Activities of Daily Living forms

I am updating my disability file at the suggestion of my caseworker. She recommended that I make a list of all the ways that I am more disabled now than I was a year and a half ago when I first applied for disability insurance. I honestly have no idea why am posting all this because it's so revealing. But I'm getting the idea that when I tell people "I'm having a hard time"… It's just not cutting it and I need people to know that when I have to say no to your invitation, or can't return your call in a timely manner or can't meet with you face to face… this is why. I am not being dismissive,lazy or rude. I'm just trying to survive this cruel condition that can quite literally
take
your
life
away.

:::Ways that I am more disabled now than I was in May 2015:::
-Time in bed lying down has increased to 16–18 hours per day to recover from the frequent injuries and pain
-I no longer drive because it hurts my wrists, forearms and neck badly afterwards
-I no longer go shopping from a wheelchair even when someone else is pushing me due to neck pain afterwards
-Sometimes during flareups, Paul has to shampoo and wash my hair
-I only leave the house for Dr. appointments and occasional family get togethers
-Getting dressed for doctors appointments wears me out
-I feel more angry, isolated and depressed
-On bad days I do not feel well enough to make it downstairs to eat dinner with my family
–I don't do any housework or cleaning – my children and husband do it
-We built a wheelchair ramp onto the back of our house to help me get to the garage easier with less pain and so I could have more access to sunlight
-Paul has to help me remember to take my medications many times throughout the week because I can't "be on top of things" and have trouble keeping schedules
-Paul has to help me tighten SI belt & knee braces... it hurts my hands, wrists and forearms to do it by myself
-My kids fetch things I need and bring them to my bed
-Paul brings me drinks to my bed
-I can't open my own water bottles
-Paul helps me check over the kids homework... my sons school books are too heavy for me to lift (his heaviest book weighs 5 pounds)
-My kids play card games with me in bed so I don't have to get up
-I have to lie down to rest many times a day from the pain & fatigue
-Paul fills out all doctor appointment forms because I can't write without pain
-I feel shaky and overwhelmed when out in public
-Being in pain all the time causes me to think unclearly and irrationally at times
-We no longer spend the winter in Florida because the trip is too difficult and painful for me and I am isolated from doctors and therapists in Indiana
-Although I am confined to my house 95% of the time, I cannot freely go anywhere I want to inside my home – I have to conserve trips to the bathroom, to check on kids, go to dinner table etc so as to not overuse joints and cause more trauma...my joints are dislocating or partially dislocating with every movement
-I can stand for 2-5 minutes depending on my pain level before the pain becomes intolerable
-I can sit for 30 minutes until the pain in my hips and pelvis become intolerable
-I can walk very slowly for 1 minute before the pain becomes intolerable
-I can browse the Internet on a computer for 5-20 minutes depending on my pain before the pain in my neck and/or arm becomes intolerable
-I can use my iphone for up to 20 minutes before neck pain, forearm, wrist and finger pain becomes intolerable
-As I get older, my condition has gotten worse and my limitations become greater with every year- this is typical with EDS

-If I abide by all the limitations on this list, I can keep my pain level between 3-7 on the pain scale. If I go past these limitations and get to an 8 or 9 on the pain scale… It can take weeks or months for that area to get back to a 6 or 7
-My pain is never below a level 3 on the pain scale
-when a body part flares up to level 8 or 9... that body part is unusable for me because the pain and weakness is so bad. It can be unusable for many weeks before it feels better.

Examples:
(Upper body example) In the recent past, I addressed Christmas card envelopes and signed Christmas cards for about 1 hour. During the next few days the pain level in my arms, wrists and fingers reached 8–9. I could not use my hands, to lift, write, type or do other fine motor skills for 3 weeks. Now I make sure to only write for 2-3 minutes at a time and I only use a fluid ink pen that is easier to write with and causes less strain.

(Lower body example) 2 years ago, I did very light housework-dishes, putting away laundry, & sweeping with a broom one evening. I was on my feet for about 1.5 hours. After the pain kicked in a day later… my pain level was an 8-9 for about 2 months. I could only get up to walk to the bathroom and dinner table a couple times a day during those 2 months due to the extreme pain. Now I make sure to stand on my feet for only 2-5 minutes at a time.

(Neck area) About a year ago, I composed a blog entry on my own disability diary blog via talk-to-text on my phone over the course of 4–5 days. The excessive looking down at my phone to edit the text caused severe neck pain for 2 months that caused me to be lying down while it healed for most of that time. The neck pain also included nausea and dizziness. I could not stand up or bend over without severe dizziness. As a result I stopped doing my blog and I am careful not to look down at my phone more than a few minutes at a time.

Listen to Your Disabled Mother

I'm Kristen and I have two kids. Eli is 11 and Winnie is 5. I have a genetic condition called Ehlers-Danlos Syndrome which is a very painful and complicated connective tissue disorder.
     People with Ehlers-Danlos Syndrome have a defect in their collagen producing gene. Collagen is like the glue that holds your body together and makes up things like tendons, ligaments, skin and blood vessels. So basically my "glue" is defective, very weak and does not hold me together well. EDS causes a whole slew of painful problems throughout the entire body but one of the most notable is frequent joint dislocations. These can happen in any joint and for me they happen every day. So when I walk my hips are partially dislocating, coming apart with each step so needless to say it is quite painful and frustrating.
    With that said, when thinking about what I wanted to say for this event… I struggled with narrowing down a topic of conversation. I could literally talk for hours just about the pain symptoms alone. Or I wondered if I should I focus on the isolation of disability and being bound to a wheelchair. Or maybe the guilt of not being able to play with my kids or take care of them the way I once did.
     But today I'd rather not dwell too much on the bad… I realized that if I was given 5 minutes to speak to a large audience about motherhood and disability, I didn't want sympathy tears... I would rather be able to encourage someone. So here are a couple of insights I have learned along the way as my health has declined.
    The first is a message that probably hits home with overachievers, perfectionists and probably most moms to some degree…
     Sometimes less is more.
     The modern-day idea of the 'Supermom' is such a facade as some of us have found out the hard way. I used to push and over schedule my kids and never sit down because… What a waste of time! But a funny thing happened to me...most of my physical abilities were gone by the time I was 35 and yet the world still turns and goes on without me.
     I remember being in the kitchen recently with my 11 year old. My heart was so heavy with guilt because it was beautiful outside and I couldn't take them to the park or even go for a short walk with them. I said to my son with sad eyes, "Eli I am so sorry that I can't take you guys out to do fun outdoor activities like we used to." And he kind of looked at me confused and said, "Why?" And I said, "... Well, you know I just can't get out and about like before..." And he just shrugged his shoulders and said "Oh, ok" got up from the table and skipped away unharmed. And for the first time I realized, it never occurred to him that he was missing out or that I had failed him miserably.  Doing less was not a problem for him. Yes, I do wish we could get out more…  but we've replaced adventures & outings with family movie nights curled up on the couch, listening to records, and playing board games from my bed when I'm not feeling well and that's OK too; maybe even a better to have a slower pace in life. Our family time is much sweeter as this "tragedy" unfolds and I'm learning it is quite possibly a blessing in disguise. I have had to slow way down, let go of the guilt and realize that I am exactly the kind of mom that I'm supposed to be, because there's just nothing I can change. And I would just like to encourage every other mother out there...especially young or insecure mothers.... You are exactly the kind of mother you are supposed to be, too.
     The second insight is a challenge to reach out to someone in your life that is shut-in. Whether it is a family member with a chronic illness, an elderly neighbor, or a friend struggling with an invisible illness or mental disorder. I am SO fortunate to have a fantastic doctor and an amazing support system. I have a husband who's THE best Mr. Mom/slash caretaker EVER and my family is nothing but supportive. But that is the exception and not the norm for many other sick and disabled folks. I've had the opportunity to meet some amazing individuals through support groups with disabilities of all kinds. Sometimes the symptoms are different than mine, but the struggles are the same… Being chronically ill is a HUGE burden. We, especially, need others to help us get through this life, and although I have been hugely provided for… unfortunately many others are often forgotten about or left behind.
     My husband often mentions the teaching of Jesus in Luke 14. Jesus states "When you go to luncheon or dinner, do not invite your friends, your brothers or relatives, or your rich neighbors; if you do, they may invite you back and so you will be repaid. But when you give a banquet, invite the poor, the crippled, the lame, the blind and you will be blessed. Although they cannot repay you, you will be repaid at the resurrection of the righteous." I know from personal experience that even something as simple as sending a card, stopping by for a short visit or sending a quick email that says "how are you doing today?" means so much to someone who is chronically ill.
     And the final insight is .... Feed your spirit. I'm convinced that our souls are the only things that will last forever and the legacy that we leave will depend on how we treated others. The book of Galatians says that the fruits of the spirit are love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. And with a glad heart the last time I read this, I realized that none of these qualities require physical strength, vigor or coordination while walking.
     As a friend of mine pointed out to me recently as she was pushing my wheelchair… "We're all heading where you are Kristen... You just got there a little faster". For me especially, it's easy to see that our physical bodies just aren't meant to last forever, so be sure not to ignore your spirit.  Nourish it, seek wisdom, pray for peace. Slow down, be kind, love others deeply and know that you are a great mother.

So much pain, so much beauty

I'm often surprised when people ask me if my condition causes pain. Most days it feels like someone beat me up in my sleep… But because the condition is invisible… no one can see the damage. This image does a good job portraying what my body feels like 80% of the time... Except that the lower extremities are affected just as much. This image also does not represent the horrible G.I. symptoms, nerve pain, migraines or unbelievable weakness.

I don't take any pain medications for my condition because they're problematic and cause other problems for me. So what do I do about all this pain?  It's hard. My nice family lets me rest as much as I need so I have a lot of down time to recover, think, stare at the ceiling and recently I've been listening to lots of music.

Sometimes I feel sorry for able-bodied humans busy with the hustle and bustle of life, because with my slower, cooped up pace...I listen to lots of music... Sometimes for hours trying to soak up every good bit. So far, it helps me more than pain medication. It's healing for the body AND soul. This might sound crazy, but I think music sounds even better when you're sick or hurting. Imagine when you are feverish with flu and you have that crazy, slightly irrational mentality??? When you have chronic pain… You are always flooded with that same heaviness, dread and doom in the body. You are desperate to cling on to something beautiful and good. So for me beautiful music resets my well-being and helps me in a way that pain meds can't. Ultimately it's God touching down in my life which I am so thankful for. Even when the lyrics don't explicitly worship him... They don't need to for me to know that he is there & hasn't left me sick and alone.

Here's what's on my playlist recently: Nick Cave, New Romantics from the 80s, British invasion bands, Larry Norman, The Beatles, Tmbg, the cure, bob Dylan, Johnny cash, wings, Steve & Charlotte from Calvary, rem, Mozart, the beach boys, early century folk & field recordings, spirituals, & I recently had an unexpected worshipful experience recently with 'devil went down to Georgia'.

So what music transforms you?  I would love to stumble on to something wonderful post 1990s ;)

"I'm moving in with you" -pain

Let me just start off by saying that I have so much to be thankful for. What I am going through physically is pretty grim at times, yet I feel an overall peace in life as I come to a place of acceptance. And as I have always known and am realizing by leaps and bounds lately is that I have a treasure of a husband. And that is a huge understatement, people.  I will have to go on & on about him sometime in a later blog entry but for now I have so much running through my brain.... I have to just get it out.

For now, i'm battling the day in and day out struggle with this demon called chronic pain. It's enough to make a person crazy and it's a lot to deal with. It's hard to even know where to start...some days are really dark... but here goes:

The novelty of my diagnosis has worn off. I learned I had a rare disease a little more than a year ago and in that time I busied myself with learning as I sorted and pored through tons of new information. I also met others with the same disease, joined support groups, ordered countless braces for bendy body parts, had a million dr and therapy appointments and cried many tears in between.  I usually had some kind of emotional breakdown every 12-24 hours the first couple months when I realized I would never get better. Finding out that I'm a medical zebra (rare) was awesome & liberating. Getting connected with others... amazing! Discovering it wasn't all just in my head... what a load off!  But over time, I find myself dealing with the flip side of the coin as the newness wears off. Yes, Ehlers-Danlos Syndrome is a connective tissue disorder, but in layman's terms the translation equals overall body pain that hurts worse every single time you move until you can't stand it anymore. It's a nightmare for anyone, but especially hard for this type-A homeschooling, previously organized business woman-mama with young kids.

I've already lost so much... and how much worse will it get as I get older? I know that I will never be able to walk across a beach with my own feet, take my kids to the zoo, open a vintage store, go to the grocery store by myself, hike through nature, cook for my own family, ride a bike, work hard at something, sew, paint, draw, carry my 4 year old in my arms, take care of others when they really need help, plant flowers in the spring, propel my own wheelchair with my own hands, visit friends or family with stairs, piece together this blog without having crippling pain in my hands (thank God for the talk-to-text feature on my phone, but all the editing still hurts) or have a life (or a day) without chronic pain.  It is a lot to process every single day and many days I really struggle.

It's also lonely to have a chronic illness. No one really wants to hear how bad you feel all the time or if I do get a lucky soul that will entertain me for a bit... I end up wearing the poor person down as the biggest Debbie Downer that ever existed. I find myself just answering, "I'm fine" when people ask me how I am as I hold all the yuck in to myself.  It becomes a big burden to bear alone. It is a lot of yuck for one person to deal with, so I'm hashing it all out in this blog in hopes that it will be therapeutic.

*Disclaimer: Usually I've tried to keep my blog entries light and up lifting with a happy little wrap up at the end, grammar double checked, transitions well placed… but sometimes, my days are just ugly and not tidy in any way.. so I'm trying to just get it all out rather than proofread too much. So bear with me if these posts are not fluid.  My brain feels very scattered a lot. Also, I DO try every single day to focus on what I CAN do and I feel VERY thankful for those things. I can see beautiful colors & sunsets, hear my kids laugh, smell the orange blossoms at my Florida house and eat bacon of all things despite having the horrible GI symptoms that come with EDS. I've also realized that the best thing I can offer my family as the mama is a good, cheerful & confident attitude full of encouragement & seasoned with love.  It's the only thing I have to offer them and I do it proudly. Currently we joke around a lot... and Paul makes fun of me and my "Ted Danson Disease" often and oddly it seems to be just the right kind of medicine.  (If you know him, you get it). But there are some really dark moments of grief & loss that hide behind smiles and the daily routine that I just need to get out so please bear with me as I show off that side a bit.

So... back to me & my pain ;).....
Every day I walk a fine line between pushing myself to do what little I still can and being careful not to do too much or else it makes my symptoms worse. And the line changes from day to day to keep me guessing.  Can I type for 10 minutes today... or will it be 20 or have I now just overdone it? Can I walk to my refrigerator AND my front porch to get the mail right now... or should I not chance it and stay with just visiting the frige? Normally, I don't know when I've overdone it until the next morning when I wake up & can't move. The frustration of not knowing when I'm overdoing it is enough to make me want to rip my face off! I often say, the disability is one thing... but combined with bucket loads of pain is just too much to bear some days... it's a double whammy to the spirit & body.

There are so many different layers and kinds of pain that I experience over a given week. First, I peel myself out of bed then the pain begins.  I start the day with a dull roar of overall "bruised feeling" body pain that never goes away and feels like you've been hit by a Mack truck or been in a skiing accident or perhaps beaten with a baseball bat or pulled apart with a crowbar.  Then there's the trembling, shaking and weakness when you're getting close to your limit of exertion which usually sneaks up on me by midday from hobbling though my house to check on people doing their schoolwork, chores, work/etc. Then we have the pins and needles, burning and stabbing sensation around whichever joint I have just strained....usually in 4 or 5 different areas every day by afternoon. And when things get really nasty after I've REALLY overdone something, like trying to go to 2 maybe 3 yard sales with my own legs sans wheelchair, it feels like I've been clutched in the claws of the devil himself. That has only happened to me about 7 or 8 times in the last few years.  It takes me a couple months to recover from those spells every time and it's enough for me to say... ok, pain, you win... I will never try to walk that much (or little) again. I often feel like I'm trapped in a prison in my own body.

So I am always trying to underdo it, conserving my activity, saving back energy and constantly being smart about every single movement I make with my joints (The Spoon Theory describes this more perfectly than I can). We have examined, streamlined & simplified our homelife survival skills with the help of my exemplary problem solver husband. It sounds very "responsible" but errs on the side of white trash if you ask me. If a task can be done by someone else, I enlist help.  If it can be eliminated or postponed, we seriously consider it. We're talking basics here like grooming, meal preparation, house cleanliness, & yard maintenance but it seems to be working.

So here I am with my pain 24/7.  Me and my little buddy.  When I first started having substantially more pain a few years ago I was so panicked & felt like something MUST be done to FIX THIS NOW!  But as time's gone on... I've made room for the pain as I realize no medication or therapy really helps. I always think about the classic SNL/Chris Farley skit where he plays a motivational speaker living in a van down by the river. I think of the pain as being my "little buddy, my pal, my amigo" that's packing its suitcase & moving in for the long haul. Pain says, "I'm gonna be your shadow... here's you... here's me.  There's you, there's me...."  and finally... "I don't give a rat's behind 'cause i'm movin' in."  I don't like it much, but there's just not a whole lot I can do about my friend that won't leave.

I remember before I got my diagnosis, I would stand in front of my bathroom mirror and look back at myself wondering what in the heck was wrong with me? I would just stare into my own eyes with black circles under them and wonder "if I could unzip my body, what would i see?" Black tumors? lesions? grotesque growths? bruised organs? Discolored blood or bile in abnormal colors running rampant?  When I saw this many months later on my online support group... it captured well what I thought might be inside.

I'm not sure why, but I hate sharing memes on Facebook.  I guess I'm just not a meme-sharing type person, but also the font selections & graphics are sometimes laid out horribly. Hey, just being real here.  But here are a few that I like that get the point across while I'm in the meme sharing mood:

(Regarding  the zombie designs, cute, but so jealous that the Walking Dead zombies can RUN when hungry... what gives?)

Needless to say, it's been a profound situation for me. All this has made me question my faith. A lot. I have to wonder why God would do this to me or anyone. What's the good? My world is so very small. I'm so shut in that most opportunities to be with people have been taken away. Isn't Christianity about loving people, rolling up your sleeves and serving others and not yourself? Why would He do this? My energy and resources are so limited that I can never be on the giving end. I'm always going to need help. Why, why, why???!!! It makes no sense to me at all.

I think without knowing it I wrestle with this concept deep down every day. My spirit feels like it's churning some days as this old body lets me down.

A few days ago, I decided to read 2nd Corinthians 5 verses 1-10. I was desperate to read something about heaven because the world down here does not sparkle brightly for me anymore. I have to include it all here because it's just so good:

"For we know that if the tent that is our earthly home is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. For in this tent we groan, longing to put on our heavenly dwelling, if indeed by putting it on we may not be found naked. For while we are still in this tent, we groan, being burdened – not that we would be unclothed, but that we would be further clothed, so that what is mortal may be swallowed up by life. He who has prepared us for this very thing is God, who has given us the spirit as a deposit, guaranteeing what is to come."

"Therefore we are always confident and know that as long as we are at home in the body we are away from the Lord. We live by faith, not by sight. We are confident, I say, and would prefer to be away from the body and at home with the Lord. So we make it our goal to please him, whether we are at home in the body or away from it."

And then this all kind of makes sense. Not really in my mind, but in that bit of bright, burning beauty of the spirit that God has given me as a down payment for something bigger and better down the way. I don't know why I can't help people and why I will be a burden physically and financially to everyone in my life. But I have seen enough of God's goodness in my lifetime to deny it. "Thou he slay me, yet will I trust Him" as Job says. And if I do wrestle with those thoughts, doubts and emotions… I have to end up on the side that believes there is something better than the things we can see and understand and that everything happens for his good purposes. If I look around for sweetness, I will find it. God is sustaining me, providing for all of my needs (and they are many), and giving me an underlying peace in the midst of a bleak situation.

And if you believe in heaven and daydream about it like I do, then this meme is perhaps the corniest of all and a huge understatement, but here goes:

Now excuse me please while I go alternate heat & ice on my wrist & elbow.

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.