Monthly Archives: October 2015
When you think of praying, what do you see? Most people see something like a person kneeling with their eyes closed and hands folded. That used to be my view too, but that changed in 2014. Now, I see a garden. Let me explain by taking you through the same thing I went through at an international youth conference.
Now, you’ll probably want find a quiet, cozy spot and take a deep breath.
So here we go! Actually, side note first: this is much better if it is done with your eyes closed and someone actually talking you through this. However, since I absolutely refuse to record myself in any way for you, you can read it to yourself and then go through the steps yourself at a later point in time. Or, if you’re really creative, you can get a friend involved and ask them to read it to you. Slowly. And I mean really slowly. If you rush it then it doesn’t have the same affect. So, now let’s get started!
Close your eyes.
Imagine a garden. What kind of plants are in your garden? Are there trees? Flowers? Is there a water anywhere? Where are you sitting? Is it a bench? Or a tree branch? Or the ground? What do you see? Imagine your garden completely. Don’t leave a single detail out.
Now, you see someone walking toward you in your garden. You realize that it’s Jesus.
He asks to sit with you. Respond however you wish.
Jesus sits down right there with you. What is He wearing? What color are His eyes? Look into His eyes. He has kind eyes. There is no condemnation or judgement in His eyes. They are filled with love for you. Love and kindness.
He has something to tell you. Listen. Don’t speak just yet. Just listen to what Jesus has to tell you. What did He tell you?
Now, look down at your hands. Think of all of the things you’ve done wrong. Things you’ve said. Things you’ve thought. Things you shouldn’t have. Think of all of your worries and anxieties. Think of all of the things that cause you stress. Each of those things is a box or some other kind of physical item. Place all of them in your hands. How many are there? Can you carry it all?
Jesus stretches out His hands. He tells you to place everything in His hands. You can choose to give it to Him or you can choose to keep it. He won’t force you to do anything. If you give everything to Him, it all disappears into His capable hands. Your hands are empty. Ready to receive.
Jesus asks you to hold your hands out. He puts a box in your hands. How big is your box? What color is your box? What shape is your box? How does your box open?
Remember, this is a gift from Jesus. He says that it has everything that you need for today. Go ahead and open it.
What’s inside of your box?
Keep talking to Him. It’s a conversation. A two-sided conversation. You speak to Him and then He responds to you. You are literally sitting with Jesus having a conversation with Him. Don’t let that pass through your mind before you fully grasp the significance of it.
You can open your eyes now.
Now you can go to your garden and meet with Jesus any time that you want! This way of praying has helped me immensely because it allows me to have a visual and have a legitimate two-way conversation with Jesus. I talk to Him and He comforts me when I’m upset. He wipes away my tears and holds me in His arms so that I can hear His heartbeat. He’s alive. He’s real. And we speak daily.
If you get tired when you’re praying and have a hard time staying focused, this can help you more than you know. If you don’t like sitting and talking to yourself for hours (or at least that’s what it feels like to you), then this could be your answer. Give it a chance.
If you think all of this is gibberish and there’s absolutely no merit to it, then I dare you to try it. Take a moment. Find a quiet place. And actually try it. Have a conversation with the Lord. I bet it’ll change your life. It changed mine.
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.