me another promising diagnosis was wrong and that little gravedigger in my head had already started working on the hole.

I met my new pain management doctor on Tuesday and after many questions and a long examination, he said I do not have CRPS. Which isn't exactly disappointing, but I was just starting to accept it. He proclaimed me a bit too complicated in general, but also explained that I was not presenting properly for CRPS. He didn't completely knock me back to the start; he did say it's likely nerve pain caused by an overreaction from my body, so technically still under the same umbrella. We were both also overjoyed to begin with supplements rather than prescriptions.... although in the back of my head, I am willing at least one to work because our next step is likely nerve blocks since I've had adverse side effects to nerve pain meds in the past.

One thing I couldn't figure out this week is why it hit me so hard this time and I figured it out while I was not sleeping last night. I've been going to a lot of appointments so far this year and I think it's been piling up. My primary has been disappointing me for the last six months, but my allergist has made progress (found out I'm allergic to the world, we're working on meds, aaaand she's working on my breathing problems.. so far, new inhaler works and breathing exercises for vocal cord dysfunction is helping!), and I met my new neurologist (he's a lovely man and I feel like he wants to help, but he didn't really come up with any new ideas at my appointment), plus I dislocated my hip again last week (not nearly as bad this time, it went right back in and my chiropractor got a hold of it pretty fast afterwards). Just one more backward step was too much to handle this time.

So that's why I haven't been talking all week.. it was a medically induced tantrum. Thank you to everyone that has been patient with me not wanting to talk, sent virtual hugs, or simply acknowledged that I was having a rough week.

This next part is simply educational. Read on if you'd like to learn more about depression from my point of view.

I battle depression every day. If you break it down to numbers, I win most days.... but when I don't win, it's hard to get that momentum back. It's hard because depression can make you feel lonely even when you're surrounded. It can make you feel unseen, which hurts even when you want nothing more than to be invisible. It makes you feel misunderstood because you can never fully understand, even if you've been through it. Most of all, it makes you feel unlovable. And that one is complicated because depression is going to put the blame on you for even the smallest things that happen, makes you wonder why anyone could care about you, convinces you that you're a burden and that's why you're sitting alone in a dark room. And it becomes a vicious circle.

So what can you do to help? Go back up to my thank you list. Everyone that has offered support this week has helped; even a like or heart on my posts made me smile, the comments cheering me on when I went outside, the texts and calls to check on me, the virtual hugs, those that were simply sorry that I had a rough day, and those that reminded me to do something just for me each day. You probably all made me cry a bit more, but you also made me smile, giving me the weapons to continue the battle.. and soon, I should have the high ground again!