Just to clarify a few things

There seem to be a lot of misconceptions and confusions about EDS and the issues surrounding it. So I’d like to explain a few things that you may not realize or fully understand.

1. There’s no cure for EDS. Ehlers-Danlos is a life-long condition that cannot be cured. Symptoms can be treated and managed, but the underlying cause is bad collagen – the stuff that hold you together. With EDS, you often have symptoms all over your body. So even though I had surgery to stop my knee from dislocating, that doesn’t mean my knees don’t hurt or my ankles or shoulders, or wrists, or hips… And sometimes (often), when you have one thing treated, the issue kind of moves to another place. For example, you get used to walking funny so your hips won’t pop out every time you take a step and that throws your back off. If you brace your back, it forces you to walk “normally” which means your hips pop out. People with EDS will have to deal with issues like that unless someone finds a way to fix our collagen.

 

2. One of my biggest pet peeves with my upcoming surgery is when people tell me not to “rush” into surgery. To explore other less-invasive means first. While I do understand what they are saying – “normal” people who have spinal surgery often find that it doesn’t fix the issue and sometimes even makes it worse. However, that is for people whose problems are slipped/herniated discs and their bodies usually will correct the problem given enough rest, time, and therapy. It’s best, if you don’t have EDS, to wait as long as possible to have surgery on something like that. Even with EDS, my herniated disc is not my priority. My major issue is instability – of the vertebrae closest to my brain and brain stem. Dr. Durrani said the reason my neck keeps locking up is because when the bone slips, it rubs my brain stem and my body is smart enough to know that it’s dangerous for that to happen so it screams “FREEZE!” If turning my head or sleeping wrong is enough to cause that to happen, think about what would occur if I had a bad fall or car accident; something that might cause a normal person a severe injury could be my death. There’s no way to stabilize those bones without surgery. And if there were, I’d have done it because I did do physical therapy for years (off and on with different places and techniques). My collar can help, but it can’t make the problem go away or even keep it from getting worse. Obviously, people warning me not to have surgery don’t fully grasp my situation and I don’t ever snap at them outwardly, but inwardly, it’s really frustrating; it’s like having my intelligence (what little I have left) insulted. I wish they could spend a week in my head and neck – there are days when I don’t know how I’m still going. I won’t be the one driving to Cincinnati for my surgery, but you better believe, I’ll be rushing! (Ha ha!)

 

3. It is possible to have a headache every day all day long. I often think people believe I’m exaggerating a little when I say I constantly have a headache. It seems impossible to imagine never having relief, doesn’t it? My best days lately are when it’s a level 3 or 4 out of ten. Once in a while, I might get a lucky hour of a 2 or 3 with the percocet, but that is it. How do I manage? I have to. I’ve gotten so used to “clenching” my ears when something hurts my ears or wearing my sunglasses on cloudy days because the light hurts my eyes. (Side note, I have a stupid problem with my eyes and I can’t wear my contacts for a few weeks and NO SUNGLASSES!) I am terrified that this surgery won’t fix my headaches – but I’m so used to it being there that it just seems unimaginable to have no headache.

 

4. You are allowed to complain if you get a headache. Honestly, I have had friends say they feel guilty when they want to complain about their head hurting. I still sympathize – headaches stink! I have never once thought, “Sheesh, they shouldn’t complain! What would they do if they were me?”

 

5. I don’t know how to explain my desire for everyone to know how I’m feeling but that I don’t want to talk about it. I want you to know that I don’t want to do anything ever, but I want to keep doing everything I can so that no one will talk to me about how I feel. I wish for everyone to know I am miserable and to have low expectations of me, but I still push myself past my limits so that no one will know how miserable I am.

 

6. I didn’t proofread this and I don’t care. 🙂

What is this joy you speak of?

Honestly. I don’t want to write another “woe is me” post. I don’t want to complain and I don’t want to depress everyone with my tales of hardship. But what on earth else can I write about?

If I thought I could eloquently pour out my soul and bring you all to tears with the beauty of my words, I’d do it. But whenever I try, it ends up like this:

I can’t take it anymore. I can’t take it anymore. What else can I do? I can’t take it anymore. I have no choice but to take it but I can’t. How can I go on like this? I don’t want to do anything productive – well, I want to but I can’t… Why does nothing take these headaches away??? God, help me.

Are you crying yet? No? Well, that’s ok. I’ve cried enough for both of us. And I’m tired of it.

Somehow, through my cobwebbed brain, God’s Word sneaks in. “The Joy of the Lord is my strength.” “You turned my mourning into dancing.” “He will restore what the locusts have eaten.”

In my impatience, I want to demand When? When will you do all that, Lord? Here on earth or after I get my resurrected body?

See, I trust God’s promises. I do. But my experiences tell me that not all his promises come true in a person’s lifetime. Hebrews says that lots of people died in faith, waiting for God’s promises to be fulfilled. I don’t want to die in faith. I want to be better here and now so I can play with my kids and hike with my husband and ride my bike again.

It’s like a continuous stream of To be continued… I’m not better today, stay tuned to see what tomorrow will bring.

Why does a lifetime seem like eternity when it’s not even a drop in the ocean of eternity? That’s one thing I try to take comfort in; when I’m dead, all this will seem like a blink of an eye. These endless days of frustration and pain will be a fading memory. Think of how terrible life would be without that hope. I may not have much confidence that in this life, I’ll be whole again, but I know without even an iota of a doubt that the next life holds a body that will never suffer again. I sure wish it could be now, but if not – well, God’s promises are true: There is joy in my future.