State #37

“Back in 2014 I made a New Year’s resolution to visit as many new states as possible. By the end of that year the number of states I had personally visited rose from 27 to 33, thanks to an East Coast road trip and a Yellowstone National Park vacation. 6 new states in one year wasn’t too bad. Then in 2015 I added another two states to the list (New Jersey and Alaska). But since then my travel has stagnated somewhat. However, I am happy to announce that in 2018 I have finally added state #36 – Oregon! It’s hard to believe I’d never been there before considering how long I’ve been living on the West Coast.”
09/10/18 webpage post

I went more than a year without setting foot in a new state. What a disappointment! In early 2019 I realized that I didn’t have any trips planned to unvisited states, so I checked the University of Florida football schedule to see if there were any away games that would fit the bill. My first idea was to go to the Mizzou game in Columbia, MO on 11/16, but I already had plans that weekend. My second choice was the South Carolina game on 10/19, which fit perfectly in my schedule.

I flew into Columbia, SC a couple of days ahead of time (it’s funny that both games I considered attending took place in cities named Columbia) and my parents drove up from Florida to meet me. The Friday before the football game we took advantage of the beautiful weather and visited Congaree National Park. We also walked along the river a bit and had an incredible BBQ meal, complete with banana pudding for dessert. You can’t visit South Carolina without sampling their BBQ. On Saturday morning we spent some time walking around the lovely state capitol complex (except for the many disconcerting Confederate monuments), which was close to our hotel, but then the weather took an unfortunate turn. Tropical Storm Nestor barreled onto the scene around midday and it started raining cats and dogs. My parents and I had really great seats for the football game, but we would have to brave the cold, wet weather in order to use them. And football games aren’t short either. We weighed our options all morning, and eventually decided that we would be much happier watching from the warmth and comfort of our hotel room rather than getting soaked at the stadium. Luckily Florida still won. Go Gators!

On Sunday morning we visited the Riverbanks Zoo before I had to go to the airport. It’s a fantastic zoo and we all really enjoyed it. Lots of interesting animals. We saw a mama gorilla with a baby on her back, got pretty close to some giraffes as they were feeding, and watched a penguin perform the same trick over and over to amuse his fans. Plus, I took some really silly pictures with a llama for Instagram. We would have liked to stay longer, but I had a flight back to California to catch. I wasn’t at all disappointed that we missed seeing the football game in person on Saturday because that wasn’t the only reason for this trip. Not only did I get to fill in South Carolina on my states visited map (see above), but I also got to see my parents for the first time since Christmas. Plus, SC is really beautiful. I want to go back sometime and see more.

Looking my age?

On Thursday I turned 41, but it wasn’t exactly an exciting day. I went back to work on January 2nd after more than five months on medical leave. It was a Thursday, and the office was incredibly quiet since most folks made the smart decision to stay home on the first two workdays of 2020. I’m only working part-time for a while in order to ease myself back into employment, so I spent roughly 4 hours on both Thursday and Friday sorting through thousands of unread emails that had accumulated in my inbox while I was gone. It was pretty draining, but I’m glad to be back in the office and using my brain for something other than arguing with jerks on the internet. (That’s a story for another time!) Unfortunately over the weekend I caught a terrible cold. I felt so terrible that I had to take the first three days of the next week off to recover. Not exactly the way I expected my return to work was going to go! I also missed my boot camp classes those three days due to the illness. Thursday January 9th was my birthday and I was finally able to drag myself not only to work, but also to the gym. (I originally planned to celebrate at Disneyland, but I missed way too much work to be out yet another day that week.) Traditionally all of the gym goers have to do as many burpees as the age of the birthday boy or girl, but I was absolutely not going to force the folks who came for a regular workout to do 41 burpees on top of the cardio class they had already completed. Fortunately the trainer was merciful and we only did 21 burpees instead. Still tough at the end of class, but we all did it. When the ladies at the gym found out that I’m 41 they were shocked. I’ve always looked young for my age, but bow that I’m no longer as slim as I used to be I figured that effect had diminished. It was flattering when the ladies asked me what I do to stay youthful. Besides my obsession with sunscreen and an embarrassingly extensive skincare routine, I have no idea. Moisturizers and serums can’t be the full explanation. Obviously there is an element of luck (i.e., good genes) at play. Still, it’s nice to know that I don’t look my age just yet.

This reminds me of a funny story. Back in March I went to see a hematologist because I’m a carrier of a blood disorder called beta thalassemia, and I wanted to make sure this wasn’t contributing to my fatigue. For reference, the Mayo Clinic website states, “Thalassemia is caused by mutations in the DNA of cells that make hemoglobin — the substance in red blood cells that carries oxygen throughout your body.” Additionally, “In thalassemia, the production of either the alpha or beta chains are reduced, resulting in either alpha-thalassemia or beta-thalassemia.” Boring, I know, but better than any explanation I could formulate on my own. Fortunately for me I only have the trait, or minor, version of this disorder so it doesn’t affect my daily life. When the hematologist walked into the examination room for my appointment she was visibly surprised. She said something to the tune of, “You don’t look anything like what I imagined! I was expecting dark hair and olive skin!” This made me laugh because my appearance is decidedly northern European in nature. To let you in on the joke, according to the Mayo Clinic, “Thalassemia occurs most often in African Americans and in people of Mediterranean and Southeast Asian descent.” So this is obviously something that a blonde-haired, blue-eyed Irish girl needs to worry about, right? It was funny to surprise a doctor for a change! I inherited beta thalassemia came from my mother’s side of the family, but besides that we have absolutely no idea where the it came from. Even her 23andMe results don’t shed much light on the origin. We were fully expecting Italian, Greek, or Spanish ancestry somewhere in her report, but that’s not what showed up. It’s a mystery! Fortunately the hematologist assured me that because I’m only a carrier that this blood disorder isn’t causing my fatigue. That was one diagnostic avenue that lead to a dead end, but not an unexpected one. It allowed me to focus on other options instead. I’ll get to the bottom of this eventually.

Catching up on my health

“I know that in the grand scheme of things my medical problems are not nearly as devastating as other have to deal with, and for that I am grateful. That doesn’t mean I’m not worried about the future, though. What if this is a symptom of a more serious affliction? This is another bridge to cross later, if needed.”
08/04/18 webpage post

Written in August 2019
Last August I was a lot more optimistic about my medical problems than I am now. Honestly, I’m glad I didn’t know back then that I’d be having just as much, if not more, difficulties a year later. So far I’ve been out of work for almost three weeks and trying to make the most of this time. The upside is that my stress level is significantly lower than when I was working, but I am still just as tired as I was before. That makes getting anything done quite difficult, especially when I’m trying to make progress on my long list of “must do” activities during this leave of absence. I really hate that my body isn’t allowing be to be more productive with this free time. My best friend recommended finding three things that I can accomplish each day to keep my spirits up. Apparently this is something that folks who are suffering from chronic illnesses are counseled to do so that the days don’t bleed into one another with nothing getting done. So I’ve been maintaining my daily to-do lists and trying to cross off at least three items each day, no mater how small. It certainly makes me feel like less of a useless sack of skin.

January 2020 addition
My leave of absence from work turned out to be five months long. During that time I had good days where I was able to function more or less like a normal human being, but those were greatly outnumbered by the bad days where I was lucky to change out of my pajamas. Sometimes being upright for any period of time is just too much for my body. And forget leaving the house! Fortunately I did make some progress on my diagnosis during that timeframe. After exhausting the usefulness of my original neurologist, I found a good rheumatologist back in November. The first round of blood work that he ordered returned a positive result on the Antinuclear Antibody (ANA) Test, which means that something is amiss. This prompted a second round of blood work right after Thanksgiving. (Slight digression, but I had a miserable experience that time around. Two different phlebotomists had to stick me five times, and tap both arms in order to get enough blood or the order. The insides of my elbows looked like they had gotten repeatedly punched.) When I went back to the doctor in mid-December to review the new numbers there was more data, but no clear conclusion. As well as the ANA, I have a positive rheumatoid factor, which is another indication of an autoimmune disease. The kicker is that none of this is enough to assign a specific name to my health problems. It’s pretty obvious that I don’t have rheumatoid arthritis (RA), at least not at this point in my life, and I also don’t have full-blown lupus. A truly positive discovery on both counts, but it leaves me in a sort of limbo. The rheumatologist used the phrase undifferentiated connective tissue disease (UCTD) – in my case, an affliction with markers for both lupus and rheumatoid arthritis, but falling somewhere in between the two. It’s frustrating to still have so many unanswered questions, but it’s also a relief to feel like my medical team is making progress. As a first measure, I started taking a lupus medication that may or may not alleviate my symptoms. I won’t know for sure for about six months, though. Still, it’s something.

The bottom line is that I am battling at least two different chronic conditions simultaneously (PLMD and UCTD), and I probably will be for the rest of my life. Nothing is ever going to be the same again. I know that pretty grim, but I don’t see it that way. It just means that I have to adjust my expectations going forward. When my energy is low I have to budget it for important things like work and exercise. Little things are going to fall by the wayside, and I have to be ok with that. I’ll survive, and I might even start having fun again.

Just a silly story from the end of 2019

Written on 1/1/20
Happy New Year, everyone! I’m sitting at my dining room table wrapped in a blanket (my thermostat is currently inoperable so no central heat) trying to figure out what to do on this first day of January. New Year’s Day 2020 looks a lot different when compared to previous iterations. First of all, it’s 10:30 AM and I’m still in my pajamas. My usual January 1st tradition is to go to Disneyland in the early morning, before the large crowds arrive, but due to my myriad of health issues that is not something that I can count on being able to do. I went to bed at 10 PM last night because I wanted to give myself the best chance of fulfilling my tradition, but when I woke up at 6:30 AM today my body told me it wasn’t going to happen. I have gotten much better at listening to my body when it tells me I don’t have the energy for a particular activity, so I wasn’t going to push myself. Hence why I’m still in my pajamas!

So my energy level was so low on January 1st that I never even finished this post! Having chronic illnesses means that nonessential activities often fall by the wayside. I really hate it, but sometimes I’m forced to operate in survival mode where rest trumps everything. That was basically the entirety of my New Year’s Day. However, one of my goals for 2020 is to blog regularly. (In order to avoid undue stress I’m not going to explicitly define what “regularly” means. At least not yet.) Making New Year’s resolutions have never worked out well for me so I’m not going to write a traditional list or anything. I just have a few goals for the year that I want to work on. So for my first post of 2020 here is a little story from the end of 2019!

I took my large suitcase to Tallahassee for Christmas because I was going to be there for a full week, and December weather in Florida weather can be extremely variable. I needed clothes for warm weather, plus coats of different weights in case winter decided to show up for any period of time. This suitcase was a Christmas gift from my ex-husband back in 2008 (see the first photo above) when we were traveling to New Zealand for the holidays. An amazing present. It was a really nice (and expensive) suitcase, but back then luggage didn’t have the multi-directional spinner wheels like they do now. A suitcase only had two wheels so you could tilt it by the handle and drag it behind you through the airport. Not ideal these days, but still perfectly functional, even at 11 years-old. Except for the antiquated wheel technology this suitcase is perfect. First of all, it’s bright green (i.e., easily identifiable on any baggage claim carousel). Also, it’s big enough to hold a lot, but not so big that I have to worry about it being over any airline’s checked baggage weight limit. I had absolutely no complaints about this piece of luggage…until December 29th. On my way home from the holidays I flew from Tallahassee to Orange County with a layover in Dallas. I was tired when my flight arrived at the John Wayne airport that evening so as soon as my suitcase appeared in baggage claim I was happy to grab it and start my journey back home. As I began the long walk to the parking structure I wondered why my bag felt so sluggish. Maybe the wheels didn’t function well on the airport carpet? I wasn’t sure. But when I got outside onto the concrete I knew something was amiss. Upon further inspection one of the two wheels on my trusty green suitcase was gone (see the second photo above). So sad! (And so much harder to drag to my car with only one wheel!) He had flown his last flight. Farewell to my trusty traveling companion of 11 years! You will be missed!

Major NaBloPoMo fail!

Who has two thumbs and wasn’t even able to keep up with NaBloPoMo for a full week? This gal! The writing was already on the wall by day 3 when I first mentioned my exhaustion, and it only got worse after that. I’m not sure what precisely prevented me from publishing anything on day 6, but I’m sure it had something to do with being tired. Big surprise, I know! I looked back at my day planner to see if I could figure it out, but there were no entries for November 6th or 7th. That general means that I slept an excessive number of hours those two days. Unexplained fatigue is no joke, folks! I guarantee that blogging wasn’t the only thing that was neglected in that time period. When I started the month I was afraid that my health would jeopardize this blogging challenge, but I wanted to attempt it anyway. If nothing else, I got five posts out of my abbreviated NaBloPoMo that I probably wouldn’t have written otherwise. In spite of my medical issues I do still have things going on in my life that I want to document. Like my insane Thanksgiving yesterday. Stay tuned for that post, hopefully this weekend.

Things women deal with (NaBloPoMo day 5)

Tonight I’m once again so exhausted that I don’t know how I’m going to write my daily post. It’s nearly 9 PM, I’ve been working on a few different posts for hours, and still I have nothing ready to publish. My brain is pretty much fried. I had an unusually busy morning and my energy level never recovered after I got home at 2 PM. I thought I would have plenty of time to rest and recuperate before heading to the gym at 8 PM, but the downtime didn’t have the desired effect. I’ll get back to boot camp tomorrow night. Funny enough, sitting here typing on my laptop seems just as difficult as the weight training I missed. I don’t want to rehash my post from two days ago, but I do want to be transparent about how much more challenging NaBloPoMo is for me now than it has been in years past. I’m still going to see if I can complete it!

In order to make this post slightly more interesting I’ll tell you about an incident that happened to me last night. I was in my car on my way from boot camp to the grocery store because I had a craving for cereal. Not the best thing to eat after a workout, but probably not the worst either. I was waiting at a red light in one of two left turn lanes and digging around for something in my purse. Out of the corner of my eye I saw the car in the other left turn lane inching forward so that their passenger side window was aligned with my driver side window. I had a gut feeling that whoever was in the car was being a weirdo so I deliberately didn’t look in the other car’s direction. I wanted no part in any shenanigans. Under normal circumstances both cars would have gone on their way without any interaction when the light turned green, but unfortunately for the state of our society these days that’s not how this story ends. Suddenly the person in the car next to me honked their horn. I finally glanced in that direction to see what the ruckus was all about, and I saw a male driver smiling broadly at me. He leaned as far as he could towards my driver’s side window and shouted, “Smile!” He also pointed at the corners of his lips, which were still upturned in a Joker-like grin, in case I wasn’t familiar with the facial expression he was demanding from me. Yes, you read that right. Some man decided to use his car horn (generally employed to indicate automotive distress) to inform a random woman in a separate car that she needed to look happy for his benefit. In what universe is that acceptable? And yet, this is a situation that women face on a daily basis. It’s absolutely ridiculous. In that moment, tired and sweaty, I had never been less inclined to comply with a man’s request. All this dude got was an exasperated eye roll and my middle finger extended in his direction before the light turned green and our brief encounter was over. I wish I could have given him a piece of my mind along with flipping the bird, but I didn’t get the opportunity. So if you’re of the male persuasion and happen to be reading this post, please think about how you interact with women to make sure you fall into the same category as this jerk!

Dino Dash 5K (NaBloPoMo day 4)

Yesterday morning I desperately wanted to ignore my alarm when it went off at 5 AM, even though I had taken full advantage of the extra hour of sleep afforded us by the end of Daylight Savings Time. I even went to bed relatively early on Saturday night because I had the Dino Dash 5K Sunday morning in Irvine. It’s a much larger race than the School Ghoul 5K last weekend so I had to factor in about 25 minutes of drive time and some parking difficulties when I arrived. After turning off my alarm I seriously debated going back to sleep, but I registered for this race for a reason. I know that I need motivation if I want to run more. With my low energy levels there’s no way I’m going to lace up my running shoes on a random weeknight, so races are necessary to get my rear in gear. Plus, my endurance is in the tank these days so running even a few miles is painful. A race at least offers the accomplishment of crossing the finish line, and usually a medal too. I need these proverbial carrots to get me moving in the right direction (rather than back to the fridge for a some leftover pizza). It’s demoralizing to look back and remember how much easier running used to be for me, but the only way I’m going to get better is if I put in these painful miles first. So I reluctantly turned on my bedside lamp at 5 AM, threw off my covers, and started getting ready for the Dino Dash 5K.

The race itself was really fun. I didn’t appreciate the uphill portions of the freeway overpasses, but their downhill counterparts were great. My finish time for the 5K wasn’t anything near what I would call impressive – maybe not even respectable – but I ran 3.1 miles more than I would have otherwise. It wasn’t easy, but it wasn’t miserable either. Progress! I hope that this is the beginning of my journey back to half marathons, and perhaps marathons (Disney World 2021), because I sincerely miss them. Not only do I love challenging myself, but there’s also the social aspect of running with friends and strangers who are meeting the same challenge. The medals are great too! I know that getting back into this hobby/habit will be extremely beneficial to my body as well. I’m not in terrible shape thanks to my gym membership, but my cardiovascular health could definitely use some improvement. (And don’t even get my started on other aspects of my body that are less than optimal right now.) I’m headed to boot camp tonight at 8 PM so that will help not only boost my physical well-bring, but also my mental well-being. That’s the number one reason I need to run more often. I have more races in a couple of weeks and I really need to break in a new pair of running shoes by then. I’d better get started!

First challenge (NaBloPoMo day 3)

It’s only the 3rd day of November I’ve already hit my first hurdle of this blogging challenge. It’s only 5:30 PM so I theoretically have plenty of time to write and publish a post before I go to bed, but I’m completely exhausted. And I’m not just talking about a little sleepiness. I feel like I have a weight inside my head that’s pressing down on my brain. That’s the best way I can describe my fatigue. This weight makes my eyelids heavy and my thoughts sluggish. If not for my stupid restless legs I could very easily lie down and pass out at a moment’s notice. (Trust me, I tried to nap this afternoon since I had been awake since 5 AM, but my legs were not having it. I’m running on many, many ounces of Coke Zero right now.) None of this is exactly conducive to producing blog posts that I’m inclined to publish. In fact, it’s taken me multiple hours to finalize even this single paragraph. I’m just so weary. But for now I will attempt to soldier on. Maybe tomorrow will provide more suitable circumstances for writing something of substance!

Halloween 2019 (NaBloPoMo day 2)

I had a busy Halloween considering how low my energy levels are these days. The only thing I’ve been able to do consistently while on medical leave from work is exercise. I have managed to attend boot camp classes three to five times a week for the last few months and it really makes me happy. (My runs have been few and far between, however, but I’ll write about that in another post.) I still have a long way to go in my fitness journey, but I definitely feel stronger after three months of weight training, even if my dress size hasn’t gotten any smaller. Although I don’t like the number on the scale right now I am trying to have a positive attitude towards my body in its current form. It’s not easy! Getting back to the story, I was determined to get to the gym on Halloween, but I had to go at 9 AM since my usual evening class was cancelled for the holiday. As you can see in the above photo, my gym buddy and I had matching floral skeleton outfits from INKnBURN. She even brought flower crowns so that we could enhance the effect. Halloween is one of my favorite holidays so celebrating it this way was really fun. The workout itself was pretty difficult, but at least I started the day by doing something healthy.

I had plans to meet my BFF and goddaughter for trick-or-treating at 5 PM. After an egg sandwich for breakfast and a post-gym shower I attempted to take a little nap to replenish my energy stores, but my stupid restless legs had other ideas. I may have dozed for half an hour or so, but my twitchy legs did not allow any more than that. (I know it’s my brain causing the muscle spasms, but sometimes I daydream about a leg transplant that will fix my PLMD.) I knew that the long drive to/from my BFF’s house, as well as several hours of Halloween celebration, were going to be hard on me, so I took half a dose of my stimulant medication to ensure that I wasn’t dead tired before even arriving. (I use the stimulant very sparingly to get me through events that demand a lot of energy, but it’s a band-aid rather than a long-term solution to my constant fatigue.) Trick-or-treating with my goddaughter’s Girl Scout troop was a lot of fun. Safely guiding about ten girls from house to house to gather their candy while trying to avoid anyone getting left behind was quite the balancing act. I’m really glad I got to share the holiday with my goddaughter, though. It was the most human interaction I’ve had in months (unless you count Disneyland), but it was very draining. By the time I got home I was fading fast. My nighttime medication generally requires about two hours to take effect, but I somehow managed to pass out in about half that time. You know I’m exhausted when even leg spasms can’t keep me awake! The next morning my gym buddy and I were planing to go to the 9 AM boot camp class again, but neither of us was up for it when our alarms went off. I ended up sleeping very late to recuperate from all of the Halloween festivities. Still a fantastic holiday!

Happy November!

Ah, good ol’ November 1st. Historically the day I kickoff my contribution to (the now defunct) National Blog Posting Month. November is traditionally National Novel Writing Month (NaNoWriMo), and the weblog community started their own version in 2006 (NaBloPoMo) where bloggers endeavor to post new content to their sites every day of the month. I accepted the challenge several times during my more prolific blogging days – some years being more successful than others – but extenuating circumstances have kept me from flexing my writing muscle too much recently. Of all my hobbies that have fallen by the wayside since my health began to decline I miss running the most, but writing is a close second. I love the creative outlet blogging provides, but it demands energy that my mind and body don’t always have to spare. Like I’ve said before, fatigue affects every area of my life, and writing is no different. Also, no one has ever said there are too many hours in the day, so finding time to consciously devote to blogging (rather than aimlessly browsing the interwebz) isn’t easy. I have been reading a few books lately that I hope will help me get back in the habit of writing everyday, but I haven’t put any of the ideas into practice yet. No promises, but I’m going to try to use NaBloPoMo to kick-start my blogging habit again. We’ll see if it works.

P.S. November 1st is also the Day of the Dead – better known as the day after Halloween when kids are sleep deprived because they stayed up way past their bedtime trick-or-treating. I figured on this 11/1 post it was appropriate to include a photo of me with my BFF and her daughter from last night. Aren’t we adorable?