On Community and Stories

It wasn't what we had planned, but that seems to be how life works. The coffee shop was busy, as it was the start of Apple Blossom Festival, but for three hours on Saturday it was home for us. Within minutes of arrival, the first sips of lattes started and we found a table in the back of the shop. I looked across to her, so many questions in my eyes. It had been months since I'd last seen her, and those months had been hard on both of us. Some things the other knew about, but so so much we hadn't shared - or couldn't bring ourselves to. However, we were together for the afternoon.

She didn't get the chance to see Fridays keynote, so I pulled up some of the women whose stories would impact her the most. Sipping on the oh so good lattes, we watched and started to talk over the phrases which meant the most.

In learning others story, we learn perspective...
Let your pain have a purpose...
We present what others want us to see and not the burns. The "new pretty" is showing the scars too...
Friendship begins when we can say "me too"...
In telling my story, it gave a change to look at other people and realize everyone is longing to belong...
Sometimes we buy into the lie that our story is not important, not interesting..
God uses all of our experiences, nothing is wasted...
Your words can bring healing. Your words can bring life. Let your pain have a purpose. Don't hide your story...

We talked about the new church in old town Winchester. She helped with worship team and her husband ran the sound. The church met in a bar and every Sunday had been filled with those who need God so desperately... homeless, those in recovery, those who are on their knees. Her story is there right now, ministering. Before that point, it was working with children at church and as a foster mom. But right now, it is in the church which meets in a bar (I do love that!) She seems to be surrounded by people and has a flesh and blood community

Silence reigned for a bit as we listened to the keynote for Saturday. I had put out the materials for our jars and between listening, working on that, and taking notes, we were quite occupied. At one point, I shared about the online community I was part of with (in)courage, the Wives Without Children group I had grown so attached to. We talked on my job at Bridgeway Homeschool Academy and the family of employees who connect via Skype every day with each other and through phone, email and Facebook with our precious families. It deviated into the close knit group of online gamers I hang out with in a virtual world every evening. I've met so many of them face to face. I am the diplomat there, the one who smooths rough edges, engages them in conversation, gets stories going. And yet... I have no community of those around me. Flesh and blood close by to visit with. They are not there. After years of rejection, I've given up. Even with so many online, just a couple of clicks away, I feel alone. So different, she and I.

And the doubts started up.
We need a heart broken for community and not by community (does it have to be in the flesh? Because I have such an amazing group online. I make sure to talk to strangers, to smile at them when I am out in our town... but does it matter?)
You are not alone, we need to hear your story (I blog, I talk to others. Some hear the story of living with EDS while homesteading and seem amazed - yet they seem so far away and so few)
There is beauty living in your now (and fear, and failure and all those things which hold us back)
The value of loving is the value of being the body of Christ. (see previous post on how that conversation has gone in the past. At least it was a positive one).

We talked through those. She had her side of the coin as well, the needing to share and yet holding back. Then it happened, two phrases which grabbed me and held me the rest of the time. I don't remember much, other than fighting tears. Her husband had arrived at that point and it was a bit chaotic. They were talking privately and my jaw was clamped tight.

If we are struggling and not saying anything, that is when sin can fester... Oh, yes it can and it has. I'm posting about the physical disability at times, but holding back the mental aspects. I live where my spouse suffers from a mental illness and metabolic disorder. There is so much struggle which isn't said. I'm not the strong one so many think I am. There is sin festering and I have to face it daily.

Freedom comes when we care more about pleasing God versus pleasing others... Yes, it does. I need to go back to this point. There is a line between being the "diplomat" in the group and doing or saying what is pleasing to God and not them.

So, as we parted for the day with lots of hugs, I kept thinking over and over.
Do I risk fracturing my lifeline, my online community, by showing that struggle and doing more of what is pleasing to God? Am I strong enough to step into the local flesh and blood world and risk being stomped on again? Is this story one which can influence others? We shall see...

#InRL #(in)courage #EDS #community #onlinecommunity

To Stop and Think (cross post from Good Friday)

 Sitting here, thinking about the price which was paid on this day. Thinking about the conversation I had with my "brother" down in Norfolk at 2am just this Monday. He was asking about why I have this heart that lets me get stomped on and how I keep going. He was asking why I let others lie to me and I still love them anyway. He kept pointing out all of the reasons why we were sitting there on the headsets and voice chat, settling me down from a moment of weakness when I did lash out. 
I told him it was who I was. From my earliest memories I wanted to help people and it is the core of my being. Alex then asked "Sis, does it have anything to do with your faith?" I told him that faith has made it possible for me to keep wanting to be the diplomat amongst our friends, to keep wanting to help others when I can barely help myself, that my belief in Christ makes it so I can look at others and my heart breaks with desire to help them however I can. It makes it so I don't care about specific "sins" or point out verses constantly used out of context... because it isn't needed. They know I am different because of that Love which is in me and how it enhances what was already in my core... that desire to help. No need to "preach" because love says it all.
Alex was quiet for a long time. He had just started to have the desire to be inside of a church a couple weeks before. He admitted then that he didn't understand how I could keep taking such a beating, and if it was my faith which kept that desire going, then he was here for me when those weaker moments happened. 
So, now I sit here and think about Him hanging and bleeding. I think about Alex and my other dearest online friends. And I stop my activities for the day, and say thank you.

On Forgiveness (part 1)

It was the strangest sensation, sitting across from her in Applebees once more. Could it really have been that over three years had passed? Oh how I had missed her! I looked to my left and another dear friend had joined us. Flashbacks of Fridays here, of caramel and shared appetizer platters, of laughter and tears. It was just like old times, right?

Not quite. See, three years ago something went wrong. I had been ill and there had been two years of conflict with an administrator who had been caught in a series of lies. I was also getting ready to move and the drive to "our building" would turn tedious. Though there were tears of sorrow and anger, I resigned as a full-time teacher. At the same time,my friend was elected PTO president and would be working right alongside that same administrator, as well as her own teaching position. There wasn't tension at first. I helped her mom move and then she helped me move. My goddaughter came to stay for another summer. Even though finances were tight, and I knew they were going to get a lot tighter, the goal had been for the teenager to have a great summer. But then, I messed up. It didn't seem like a catastrophic event at the time, but I guess it was. One comment, the day after a trip which did not go as planned due to miscommunications, and that was it. The silence was confusing, but once I found out why, I thought the issue was resolved. It wasn't. A harsh reply to a question I asked and my words from there made the break.

And I missed her. And the reception when I visited the building was cold on that side of the school. Hugs came from all the rest and questions about the now broken trio came from some. My sadness had to have shown in those moments.

But time heals. Slowly, conversations started back up. At first, they were supervised by the third person in our triangle of friendship. Then, she cornered me in a hallway in November of 2012. We talked for over an hour, though my guard was up the entire time. Some emails and texts were exchanged. I saw her again during a spring visit and more conversation happened. A bit of the break healed.

It was this August when real healing began. I was again visiting the building -handing out hugs and catching up. Hers was the last room in my circuit. I was greeted very warmly, told of her great news and we celebrated with a little dance. She surprised me by inviting me to the wedding right there on the spot. People were coming in and out of the room, but the moment it was quiet she turned to me. She always could read me so well. She demanded to know why I was pale, why my eyes looked like I was dying. I told her of the struggle at home, told her of the diagnosis Owen and I were facing.

And she took me in her arms, she rocked me back and forth...and we cried. Cried for lost years, lost support for each other, lost laughter and more. We apologized to each other and said it was time to heal.

Four weeks (and one beautiful wedding) later, the three of us were back in our stomping grounds.

Forgiveness. It is such a powerful word. It is one that, when present, can heal and build and grow and be shared. When absent, the dark abyss it causes can grow like a cancer. Bitterness, confusion, sadness and more will suck a person farther down. Please, no matter how hard, make forgiveness your ultimate goal. Maybe it won't work out like you planned and the person won't accept the apology. Maybe it is someone you need to forgive but can't say the words. Let actions lead the way then. Don't let it sink you. Another post will follow this one...and it is about 2 people who were in that hole. It will be about two people who, on one very unexpected afternoon, found forgiveness...

On Ehlers-Danlos and Me (part 2)

Thank you all for the warm reception of my first post on EDS! Please, make sure to comment on the blog as well as in the awesome private messages you send. Here is the promised part two.

I was out of the country a few weeks ago. It was the first time I had traveled out of the country in seven years, and things were a lot different back then. I had only dealt with strange swelling, tendonitis and some internal issues. Now...now things had changed. I've sub-located a handful of major joints and, recently, started popping minor ones. With the fresh-out-of-a-plastic-cast left hand, the lymphedema and auto-immune issues to boot, this was going to be hard. We travel throughout the USA all the time, but another country was another story. Trying to be prepared for various situations and only being allowed a solitary bag means careful planning. While others were talking about the extra outfits they were bringing, over a third of my bag was medical supplies and clothing options were limited. I didn't mind, as this was a great opportunity to prove I was able to move farther beyond the boundaries my doctors had set. Not a single one had been told of the trip! But then it happened, on the third day, despite my best attempts to hide the increasing swelling from the humidity, despite thinking I was doing so well at keeping up with the others, despite the pride at not using the cane...someone said something that cut deep. I was accused of letting "my disability stop me from being a world traveler" like they were. I wasn't even given the chance to respond about how, when we travel, we mainly tent camp instead of staying in hotels. By the time the trip was done, I was needing the cane, the ankle brace, and most of what I had packed. My attitude was not the best due to the pain either. However, I made it!

I had planned a totally different blog than this one, but I can't seem to write out that version. It was too basic. So, I'm going to build on the last one and hopefully help people out there to understand a bit more. Just as we had known for quite some time that things were "not right." We also knew that movement in general was something to be watched. As I've gotten older, like most EDS patients, simple actions have to be thought over. My hip dislocated while picking a band-aid off the floor. Ten days and six sub-locations of my right shoulder started with installing a faceplate on an outlet.

My morning starts with checking for pressure points or pinches from the night, due to fragile skin, and then putting on compression garments for the lymphedema. Anyone who has dealt with this disorder knows it is like fitting a size 10 into a size 0. I've popped a knuckle out of joint while doing so. It also was to blame, in partial, for the sub-location that led to the plastic cast (which caused four pressure marks, one that broke the skin.) From there it is breakfast, which is made solely of anti-inflammatory foods, or ones that are not known to cause inflammation. Since pain management is a joke if you don't want to be sedated or put on heavy narcotics, every meal is thought out to make sure I'm giving my body what it needs to battle.

If it is at any point in the growing season, our crops will need some kind of attention. I have lost count of how many times twenty minutes of gardening has caused twenty hours of pain. However, if I am very careful, an hour of work can be done with lesser consequences (notice I said "lesser.") Processing those foods should be out of the question, as hours standing to do so are painful. Standing for more than a handful of minutes is generally painful - due to the lack of arches, supports that work only when my body feels like letting them, and the numerous back issues. I will never give up growing my own foods though!

 Then, there is my contract job for Bridgeway Homeschool Academy. They are very accommodating, as it takes me a bit longer to do things, because I'm using adaptive equipment like speech to text software and the adaptive mouse. Finger taping, wrist supports, special seat cushions and such are also used. Frequent stretch breaks are needed, and I have to do daily physical therapy either at the house or with a proper therapist. It all depends on what is currently messed up. Even therapy isn't safe though, as I tore up my ankle in water therapy! Errands used to be done solo, but now I have one of the teenagers I mentor help me out. He pushes the cart and lifts heavy stuff up and makes sure I am staying calm. When I start to really wear out, he firmly lets me know that it is time to quit for the day. It would be almost impossible to do many of the errands otherwise. He is a God-send!

Making dinner sometimes requires help, as prep work can be too much when something is flared up. I make meals in large batches, so leftovers can be used on bad days. Keeping up with the house is a constant battle, because I'll move wrong, or pick up something too heavy, or push beyond what common sense (what is that?) tells me I should. Sometimes, it is just that the pain is so bad that little can be accomplished. The evenings can be used for crafting projects if the pain isn't intense. Otherwise, I use the adaptive equipment to hang out with friends online, or I rest elsewhere. I hate it, believe me, with all my heart I hate it.

The day ends like it begins. Off goes the day compression garments and a check for marks happens. I get them fairly frequently. Night wear in form of light compression sportswear or compression bandaging is put on. Lots of pillows and a spouse who understands if I need to prop up on the couch ends the day.

Was this written for sympathy, absolutely not. As stated before, it is so more people out there might know what someone with a chronic disorder like Ehlers-Danlos goes through. I am very blessed to still be able to garden and do light things around the house and I know it.
#ehlersdanlos, #ehlers-danlos, #lymphedema, #travelingwithehlers-danlos, #dailylifewithehlers-danlos,

On Ehlers-Danlos and Me (part 1)

This post has been a long time coming...as in my entire life. I've been thinking it over for several weeks - while in a custom made upper hand and finger brace. Now seems as good of a time as any. I have Ehlers-Danlos Type 3. There, I said it. The journey to getting that diagnosis was a long and painful one, but we now know "what is wrong with Holly." That is the focus for Part 1 of this post. Part 2 will be on the day to day life of living with EDS.

First, what is Ehlers? Wikipedia has the most concise definition: EDS is caused by a defect in the synthesis of collagen, specifically mutations in the COL5A and COL3A genes. The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. Depending on the individual, the severity of the mutation can vary from mild to life-threatening.

Type 3: Affects 1 in 10,000 to 15,000 and is caused by an autosomal dominant or autosomal recessive mechanism. Mutations in either of two separate genes may lead to this variant. Joint hypermobility is the hallmark of this type, with less severe skin manifestations. Joint instability and chronic musculoskeletal pain are particularly prominent in this type. Patients with the Hypermobility Type experience frequent joint dislocations and subluxations (partial/incomplete dislocations), with or without trauma. As a result, pain is a common, severe, and a lifelong symptom of this type. Additionally, osteoarthritis is common, and many get it earlier in life than expected.^[4]

Like a typical EDS type 3 patient, my childhood only showed mild warning signs. I scarred easily. My ankles were weak and prone to tweaking when I ran, but rarely to the point of a complete sprain. There was an incident where my left elbow had been popped by my brother and took many weeks to heal. It kept sub-locating and the ever-patient school nurse kept giving me ice and calling my parents. However, they didn't realize what was really going on and the joint stabilized in the two months it took for them to see I really had an issue going on. A bad case of tendonitis in my right hand was next, and it essentially killed off my senior year hopes of a career in music. I barely could make it through the final recitals. Raynauds disease, IBS and a few other things started manifesting itself when I was a teenager, but again...no one really understood. I don't blame them. I was an active child physically and mentally, so youth and activity held things together...enough.

It wasn't until I was in my 20's that the condition started to rear its head a bit more. My arches collapsed, starting a trend of pain in my back until inserts were made. The pain only diminished about half. My hands started having increased pain, even with something as simple as holding a pen to grade stacks of papers. It was when my right hand suddenly swelled up and stayed swollen that the endless line of doctors started. Misdiagnosis after misdiagnosis happened. Doctors kept shoving me into boxes that didn't fit, and I wasn't going to stand for it. I'd take a break, wait for something new to go wrong, and try again. It was during this time that I found Dr. Hannah Phillips aka "my angel doctor." She was facinated by what was going on and became very determined to find out what it was. We started with the label "mixed connective tissue disorder of unknown origin" and started from there. It was hard to pick apart symptoms at first. I have a mild auto-immune condition going on as well. Then the first big event happened....I dislocated my hip. We found a hemangioma next to my spine while investigating that dislocation and my increasing back pain. Degenerating disks and slipped vertebrae were found too. Using family records on top of my own (many of the scattered ones she tracked down herself!) she narrowed it down enough to send me to a connective tissue specialist. The terms Marfans syndrome and Ehlers-Danlos were learned in the coming months. After more tests, I didn't fit the Marfans profile or the more severe EDS varities. So, the specialist did a skin biopsy. More accurately, he -tried- to do a biopsy. My skin and connective tissue were so fragile that the site collapsed, three times. He finally got enough to send the samples off to a lab in California. On my way out, he said "If this isn't Ehlers, I am going to be very surprised."

As we waited, the hip dislocated a second time, the back pain was daily, and the left hand became inflamed with tendonitis. Dr. Phillips did all she could to help me through that and the other "crash and burn" symptoms of someone with both an auto-immune condition and connective tissue disorder. By now she was practically begging me to quit teaching full time. A series of events took place around that time and she got her way. While I started substituting, she started trying to find out what happened to the test results...with no luck. A year and a couple more injuries later and I was finding it hard to even substitute teach. She was now getting onto another of her "hell or high water kicks" (being 8 months pregnant can do that!) and almost two years had gone by of us trying to track down these results. The specialist didn't want to repeat the test, but would if one final push couldn't locate it. Well, she found them, and not in California like they should have been. They were in a lab in Washington state and the results were that I had Ehlers and it wasn't the bad vascular type. They wrote down that it was likely type 3. The timing was perfect, as I had just sub-lux'd my shoulder 6 times in 10 days! Thus ends Part 1 of "Ehlers-Danlos and Me."

#ehlersdanlos #connectivetissue #misdiagnosis #ehlers-danlos #jointdislocations

On Where I Have Been

Was it really April that I last sat to write here? It isn't that I haven't popped in to snag a link or look at the dashboard to check on my other blogging friends...I just haven't sat right here. Why you might ask?I have been a bit of everywhere since then.

First and foremost, there has been my job. I LOVE working for Bridgeway Homeschool Academy, but there were lessons I needed to learn about working from home. Simple things like getting up and walking away at a certain time or understanding that not all of ones self-made checklist of "things to do" can be finished in a day. Providing great service to my families was going beyond the normal workday - by a long shot. Oh there were plenty of excuses. I use adaptive equipment, so that means some parts of my job take a bit longer than others. There are students who were more needy than others and really just wanted to call to chat. At times I spent more time being an ear to bend than I probably should have. When grading the never ending list of essays, I'm one to make commentary - even though most of my students never read it.

The need to learn when to focus on work and when to walk away started to become really apparent when Owen and I went to Indiana. I was so stressed going into the trip. He's not one for packing and preparing for our travels, so the burden lies mainly on me. It was the start of early re-enrollment season at Bridgeway and I was tied to the phone and computer with families wanting to take advantage of the tuition discount. There was much weeping and gnashing of teeth up until we left. The phone and netbook came with me and in near every break at our hotel, I was checking emails, grading essays or returning calls. Not much fun was had. Only when we were at the Indianapolis Zoo, and then in Ohio meeting one of my dearest online friends, was I relaxed enough to have a good time.

That trend kind of (okay really) continued all summer long. I was back in lymphedema bandaging therapy the moment we returned from that trip. Doing much of anything when a leg is in foam and four layers of stretchy bandaging is hard. I was gardening, doing all of the errands, setting up a "team" down at UVA Medical Center (primary care doctor demanded it), and working many more hours than I should. The novel took a back seat...both of them actually. Sleep kinda did the same. July hit and I was a mess. I was supposed to be resting more and doing more physical therapy and it just wasn't happening. The phone and netbook came with me to NJ too. I was visiting a friend and had to snag a wi-fi connection to send out things that really could have waited. It needed to stop...and it did.

Somewhere along the way, between the trip to Indiana and my solo run to New Jersey I decided it was time to learn, really learn, how to work from home. Those first weeks were a struggle. Learning to let some items go until the next day was hard. Saying "at this time I am logging from the work sites" and actually doing it is a work in progress. Moving my Google voice number to turn on later and off sooner so I was more aligned to my co-workers hours made me cringe. Not checking the email multiple times a night was another little lesson. Asking to cut back on my student load because my hands could not take it even with the adaptive equipment was a serious pride swallowing. You know what? My supervisor said she knew it was coming. She saw I was above my head and said it was just fine.

The novel is getting back on track. I might not make the deadlines I want, but there is hope. Midnight to Morning is getting some promotion time and made the move to its new printers (those wanting to purchase, hang on a couple of weeks as the price for the paperback is going down!) I've started exercising a little more, the garden isn't as neglected and I am the master of preserving foods. Really!

The ultimate test was the start of this month. Owen and I went to VA Beach to see our friend Alex. He's in the Navy and was starting his third re-enlistment with an instant big assignment. So, we spent a day with him and then one at a museum and yet another at the beach (despite spending the morning in Urgent Care.) We tent camped and guess what? No phone. The netbook came with me, but only so I could work on Sunrise to Shadows. It was wonderful. I came back refreshed and ready to keep working on this new system.

That is where I've been. Now let's see where things go!

On The View from Inside

It was Easter Sunday and we were sitting with his family at the church his father pastors. It was time for the homily and I sat in anticipation. Philip is an amazing speaker and what he says leaves me thinking for hours afterward. This was no different. He talked about when the women went to Jesus' tomb and the angel telling them "Why are you looking for the living among the dead?" He said it was like someone taking a look and going "nothing much happening there." He then mentioned Jesus' followers reaction to the women. They doubted and basically told them to stop making things up. The sermon went on about the perception of "nothing much happening" when Peter ran to the tomb. Why didn't he go inside? What would have happened if he had? I was pondering a lot and missed a few minutes when Philip challenged us. The challenge set of an electrical storm in my mind, which has sat with me for days. 

Are Christians in the tomb looking out? Why? What do we see from the inside looking out. The rest of the world is looking in. Are they saying "nothing much happening there" and walking away? Yes, too many Christians are in the tomb. Some are not even bothering to look out. Why? Because it feels safe inside those walls. Surrounded by stone and the moment death was overcome, we have the basis for our faith all close. The walls are our various interpretations of His word - barriers that blend the Old and New Testaments instead of making the distinction of when the miraculous moments of His birth and death occurred, and how His words and actions here on Earth should be the guide for how we live. Inside the tomb we don't have to accept what is outside. We can point fingers at it, quote interpretations at it, race out and grab a few people or give a few handouts so we feel better, and then huddle back inside where it feels safe. I know this because I used to be that way. I used to make sure I was surrounded by just believers and tried to shut the rest out. Part was because I had been a bit sheltered growing up and it scared me- mostly because I just did not want to know. I was perfectly fine with not looking for answers myself and just going with the flow inside the tomb. Even when bickering amongst ourselves breaks out, it still is more secure hugging the walls than leaving. However, God has a way of reaching in and taking us out...I was yanked with fingers stretched, scraping the sides, and trying to get back in (but that is for another time.)

The rest of the world? They aren't really looking in much. Perhaps a glance or a momentary pause, but they are not really looking. Why should they? It seems, as of late, that when we do step out it is more of an explosion. We race out yelling about an issue or quickly patching up an area affected by catastrophe, then run back inside. Those who look in either see nothing going on that would make them want to stay, or they see us bickering amongst ourselves and decide it looks nicer out in the open. Most won't even bother to look in. They are the ones scarred by what comes across as hatred coming from a group who had been taught to "Love your neighbor as yourself" and "Love one another as I have loved you." The ones who had been told over and over that they must believe a certain way or do certain things or whose questions are met with excuses or anger. People who have been told their sin is worse than others, even when His word clearly states that all sin is equal. Perhaps they are the starving bodies and souls in another part of the world, dying to be saved - but not enough of us are leaving the tomb. Those Christians on the outside, they see us becoming our own worst enemies. They try to reach in and show those in the tomb what this hurting world really needs. Sometimes they are successful and another leaves the shelter to live out in the open as a beacon for others. Some get so discouraged that they go back into the tomb.

So what is the solution? Other than ripping the roof off the tomb and tearing down a couple walls, I'm not sure. What I do know is we need to stop arguing, step outside our comfort zone, and start living in a way that shines Christ's love for everyone. We need to leave the place of the dead and live, really live, among the dying souls. It is not an easy place to be. We'll be challenged and stretched in ways you never imagined. I am. The fact that this post even exists is proof. You'll love those who you don't want to love. Forgive more than you thought possible. Remember to keep an open mind and being receptive to what others are trying to show you. I am learning so much by listening.  Learn to speak to those who don't believe the same way with tact and dignity instead of a sermon. There will be failures, probably a couple of epic ones. I've been there many times too, but it is amazing how far you will go and how much your faith will grow. Oh and don't forget prayer. If there is anything I've learned since Christ pulled me out of the tomb is to keep a steady flow of conversation going on with God. Not a scheduled session or repeating of the same words - a proper dialogue. That still small voice will lead you farther away from the tomb and shelter you in His arms as you walk amongst the living. 


*disclaimer* I am by no means an expert on anything that is above.  This was just from my heart and I had to write it here. If, as has happened in the recent past, you are offended and feel something needs to be said, that is fine. I wasn't offended by the social media comments after my grace post by a couple people who wrongly thought I was speaking about them. That isn't something I would do and if they took time to know me, they'd have realized.
#easter #tomb #LoveOneAnother #resurrection #compassion