What a difference a year makes

It's been a year since I got my diagnosis and what a different place I am in emotionally! A year ago I had never really heard of Ehlers-Danlos Syndrome and had spent nearly 2 decades of my adult life wondering, wondering, wondering why my body reacts so differently than the norm and why I am always sick. Wondering why I have lost much of my strength & have arthritis at 39, why I can't go out in the full sun, why I've never been strong enough to work full time, why my skin tears easily, why i could never lift my own children, why I fight with persistent nausea and infections, why I can't walk across a parking lot anymore and why no doctor ever thought any of that was a big deal. All my bloodwork & testing always came back fairly normal except for an under active thyroid and a couple other vitamin deficiencies.

Chiropractors, physical therapists and family doctors always said I just needed to exercise more and patted me on the back on the way out the door "reassuring" me that everyone is in pain & dealing with something.  I adapted thinking everyone was in as much pain as me all the time... until I was in so much pain that a simple trip to the grocery store or a few yard sales would lay me flat in bed for 3 full days.

I switched primary care doctors on 1.1.14 and I'm so glad I did. My new doctor diagnosed me on the spot with Ehlers-Danlos Syndrome and told me to look it up when I got home, do a little research and perhaps find an online support group. So I did.  I started with quick EDS searches that pretty much explained nothing to me other than it was a connective tissue disorder... and I thought surely I needed a 2nd opinion since I have SO many other ailments, not just ligament & muscle pain.  Then I found multiple EDS Facebook groups and asked to join them all. And after days and weeks of following and reading your candid posts, comments, questions, frustrations and pleas... I came to realize that Ehlers Danlos Syndrome is a complicated and cruel little bugger.  Hard to understand at times even to those of us who have it-- it's no wonder that even doctors have a hard time diagnosing it.

As time went on, I learned more about the faces of EDS through those conversations on Facebook day & night. I began to realize... I fit the description exactly and every ailment I have fits into the EDS puzzle piece. I frequently got chills as light bulbs went off in my mind time after time as I began connecting the dots of my past. I realized, the diagnosis was right on and this group of people was where I belong... the support group forums were filled with people JUST LIKE ME!  No one I'd ever known before was just like me!! Doctors have called me a "tricky case", a little frail, "never seen anything like it", "loosey goosey", a poor healer, or said I'm too young for this.  One chiropractor actually said to me, "There's just a looseness about you that I can't diagnose without an MRI"... to which my husband, Paul, answered later... "I think he just did" ;)

I have never met a single one of you in my support groups face to face, but thank you, THANK YOU from the bottom of my heart for your voices... your beautiful voices. Over the last year I have typed in dozens if not one-hundred questions about the nature of Ehlers Danlos Syndrome and how it affects your everyday lives.  I was in a really dark place a year ago, but each one of your responses to me was like a twinkling bright star against a black hopeless sky. One voice of hope would pop in, then another, then another... and for the first time in my life...I didn't feel alone anymore.  It's an amazing feeling.

I can ask any random question that's on my mind and usually within seconds... there are half a dozen voices (or more) chiming in to help, encourage or inform. Where in the world can you get relevant medical advice so quickly from a live person and especially about a rare disease?  I absolutely love my doctor... but you girls (and the few guys in the group) have taught me so much this past year.  To me it's those voices that have turned me from a confused, isolated, crazed, desperate & panicked woman with absolutely no answers and no leads to a confused, crazed, desperate & panicked woman with a few answers and some friends who understand completely ;) We may not be able to be fixed, but we have each other! The motto fits perfectly, "Individually we stand loosely, but together we stand strong!"

Ultimately, I'm so thankful that God gives us what we need to get through and that he's allowed me to live in an age where we can be connected through the age of these fancy computers.  What would all of our fates be if we lived with Ehlers Danlos Syndrome 2,000 years ago... or just 20 years ago? Maybe reduced to begging for food or committed to the asylum??  It's hard to know, but I am so thankful that God gives me what I need to get though each day... and many days it's you, the members of my support group.  You have helped me more than you know and I have never felt so comfortable in my own stretchy skin.

Developing a Limp

Our church is going through a series called "Developing a Limp" which follows the life of Jacob.  Basically Jacob, known as a conniver, comes to the end of himself and finds himself in an all night wrestling match with God.  During the struggle, Jacob proclaims "I will not let go until you bless me." God blesses him but dislocates his hip as a continual reminder of the unique encounter and changes his name to Israel, which means 'the prevailer'.

So lots of spiritual implication here, but it's also the physical details of the story that hit so close to home for me... My hips partially dislocate many times a day! The pastor asked me and a few others to wrap up the series this week by sharing a quick little testimony on how God is developing our limps, whether physically or spiritually.

So here's what I shared and it is a also brief recap of Ehlers-Danlos syndrome.

I have something called Ehlers-Danlos syndrome. It is a genetic connective tissue disorder that affects the way I produce collagen. Our bodies are made of 30% collagen and it is basically the glue that holds us together. Your ligaments, tendons, cartilage, G.I. Track, blood vessels and skin are all made of collagen. My collagen is faulty, so it is not very strong and is actually somewhat stretchy or weak. So basically the glue that holds me together isn't very strong. It's kind of like being Elastigirl from The Incredibles without any of the fun superhero parts. =)

In fact it is quite painful. People with the type of Ehlers-Danlos syndrome that I have (Type 3) often struggle from chronic joint pain and frequent joint dislocations.  The best way I know how to describe the pain to someone is that it feels like having a sprained ankle that won't heal in every joint in the body all the time. I have a lot of chronic pain every day in my ankles, knees, elbows, wrists, and jaw, however my worst affected area are my hip joints. When I walk my hip joints are partially dislocating with every step and it's very painful. I also deal with a lot of muscle fatigue and weakness as my muscles are working overtime to hold my body together. So I have chronic repetitive strain injuries… Especially in my hands and arms that make fine motor skills like writing, cooking or typing difficult as well.

There isn't a cure for Ehlers-Danlos syndrome except to manage the symptoms with pain medication and aids like braces, wheelchairs and crutches. So I do not walk very well or very fast and am in a wheelchair for long distances outside the home.

So I am frustrated a lot. I have a young family that I'm supposed to be taking care of and I am slowly losing my abilities and I am not yet 40. Ehlers-Danlos syndrome tends to get worse as you get older..... So I struggle on a daily basis with pain, guilt, depression, being overwhelmed with life and I worry about my future as things get worse. Although I have to say God has really blessed and provided for us in a major way. I have an amazing support system – I have a wonderful husband who pretty much takes care of all three of us. God has provided income, occupations where we can work from home and he has surrounded us with very helpful neighbors... So there is a lot to be thankful for.

My goal every day is to find a blessing in the midst of this huge burden. It is not always easy and I often fail miserably sometimes for weeks at a time. And I think a lesson that I am learning from Jacob is to keep wrestling until you get that blessing. Sometimes I feel like I'm stopping a little short and accepting defeat in the way of misery and depression rather than persevering with the Lord.

So I have good days and bad days… physically and spiritually. A lot of ups and downs. But I thought I would share one of my best days lately.

I was driving downtown. I am still able to drive short distances and I love to drive because it's one of the only ways I ever get to go fast! But I was picking my son up at the YMCA and was stopped at a stoplight in front of the building. Some event must have just let out or Signature School may had just dismissed because there were people coming and going, jaunting across the street here and there… teenagers running to catch up with each other. It was just basically a busy scene. And as I watched all the activity in front of me I became very angry. I often get very overwhelmed and realize how disabled I have become when I'm in the midst of "normal people" watching them do all they can do with their healthy strong legs.

I became angry and sarcastically started thinking to myself, "well, isn't that wonderful – that all of these people can walk and do normal things and cross the street and catch up with their friends." I even saw a gentleman maybe in his 60s or 70s walking for exercise with headphones and thought to myself  "well isn't that great.....grandpa's in better shape than me and I'm in my 30s!"

So I'm not in a good place mentally and I know it. Sometimes I will wallow in this kind of self-pity, but that day right there in front of the stoplight I just said a quick prayer, "God, I don't want to be angry about this. I cannot live my life like this in this state of unthankfulness". Honestly it wasn't even that heartfelt of a prayer... But instead of wallowing in the self-pity, I believe God honored me.

Because right there in an instant, God met me and gave me his perspective. Suddenly I was aware of a new insight. Although I didn't hear him audibly, I felt God saying to me "you know, you're looking at all this thinking you are disadvantaged… But I'm here to tell you that it's an advantage. Because if you could walk like all of these people… You would not need me to carry you the way I'm going to carry you throughout your lifetime." So in an instant I had a paradigm shift where God gave me an eternal perspective from his view and it was awesome! Instead of feeling beaten down and low I now felt thoroughly and truly blessed. I knew that he was going to take me through a deeper level of knowing him through all this.

I'm learning that crying out to God right in the moment of suffering and saying, "Lord help me!" Or "Don't leave me until you bless me!" Is that first step in wrestling with God. I've heard it said before that God's love is a perfecting love rather than a pampering love and I feel it.... For he disciplines those he loves. I never want my trials to be in vain. So I try to remind myself to stay over the fire a little longer and find that blessing even though there's this huge burden in my life. It's so worth it because his presence and fellowship when i'm suffering is so incredibly sweet. I cannot even describe it---it's so wonderful. I am blessed indeed and sometimes feel special that God has specifically hand picked me to win his "sick lottery". I would not trade this physical trial for anything because I know that God is walking with me in such a way that I would have never know before.

I don't have all the answers figured out and I still struggle tremendously with my attitude pretty much every single day. Disability is certainly a physical struggle… But the even bigger challenge is the battlefield of the mind to stay positive. But I know that God is good and I don't want to go on without Him.