I am so excited to be alive!!! If everyone could understand what it feels like to feel dead, lifeless, immovable, unable, incapable… and then to be given life back!!! You would be so grateful for EVERYTHING that you are able to do, see, and be a part of!
The last 12 years were spent in sickness. It felt like I was dying over and over again. I’d gain my freedom, and something else would happen. 4 times stuck in a bed. 4 times fighting through issues. Trying to find out who I was when I couldn’t accomplish ANYTHING. Trying to find out what was wrong with me. Trying to figure out how to heal, so that my children wouldn’t have to go through what I have.
I learned to let people love me. It is not a weakness to ask for help. I learned that even though I couldn’t do it, God sent someone to help me; to love me. No, they weren’t perfect. But, neither am I.
I learned to love my husband, my caregiver, my friend (not my enemy.) The little spats didn’t matter. The messy house didn’t matter. Priorities went back where they belonged.
I learned to love my children instead of putting unrealistic expectations on them. I learned that we are all different and that it’s okay. Miscommunication can be worked through. Boundaries can be set.
I have learned to love myself. Those mistakes that I was so hard on myself for were learning steps. Thomas Edison tried 1,000 times before he successfully invented the light bulb. I have no idea how many times I tried before I could walk successfully the first time. We only fail when we give up. I don’t have to be perfect, but I can keep trying to be better one attempt at a time.
I learned that I didn’t need to have everything that I wanted in order to have joy. I learned to be thankful for the hardships, not a victim full of fear. There is something good in every day. There is something that I can learn in the pain.
God can use this for my good and the good of others. I have learned that I can still help others even lying in a bed. I can text encouragement, pray for others, and share what I have learned and overcome thus far even though I still have further to go.
I learned that God can work miracles even when we can’t see how. I learned to listen closely to His Spirit and to follow directions. I had never walked so close to God before.
I found the answers to heal on this journey, and I no longer have to worry about my children’s future. God wants me to use this information to help more than just my family, and I am excited to be living again!!!
Happy Birthday to me! I’m Free to be the person God created me to be!!!
I was sitting on the plane beside my husband getting ready to go on our honeymoon. I’d never been on a plane before let alone over 2,000 miles away from my family. I looked out of the window to see my Mom, Dad, and sister waving in the window. All of a sudden, I realized that I wanted my Daddy! The man who’d protected me, and made sure that I was taken care of… The man who’d taken me in for stitches, knew that I’d need health insurance with my accident-prone self, the man who could pick me up and carry me to help if needed… How was this barely out of teenage-hood husband going to take care of me if he didn’t know me! Now, mind you, we had dated off and on throughout our teenage years, but he didn’t understand me like my Daddy!
The flight attendant spoke to everyone on the flight just then: “Folks, we have over-booked this flight. Would anyone be willing to get on a later flight, and receive extra flight miles compensation?” I didn’t care what that meant, but I knew I could get off right then. I started to stand, and my husband grabbed my hand, and shook his head, “no.” But… But… As we took off, I cried. I knew they were crying, too. This was my new life. The man beside me would now take care of me. He would learn how to love me the way I needed. But I prayed with all my might that I could feel God’s presence with me, and that it would be okay.
As you embark on this new journey, you may very well be thinking, “We’ve got what many couples lack: True Love. All you need is Love.” But as the infatuation fades, and you are left with the hard work of building a love that lasts, I would like to prepare you with some wisdom that I have learned that I hope may help you on your new endeavor. Here are Some Gems I’ve Found in My Marriage that I Treasure…
Runaway Bride is one of my favorite movies. I laugh so hard at how she bolts in many various, spontaneous ways. But, I also love the moral. She was trying so hard to be what each potential spouse wanted her to be, and yet, she had no idea who she was. Even in my own life, I realized that I did the same thing. I wore red, because my husband liked it on me. I went along to every big event that he wanted me to until my body crashed again and again. So, if you don’t like eggs, you don’t have to eat them because your spouse tells you to. Do what’s right for you, and respect that your spouse may like something different.
#2 Make sure that Heavenly Father is FIRST in your life.
This person beside you may some days feel like a stranger to you. You may wonder how you can be so far apart and yet live together. You may not even like that person some days. But your Father in Heaven LOVES you and your spouse more than anyone ever could. He knows what each of you NEED. He knows the DESIRES of your hearts. He wants you to feel and BE LOVED because He IS love. Spend time with Him alone everyday. Talk to Him about your frustrations and express your thankfulness to Him at all times. You Never Have to Feel Alone. ❤
#3 PRAY FOR your spouse.
My mother warned me that there would be times that I wouldn’t like my spouse at all. I didn’t believe her until it happened to me after being married only 3yrs. But what did God ask me to do for him? Pray for him. That ONE change for me made all the difference. I didn’t want to. I was so angry at what I felt was mistreatment, that I wanted revenge. But I prayed for him because God asked me to.
I don’t mean the passive meaning of “I love my spouse” I mean to actually DO it. Evaluate the Love Languages. Each person needs to know that they are loved in EVERY way, but there is one or two things that your spouse will crave to FEEL loved. Find out which one your spouse craves, and make sure that they are getting what they need. Find out which one you crave, and ask for it; teach your spouse how to love you better. And until they’ve got it down, keep asking God to show you that He loves you. When I craved hugs, my kids were more than willing. When I craved conversation, God gave me a couple of girl friends to fill that role. And in ANY of these love languages, do not intentionally deprive yourself or your spouse. I do not deserve… they do not deserve… it’s not about deserving love. Jesus’ Love is Unconditional, and being a follower of Him means that we are trying to be LIKE Him.
My husband and I decided to go on a marriage retreat with our church group. It was super fun to hang out with married couples. The one thing that I left with, though, was how we responded differently because of a personality assessment. Since then, I have researched and wanted to understand more: from the Greek Personality Profile to The Color Code to whatever the popular trend is. BUT Nothing has helped me more than the Dressing Your Truth program. I learned how our doodling, way of processing things, voice pitch, facial features, body shape, and body movement all fit into our energy type BECAUSE it’s how God made us. I was able to see that my greatest weaknesses were also my strengths depending on how I used them NOT depending on how other’s saw me. I am not only happy with who I am, but I am so grateful for how I can see, now, that my husband complements me.
#6 Be GRATEFUL.
Many spouses gripe about the things that they don’t like about their spouse, or nag their spouse to do what they want. “I don’t like the way he leaves the toothpaste lid off of the toothpaste… the toilet paper roll is the wrong way… the dirty clothes all over the floor… the house is too messy.” If you concentrate only on the things that you don’t like about your spouse, that is ALL that you will see. If you concentrate on the things that you LOVE about your spouse, you will see MORE of what you love. It is totally okay to respectfully and lovingly address things that you feel are hurtful or that you or your spouse could be better at. But it is NOT okay to be critical, to nag, or to publicly humiliate your spouse to get what you want… even if it’s a “joke.”
#7 Take a Time Out BEFORE things get too Heated.
Watching my parents argue, my mother would follow my dad and make him talk. Eventually, my dad would end up angry and he’d walk off mad. My husband would do the same thing and follow me when I walked away. Each person has the ability to gauge when they are too angry to think clearly. When you feel that trigger, take a time-out. WALK AWAY when you’re angry, and COME BACK when you’ve cooled off to talk again as many times and as long as it takes! No, it doesn’t have to be in the same night. Many people use the scripture “don’t let the sun go down on your anger” as a sermon on getting over being angry fast or hurry up and solve it before you go to bed. Some things are not that easily solvable. But taking a time-out from that subject, or even a cool-down time and coming back to talk about it when you’re ready, helps to solve things as companions not as opponents.
#8 Pornography is NOT a way to become closer together.
“Well maybe if we took pictures of… or imitated this action… or had multiple partners…” Seriously, if you want to be closer to your spouse, be close to God FIRST. The closer you are to Him, the more you try to be like Jesus, the more that the Spirit reigns in your home, the closer and more Passionate you will be together. My husband likes to say that ANY addiction that you have is trying to fill a God-shaped hole in your soul. When you fill yourself with God’s Love, God’s Word, and God’s Spirit, you won’t expect someone or something else to make you feel good. You will feel fulfilled.
#9 Counseling is for those Willing to Work it Out
I can’t tell you how many jokes I’ve heard as reasoning NOT to see a counselor; “I can’t see a ‘shrink.'” “I’m not crazy, so I’m still good.” “People can just put up with my insanity if they really love me.” After the loss of our first baby, my husband and I were fighting non-stop, and he finally agreed to see a counselor with me… to prove that I was crazy and needed help… my motives weren’t any better. We had been taught through our prior experiences that “counseling was for crazy people.” Please do not fall for this misconception. We were healed through counseling… a few times for different reasons. Needless to say, my husband had changed his mind about counseling and decided to pursue his calling in life to be a counselor and help others like us. If you are physically injured or in pain, you’d see a doctor. You don’t only have one physical pain in your life. If you need help working through some things mentally, see a counselor, so that it DOESN’T get out of hand, and be life-threatening, or marriage-threatening.
#10 Make Plans Together
So, for this last one, I thought I would combine all of the things that others have told me they wished they had known. This includes: Time Management, Budgeting, Cleaning, Cooking, and Parenting to name a few. These are things that you can discuss together, grow together, change together, and grow some more together. What you VALUE will be what you give your time, money, and energy to. If you value your job MORE than your spouse, your time management will focus around your job. If you value your children more than your spouse, your budget and time will show them as your priorities. If you want to make your marriage work, your spouse comes second only to God. If you want to be healthy, you need that alone time with God, time to rest, and time to play, as well as, work. If you want your parenting relationships to work, you need to find ways to spend time individually with each child. Your job should support these priorities. Your friends should support these priorities. Only a strong marriage union, can hope to become a strong family union. And only two people fully dependent on God individually, can hope to have a strong marriage union.
Today, I did not use valet parking for my trip to the doctor. That’s right. I parked my own car and walked the distance in without being supported by the wall. It felt so good. Granted, I’m tired, now, but it was so worth it.
This new progressive change is due in part to cutting out activities outside the home, so I could focus on healing, and my chiropractor’s care.
I still struggle with not feeling enough because of all that I cannot accomplish. The hardest times for me right now are:
-Getting up after sitting a long time (movie theater/church,)
-Remembering that I still have limits (I so want to do EVERYTHING, but then am exhausted for a couple days after,)
-Standing still for 5min or more,
-Doing anything that heightens stress or nerves (the nervous system messes with a normal person’s autonomic function let alone someone with Dysautonomia.)
But, I realize that my worth is not in my accomplishments, and that I need to keep repeating that to myself.
My youngest daughter was doing really well at her chores, so I thought I would ask her to do a little more. She put away her clean clothes in her basket, but I also asked her to take care of her hanging up clothes. (She usually cannot be alone or she gets into trouble.)
Her sister and brother were doing their homework in her room with earphones on. When she walked in the second time, they became irritated and yelled at her to get out. She tried to defend herself and ended up crying all the way down the stairs. She tried to tell me through sobs and I told her that I heard the whole thing.
I reminded her that many times, she has not been trustworthy, so they just did not trust her. I asked her if she wanted a hug. She pouted, “yes.” I hugged her, rocked her, and told her that she was loved. I love her and God loves her even if other people are not loving.
Then I put her hand over her heart and told her to say, “I love myself.” I asked her three times, but she refused. She then said, “I like saying I love other people.” I agreed that it was easier to love other people. I reminded her that she was worth loving, she was important, and that even if nobody else showed her love, that she could. I asked her again to say, “I love myself.” Finally, she did and I got her to laugh and say it again. I also reminded her that if people don’t treat her right, that it’s okay to walk away instead of argue and defend. But that she also needed to continue to work on making good choices, so that she could be trusted.
And after I delivered this message to my sweet 5yr old, I realized that I might as well be saying that to myself. Thank you, God, for the reminder that I am lovable because I am Your Child even though I am imperfect and don’t meet even my own expectations.
It wasn’t but a year ago that I began this blog. It came out of my desire to remember what I was learning about how to heal from the symptoms of EDS, the desire to pass on information to my kids, and hopefully help others along the way.
Earlier in the summer, I had attended my first EDS support group and learned many things. I had pain in my hands and other joints which they affirmed was Chronic Pain.
And then… something happened at a place where I felt safe… a church meeting. I was told to sit in the back so I could be easily gotten in case of emergency for my Mast Cell son. There was no discussion. I felt singled out. We had already come up with an emergency plan and this wasn’t it. I was so angry, shocked, and humiliated. I balled in the bathroom and was sought out by the person in charge. She didn’t seem to want to listen, but to inform me that her plan was best. At that moment, I could have walked out and never come back. I was ready to.
A leader there convinced me to wait it out. She prayed with me and listened to me complain. She agreed that it was not the best way to handle things. Another friend did the same thing. My husband wanted to defend me. He made me laugh by saying that they should be rolling out the red carpet for me and having me sit in the front row instead of the back because of how amazing I was.
I personally experienced stages of grief. And the nerve pain began. Tingling pain from the bottom of my spine all the way up and over my shoulders. Nobody could touch me. My mind became as if in a fog. I was extremely tired, but I couldn’t sleep.
I watched videos on Chronic Pain trying to figure out what to do. I contacted my friend who’d taught me about essential oils and she gave me different samples and suggested Fibromyalgia. I went to my doctor and he made an appointment with several specialists and tests. The tests came back negative. (which I was used to all my life.) One specialist suggested pain reliever or birth control. One was an occupational therapist for the pain in my hands. The other I needed to wait for. So, I set up a blog. And while waiting, I prayed, researched, tested, and when completely confident, posted.
I had talked to the person in charge at church, told them a little of what was going on in my life, and how hard it was for me to take what had happened. She apologized and has become my biggest advocate there. I had gotten the Fibro pain down within one month withessential oils. I researched diet changes to prevent further problems. When I had finally gotten in to see Dr. Collins, she backed up the information I had gained and added supplements. I had continued therapy exercises to strengthen my hands, as well as, core body strength. I had begun the Dressing Your Truth program and not only felt better in the right texture of clothing and more confident, but I began to understand myself emotionally. My first specialist was ecstatic. I was so excited to share what was working for me with others.
Since then, over the last year, I have had people who I thought were close friends and family write angry letters and completely turn their backs on me and my family. Each time, I went through a grieving type process. Each time, I have gotten better at handling it, however, I feel the fibro pain begin at the top of my spine threatening to flare up and I know I’m not there,yet.
But when praying about it this last time, it hit me. I have an Approval Addiction. This need for approval has caused me to become a victim in each circumstance. And when I was rejected, I would turn to another addiction: sugar cravings, facebook, spending addiction, or in the past, anorexia. I was doing this all subconsciously, but I have been doing it for most of my life.
So, I’m ready to heal another part of my life. I’m ready to take care of myself. I have felt God’s amazing love for me, but it’s okay to love myself AND to not be loved by everyone.
I don’t need your approval to be the beautiful person that God created me to be. I don’t need you to love me to take care of myself. I don’t need to fall prey to your manipulation and I don’t need to victimize myself. I can call it what it is, stand on my own two feet, and know that I am loved whether you love me or not.
Last year, I feel like I fell into this deep canyon. Many people who had the same thing that I have called it “chronic” with “no cure” adding to feelings of hopelessness. I was experiencing depression so bad my chest ached, pain in all of my joints (Chronic Pain,) nerve pain up my back (Fibromyalgia,) emotional and social pain, severe menstrual pain that made me want to throw up (Adenomyosis,) severe migraines, loss of energy (Chronic Fatigue,) fogginess, insomnia, becoming sick on most foods (Mast Cell), and dizziness to the point of passing out (POTS.) I feared for not only my quality of life, but my children’s. I would not be able to homeschool them, I would miss out on their lives, I would need a caregiver, and they would end up in the same predicament as me in the long run. If I had listened to the voices of hopelessness, I would not be where I am today and it would have affected everyone around me.
But I prayed. I did not moan with the question, “Why me?” I wanted to know what He wanted me to learn. I sought answers. I did not give up. I listened as one man who had experienced severe allergies to everything (Mast Cell) inspired others on a support group with being able to run after one year of hard work. I have fought my way up this canyon wall learning to use many tools along the way with God, the Master Physician, leading me. It’s still tough. Sometimes, I forget to use the tools and want to quit. But I’m still fighting. Today, I am stable with very little medication (the need for it going down monthly), supplements and nutrition, herbs and essential oils, exercise, emotional healing, and I am not afraid to learn more. I am back to cleaning my house, being creative, feeling clear, excited about life, still homeschooling and teaching my kids what I have learned so they never have to experience what I went through, and rarely ever getting dizzy. (When I do, I have my emergency bag with me.) I feel I am halfway back to feeling healthy and still climbing up on this journey.
Can I cure EDS? No. But I can live out a normal life bringing out the best in my genes and teach my kids to do the same. I am no longer lying down unable to move, no longer afraid, and definitely not hopeless. I want to bring hope to others with the things that I have learned… and last but not least, be there for my own family. NEVER Give up!!! There ARE answers. There IS Hope. You are NOT alone! May God Bless You on your journey as you Seek Him for the Answers He can lead you to.
Recently, I was in extreme pain, but trying to make it through Bible Study. I was walking slower than the elderly women in front of me wondering why the heck I’d even left the house. One of the reasons that I go, isn’t just for the study of the Bible itself, but to be surrounded by those of the same faith for us to uplift and pray for each other; fellowship. And there were wonderful people there that did pray for me understanding that I WAS in extreme pain even if they didn’t understand WHY. But I just wasn’t feeling it. I could just feel pain. I also felt alone in it. Passing the bookstore in the church, a book stood out at the moment I asked the question in my head, “Why am I even here? I just want to go home.” The book simply stated, “Pressing on when you feel like turning back.” I giggled to myself that God was being funny with me again. But God didn’t stop there. He always backs His words!
Sitting there in pain, feeling alone, and making sure I was near the back in case I needed to ask for help, I longed to make a connection with someone. I wasn’t sure how anyone could understand what I was going through even if they did have empathy, but I knew God understood. So, I tried to get out of the study what I was “supposed to” and leave it at that. I was trying not to feel sorry for myself. A woman who was not much older than I and was also having a hard time walking, came up to me and asked me if there was a story with my zebra cane. I told her a 30 second brief of Ehlers-Danlos Syndrome and she told me about the pain in her back causing problems with walking, as well. A friend! It’s not that I didn’t have other friends there, but she understood the pain even if she didn’t have the same starting issue as me. On my way out the door, another friend offered to make food for my family (which isn’t easy with our allergies.) I left humbled that God loved me enough to send what I needed… and that’s not all.
I had wanted to take my children to the library afterwards, but knew there was no way I could take their hands, books, and handle the pain involved. So, I decided that it was okay to go home and try again another day. Besides, it was snowing and a little too cold to get in and out of the van a few times with the littles. A little while later, on the other side of the highway, a woman was waving at people for help in the almost white-out flurry of snow near her small pick-up truck on the side of the road. No one would stop in the freezing cold. I knew it would take me a while to get over to her, so I prayed that if it was okay for me to do so, God would make the desire for me to help her stronger. (I do hate the precautions we must take to help people these days, and do my best to protect my family, but I trust God’s judgement.) I was almost in tears at this point and excited to turn around and see what I could do. I finally pulled up behind the vehicle, though, it looked like nobody was in it at first because it was snowing so much. A couple got out of the truck cautious of me. I knew what I was supposed to do. I invited them in the van and they asked me to take them to the next gas station. The woman had the same name as my baby girl and thanked me for getting her out of the cold. The man was also thankful but cautious and protective of them both. After I dropped them off and made sure they were okay, he left me with “God Bless You.” I returned the blessing, and was so thankful that God allowed me to help someone when I was beginning to feel helpless and needy myself.
In Pressing On to learn His Words even if I didn’t feel like it, God gave me: people who loved, prayed for, and served me, someone who understood me, and He showed me that I am valuable when I felt incapable. God will always prove himself if we Trust Him. And even though I knew that in my head, my body was failing me, and my heart was following, He was there! He loves me. He intercedes for me. He serves me. He understands me. He wants me to know that I am valuable to Him.
Recently, I attended a charity dinner. I was quite distraught because I was having a hard time with different foods and my energy levels because of Ehlers-Danlos Syndrome. I thought, “If people ask me how I am, how can I answer honestly? People don’t want to hear, ‘I don’t feel well.’”
Then the main speaker got up and talked about how she had lost her Pastor husband and son within a year of each other. While talking to an accountability partner and friend, she asked the question, “How do I grieve well? I have helped others through grieving and it’s not pretty. I need to be able to grieve, but I don’t want to hurt others in the process.” She replied, “Let God take care of you. Watch the ways that He does.” Needless to say, I was balling and felt this woman was talking to me.
I am an independent person and LOVE to take care of myself and others around me. My main Love Language is Service… and it’s hard for me to let others love me that way. I’m not sure exactly why. Maybe because “Service” isn’t the same as just spending time together or gifts…. It’s specific. I love the dishes done, I like particular clothes, a particular kind of cookies or jewelry, things done that I specifically ask for, things given that I specifically need…. I’m a tough cookie to love especially with my independent exterior who hates to ask.
While going through my own grieving process of “this is the way my life is now,” I’ve had to let go of my own expectations of myself. I’ve had to let go of the pride that I have in being able to take care of things myself or of things just getting done. I’ve had to allow myself to be singled out which is NOT something that I crave at all. I’ve been able to take a step back even complaining to God, “I don’t like this one bit, but I trust You to help me in the time You feel is best, in whatever way You think is best.”
And I watched God Love Me… I’ve had people actually sit and listen while I explain what I’m going through. I’ve had people offer to pray for me. I went to church and had people there by my side ready to catch me, walk with me, and take over for me. I went to Bible Study and met a friend going through a different experience be able to relate to me when I was feeling alone and insufficient. I’ve had people offer to clean my house or take my kids so I can get rest. I’ve had things break down in my home, no way to get another, and a friend offer theirs to me even if I didn’t ask. And while I was curled up in my bed frustrated with finances and praying, God told me, “Do what you can, and I’ll do the rest.” I went out to my mailbox and someone wrote us an anonymous card, “God wanted me to bless you” with a gift card in it. “Get what you need.” I just broke down crying, “God you DO love me. This is hard for me, but I trust You.”
Sometimes, it takes something big to make us stop and realize how much God is taking care of us… how much He really does Love us. I hope it doesn’t. But it looks like, for me, I need sit still and watch more. God loves us no matter what we are going through, in the ways that we need, just Trust Him. Watch how He takes care of you after you’ve done all you can. Watch how He answers prayers of yours and those you hadn’t even asked, yet, because He Loves You.
Last week, I went to occupational therapy and came home with another noticeable brace. I kept thinking, “People are going to ask what I did. How do I answer that I have a connective tissue disorder without having to give a lengthy explanation of what it is.” I’d rather just give the short answer that “It’s just me!” and avoid it. But that’s the recovering perfectionist part of me.
This week, I went to a service and was asked to move because an elderly person needed my seat. Normally, I might not have blinked an eye. But that day, I was having trouble even walking. I tried to tell the usher that I needed the outside seat. She said, “Look at her!” I hate scenes. I couldn’t shout over the service going on that “I have a connective tissue disorder and today I can hardly walk!” I just left the auditorium in tears. I was so tired just from leaving the house. No matter how much I’d love to be positive and pretend that everything is well, some days, it just isn’t. If I knew it wasn’t going to be a good day, I would not have left my house. I guess I used too many “spoons” the previous day.
I may have Ehlers-Danlos Syndrome. I may fall apart and need help. I may fight it with all I’ve got and it may not end well everyday. People may not understand. It’s okay. I belong to God. EDS is not WHO I am. I am a Daughter of God; He who calls me His Beloved regardless if I’m a mess; He who calls me Beautiful even when I feel broken down; He who has a purpose for me no matter how useless I feel; I am His!
“The name Yahweh or Jehovah points to God’s self-existence. The Lord is eternal and self-sufficient. In theological language those characteristics are called God’s “incommunicable attributes.” These are attributes of God that He cannot share with humans. These incommunicable attributes are part of what it means to be uniquely God. We are not God. We are not infinite. We will always be finite.–we are needy and cannot sustain our own lives. We are not self-existent, eternal beings.
However, the “communicable attributes”–the attributes that God can and does share with us are His goodness and mercy; compassion, grace, slowness to anger, love and faithfulness. These are ways we will increasingly, though imperfectly be like God, if we are Christians. Because God has been good to us, we must be good to others. Because God has been merciful to us, we too must show mercy.”
God is self-sufficient; the ONLY One who is. We all need help; some more than others.
So while I am not proud to be broken, I don’t need to hide. I need to work on what He wants me to and Rest in Him for the things I cannot do. I need Him. He is holding me together when I feel I’m breaking apart. He is my ultimate BRACE, and I am happy to be His and to continue becoming more like Him.
Journey back to Eden 