My Life with EDS?

I am often asked about why I’m always feeling so terrible. frazzled-woman-cartoon-paid-forWhy am I so sporadic about posting and reviewing? Why do I barely leave my home anymore? And, if I am home all the time, why am I not reading, reviewing and posting?

I am going to attempt to share my story here. I would love to say that you will have all the answers and completely understand after this post, but I am sure there are many that have their own viewpoints. keep-calm-and-power-through-9There are many that believe those of us with chronic conditions need to just “suck it up”.

I was one of those. I used to say that all of the time. That is my personality.

God knew I needed some compassion, so remember while reading this that it’s better to have compassion without God needing to teach it to you! ha 🙂

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When I was younger, I was very outgoing and active. I always had friends around and was busy with every activity I could fit into my schedule. When I was 18, that all caught up with me. My body just crashed. It wasn’t all the activity, necessarily, but my body was not strong enough to carry all of that and I hadn’t known it.

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I spent the year of 1996 confined to bed. I just couldn’t get up. I was so tired. Getting up and going to the bathroom was enough to make me need to take a few hour nap. It was unbelievable. I had no strength.

As I slowly built back up, I started back into all my activities again. This time, however, it wasn’t the same. I was a lot more tired and edgy. I would get angry a lot easier.

As years passed by, pregnancies and life got in the way, my pain became more acute. Doctor appointment after doctor appointment with nothing to show for it. “Do more yoga.” “Swim more.” “You just have fibromyalgia and chronic fatigue syndrome.”

Then there were the “friends” with statements and questions such as: “Why do you need a name for it so badly?” “Why don’t you just juice?” “Why don’t you exercise more?” “Why don’t you just push through the pain. It’s mind over matter!”

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Now, I know their intentions were good (at least I hope they were!), but anyone with chronic pain will tell you that those suggestions are not helpful at all. Chances are very high that we have already heard of all those diets that will help. We’ve done the research. We’ve tried to find the answer.

Thankfully, I am very blessed to be one of the few that actually DID get an answer. When I was 37, I finally found out that what I have is called Ehlers-Danlos Syndrome (also known as EDS). It takes many forms and affects people differently, but if you want to have a basic idea of what the side effects are, just click here.

Let me give you the quickest way to describe EDS to you (at least the form I currently have). Every person has ligaments that are used to hold your skeletal system together and in place. When you work out, you stretch them and then they tighten back up stronger.

For someone with EDS, that’s not always the case. For me, my ligaments never tighten back up. Every time I work out, my ligaments stretch and stay that way. You can imagine how loose they are around my skeletal system. So, all those years of yoga? Worse thing the doctors could have told me to do. In their defense, they had no idea. But, this is why it is SO IMPORTANT to continue pushing until you find the answer! Yes, a name is important!

Because my ligaments are so stretchy now, they are not able to do their job and hold my skeletal system securely in place. My muscles try to overcompensate by tightening up, but this just causes even more pain and trigger points. My skeletal system is free to move about and frequently “pop” out of place. Ever had a slipped disc? Mine slide as I walk or move.

That is just the very beginning of what it does. The pain I am in on a daily basis is, at most times, unbearable. I must completely trust in God to give me the strength I need for each day for I cannot think of the future.

I don’t sleep. I don’t do much. After years of not knowing what I had, I found that the advice I was given only made things worse. I am in such terrible shape at 40 years old. Some of my personal symptoms (aside from overall pain):

  • High Blood Pressure
  • Under-active Thyroid
  • Accelerated Heart Rate
  • Fatigue (unable to even lift arms or stand at times)
  • Restless Legs (Causing my entire body to jolt)
  • Sciatica
  • Migraines
  • Tension Headaches
  • Severe Trigger Points all over
  • Eye Weakness
  • Knees are sprained in a permanent state
  • Constant shifting of my back (and everywhere, really. The pain is worse in my back.)
  • Foggy Brain
  • Unable to sleep more than an hour or two at a time (3 hours of sleep is a good night for me)
  • Delayed Sleep Syndrome
  • Inability to make very many new memories
  • Slow processing time when talking to people and responding
  • Arthritis in my hands and lower back
  • Inability to plan ahead
  • Overstimulation
  • Inability to turn head left and right due to tight muscles in neck
  • Confusion
  • Fragile bones
  • Simple tasks (like showering, making a meal, etc…) are so overwhelming that I often cry and feel like I am going to throw up when I know they are coming up or while I am in the midst of them.
  • Reading (one of my FAVORITE ACTIVITIES) causes headaches, fatigue and can not distract me from my pain enough to continue for long periods.
  • Anxiety to go anywhere because I could get stuck feeling too terrible to get home.
  • Anxiety to go anywhere because there are people there.

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I am sure that I could continue (and my family could offer a list twice as long). However, you get the idea.

Now, what am I doing about it?

Well, there is no cure for EDS. It is only pain management. Realizing that, I went into this trying to find things that would remove the pain so I could function normally. I have had everything from trigger points shots, acupuncture, dry needling, pain patches that pumped narcotics into me 24/7, and much, much more. I came to realize that none of that did enough to be worth the effect it would have on my body long term. Years of chiropractic work, yoga and swimming have completely destroyed the stability of my ligaments.

'The voices from my prescription side effects say you should consider lowering the dosage.'

Now, I am on minimal narcotics (by my choice to avoid addiction and constantly raising the amount as I become acclimated to medicine quickly). I try to use as many homeopathic remedies as possible and pray for wisdom.

So, there are so many things that I have mentioned here that are difficult to deal with on a daily basis. How about the things I am really thankful (in-spite of it/because of it):

  • My husband and sons have learned compassion. They watch out for me above their own needs.
  • I have learned compassion as I used to be annoyed by people with chronic problems.
  • My faith has grown and my relationship with God is amazing. I have had to cling to Him and learn to trust Him throughout all this. I would be in a state of hysteria if it wasn’t for Him and His peace. Nobody could ever convince me that God doesn’t exist because my relationship with Him is so intimate that I lack all doubt.
  • He has slowed me down. I used to always race around like crazy doing a million things and had no time to be still. I was angry because I was so overtired. Now, I am home and able to be a good mother and wife. I’m not too busy to love my family and be tuned into them.
  • I recognize my true friends.
  • God used it to save my son’s life (That’s a story for another day! You can email me if you want to hear about that. aTransParentMom@gmail.com)

Again, there are many things I could name, but my blessings far outweigh my troubles.

In my distress I called upon the LORD;to my God I cried for help.From his temple he heard my voice,and my cry to him reached his ears.

Yes, these are true. These are absolute truth. These are the things I cling to.

thinkingof youI pray for you, dear friends, as I know that chronic pain is something many of us struggle with. Unfortunately, many others do not recognize it for what it is. They don’t understand why we are skittish about scheduling things and often times have to cancel. They do not understand why we don’t just power through or juice or whatever. They don’t understand why we can look normal and healthy but say we feel as terrible as we do.

I get it. Hang in there. Find a way to give God glory through your pain and He will bless you more than you can imagine. You will begin to be thankful for the suffering. You will see how it has blessed your life (truthfully!). God can only show you the blessings and give you peace when you are content in His goodness. Trust Him. There’s a reason that you have it. Use it for His glory. That is what I have chosen and it has saved me from so much worse. It’s saved me from sever depression that is my constant shadow. It’s saved me from anger towards everyone around me. It has saved me from literally going crazy from pain.

He is worth it. He is what He promised. Run to Him for dear life and He will hold you in His arms through all of the difficulties.

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But…if we are being honest? This is what my husband usually gets to come home to.

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Ahhh…What does this mean? Are you with me?

I don’t know about you, but I seem to always think that life is going to slow down as soon as I get through this thing I am dealing with right now.69520623f35487f2bed71f2c4d4f5a6d Strangely enough, that never happens and my pea brain keeps thinking it will.

I mean, YEAH, it hasn’t slowed down yet…but it’s got to eventually, right?

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I am pretty sure that God lets us think that so we aren’t too overwhelmed. That’s totally His mercy. But the truth is, His thoughts are so far above our thoughts that there’s no comparison. He knows what’s coming and knows we couldn’t handle it if we knew all of what was to come. So, He gives us these little chunks we can handle (with His help) at a time.

You know, I was talking to someone the other day and she was commenting on how hard it must be to be a counselor. I mean, they have to know how to handle their clients’ problems AND their own. She was saying how difficult it was because just handing your own is overwhelming. I suggested to her that maybe that was the problem. We aren’t meant to handle them. Why would we want our own opinion on how to help ourselves when we have access to the One who’s thoughts are so far above our own?

c771a9bccf11c9ab09d603fdf00ecea7I know that almost every time I try to sort a problem (big or small) on my own, I would naturally do the opposite of what God would suggest. And the truth is, He created us, so He would know what makes us the happiest.

a4ea5912d48c3634db2a1fb313a986a6When you find yourself unsure about ANYTHING (Yes, even if you should buy the red or the blue shirt), ask God.

He WANTS to give us wisdom. He is NOT a God of confusion. If you are confused, perhaps that’s a sign that you aren’t seeking God’s wisdom?

All this to say, we need to be in the Word. We need to be learning more about Him and helping each other out! The more we know Him, the better we can hear His voice. I don’t know how many times I have been saved from a big jam because I asked Him for wisdom at the last minute!

I am just now finishing my “reading through the Bible chronologically in one year” plan and am about to start something new. I want to do it again, but a bit differently.

I am hoping that some of you would like to read through the Bible with me (and adding in a few things). I am not going to read it chronologically this time. I am using a different plan. I also intend to do some very verse specific highlighting. Lastly, and most importantly, I would love if some of you would like to go on this year-long journey with me starting April 1st. (nope, not a joke) It would be fabulous to be working together and falling more and more in love with God ❤

I will be posting more about it over the next couple of weeks. I can’t wait to hear from you guys about taking this journey!

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A very personal story

I barely know where to begin. The last few years have been a whirlwind of events. Four years ago, God called us to bring a teenager into our home and pursue adoption. After disappointment after disappointment, we found our precious son. The was almost 2 years ago. As many of you know, he came to live with us and there were a series of ups and downs.

A few months back, our precious boy decided that he didn’t want a family, but wanted freedom to pursue harmful things. He chose to walk away.

You can imagine how that affected the family. He was son and brother.

We all fully trust that God is in control and is sovereign in all things.87273ccb5c71f4bad842039a160479c1 We will always be here for him and love him. We know that life moves in waves of change. It’s not always easy, but clinging to God is what we do. As I read story after story in the Bible of those God used and chose to highlight, I felt such a mix of emotions. Mostly, I felt Him holding me tightly and whispering His perfect love into my ear as I wept. We are not called to ease and comfort. We are called to obey, and we did. We do. We will.

As we worked through some really difficult things, my blog was put on hold. I thank you all for your words, emails, letters, boxes, etc… of encouragement. I am praying that in this new “wave” of my life, I will have a chance to return and do what I love so much. As always, your prayers are welcomed!!!

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What’s going on?

So, I have gotten quite a bit of questions about what’s going on, where I’ve been, etc… We have had a really busy summer. My brother is staying with us and we have had other company on and off throughout the last 8 weeks. IMG_5288

Everyone say “hi” to my brother,  John!! —->

The other bit of news is exciting. We have been trying to adopt for a few years now and it looks like we are finally going to be matched with someone. I can’t give you much, but I can tell you that he’s 16 years old and I can’t wait to be a momma again!!

So, I plan to keep things going because I absolutely love blogging and getting to know you all. However, things might be more sporadic and a much lighter load while we transition into everything God is doing in our family.

Your prayers would be so appreciated right now. We want to adopt teenagers and love on them. Of course, that will require a lot of energy, wisdom and prayer. Please keep the whole family in mind 🙂

More to come…

Please Remember!!

prayer11I would be SO HONORED if you would allow me to pray for you! You can email me at:

aTransParentMom@gmail.com

It can be anonymous, ugly, heartbreaking and crushing. I would love to pray with you and for you. Please don’t hesitate to use that email for anything you would like me to talk to God about. You don’t even have to tell me your name OR the problem. Just say, “PRAY FOR ME!!”.

God knows and that’s good enough!! When there’s more than one praying, it just makes it easier. I would love to do that for you, friend ❤

Sand in My Sandwich (and Other Motherhood Messes I’m Learning to Love)

by Sarah Parshall Perry

What an important book! Let me tell you, this is such a big topic because it is something that so many people are dealing with. Marriage struggles, children with severe “disorders” and personal health problems. Sound familiar? Welcome to the modern mom’s life!

Sarah attacks this subject with a vigor and complete honesty. Her boys’ medical rap sheets include a diagnosis of severe autism, Asperger’s syndrome, OCD, among other things. While she takes us in the everyday life of a mom trying to understand her child, she does so with wit, passion and a deep love of God.

Please pick up a copy of this book. You might think twice before scowling at the family in the booth next to you as their child is crying, vomiting, screaming, etc… Bible verse after Bible verse, Sarah talks us through her growth. It’s such a beautiful picture. It brought tears to my eyes. As you know, I am someone that believes in transparency (thus the name of my blog). Sarah doesn’t hide a thing! She lays it out there so that God can be given all the glory and we can learn and grow from her life lessons.

Thank you, Revell, for a copy of this wonderful book! As always, this is my honest review. Here’s to many more!!


Now, for the fun stuff!!! balloonsSarah has offered to giveaway a SIGNED COPY of Sand in My Sandwich!

Just head on over to a Rafflecopter giveaway and get going on those entries! Remember, only 2 options are mandatory, the rest are just extras. All entries will be checked and any falsified will be disqualified.

For some more fun (Yes, it just keeps on coming!), head on over here and check out our awesome face-off!!

Booked – literature in the soul of me

by Karen Swallow Prior

From the very first story to the powerful and final statement , I was enraptured. In Karen’s book, cleverly titled “Booked”, we see her life intertwined with literature and God. What a task to bring them all together. I assure you, she was up for the challenge!!

Each chapter is dedicated to some form of literature that made a huge impact on her life. It may surprise you that I did not grow up reading books like Karen did. In fact, books are a relatively new thing for me! Seeing how she was able to pull truths out of these books, that are so quickly overlooked, completely blew my mind. I honestly wish I could spend about a week absorbing each chapter. They are so rich in content and full of truths.

I believe that every person could learn and grow from this book. I don’t care what stage you are at, there is something here for you. She tackles the tough issues without reserve. There is no holding back. It’s so beautifully offered up, you almost miss the depth of what is there!

Thank you so much, Karen, for this book! As always, this is my honest opinion. I would ask that everyone reading this check out Booked! There’s a link in the pic above.

Also, don’t forget to check out NAME IT!! and see if you can do better than I did!!

A bit of my story.

Oh, my friends! My story is not for the faint of heart. I know that it is something that can help others and, most importantly, bring God much glory. I will share with you, in hopes that it will do these very things.godslove

I was brought up in a very loving home. My family was amazing. Unfortunately, bad things can still slip in and harm us. When I was young, I was raped by a friend of the family. A girl, actually. It happened more than once and really changed the direction of my life. By the time I was old enough to move out, I did just that. I couldn’t wait for freedom!

What I didn’t realize, is that the freedom I sought, really wasn’t freedom at all. It was a lie. A scam. I had a couple of roommates and we were having a blast. We were living it up. At one point, a bunch of us were at the house completely wasted when I had another rape situation happen to me.

I was living a lifestyle of partying, drinking, bisexuality and complete disrespect. I thought I was free. I thought I had all the freedom in the world. Again, what a lie. God gives us rules so that we may be free, not to be a tyrant. I didn’t realize how quickly I was boxing myself in by living against those.

When I was 20 years old, I found out that I was pregnant. I was physically, emotionally, spiritually, and completely broken.

God, in His great mercy, provided a way of escape for me. To keep this short, I will not elaborate, but if you would like to hear more, I would LOVE to share it all with you.

I realized that His was is the way of joy, peace, love, and freedom. I learned that only in God, can we have a life that we dream of. It’s not what we expect, but He created us and knows what will truly make us happy.

tumblr_lzj219CmOU1r6cg73o1_500He has answered my prayers and more. I wouldn’t even be alive today if He didn’t have a plan and purpose for me. He loves us where we are at. He loves us no matter what we have done and how often we have hurt Him. He is the perfect example of love.

If you are in a place that is dark, lonely, and horrible, PLEASE turn to Him. Only He can give you what you are seeking. Everything else is fleeting.

Ever want to talk? Even Anonymously? Email me at:    aTransparentMom@gmail.com

If there is one thing I am passionate about, it’s about God and seeing how He rescues us. I would even love to put together a bunch of stories of rescues if you want to email them to me!! Sharing your pain can lighten your load and help many others.

If you go through something horrible, gift it a purpose. Otherwise, it’s just something horrible.

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Things I heard this week…

Having two boys can be fun and exciting. You never really know what’s coming next. There’s something special about a mom’s relationship with her boys. I would never trade it!

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That being said, here are a few things that I actually heard this week:

1. Little Toot to his older brother. “You don’t have to tell me what to do. I already know how to live my life!!!!”

2. “Mom! I jumped up and looked over the stall in the bathroom at Hardee’s. There was actually a guy in there! He totally saw me! When he came out, I said, ‘Sorry! I didn’t know you were in there’. He wasn’t happy.”

3. “(The Large Child) has a new nickname. We call him, “White Shadow”.

4. “I take a long time to poop because every time it starts to fall out, I like to pull it back in. It feels cool!”

5. “Dad. Don’t forget! Happy wife, happy life”

6. “Mom! You aren’t fat. You used to be really fat, but now you’re not.”

Just a few of the many delightful things I get to hear.

All in a day’s work. Right, Moms?