Preface: For my upcoming blog post "celebrating'" six years since I was diagnosed, I am thinking of doing a Q&A to raise awareness for chronic illnesses, provide hope, wisdom, comfort and insight, among hopefully other things! If you have questions you would be interested in me answering, not only about being sick, but life in general, comment below/text me/message me/reach me by carrier pigeon. My girl Sydney has recently encouraged me in the power that she believes my ordinary "day to day life" may have on others, the strength of a social media presence and the influence of my words-I am excited to see how God moves in this way!
At dinner a few weeks ago, my mentor/friend/role model Cayla told me she really believed I should write more. Of course she said it more eloquently and with her voice that literally exudes joy and the conversation was filled with many more encouragements because she's an actual angel (you're getting a good one on October 26th, Grant!) but that was the piece of wisdom that continued to strike me the most in the days following. I began to wonder to myself, why is it that I don't write more? I think one aspect is obviously the mental effort it requires. If you haven't ever read about the spoon theory, please do so and become my new favorite person. Seriously, it will explain for you so many aspects of my life I feel and will perhaps explain to you why I can study for a half hour but talk to a friend for two hours, or why I have over 220 unread text messages, or why certain people require more energy from me than others. It's really not that long of a read, I promise!
Another reason I don't write as much as I should (despite multiple doctors and therapists telling me I should, sorry y'all), is because as you see in my blog posts, I always feel like I have so much to say that these go on forever. That's a lot of time that I don't often allot or allow myself. Lastly, and most personally, I think it's because I seek to be authentic and each time I write it's as if I'm revealing a part of my soul to the world. When I first began blogging, I often would not post something unless I could put a positive spin on it or have something good to say. Well, spoiler alert, it's not all sunshine and rainbows and Go Jesus, especially when you have multiple, severe, crippling chronic illnesses with no cure and depression and anxiety as the cherry on top. In addition, as I go on in life and get to know myself better, I feel that there are deeper and darker parts of my heart that become exposed, thoughts that I don't always like or am not always proud of, some of which are included in this post. However, with that, I've learned that I can't ask for the help or encouragement or wisdom I need if I withhold key thoughts and occurring that are going on in my life and head from the people that matter most to me. No one can help you or pray for you if they don't know how, or if you're not completely honest about the demons you're struggling with.
As for the demons I am fighting now, going back to Baylor with post mono on top of all of my chronic illnesses really is A LOT and I'm struggling with depression and the tough conversations I'm having with the Lord. However, currently, I am happy to be home for Spring Break just resting and spending time with my family-although they haven't really been home much as they all have plans with other people and are way cooler than me. I am missing my Baylor friends and other friends (I think we're actually the only school with Spring Break this week) and wish I was doing fun things with them, it's hard to be super excited about laying in bed when you have friends literally all over the world currently having the time of their lives-Cabo, Colorado, Europe, California, on cruises, you name it. (However, my dad gave me a little gut check when he said "Well I would love to be on a cruise to Hawaii with your mom right now but I can't because I have to work to pay for your medical bills". I responded with, "Well, you know all my medical bills are stemming from Elhers-Danhlos Syndrome, which is genetic, so essentially, you and mom's genes are responsible for all my health misfortune, pain, suffering and medical bills, right?" He didn't like that, and all jokes aside, even if my parents have genes that gave me EDS, they are the two most amazing and humble people to walk this planet and I love them more than anyone-except maybe my dog-and I am convinced they are real life superheroes and Jesus with skin on.) I am trying to be present and thankful for this time, especially the few moments I get to share with my dear brother Christopher, who is a high school senior and will be off to college in the fall, likely somewhere very far away and who knows when he will come home, if ever! (For those of you wondering, he has applied to 14 schools and has been accepted to 7, he will hear from the other half on April 1st, before making visits in April and deciding before May 1st. Sadly, Baylor is 14 out of 14 on his list and he only applied because it was free and to shut me up. I know he will be outstanding and shine bright wherever he ends up and I can't wait to see him change the world! Proud to not only be his big sister but his friend, not excited for all the crap he's going to give me for posting mushy emotional feelings about him on the Internet.)
Ever since I got mono, things have been a huge struggle with my health and that's greatly overflowed into my mental and emotional health. I just feel completely empty and worthless and empty, as even more so I feel unable to fulfill the purpose for my life that i feel that the Lord has so clearly called and prepared for me. This has turned to me having a lot of tough conversations with God, He tells us that He's doing a new thing, but I am struggling to see the benefit in my situation lately. I don't feel like He's using me to my full capacity and potential. I've been working on giving myself grace and praying for peace. Sometimes with autonomic dysfunction, people will experience another "trauma", leading them to set back even further. My big fear currently is that this could be my new normal and that's not something I'm okay with, because this isn't living. I have such greater hopes, aspirations and dreams for my life than this.
Jesus & I have been in a tussle lately, filled with some hard conversations. The day of my best friend Devon's wedding rehearsal dinner, December 27th, I began not feeling well. I figured it was probably because I had gone nonstop the last few days, with her Bachlorette Scavenger Hunt at the Pearl being the day prior in the midst of the Christmas season and busy with wedding preparation. It was also below 30 degrees, setting record lows-we don't do those kinds of temperatures in South Texas, ya'll! The next day while finishing getting ready for the wedding at the venue, I began to have a sore throat and loose my voice. This was not ideal as not only am I the queen of talking, I and the other bridal party members prayed over Devon before she walked down the aisle and part of my duties were in passing out the programs and welcoming the guests. Dev, thanks for loving me and including even though I sounded like a dying pony mixed with a croaking frog mixed with an elderly man. You're the real MVP and embody everything a best friend should be and more.
I had planned the next day as a recovery day, and then the plan was to go to visit my 93 year old grandparents (my dad's parents) in Dallas, as they have recently gone downhill. (Quick side story: My grandma recently had yet another fall, and so she had to be transported from my grandparent's assisted living home to the hospital. She checked out okay, but when getting out of the wheelchair to get into the car upon leaving the hospital, she gashed her leg pretty well, requiring lots of stitches. Their assisted living home does not have daily nursing care and since my grandma is not in the mental or physical state to take care of her injury, my aunt and uncle moved her to a nursing home. The problem being, there was not a spot at the assisted living side of the new facility for my grandpa. Thus, they are separated for the first time in their 65+ years of marriage and are both very sad. It's hard to watch and I can't even imagine what it's like to live like them. Prayers that they feel comforted and loved would be wonderful.) I felt absolutely terrible the next day, but everyone involved was pretty exhausted (in the best way of course!) so I wasn't surprised in one bit that I was too. However, the next day I only seemed to go downhill further. My mom and I made the decision that I should not go to Dallas, rather just my dad and brothers and perhaps we would join them in a day or two. I was so sad not to go visit, but honestly felt so awful I just went back to sleep. New Year's Day came around and I still felt beyond tired, was without a voice and my body hurt like crazy. I had already had the flu twice in the last year as well as getting my flu shot, but my mom figured it was best to go to Urgent Care just to check things out, since I was pretty positive it was something beyond my normal chronic illness crap, and especially since I was due to go back to Waco the next day for sorority recruitment! (Baylor has deferred rush meaning girls go through recruitment after their first semester.)
The doctor came in with the test results and guess what? Mono. (Holy moly thank goodness we didn't go visit my 93 year old grandparents without me knowing I had mono! I truly could've killed them! Thanks God!) The first words out of my mouth (well if you call them words I was still without a voice) were, "Are you freaking kidding me?!" I was shocked. And really unhappy. (Also, FYI, I did not get mono from kissing a cute boy, or any boy for that matter, sorry to disappoint) She wrote an excuse letter for the week of rush, as it was clear I wasn't going to be there anytime soon (no worries, the ladies of Baylor Kappa Kappa Gamma killed rush even without me and our new babies of PC 18 are amazing!) and for the first week of school just in case and referred me to an infectious disease doctor, for a second opinion. If only we had known what was in store for us.
I ended up not only missing rush week, but the first three weeks of the semester laying at home in bed in San Antonio. Truth be told, I don't remember a lot of this time, but especially the beginning. I did my best to keep up with my school work, but simply keeping my eyes open was hard. For all the times I had said "I really don't know how I could be even more tired" it was as if God was saying, "You thought! Just watch!". I cannot explain how difficult mono on top of chronic illnesses is. You can't "push through" mono when you have many other health problems, as it causes the others to rebel, creating even more so of a mess. Since my already weak immune system was weakened further, I ended up catching a kidney infection, which I don't ever wish upon any of you. I spent a lot of time angry, truth be told. I truly believe if you have a chronic illness you should be exempt from normal illnesses...mono, strep, flu. etc. I'm sorry, but my poor body is going through enough and my body and I are both fighting hard enough to keep going, we don't need anymore trouble than we already have!
Just as in the last six years, there were a lot of tears. I've told ya'll before when I get tired I get emotional, and well, I was real darn tired so therefore I was real darn emotional. I am not, and never have been, suicidal, but I truly just wanted to sleep forever. Every time I would go to sleep (which was a lot in the first few weeks especially, I'm talking 23 hours a day people, impressive if you think about it), I would pray I would wake up feeling better, and I never did! This is a constant problem for me, never feeling rested, as I've talked about my horrible sleep in the last post, but this was a whole new level of tired, as any of you who have had mono can attest to.
Per our research and by request of the infectious disease Doctor, I began taking over a dozen supplements, but as you may know, there's no cure for mono. The infectious disease doctor said mono runs typically 2-4 weeks. Week two, still sick. Week four, still sick. As we know, my body is slow to heal and always has been, so it's no surprise mono is still rearing it's ugly head. That's extremely frustrating as there seems to be no end in sight, not now, not ever.
At week six of my "extended Winter Break" (double the break I was planning but not under the circumstances you would've ever hoped), my parents & I decided that I should head back to Baylor. The hope was that getting back to a normal routine and being around people in classes, my roommates in my cute house, sorority sisters, etc would help "revive me", as since you can imagine, laying in my twin size bed in my undecorated room in San Antonio only watching TV when I had minimal energy and feeling like I had run a marathon every time I went up and down the staircase had become quite depressing. It wasn't as bad when my three brothers were off from school and my dad took time off work for the holidays, but once they went back to a normal school and work schedule, things became too quiet for me. As I've mentioned, I've always been a social butterfly so life in isolation is hard on my soul.
The plan was to go back and do a very minimal amount, one class a day, and build up from there. Unfortunately, five weeks since I've returned and I'm still at one class a day, sometimes two on Tuesday's. While it has been nice to be back in my house that I adore and simply here my roommates voice's in the kitchen (Quick shout out to Grace & Emilee, I could write a novel on ya'll but I'll leave it at I'm forever grateful the Lord gave me this house and ya'll, you two are the best and a daily example of the Lord's faithfulness and goodness when you trust in His plan and His timing) and do very minimum social activity (I'm talking one thing a week), I didn't bounce back in the way I thought. Mono is still lingering. My dad keeps saying how he's not surprised, we all know mono can have a post viral effect, and of course my body is going to take longer to recover. However, like many things, I think I expected more of myself than I should've. I am so incredibly frustrated! Yet another time in my life when I don't feel at any point I'm living up to the potential the Lord gave me and am not able to execute the purpose He so clearly distinguished for my life.
In just weeks prior, I would spend time eating or down time at my house in between classes talking on the phone with a friend or my parents or perhaps reading or studying for a class. On the first day I made "my return", I realized that wasn't something I could do anymore. That time had to be spent resting, doing mindless activities such as coloring or watching TV (I love TV, any Netflix suggestions would be more than appreciated) or simply just listening to music. Therefore, any time not spent in class or doing homework, was spent doing these mindless activities or sleeping. This has been such a hard concept for me to grasp, as I feel like so much of it's a waste of space and time and opportunity, however I've had to attempt to accept that this is simply what I need to do at this stage to take care of my body.
On a quick positive note, I would like to thank the Winter Olympics for being my best friend for a solid three weeks and to my roommates for allowing me to record a solid 67 episodes of the Olympics on our DVR (don't worry, Emilee wants to watch them too and we still have plenty of DVR space left). If you know anything about me, you know I love sports but I REALLY love the Olympics. If any of you would like to start a fund to send me to the Summer Olympics in Los Angeles in 2024 to fulfill the top item on my bucket list, I would not be opposed one bit and I will bow at your feet and kiss your hands.
A few of you who have followed my journey for a while may remember a blog post in which either my mom or I talked about the death of Christina Tournat. She was an incredible girl full of promise who committed suicide after feeling overwhelmed with POTS in the midst of her college experience. About a week ago, her mom (who went to Trinity with my parents) made a Facebook post in which she included pictures from Christina at homecoming in high school. She mentioned that this was around the time Christina got mono, and her mom mentioned she never bounced back. That scared the daylights out of me. I had never thought of this before, but what is this was my new normal? What if I never bounced back? That thought haunts me because it is something that actually could happen! I've learned through out my life that while social media is mostly a gift because it helps me feel connected and in tune with people I wouldn't have previously, it can wield some hurting powers when I allow negative thoughts to come into my head, or seek to compare my sick life to that of other people's "normal" lives. I have seen this in various Facebook groups or Instagram pages for people with chronic illnesses. I have learned personally to not be apart of these groups because while they can prove helpful and informative, I can't let chronic illnesses saturate every thought of my daily life, when it already affects how I feel 24/7. However, my mom is able to filter information better and on a less personal level than I am and therefore she has learned many informative tips she has passed onto me.
I feel like I am in a fish bowl. Where everything is occurring and I can only tap on the glass to acknowledge it's happening, but I can't join in on the fun, I can simply watching. The "best four years of my life" are going by and they are not what I had planned for, hoped for or dreamed about. I found this phenomenon to be even worse since returning to school post mono. When I was home, at least the fun was 2.5 hours away. Now, there's fun stuff going on literally right in my backyard! It has been such an emotional challenge in attempting to put my health first as I so desperately not only crave but more so NEED social interaction. I need friends and social times to feel alive and full. Ever since my health went down hill six years ago, my social life/making true and loyal friends became quite the challenge. This season has me craving those social friend interactions that leave me laughing and my heart feeling full with moments with people who mean so much to me.
This impending thought of "the best four years of my life are going by and they're not the best four years at all" mixed with feeling worthless and empty and that I'm unable to fulfill the purpose that I feel the Lord has clearly planned out for my life and the fear of this becoming my new reality mixed with the feeling of constantly looking into a fish bowl of everyone having fun without me and except me-that has really darkened my thought process, and therefore, darkened my days lately. However, each semester I pick out a few sayings to focus on, rooted in Scripture. Each semester/season, I choose the name of my Facebook album based on a saying I feel that the Lord is speaking to me at this point in time. I know it seems like a small thing, but seeing it every time I upload a picture to Facebook serves as a reminder. This semester, it is "grace upon grace". I pray I am able to give myself grace better, realizing this situation is unusual and I may not be as perfect or high quality as I wish. I pray that I have a feeling of peace, that no matter how my health looks I may be at peace with how He is choosing to work in my life right now. If you want to join me in praying for grace and peace in this season of my life, I would greatly appreciate it.
PS... I wrote this blog post over Spring Break actually, but it took me a lot of courage to post this for the whole entire world to see. I finally got the courage to share when I realized perhaps this is how the Lord wants to use me in this season, so that people can hopefully hear His voice through my words. If you are struggling today, please remember that your words have purpose and power, and your life is empowering, encouraging and worth living.
