28 things about my invisible illness

List articles are so popular right now. So here are 28 things relating to my illness that you may not know. What else would you like to know? Tell me and it could be featured in my next blog post.

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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.

A story of surrender: my testimony

For the last few weeks in Bible study, we have discussed how write and share your testimony. For the first time, I shared my testimony with the group. It was so liberating to share my story, to let others in, and to open up about my relationship with Christ.

I have not blogged in almost a year, so I thought sharing my testimony would be a good way to restart.

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I have grown up in a Christian home, with two Christian parents, going church every Sunday and Wednesday, and praying before meals. I spent my summers at vacation Bible school, went to Christian camps, and I knew my Bible story books like the back of my hand. I’ve always known Christ so there wasn’t this big “ah-ha” moment like there is for many people who come to Christ as adults.

At the age of nine, I became very sensitive to right and wrong and was more aware of my own relationship with God. I wrestled with the decision to actually become a Christian because I thought I had to be perfect. I didn’t understand that the sacrifice had already been made and that I would be forgiven of all past sins as well as future sins. I thought I had to live a flawless life and that terrified me.

For four years I fought with myself over this matter. At every invitation and alter call I would be in tears because I knew better, but was too scared to do anything about it. One night, while at revival with my cousin at her church, the preacher looked right at us and said, “what about you girls, do you know the Lord?” We looked at each other and then nodded at him, unsure of what to do or say.

On the way home that night, I burst into tears telling my mom what had happened and that although I knew who God was, I didn’t know Jesus in the way that I needed to. We pulled over and prayed together, I called my daddy, and we turned around to meet at our church. I was baptized into Christ at 11:30 pm on August 23, 2007. For most people this is where their testimony ends, but for mine this is only the beginning.

Teenage years are just tough – no matter who you are. But fighting chronic medical conditions as a teenager adds another level of difficulty. I was struggling to keep up with my friends and wanted nothing more than to be normal. I still was very sensitive to right and wrong, which I believe was and is the holy spirit inside me. I wanted to please everyone, especially mom and dad, and most importantly, God.

As my high school years were coming to a close, I was dealing with a lot of changes. College decisions were looming above me, my health was failing, and I was dealing with relationships I didn’t know how to navigate. But through the stormy weather, my constant was God. I would go through phases where I felt closer to Him than at other times – like we all often do.

I’ve always been organized and a planner – I still am and it drives everyone around me insane. Every area of my life had to be planned, down to the most tiny detail. Looking back, I feel that maybe this was because the lack of control I had over my medical issues. I had to compensate for that by controlling the things I could. You know what they say, we plan and God laughs.

Despite my micromanaging and plan making, God would change things up. This made me feel as if I was constantly failing. I felt a lack of peace in my life, even in the presence of God. Although I was Christian, and gave Him my life, there were still come things I was holding back. Maybe it was a lack of trust or the idea of relinquishing control on the last piece of my life I was holding onto.

After many tries, God finally got through. He finally was able to show me how to truly surrender. One day, while at the hospital, I anxiously sat in the room with mom. We were waiting on the results of whatever tests I had that day and for whatever reason I was particularly uneasy. I decided to check my email while I waited and that’s when I saw the KLove verse of the day in my inbox.

The KLove verse of the day is something I have been a subscriber of for years. It comes into my inbox in the wee hours of the morning and it is a random verse each day. So on this particular day, that verse had been sitting there allllll day and by the grace of God, I opened it at this moment.

It read, “And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.”

      Phil 1:6 (NLT)

I immediately began to cry and as I showed mom the verse, we just sat there and cried together. I truly felt that God had used that verse, that email, and that moment to remind me of His unfailing love. He was asking me to surrender my life, every last piece, to Him. It was almost as if He was whispering to my heart, “Stacie, it’s okay. Let go. Give it to me. What I have for you is far better than anything you could every dream of.”

And I did.

Little by little, because I’m still human, but I let it go. Surrender is a struggle, it’s one I wake up every day and choose to fight. Sometimes I mill over the same things again and again, until God reminds me to stop. I am reminded that I don’t need to pick back up what I have already laid at the feet of Jesus. I don’t have to be uneasy, afraid, or discouraged because Jesus is more than conqueror.

I’m still learning and I am still growing. Each day is an opportunity to commune with God, to lean on Him, to trust His will and way. My life isn’t perfect, but it is so much better with God than it could ever be without Him.

Since that day of surrender, I have found myself feeling happier, lighter, and unafraid. My life exists to glorify God and each fear, sickness, imperfection, and situation are an opportunity for God to shine. I have a joy I cannot possibly put into words. I’m not afraid of death, pain, or heart surgery because the one who holds my future holds my heart.

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P.S. I honestly can’t remember what my test results said that day. But I do know that it was okay. It always is.