Tag Archive | Ehlers Danlos

Wounds hurt, but they don’t define

Been dealing with a lot lately that has been bringing on the pressure and opening a well of old memories I would rather just never come back. Been up most of the night due to a migraine and a 9 year old who just can’t sleep no matter how hard we tried. That means I have had time to think. Watched a couple movies to keep the thinking at bay as long as I could, but decided at some point I just got to let the thoughts flow so I can process and work through them.
 
One of the things that came up strongest was my disabilities and the way life has been forced to change because of them. On the outside, I may look to some like I’ve got this living with disabilities thing down. I may look strong, resilient, tough, full of faith, and ready to laugh off anything this life can throw at me. Sometimes I am those things. Sometimes I am merely attempting to convince myself that I am capable of those things.
 
Reality is that it’s a deep fight within me to keep pushing forward. A lot of prayer, a lot of suppressed tears and anger, and even fear. I refuse to give up, but there are times when I can’t run from reality… where reality instead smacks me a good one in the face. It hurts, but it’s real, and I have a great and loving Father in Heaven that holds me up, or pulls me back up off the ground if need be. He never gives up on me and helps me to not give up on myself. I will be forever grateful for that. Especially after moments like what I faced yesterday. To the outside looking in it was small, probably insignificant. Nothing I haven’t had to say or admit before; no new news to swallow. It still stung though and I fought hard to avoid facing the moment I could see coming from a mile off.
 
Without revealing the personal surrounding details, I basically found myself being faced with someone who was questioning and borderline challenging my commitment to do what needed to be done. My independence, my “work ethic” vs laziness so to speak. She went after my disabled status and finally forced the moment I was trying to avoid when she tried to push once more that I just wasn’t wanting to try and included a comment along the lines of “Why won’t you work? You can’t be disabled 24/7”.
 
It was in that moment that she ripped open one of my most painful wounds. One that has resulted in a lot of trauma, a lot of loss, a lot of change. One that I still can’t look at straight on without tears in my eyes and fire in my heart as the memories flood back to that first time waking up in a foreign hospital in Germany; the last thing I remembered being trying to walk down the hall to greet my husband who was returning home from work. That day was the start of a life changing nightmare of questions, mysterious illness, my body betraying me one system after another with no understandable reason as to why at the time.
 
After a couple of years of fighting, finding answers I didn’t like, trying to pretend I was ok even though we all knew I was only getting worse, and trying to force life to go back to “normal”, I found myself sitting in front of a judge. Sitting there, fighting back the tears and attempting to keep a straight face as I felt my back dislocate and my hip fall out of place, knowing that meant I would not be able to stand up when it was time to do so. Reading the judgement that came in the mail not long after… effectively forcing me out of the workforce for my own good and banning me from returning.
 
All of this and more came flooding into my mind and heart as I heard that woman utter those words… “you can’t be disabled 24/7″… Unfortunately… yes you can. My response to her was that I was forced out of the workforce by a court judge because I am THAT disabled. For her, that was end of that. Conversation took a different turn and she backed off in that area. For me though, the wound of the past is sitting here staring me in the face once again. I need to learn to quit being so fearful of facing it. Like it or not, it’s a part of me now. It doesn’t need to define me though. Thank God in Heaven that it doesn’t need to define me.
 
The world sees me as broken, past my prime, cast off. Being disabled is the end of the line for general society; they don’t tend to look past it well. Once you can’t fit their mold, or do all they think you should, what you still can do doesn’t amount to much in their eyes.   God however tells me I am beautiful, his daughter, a masterpiece in the making, and that I have a future worth being here for. Best of all he promises that He’s got a plan and will not let anything go to waste. Even an old wound that has caused so much damage and changed so much, can be used to help make a beautiful future if it is handed over to God. ❤

Getting Connected

Morning everyone! Guess what? I actually got to sleep last night! Whoo hoo! lol David lasted for almost two weeks this round! Man will I be grateful when I finally can put a safety block on our door again.

Had an appointment with a new cardiologist yesterday too. They’re putting me on a heart monitor and doing a new echo on my heart to make sure I am truly stable. Been pretty weak again after a scary episode that took me down about a month ago. Depending on the results that come back, I will either be released with some instructions to help keep things stable or I will be starting discussions with the doctor about medications or other interventions. Can’t have my heart refusing to cooperate on me again like that.

In the meantime, the boys and I are starting to get used to our new town and neighborhood and are starting to get connected, slowly but surely. The boys and I are also getting connected with the EDS doctors we’ve been needing. Oddly enough though, my cardiologist (of all people) asked about genetic testing and when I told her of the mutated gene that no-one could explain that showed up on both of my boys’ reports she told me to make sure I told my primary care doc and have him get us in with the EDS geneticist specialists that will be coming through Boise soon. She thinks they may have answers to the mystery gene that might in turn provide some answers for my family. Worth a try in my book. : )

Hope this finds you all having a good morning! Please say hi in the comments. Would love to hear from you. 🙂

Let the Blessings Rain Down

Had a day full of blessings today! ^_^ Met with the bracing specialist today that our new primary care set up for me. He was awesome! Patient and kind with the boys, knowledgeable about EDS and even my other condition that has my leg all twisted up on the right, and very knowledgeable about braces. 🙂

Bad news is, he took one look at my current one and basically told me the place that did it for me cheaped out on me and used things that are now considered obsolete and then didn’t even make it right. He said there are extensive errors that would need to be addressed and repaired before the brace I have would work right.

GOOD NEWS is that he suggested tarting from scratch and building me a custom one that will truly hold me up and together like I need. One that will not allow me to keep dislocating inside the brace (my current one allows that and simply lets me “lock” myself into a standing position to try and prevent a fall). One that will secure both my knee and my ankle in a way that won’t sacrifice comfort for safety. He even is going to make it less of an eye sore for me. Said that having a bad leg shouldn’t mean I am forced to advertise it from a mile off. I couldn’t help but laugh at that one. lol 🙂

Best news of all?? I asked if all this would be covered by medicaid because I just don’t have the funds to pay for bracing out of pocket. He replied by saying there are forms needed from my primary and certain things that need to be documented, but he works closely with my doctor a lot and knows it will not be a problem. He then put together some papers that details exactly what needs to be done, including which form to fill out, wording that the insurance company will want to see, and details of the kind of documentation needed and how to include it. 😀 Then, as if all this wasn’t enough, he took my current brace and fixed some of the more pressing issues for me so it wouldn’t keep injuring me while I am waiting for the new one to come in. 😀

All this has a double fold blessing for me. 1) I am finally getting the help I have needed for all these years. There is even hope now of regaining some strength and stability! 2) The doctor who is arranging all this for me, is meeting with my children in two weeks! And he’s already prepared to start getting the same kind of help in place for them. ^_^

Thank-you to all who helped me get my family to Idaho and those that are continuing to pray for us. It is making a huge difference in our lives already and I couldn’t be more grateful. ❤ On a side note, we also are starting to see the connections come through on the Autism side of things too. We will be going to an Autism family cookout THIS Saturday! A chance to meet other families, get more information on local help and services, and there will even be a group there that will be teaching the kids how to fish! David and Joshua are really excited about that. lol 🙂

Mission Idaho

user_photo-554bcebe438e0My family has an announcement to make and also a call for help. The Ehlers-Danlos Syndrome that all three of us now are battling has gotten to the point it can’t and won’t be ignored any longer. The problem with that though is that we don’t have access to the kind of doctors we need who have the kind of knowledge and experience needed to help us.

So, we are moving. We’ve found an area in Idaho with the medical help, services, and support we seriously need and I’ve gotten notice of our acceptance and our new address and everything. I am finishing up the packing and final paperwork as we speak. The move is scheduled for the end of May, but we are still short on our efforts to raise the needed funds to make it possible.

If there is any way you can help, please accept my sincere gratitude and thanks. No amount is too small, and prayers and sharing are truly appreciated as well. Whatever you can do to help me get our family to Idaho would be greatly appreciated. Thank-you from the bottom of my heart.

Click Here
for the official fundraiser page that has been set
up by my uncle.  There is also an on-line garage
sale
of sorts going on.

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Happy Birthday Joshua!

Yep!  My little man turned 6 today! ^_^

DSCF3742-editedSince he was still awake at midnight (as usual lol) I had a little mini birthday celebration with him involving the birthday song, cuddles, and gathering all the mail and packages that had come in (thanks to his aunt and two amazing mail for kids groups). Our neighbor Pilar happened to be here to so she joined in with us. 🙂 I even let him choose one present and one card to open instead of having to save them all for morning. He was pretty excited to say the least and was having a blast until it came time for him to face that “one” really means “one”. I took this picture right after this little conversation happened (after he already opened one present and card):

Joshua: Now I am going to open this package! 😀

Me: No Joshua. You can’t open a whole package of presents tonight. That has to wait until morning.

Joshua: When is morning going to get here?

Me: After you finally go to sleep and then wake back up.

Pilar: Sounds like a good reason to go to bed right now then huh? So morning can come quicker.

Joshua: *slumps over package and gives out exaggerated sigh*

lol ^_^

Reigniting an Old Love

DSCF2802_tagged_brighterRecently I have been getting a bit more serious about my artwork again and have been making some new pieces.  I have been slowly trying to get back into it over the last year, but have hit a point here in the last few days where I am actually doing well in the area of drawing. 🙂  That’s normally a very weak skill area for me so I am pretty excited to be doing well and drawing as much as my fingers and time will allow.  Sometimes, things like this don’t last long for me so I like to do as much as I can while the opportunity is there.  I go through creative spurts and it seems my skills temporarily increase where needed when I do so. 🙂  Now if I could just figure out how to keep the skill intact for the long haul… lol

Here are some of my latest pieces.  The one pictured above will be going in our annual art show through DogForDavid, and below is one that I entered in a t-shirt design contest for an EDS organization and some logo work I was working on for our homeschool.  I also included some of my older works from other times inspiration (and skill) struck. 🙂  I do a lot more than just drawing, but I will save that for another post at a later time. 😉

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Bringing Back the Play

Lately, my struggles with health have seemed to take over my life in many ways.  I’ve struggled with anger, depression, frustration, and more in reaction to the changes I have been forced to make in order to compensate for it all.  Earlier this evening though, after a long day, I got a beautiful reminder of the truth of that old saying, “when God closes a door, He always opens a window“.  One of the biggest things my unstable joints and weakened health has taken from me is the ability to get down on the floor and play with my kids building legos, putting together puzzles, playing with trains, rolling around in tickle fights, playing in forts made of sheets and tables, etc.

Truth be told, I still can’t do those things like I used to, and the few times I have tried to anyway, my body quickly and severely reminded me of why I couldn’t.  I’ve tried replacing the missed fun with things that could be done at chair and table levels, like piano and coloring and watching more movies together, and with things the kids could do with other people, but both my children and I still felt the loss.  Yesterday evening though, I blissfully found myself in a position of playing and enjoying my children to the fullest, being right in the middle of their smiles and laughter and imagination again instead of having to watch from the sidelines.  No, nothing changed in regards to my health or limitations.  I was actually bed bound at the time from a headache, weak leg that kept giving out, a weak shoulder, and a problem with persistent dizziness every time I tried to sit up.

So what was different?  Perspective, and accommodation.  My children needed to clean their toys up after dumping most of their collection all over the floor.  I needed to lay down and rest but wanted to still be near them so I chose the bed in the messy room.  After a short while, the boys decided to climb up to be with me.  At first, it was just some loving cuddles and hugs and some sweet well-meaning actions like pulling the blanket up to my shoulders, brushing my hair away from my eyes like I do for them, etc.  Then David, true to his nature of seeing things in different ways than the majority, leaned in close to my face, briefly looked at my eyes before darting his gaze to my nose (eye contact is hard for him), and smiled at me.

Not just a simple, sweet, ordinary smile either.  One filled with laughter dancing at the edges and mischief hiding in the dimples.  I took his cue and reached out and bopped his nose with my finger setting off a string of giggles which ended in him climbing up to join me on the bed.  I couldn’t move much, and I couldn’t sit up, but that didn’t stop him from finding a way to play with me and we both enjoyed every second of it.  His brother, Joshua, soon joined in too once he saw what we were up to; entertaining himself with climbing up on my side and then giggling when I would roll slightly and cause him to plop back down to the bed.  David’s favorite game was seeing how close he could get before I kissed his nose or tickled his cheeks or neck. lol  When I grew too tired to continue and my headache got worse, they cuddled close to me and listened to music from the radio for while.  David even seemed to know when he needed to calm down again and simply snuggled up close, pulling the blanket over us both, and started playing with my hair.

I never got on the floor with them like old times, I barely moved, and I couldn’t even sit up, but we had a lot of fun anyway and made memories all three of us now treasure.  Last night I was reminded it’s not so much in what we can or can’t do, but in finding a way to make the most of what we can do and putting our heart into it, that make moments turn into bonding time and treasured memories.  So I can’t wrestle around on the floor with them anymore or help them build extensive forts and crawl in after them.  I can’t get down on their level and play in their world of endless trains, blocks, and other toys like I used to. It may even be a long time still before I can take them back on our favorite outings like the zoo or museum.  But thanks to one little mischievous and laughter filled smile, and my kids meeting me half way, all three of us discovered a new way to play together that brought the laughter back to it’s fullest.

The best part of it all?  What David said shortly afterward, when I recovered enough strength to move to the couch while they were watching one of their shows on the Roku…

“Mommy, I like spending time with you.”

I feel the same way about you buddy. ❤
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