Category Archives: Vascular Ehlers Danlos Syndrome
Remember that post I just did on surrender? If you don’t, you can read it here. Basically, it was about me struggle bussing to surrender my plans and desires and life to the Lord even though I know that He is definitely the one who should be directing my life. Not me.
Well, yesterday the Lord blew me away.
Not only did He heal my shoulder miraculously, he also provided something I have been praying a very long time for.
Let’s start with the shoulder.
I have had pain in my right arm/shoulder for eleven weeks now. Yes. Eleven. That’s almost three months. I can’t tell you what in the world happened to injure it, especially to injure it for a full eleven weeks and counting; I just woke up one morning with sharp pain in my neck (which is nothing new to me considering that neck pain is a chronic, daily reminder of my life with VEDS) as well as my shoulder, which was very new. The strangest part was the decreased range of motion in my right arm/shoulder. I couldn’t lift my arm to the side past a 45 degree angle and I really couldn’t shrug my right shoulder either.
This pain and reduced range of motion, as well as some surging/traveling pain down the entirety of my right arm, have been consistent for eleven weeks now. The surging comes and goes, but the limitation of movement and pain has been a consistent companion. Many people had mentioned that it sounded like a rotator cuff injury, so after putting it off for so long, I made an appointment with my doctor. He did some x-rays and decided that he thinks it is a problem with the vertebrae in my neck, not my shoulder. So, an MRI of my neck was ordered and I am still waiting for them to contact me to schedule it.
That night, I went to the Monday night prayer meeting at my church, like I always do. I told the ladies about the persistent pain and what the doctor had said. This isn’t the first time that I’ve brought physical pain to prayer. In fact, I bring that with me almost every week. Those ladies are always faithful to pray for whatever new pain exists or the lingering pains that cling to my muscles or joints and refuse to be released. They prayed for me, as they had done many times before, and we all went home.
That night I couldn’t sleep. My whole body ached all night and when I woke up yesterday morning, my neck was so tight that my right shoulder was one to two inches higher than my left shoulder at rest.
I tested out my arm to see how badly the neck pain and tension was affecting it.
It went passed the 45 degree mark all the way above my head. I tried it again. And again. I just did it again now. It still pops and my neck hurts some, but my range of motion is back!
I shrugged my shoulders to test the movement there. It went passed the typical stopping point. Although my neck still hurts and I don’t have full range of motion back, it is definitely a God thing!
You can’t look me in the face and tell me that going to the doctor and getting proof of an injury and then waking up the next day with the evidence almost completely gone is just a coincidence. That, my friends, is some divine healing! A touch from the Lord’s hand! Can I get a hallelujah!?
So, needless to say, yesterday was already shaping up to be a phenomenal day. However, that was just the beginning.
Yesterday I also received a letter containing a check that pretty much covers the rest of my graduate school tuition. Read that again. And again. Now, that may not be impressive to some people, but that is a direct answer to my prayers followed by an overflow of blessing on top.
I have been praying fiercely that the Lord would provide the money that I need for my tuition each semester, which is no small sum. I asked Him to surprise me and I have have no doubt in my mind that He would provide in one way or another. The past three semesters, God has provided my tuition in a myriad of ways and on a timeline that I could never understand, but He has never delayed and He has never let me down. He has been more than just faithful. He has been… Wow. There aren’t words. There is no way that I could contain how good and perfect and absolutely, miraculously, indescribably incredible the Lord has been to me. There just aren’t words. He cannot be contained in a paragraph or a phrase. He cannot be described with the meager words of my unremarkable language. He has certainly surprised me more than once just in how He has provided for this one particular area of need and I know beyond a shadow of a doubt that He will continue to surprise me and He will continue to be the Almighty, Sovereign God that I know Him to be. I know that He will continue to defy the odds and do the impossible. He is good. All the time. And all the time. God IS good.
So. Yesterday was an absolutely phenomenal day. I saw the Lord answer not one, but two major prayers in my life right now. I had been praying for another $4,000 just to get through the coming Fall semester. The Lord did one better and provided enough for this semester and the next! Thank You, Lord! Thank You, Lord! Thank You, Lord!
And thank YOU! Thank you to everyone who has prayed for me and with me. Thank you for believing and trusting that the Lord would answer. Thank you for encouraging me in prayer and in person. Y’all are awesome and I pray the Lord blesses your socks off and reveals Himself to you in new and awe-inspiring ways.
God is good! Can I get an Amen!?
Have you ever had someone look you in the eyes and say, “Dream bigger! Your dreams just aren’t good enough.”?
Well, me either. Not really. It wasn’t so much a person as the Lord’s voice in my head one day as I was praying. He was very clear, though; my dreams were not up to His standards. So I upped my game.
First, I brought Him all of the dreams I did have: a house, family, good job, blah, blah, blah. Basically, all of the typical girl dreams, including a nice guy with a ring and a wedding eventually. Yeah… I’m pretty basic.
Then, I gave up my dreams and asked God what it was that He wanted me to be dreaming of. (That is an absolutely terrifying question to ask Omnipotent, Omniscient, Omnipresent God… Do it. I dare you.)
His answer wasn’t what I was expecting. Actually, He rather surprised me.
It was as if my dreams were pieces of clay that I had molded and spent so much time perfecting myself. They were well thought out and I had taken pieces of each of my dreams from different places: a detail from my best friends dream wedding, a characteristic from the storybook prince, a spark of life from my past experiences. But all of my hard work wasn’t good enough…
The thing is, God didn’t just waltz in, snatch up my dreams, and throw them by the wayside. Instead, He asked. He requested that I willingly surrender the things I had worked so hard on, but He also promised something better. So I did. I gave them all up. And what He offered me was so much better than I ever could have imagined.
I gave Him my dream of a house in the country with a wraparound porch and a swing. He gave me a massive house ready to hold friends and family from near and far, ready to serve anyone who walked across the threshold. He gave me a home filled with love and joy that echoed off of every wall. He gave me a wraparound porch for all of the kids I love and teach to run in circles throughout the day. He gave me a swing to sit with friends and family and converse about life and to sing to the kids around me as we swing away from the worries surrounding our lives.
I gave Him my dream of a family which had been shattered by the diagnosis of VEDS. He gave me a home filled with kids from all over the world. He gave me a family of adopted kids better than anything I ever could have imagined on my own. He gave me a church family bigger than any biological family I could ever have.
I gave Him my dream of a good job with good pay. He gave me a better job than I ever could have found on my own. He gave me experiences I didn’t know I needed. He gave me coworkers who would support me in Christ. He gave me my mission field in the midst of my work life. He gave me everything I would ever need, provided by His hand, not mine.
I gave Him my dream of a nice guy, of prince charming or whomever else girls dream about. He gave me a man to stand by my side when no one else could. He gave me a man wiling and able to support me when I forget to support myself. He gave me a man better than any prince charming, shadowhunter, Mr. Darcy, or superhero could ever be. He gave me a man who kneels in prayer with me and worships beside me. He gave me a man who would never run away, no matter how bad life gets.
Then, He gave me a new dream: to travel. To see the world He had so deftly created and continues to create and renew each and every day. But He didn’t just give me the desire to see it on a TV or computer screen. No. He gave me beauty beyond my wildest dreams and joys I never knew I could behold, all with my own eyes. Adventure. Journey. Explore. Travel. To see it all for myself and enjoy every step of the journey, every moment of the adventure that takes me wherever He leads.
The Lord didn’t take my dreams and toss them in the trash. He transformed them. He remolded them into something more beautiful than I could have imagined, something I never knew I wanted.
So go ahead. Dream bigger. I dare you.
After I got diagnosed with VEDS, my relationship with Brandon took a negative turn. If you want to read the beginning of our story, you can find that here.
A few days after I was diagnosed, as I was driving to work, I prayed that the Lord would give me something to hold onto while I grappled with living with VEDS on top of every other thing I was dealing with.
So He did.
I was sitting in my car with tears streaming down my face. I was praying. Asking God to give me something, anything to hold onto. I felt like I was drowning. I felt like this new knowledge that I did in fact have Vascular Ehlers Danlos Syndrome was going to send me into the darkest pit of despair. I needed something to cling to; to keep me from falling into the pit that threatened to ruin my life and steal every ounce of joy I had ever known.
So I pleaded with the Lord to give me something. Anything.
And then it happened. In my little two door car, trying to see past the tears that filled my eyes, hearing the cracks in my voice as I cried out for help. I saw it.
It was about five years into the future. Brandon and I were married and we were in our room getting ready to go to sleep. We walked over to the bed and he reached out his hand to me. I took his hand and we knelt down beside our bed with our clasped hands between us on the quilt. We closed our eyes and started to pray. Just like we did every night. When I opened my eyes, our clasped hands were old and wrinkled. We had the hardest time getting off of the floor with our old knees. But we still knelt beside our bed and prayed together every night. Just like we always had.
I was frozen.
That was it. That was my hope. That was my promise. That was the thing that I could cling to for the rest of my life. When my world started to crumble again, I could remember that promise that came straight from Heaven.
I had been given visions before and I’d had dreams that I knew were from the Lord, but nothing had ever compared to this. It was so vivid and I knew it was just for me in answer to my prayers. I had asked God for hope. I had asked Him to give me something to cling to; to keep me from slipping into the darkness. And He answered me. He is so good.
He gave me hope. But not just a fleeting hope. This vision that He gave me filled me with joy and hope and peace. It has continued to fill me with joy and hope and peace. Through every trial and every temptation to give up and sink into despair, this vision has been a reminder of God’s plan for me.
Just because a doctor says that my median life span is 48 years doesn’t mean that I can’t live to grow old and kneel with my husband in prayer every night. Just because a doctor says that I’m at an incredibly high risk of rupturing anything in my body at any moment doesn’t mean that I can’t live a full life. Just because a doctor says that it’s really risky for me to have kids doesn’t mean that I can’t adopt the sweet kiddos that need someone to love them. Just because a doctor says something doesn’t mean that God can’t turn what he says into a new dream, a new blessing.
Just because I have VEDS doesn’t mean that I can’t live a long life with the man of my dreams. It doesn’t mean that I have to live in fear. It doesn’t mean that God has turned His back on me and I have to walk this road alone. Actually, it means the opposite.
Being diagnosed with VEDS has opened my eyes to just how near God is every single moment of every day. The vision He gave me has reminded me of that more times than I care to count. Chronic pain and a different issue every day makes life a little more insane. But it also makes me a little more thankful for each day I see and each moment I get to live. It makes me realize how incredibly blessed I am to have a man like Brandon who is more than just willing to walk through this insane life with me. He wants it. He is actively choosing me, with all of the crazy complications that come with a life entangled by VEDS.
He chooses to stay with me instead of walking away like most rational people would. He chooses to help me through the nights that I’m plagued with negativity. He chooses to hold me when the tears overwhelm my joy. He chooses to pray for me when I don’t know how to pray for myself anymore. He chooses to pray with me and help me to see the good all around me. He chooses to point out the positives and remind me of all of the blessings the Lord has given me. He chooses to walk with me through each of the painful moments, letting the Lord lead us on this crazy path that we call life. He chooses to love me, in the rare good moments and the frequent bad ones.
So, Brandon, it means the world to me that you actively and presently choose me, regardless of every problem we have faced and all of the craziness I’m sure we will face. You are my sunshine. Truly. When skies are gray and all I can see is the negativity, you help me to see the sun hiding just behind the clouds. You remind me that the Lord is still there and He is ready and willing to carry my burden and give me joy. You’ll never know, dear, how much I love you. And I pray the Lord never takes you from me.
This post is going to serve two purposes. The first is to take a look back at a year ago, September 17th 2015, when I was diagnosed with VEDS (which in turn, led to this blog). The second is to continue my story with Brandon as it relates to that fateful day. If you would like to read the beginning of our story, you can find it all here. If you would like to know more about VEDS and how I explained it, you can find that here.
One year ago today I was diagnosed with Vascular Ehlers Danlos Syndrome, otherwise known as VEDS. When I walked out of that doctor’s office, I knew my life would never be the same. One year after that day, I can say that I was definitely right.
The doctors gave me so many limitations: don’t lift more than 20 pounds; don’t exercise with any repetitive motions or heavy weights; don’t run; try not to do anything that makes your blood pump harder in your veins; oh yeah, and if you ever get pregnant, it will immediately be a high risk pregnancy and you have a 50% chance of passing VEDS to your kids. Just to name a few. They even threw in a median life span around 48. Have they stopped me? No. Did they give me pause? Heck yes.
The thing that gave me more pause than anything else had nothing to do with me. It had to do with my mom and Brandon.
First, let’s talk about my mom.
She’s literally one of the most incredible women on the planet. I’m pretty sure she knows everything and I’m not the only one who would say that. She is asked about anything and everything, unless it’s sports. But I don’t have to defend her to you. If you know her, then you know how fantastic she is. If you don’t, then you are missing out on knowing an amazing woman of God.
When the doctor told us that based on the data they had, VEDS patients had a median life span of 48, my first thought was, “I can’t lose my mom. That would only mean a few more years with her. That can’t happen.” I held it together in the doctor’s office, but trust me, I had more than my fair share of tears over that thought when no one was around.
Yes, it was an awful thought. Yes, I cried over it. And yes, there have been many prayers over that whole situation. But a few months later our suspicions were confirmed when my mom’s dad was also tested and diagnosed with VEDS. Considering that we have some semi-distant cousins who also have VEDS, we are also assuming that my great grandmother and her sister also had VEDS. Why is that important? They both lived to be in their 90s. My grandfather is currently in his 60s.
Know what that means?
We are defying the odds and making the doctors eat their words! Life span of 48?? Ha!!
There is so much peace in knowing that the Lord has been watching over my family with VEDS for decades. He has been helping us defy every odd that has been placed in our path. That, my friends, is one of the many ways I know that God is good.
Now let’s move onto the second thing that gave me pause: Brandon.
Before I was able to walk out of that doctor’s office, it was as if moments of my future life were flashing before my eyes. The problem was, they weren’t very nice ones… *insert dramatic blur to dream vision* I was in my 30s sitting in yet another doctor’s office and he had no answers for why this was happening. I had to visit what seemed like a hundred doctors each year because of all of the problems I was having. I was being wheeled into the emergency room because a major organ had ruptured and they were going to try to save my life, but the likelihood of them being able to save me was minimal. I was slipping away while giving birth to a child, realizing that I would be leaving my husband wifeless, perhaps childless if the baby didn’t make it, and that baby may have the same disease that caused me so many problems if he or she made it… A life of pain. A life of heartache. A life of frustrations and trials and worries… *insert blur back to reality*
Needless to say, I had a lot on my mind.
My brother, Parker, was diagnosed with VEDS a couple of months before, which is why we were tested for VEDS at that time. Since Parker had already been diagnosed, we knew what to Google. We knew what the geneticist said about it and we had some resources to look at, so the 6 weeks between when the blood work was taken and the results came in were filled with learning more about VEDS and how it could potentially affect us for the rest of our life.
Brandon and I had talked about the fact that I was in the process of being tested for VEDS. (Granted, I waited a few days to tell him that my mom, sister, and I had gotten tested… He wasn’t too happy about that…) So when I called to tell him that the blood work had come back positive, it wasn’t a big surprise. We had been planning for that.
I’m sure that Brandon wasn’t too thrilled when I basically told him that I thought it would be better for him if he let me go and found someone else to be with. His life would be better. He would’t have to deal with all of the doctors and medications and bills and problems. His life would be easier and probably a lot simpler without me in it. So I offered him an out. I gave him a way to leave without guilt and without any hard feelings. I didn’t want him to be stuck with me and VEDS for the rest of his life. He deserved better than that.
The problem with that whole conversation was that he didn’t agree.
A year ago we were 21. Now I don’t know about you, but I don’t know many 21 year old guys who hear that their girlfriend has a progressive and chronic genetic disorder with many limitations and still decide that they would rather live that life with you than leave you for anything or anyone else.
That moment made me realize how much Brandon really did love me. It wasn’t that he felt obligated to stay with me or anything like that. He had prayed about it and thought about it deeply. He actively chose me, knowing everything that came with that choice. He chose me knowing how many sacrifices he would have to make. He loved me not only in spite of all of those things; he loved me because of them.
Here are a couple of the things he told me after I was diagnosed with VEDS:
“Let me be your leg to stand on when you can’t stand on yours. Let me be your rock when you need it. I’m here for you and I’m not going anywhere, so you better get used to it because you have a long time left with me!” and “I know that there’s a lot that I’ll have to deal with in this life if I’m with you, but who’s to say that it’ll be easier without you? No one!”
Each day and each moment that has filled the last year of life with VEDS has taught me so much. But most of all, it has made me realize how short life is and how quickly it can all change. Brandon not only loved me in that moment, he loved me for every moment after that. The good, the bad, and the ugly. He held me while I cried and suffered through an insane diagnosis. He kept telling me it would all work out and God had it under control. He worked with me through one of the roughest seasons in my life and he continues to do so each day. I guess you could say he’s a keeper.
The Lord was able to take that crazy day and turn it into a blessing. It has definitely been a rough year, but I have been blessed beyond measure since that day.
However, as blessed as I was and as loved as I was after that day, I went through a rather difficult time. I felt guilty for dating Brandon because I felt like I was dragging him into a terrible life. I felt bad for the people around me who had to deal with everything too. In reality, I would have preferred leaving everyone I knew and living by myself and taking care of myself so I didn’t burden anyone else. Granted, that didn’t really work. At all. But I did still slip into a short season of not understanding why this was happening to me.
One day on my way to work, I prayed that the Lord would give me something to hold onto while I grappled with living with VEDS on top of every other thing I was dealing with. So He did.
But I’ll tell you about that next time.
Well, we’ve added a new member of our rather large family to the smaller number of our VEDS family. My mom’s dad was tested and his results came back positive. So our group has grown to 4 and more are being tested. However, as sad as this may seem, it actually gives us a lot of hope!
You see, my grandfather is most likely the oldest known person living with this disease. And to make matters even more hopeful, his mother and sisters lived to be in their 90s! That is unheard of for VEDS patients. Especially seeing as the average age of people diagnosed with VEDS is around 45.
You may ask how I can believe that my great grandmother had VEDS. That is because we have some cousins that have been diagnosed with VEDS. What is the link between my family and their family? My great grandmother and her sister. Who both lived long, happy lives well past the average age and never knew they had VEDS.
So here we have a new hope! Although VEDS is chronic (no cure) and progressive (worsens over time), especially through the generations, we have renewed hope. God is good and He has been watching over my family for generations. We just never quite realized just how much He was looking out for us! Helping us to defy the odds and live as walking miracles each and every day!
What more could a girl ask for?
When a doctor walks in and gives you a chronic (no cure) and progressive (gets worse over time) diagnosis, most people freak out. I did. I went through the cycle of depression and questioning why in the world God thought I was strong enough to handle something like having Vascular Ehlers Danlos Syndrome. I questioned what my future would look like. I dwelled on the limitations they put on me and things I could never have. I only saw the negatives
That lasted for about a day.
I have a different outlook now that I’ve officially been diagnosed with VEDS for 3 months. But this isn’t a new viewpoint that I have. I’ve had it for a while, but it took a while to get to where I am now. God’s got it all under control and He knows what He’s doing.
I can see the light. No, I don’t mean the light everyone tells you not to look at when you’re dying. I mean I can see the Lord working through this entire situation. I see the way He has grown me and taught me to trust and persevere. I see how grand life can be when you stop focusing on the negatives. I have learned how imaginative I really am because I have to figure out other ways of doing things.
Don’t get me wrong, I still doubt. I still question my sanity and if I can make it through even one crazy day, let alone the rest of my life. I still worry about my future and long for the things I won’t have. But, in all of that, I can see that God has a greater purpose for me. He has a grander plan and He always knows best, so I’m just gonna have to learn how to do life with VEDS.
The thing is, I don’t have to do it alone. God is always with me. Guiding me. Showing me new ways to view things. Giving me wisdom and discernment. But I have also been blessed with incredible friends and family who are helping me to walk on this path, though they can’t walk it for me.
I am learning to accept what the Lord has given me. Good or bad. I don’t try to change things anymore. There’s really nothing I can do about most things anyway! I don’t reject them. I try to welcome all of this craziness with open arms while asking the Lord to teach me through them, but it is a process that will take time and patience.
So now it’s your turn. What has He given you, good or bad, that you need to learn to accept instead of trying to reject or change it? Now, accept it, live life, thank God, and learn.
One of the first things I learned after I was diagnosed with Vascular Ehlers Danlos Syndrome was there are limitations. A ton of them. They restrict everything from exercise to family. Some will see the word “limitations” and, like me, immediately think, “THE LIMIT DOES NOT EXIST!!!!” I applaud you all.
First, let’s just start with what exactly some of my specific limitations are. Please remember that these have come from my specific doctors and all are based on what they have said. These limitations may change after the results of the MRA scans come back, but this is what I have been told for now and this is what I’m living with at the moment. So here we go! Get excited because limits can be fun! Anyone who has ever had a math teacher tell them that has been horrifically lied to.
Remember those metaphors about the metal? If not, you can read it here. Because of how susceptible our veins/arteries are to rupturing, we’re supposed to limit the number of times we repetitively bend our joints. Yes, that includes brushing your hair, exercising in really any capacity, petting an animal, walking, moving, living, and pretty much anything else. Each time a joint is bent, an artery or vein is crimped and weakened even more; therefore leading to an increasingly higher risk of rupture in that particular area. Think it sounds like they’re asking us to lie in bed all day without moving? Yeah, that’s what I thought too. Bubble boy’s got nothing on us! Okay, if I’m being honest, I’m being kind of dramatic with that whole spcheal. The doctor said that we could and should live life normally, but we should avoid any extra, repetitive movements that would crimp our veins more than they normally do. This includes exercises like: squats, curls, jumping jacks, high knees, etc. So, no excessive movement. Got it.
We are also not supposed to run or sprint or jump or really anything fun. Do you realize that this includes rollercoasters, backpacking, any kind of thrill ride and most sports. Why? Again, because of how susceptible our veins/arteries are to rupturing. Any activity that increases your blood pressure forces more blood to pump through already weak veins and arteries. Do you think that sounds like a good idea? Yeah, probably not… So, no having fun. Got it.
We were also told that we shouldn’t lift anything heavier than about 20 pounds. Do you realize how many things are heavier than 20 pounds? Groceries, kids, furniture, backpacks, boxes of detergent, boxes in general, garbage bags, pets, and a ton of other things. So, don’t pick anything up. Got it.
I was told that I could technically have a child as long as I was very closely monitored by a prenatal specialist throughout the whole pregnancy and delivery, however, there are MANY risks that come with that. Here are a few of them: the uterus is a hollow organ that, in people with VEDS, doesn’t have enough collagen and is structurally susceptible to rupture as is; add a baby growing in there and you have a recipe for disaster. You have the risk of losing your life and then you also have the risk of losing the baby. You also have a 50% chance of passing the VEDS gene to any child that you have because it is a dominant genetic disorder. If you pass the gene, you never know how it will manifest itself in your child because it is different in every person. There is also an increased risk of miscarriage and the uterus hemorrhaging (rupturing). I know the first thing you’re thinking is, “Your mom had kids and she did fine!” Yes, that’s true, but she is very blessed because of that and she also unknowingly passed the VEDS gene 2/3 times. I, personally, count that as the biggest blessing in my life. If she would have been diagnosed with this before she had us, would she have had kids? I may not even be here to type this right now and I would not have had all of the incredible experiences that I have. With this being said, there are people having kids all the time who have VEDS and doing fine. I guess it just depends on who you are, but the risks are still there. So, be very wary of having kids. Got it.
The number one limitation that they’ve given me? Life span. Yup. The recorded median age for people with VEDS right now is 48. They say life is short and that would make it very true in this case. However, they are still in the beginning stages of even finding VEDS and discovering exactly what it is and what it does. Because of the new information that they have, they are thinking that 48 is too young. That’s awesome news! The bad news, however, is that they really don’t have much information on VEDS because of how rare it is. So what is deemed truth right now could be proven false in time.
Those are just a few of the limitations that my doctors have given me, but they still have a huge impact on the way that I live my life. The people around me are very cautious about what I’m doing and how much I’m lifting. Having more than one mom around can be kind of disheartening sometimes. However, they all mean well and they also know that I am one of the most stubborn people in the world and I despise asking for help of any kind. So it’s definitely a good thing that I have them in my life.
These limitations are really important for me to think about and pay attention to if I want to live a long and happy life, but they do not define me. If you think that I am going to let these things regulate exactly how I live my life, then you are very wrong. I won’t sit in my room in a corner in fear of getting hurt. I’m not giving up. I’m still going to live my life to the best of my ability, I just have to be a little more creative about how I do it.
If there is a child who needs to be held because they are crying, then I will still comfort them; I’ll just sit on the floor with them instead of picking them up. When I have to carry groceries in, I’m not going to try to get them all at the same time; however, I’m also not going to try and weigh the bags to make sure that I’m only carrying 20 pounds. They are definitely something to think about and keep in mind, but they do not rule my life.
Do these limitations sound like a dead end? Maybe. But they aren’t. They are merely the beginning of a road that could lead to the most imaginative life ever lived.
They say life is short.
You wanna bet?
This week has been full of doctors appointments. As in five of them. In one week. Whereas this may be nothing to some people, this is complete insanity to me. Before I turned 21, I had not legitimately gone to the doctor for any reason (except maybe once or twice) so maybe that helps you understand why this week was so different for me. However, having a diagnosis like Vascular Ehlers Danlos Syndrome means that I will probably see many more weeks like this in the future. Hopefully, though, they will be farther into the future, after all of this initial stuff is over.
Why in the world have I had five different doctors appointments this week, you ask? Well, allow me to enlighten you! Monday, I had two different appointments: one with a chiropractor and another with an ophthalmologist. The chiropractor was necessary because my neck and knee especially have been bothering me more and more over the last year or so and for good reason, apparently. My neck does not have the usual C curve that it is supposed to have. That’s another reason my neck muscles are so tight (besides, of course, the fact that the tendons that are supposed to help hold up my big head aren’t doing the job that they’re supposed to, therefore making my neck muscles work harder than they should have to).
Discovery #1: I have a crooked neck and sucky neck muscles.
Also on Monday, I went to see the ophthalmologist. Don’t know what that is? That’s okay. I thought my mom was saying some eye doctor’s title with a lisp. Nope! I just didn’t actually know what it was… But now I do! It’s an eye doctor that also performs surgeries. We were referred to our ophthalmologist by our geneticist after the VEDS diagnosis. And by referred, I actually mean we didn’t really have any choice, but God is good and gave us an incredible ophthalmologist near by. So, here’s what he found: I have better than 20/20 vision, but I have Corneal Ectasia (a fancy way of saying that my eye is misshaped because of how much I rub it and I am no longer allowed to even think of touching my eyes for fear of worsening my eyesight).
Discovery #2: I have fantastic eyesight despite my weirdly shaped eyes (Praise the Lord!).
Tuesday, I did not have an appointment. However, the reason behind this is because I am in school until 7:00 or so and I can’t really miss class since it’s my senior year. My teachers aren’t very understanding of me missing class. Unless you count getting a zero for whatever we’re doing that day as “understanding.” I don’t… Now, another reason for that might be that none of them are actually aware that I’ve been diagnosed with VEDS, but I haven’t really had a reason to have to tell them yet. I’m sure it’s coming, though.
On to Wednesday! Mom and I had our first of three appointments to do our five MRA scans. That day, they scanned our head and neck. If you have never had an MRA or MRI of your head/neck, then you may not know that they put this crazy cage around your head and lock you in with no hope of moving. It’s kind of terrifying for a moment. Now, if you’re sitting there thinking, “what in the world is an MRA?” You are in very good company. An MRA is an MRI with dye. So it’s still an MRI machine, they just hook you up to an IV so they can see your veins on the MRI scan to see if there are any problems with your veins that could lead to a rupture in that specific area. I actually had no clue what exactly and MRA was until I had to have one. I just thought that the doctor had said MRI incorrectly or my mom didn’t know what she was talking about. Turns out I just didn’t know what I was talking about. I’m just glad I didn’t open my mouth and say what was on my mind. That would’ve been awkward…
Discovery #3: MRI machines are loud and having an IV in your elbow sucks (remember that analogy about the bending metal? (click here if you don’t and scroll until you find “Metal Metaphor”) Maybe that’s why it hurt so badly, but at any rate, it still isn’t good to weaken that area since it’s in pretty constant motion.)
Thursday, we went back to the same doctor from Wednesday to get MRA scans of our chests. Instead of allowing them to put the IV in my elbow, I asked them to put it in my hand (so much better!). With this scan, I didn’t have to have my head locked down; instead, I had a big flat thing laid on top of my chest. Contrary to what I first believed, they do not put the dye (also known as ‘contrast’) in your veins for the whole time that they are scanning. They actually only run the dye through for a few minutes at the end. When they started it, I could feel it running up my arm and it was really cold, but pretty cool (haha :P).
Discovery #4: In the midst of all of these doctors visits, I can’t slack off of school because my professors have all decided that this is when they need to assign tests and projects…
Friday we went back one more time to finish off the MRA scans with our abdomen and pelvis. I asked them to put the IV in my hand again and I now have what looks like a spider bite on my hand (which is pretty cool if you ask me, considering I’ve never actually been bitten by a spider). Now all we have to do is wait for our results… Which is easier said than done. But God is good and He is in control. So we will attempt to be patient as we wait for our results and praise Him in the mean time.
Discovery #5: Without the Lord’s guidance and peace throughout this whole week, I wouldn’t have been able to get through all of this. Also, my mother is fantastic and I couldn’t navigate downtown and all of these doctor’s offices without her/the GPS, but mostly her.
It is an insanely crazy life, but it is a good life.
It is baffling the number of people whose immediate response to discovering that their friend or loved one has a genetic disorder (like Vascular Ehlers Danlos Syndrome) is something like, “Oh my goodness! I’m praying that God heals you completely” or “I’m praying that God rewrites your genetic code and that the doctors are baffled” or “I’m praying things change.” Basically, everyone is praying that this new found information will be gone ASAP.
Most people would smile and say, “Thank you so much!” in response to something like that. Not me. Remember, I’m one of those weird kids. So I’m going to take this post and try to explain to you why I don’t think that is the best way to handle things with prayer. Please bear with me. I may ruffle some feathers and some of you aren’t going to like it, but this is my opinion and I think that it is a very valid one and is based on teachings found in the Bible. So here we go. Deep breath….
My immediate response to someone telling me that they wish God would basically change His mind (which has happened before with King Hezekiah in 2 Kings 20) is, “why?” quickly followed by, “Lord, Your will be done. Not mine and not theirs.” I want to know why they want my situation to change. I want to see their point of view, which is normally a desire for me and my family to be made well and not have to go through this hard time. I completely understand this. Being sick sucks and if it can be helped, then that’s awesome! But, what if the healing doesn’t come? Then that’s awesome too! (You can read my last post about how to pray according to God’s will rather than just praying what we want, here.)
Don’t you think God knew what He was doing when He created me? He literally knit me together in my mother’s womb with this mutation in my genes. I happen to think He has something greater planned for me than just having VEDS. I believe that He can and will use this genetic disorder to shape not only my life, but also the lives of those around me. Actually, I know that for a fact. I’ve seen a change in the way that I view things and I’ve also seen a change in how others view VEDS after I explain why I don’t pray it away. No, I am not looking for pity. At all. I am merely saying that things ARE different now. God has used this to open my eyes and show me that life is short. Yes, I am completely aware that this is a cliche way of thinking and everyone is aware that life is short, but having a disorder like VEDS and having to come to terms with the fact that you could rupture at any moment really makes you stop and think for a minute. It made me stop and, not only think, but also give thanks for the incredible life that God has blessed me with thus far. I mean, seriously! I have accomplished so much in my 21 years that some people may never do. I’ve personally seen all 50 state’s license plates (don’t laugh, it’s a legitimate accomplishment and it takes a long time). I am a Black Belt in Karate. I am a Children’s Ministry Director. I have survived almost 3 years of a long distance relationship. And there are so many other things that I could continue to list, but I figure that you’re already bored with that. I have done a lot and God has taught me so many things throughout my life and this is just another one of those things to say “Thank You, Lord!” for and then allow Him to teach me something new. So I will praise God in the good times and the bad, just like Job did (Job 2:10) when everything was taken from him. God used that for His glory and that’s what I want the Lord to do with my life. No matter what it looks like, I want God to receive all of the glory.
Remember how much I like metaphors? Well I have another one for you! Check out John 9:1-12. No, seriously. You should read it. This whole thing will make a lot more sense if you read it for yourself. Just saying. I think I’m a lot like the blind man in that passage. I don’t think that I have this disease because of anything that I’ve done or anything that my parents have done. This isn’t the result of something someone did way back a long time ago. Jesus said, “this happened so that the works of God might be displayed in him” (John 9:3). And I think that God can do the same thing with me. I don’t think that I need a reason for me to have this disease. All I need to know is that God is sovereign and He is in control. He has a plan for me (Jeremiah 29:11) that will work out for my good (Romans 8:28) and that is enough for me. I want my life to glorify Him above all else. I want His will to be done above all else. The Bible says to rejoice when we go through trials and hard times (James 1:2), so why should I be any different? Those trials produce steadfastness, perseverance, endurance, patience, and so many other good things (James 1:3), so bring them on! I will be joyful in these hard times. Well, I will try to be. Thank the Lord that we have a patient and gracious God who is willing to work with us and I am super thankful for all of the people that God has placed in my life who have helped me and encouraged me through this time.
I am not praying for healing. Some of you may say that I don’t have any faith because of that, but I would say that you are wrong. I have faith, a lot of it for that matter. My faith, however, is not in my healing. If I am never healed, I will still praise my Heavenly Father because He is good and He is in control. My faith is in God. In His will, His way, His timing, and His glorification. Do I still believe that healing can happen? Sure! God is still a God of miracles. However, if God chooses to use this disorder as something to help mold me into the woman that He has created me to be, then I want that. I want His will more than I want my comfort. Is it going to be difficult? Definitely. Are there going to be days that I am unable to see the joy in the midst of so much pain and so many trials? Of course. But, God is good. He will get me through it and all I have to do is rest in the knowledge that the God of all creation is holding me in His arms and carrying me when I am unable to walk on this journey we call life.
God made me this way, so I’ll serve Him just as I am. Just like I have been. Just like I did before I knew about this disorder. God knew that I had VEDS before I was born. It took me 21 years to figure it out. So I think I’m placing my life in pretty good hands (the same hands, mind you, that molded Adam and rubbed the mud in that blind man’s eyes). I don’t NEED healing. All I NEED is Jesus.