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1.) The illness I live with is: Dysautonomia (POTS), Ehlers-Danlos Syndrome (EDS), Polycystic Ovarian Syndrome (PCOS), Bicuspid Aortic Valve (BAV), and an Aortic Aneurysm. (I’m trying to get the whole alphabet!) What this means is my body can't control automatic functions, heart rate, blood pressure, temperature, etc (POTS). My body is lacking collagen, which means joint pain, dislocations, and I am easily injured (EDS). My uterus does not function properly, creating pain, annoyances, and sometimes cysts (PCOS). I have chest pain and cannot play contact sports so that my aneurysm won't burst (BAV and aneurysm).
2.) I was diagnosed with it in the year: POTS - 2012, EDS - 2012, PCOS - 2008, BAV - 1996, Aneurysm - 2007.
3.) But I had symptoms since: MY. ENTIRE. LIFE.
4.) The biggest adjustment I've had to make is: Making better decisions based on what my body needs as the time. Not staying out late, pulling all-nighters, not overwhelming my schedule, taking my medicine regularly, and keeping a low-stress life are things I STILL struggle with.
5.) Most people assume: That I am healthy. I do not look sick, therefore I could not possibly be sick. I wish people were more informed about invisible illnesses.
6.) The hardest part about mornings are: Functioning before 10am. It takes my body a lot longer to start moving and working than a normal person. This means 30 minute bathroom trips, inching along as I get dressed, feeling nauseated and unable to eat, and so many other things - basically anything that required functioning normally.
7.) My favorite medical TV show is: Grey's Anatomy. The have actually had patients with aneurysms and I believe one with EDS - so cool!
8.) A gadget I couldn't live without: Toss up between my heating pad, tens unit, and laptop. My heating pad keeps my swelling down, tens helps with pain, and my laptop keeps my hands from cramping up when I take notes in class.
9.) The hardest part about nights are: Being comfortable enough to sleep and not waking up with a dislocation. This has improved dramatically with my new bed!
10.) Each day I take: 10-12 pills. I sometimes also wear a brace, compression sleeve, pain path, tens unit, SI belt, or taping. It just depends on the day and what part of my body hurts the most.
11.) Regarding alternative treatments I: Feel that they may work for some people. However, I have tried almost everything that I have heard will help my issues. If I am not already drinking your magic juice, using your oils from Africa, or standing on my head for 10 minutes each Tuesday when it is partly cloudy...there is probably a reason.
12.) If I had to choose between and invisible illness or visible, I would choice: Invisible. I may get judgmental stares for using the handicapped parking, but I am able to blend in when I choose to and that is nice to have the option. Sometimes in the right setting, I forget I am sick for brief moment.
13.) Regarding work and career: I fear that I won't be able to handle a "real" job. I am nervous that I won't have an understanding boss or coworkers or that I will be too sick to perform my job responsibilities. I have been blessed so far, so I have to trust that God has a plan.
14.) People would be surprised to know: That I don’t always handle everything well. I usually have a smile on my face and sassiness to spare, but sometimes when it gets rough, I do have breakdowns. I get sad, I get discouraged, I cry. But then I pray, pick myself up, and keep going.
15.) The hardest thing to accept about my new reality has been: That I may not be able to have children. Between my aneurysm, my connective tissue disorder, the potential of passing these on to a biological child, and the risk of very serious complications, I have made the decision to not have children. I want to be a mama so bad and I feel the calling to open my home and heart to a child that I didn’t bear. I plan to adopt someday – hopefully multiple children.
16.) Something I never thought I could do with my illness that I did was: Travel. I have a passion for traveling the world, but it is more difficult with my illness. I haven’t let this stop me though – I just have to plan more carefully than most people would have to.
17.) The commercials about my illness: Do not exist. I am what is known as a zebra – this means my condition is rare and it is not common for people to have heard of it.
18.) Something I really miss doing since I was diagnosed is: Playing volleyball! I played for 11 years, but finishing my senior season was really rough. I would collapse on the floor after games, hardly able to breathe. It would take my body days to recover. I tried playing intramurals at EKU and I made it through our season, but I am now officially retired!
19.) It was really hard to have to give up: Caffeine! Since my medical issues became more serious, I gave up drinking pop. I used to drink 6 Dr. Peppers a day so this was a big adjustment. The caffeine wasn’t good for my heart and the carbonation wasn’t good for stomach. I now have the occasional iced coffee, but overall I don’t drink caffeine.
20.) A new hobby I have take up since my diagnosis is: Crafting. I now enjoy calmer activities like coloring, painting, scrapbooking, sewing, etc. It gives me something to do in my spare time that is safer than physical activities.
21.) If I could have one day of feeling normal again I would: Go to an amusement park! I miss riding roller coasters and rides with large drops. I can’t ride anything above the kiddy rides because of my aneurysm and the pressure it would put on my chest. Before my diagnosis, I LOVED roller coasters.
22.) My illness has taught me: To see the best in others. I can be critical of people, but after suffering from an “invisible illness” I have learned to be slower to judge. You never know why a “healthy” looking person is using handicapped parking, taking an elevator up one floor, or using some type of assistive device. Everyone is fighting a battle you know nothing about.
23.) One thing people say that gets under my skin is: You should try to exercise, drink more water, stop eating sugar, take this vitamin…fill in the blank. People tend to assume that I can somehow do something to get better. I am chronically ill – it is not a cold.
24.) But I love it when people: Actually take an interest in my illness. It’s one thing to ask how I’m feeling, but it’s even better to ask more detailed questions and try to understand what I am going through and what makes my body so different. I’m not shy about my illnesses – I actually love to share with others. Don’t be afraid to ask!
25.) My favorite scripture that gets me through tough times is: 2 Corinthians 4:16-17 – “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.” This reminds me that this isn’t forever and it will be more than worth it when I get to Heaven.
26.) When someone is diagnosed I’d like to tell them: It’s going to be okay, but you have to fight. You have to be a self-advocate. You have to try hard each day. Sometimes it will be hard to find the motivation and energy to get out of bed, but most days you have to because you have a life to live. Your life has value, even though you are ill.
27.) Something that has surprised me about living with an illness is: The unpredictability of my health. I can be fine for months, but then spin into a rough patch for a few days, weeks, or months. It’s frustrating, but I am thankful that I have more good days than bad.
28.) The nicest thing someone did for me when I wasn’t feeling well was: Bring me flowers and chocolates, pray with me, hold my hand, watch movies with me, bathe me, hold my hair while I threw up… what hasn’t been done for me? I am so thankful for my friends and family who fight so hard for me and with me.
