Online church: Great Option for Spoonies

Hey! I know I haven’t been writting. I’ve been going through a lot of diagnostic testing and having problems, just haven’t felt led to be writting right now. I’ve been focusing on my health. But I realize I have been really blessed and want to tell other spoonie’s about my church. My church(Venture Church) is nondenominational and has  started an online campus. We have a chat room during church so we can talk and connect with one another. I know for many spoonies going to church is extremely difficult, and a community of believers around you can help so much. If you find yourself unable to go I encourage you to check out mine (http://online.venturechurch.org). We have services at 9:30am and 11am(central time) Sunday morning and then the service is played every odd hour durring the week.

I will also be leading an online bible study (called a growth group). We will be using “groupme”, which is a texting app. This is also great for anyone who normally can’t physically attend a small group. These past few months, I haven’t been able to physically attend my churches services or bible studies, but because of their online campus. I was able to attend church and was in an online bible study last year, I absolutly loved it! My bible study is Tuesday nights at 7. There are two other bible studies at different times as well. 

To sign up:

• Go to: http://www.venturechurch.org/#!adults/c31z
• Click on “signup for an online growth group”
• Mine is  “Lewis online sermon based”. But there are others there as well.
• Click register under the one you’d like to register for
• If you have any problems or questions, email me at spooniefollowinggod@gmail.com
•   

Walking

I guess we all glamorize things after we lose them. But I used to love to walk. After my accident when I was 16 and lost my ability to walk(the first time), I saw how wonderful it was. The sheer physics and mechanics behind it were amazing. You put all your weight on one foot, the both, then the other, all while your pelvis keeps your top half stead, keeping you from waddling. Even after I gained my strength to walk again, I kept waddling a bit. My pelvis never seemed to relearn the way my legs did. I guess relearning to walk at 16, changes your walking habits a bit. But I used to love walking. I would purposely walk the long way everywhere, park extra far out, walk my friends to their classes (assuming I didn’t have to go to one myself) and just go out for walks. It feels wonderful! The independence your body has to push off on the ground and move across a little piece of the globe can fill you up with so much happiness. You can walk fast and feel the wind in your face or slow and absorb every bit of the sun. Now I return to my 16 year old self, unable to walk. I haven’t walked for fun since my friends noticed a limp in my right leg in September, it is now January. Soon I was using a crutch. A small aid. Something that gave you the feeling of freedom but still added a little extra help. Meanwhile, my legs weakened and lost all independence. I miss walking. I miss standing up tall, being able to look over shelves and windows. The confidence and independence of standing on your own two feet, it sounds simple. But it is a simple independence I learned to love. I knew running and most other exercises weren’t possible for me, so I embraced walking. Sitting was something I liked, but was never able to do enough of it. Sitting feels nice, resting but still having your head up (mimicking standing). My pelvis never really allowed much sitting, so I took it as unimportant. I learned to love what I was given the ability to do. For five years I was given almost full ability to walk as much as I pleased. Those five years didn’t hold much sitting time, but plenty of walking.

I know my inability to stand, glamorizes my memory of doing so. But I do remember the hard parts. I remember relearning how to stand. I remember screaming at the pain and weakness of my body. I remember my dad standing close by to grab me, as if I was a little girl. I worked hard for this ability, this freedom. I remember losing it. I remember constantly falling because my right leg couldn’t keep up with my left. I remember when my left started to fall back with it. I remember falling straight down when both stopped. All of that was worth the years of walking I was blessed to receive.

I think about how many normal, healthy, people don’t understand. I see my friends’ snapchats and facebook posts about having to park far away from their destination or walk far to take out the trash or go to class. So many don’t see the blessings we live in every day. I am blessed with other abilities like: push my wheelchair, create thoughts, type on a keyboard… So many do not have those blessings, and the ones that don’t, have other blessings. We all have blessings that we view as a basic right of being human without realizing how lucky we are. We each are blessed with abilities that others are not. I rejoice in the abilities I have, no matter how small it may seem. I also rejoice in the abilities I do not have, because I know that my lack of ability increases my understanding and love for what I do have. Because of my lack of “basic” abilities, I can better love what I do have. My strength can be used to show others strength. I trust God knows what He’s doing while taking away things that I love, it’s hard but rewarding.

One day I hope to understand why, but until then I will embrace in the moment and what I do have!

Bible Verses for Spoonies

Hey!! My posts I know have become very far apart. I am having a lot of complications with my health, and a lot of brain fog. I have been unable to get out of bed the past few days, on heavy pain meds and unable to really do anything. So I was thinking, I might not be able to write BUT God has written some amazing things for me to share (the bible)! In the back of my journal I write out bible verses that speak to me and even put them in specific categories (although most of them can fit into all of the categories). I read them to remind myself God’s promises and find comfort in God. The categories I have are: Don’t know (why or future), can’t find God, scared, broken hearted, physical pain, losing identity. Read through them all! Put the ones that speak to you up in a place where you will see it every day (read them in your bible and see what was said before and after the verse)

If you are an artist and can do something cool with some of them PLEASE DO and either put it in a comment or email it to me, and I’ll post it (and of course give you credit)

Don’t know (why or future)

If any of you lacks wisdom, let him ask God, who gives generously to all without reproach and it will be given (James 1:5)

He restores my soul. He leads me in paths of righteousness for His name’s sake(Psalm 23:8)

Your Father’s blessings are greater than the blessings of the ancient mountains, than the bounty of the age-old hills (Gen 49:26)

Can’t find God

Job 23**

But He knows the way that I take (Job 23:10)

The Lord watches over you. The Lord is your shade at your right hand. The Lord will keep you from all harm. He will watch over your life (Psalm 121:5-7)

The Lord your God is with you, the Mighty Warrior who saves. He wil take great delight in you, in His love He will no longer rebuke you, but will rejoice over you with singing (Zephaniah 3:17)

Scared:

God is a safe place to hide ready to help when we need hi. We stand fearless at the cliff-edge of doom, courageous in seastorm and earthquake. Before the rush and roar of oceans, the tremors that shift mountains. Jacob wrestling God fights FOR us, God-of-Angel-Armies protects us (psalm 46:1-3)

God is a safe place to hide, ready to help when we need Him (Psalm 46:1)

Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you. He will never leave you nor forsake you (Deuteronomy 31:6)

Keep me safe, my God, for in you I take refuge (Psalm 6:1)

Broken heart:

He heals the brokenhearted and binds their wonds(Psalm 147:3)

And my God will supply ever need of yours according to His riches in glory in Christ Jesus (Phil 4:19)

Yes, my soul finds rest in God, my hope comes from Him (Psalm 62:5)

For to set the mind on the flesh is death, but to set the mind on the Spirit is life and peace. (Romans 8:6)

Physical Pain:

Jacob wrestling God fights FOR us, God-of-Angel-Armies protects us (psalm 46:3)

Come to me, all who labor and are heavy laden, and I will give you rest (Matthew 11:28)

For we do not want you to be unaware, brothers, of the affliction we experienced in Asia. For we were so utterly burdened beyond our strength that we despaired of life itself. Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead. (2^nd Corinthians 1:8-9)

But He said to me “my grace is sufficient for you, for my power is made perfect in weakness” Therefor I will boast all the more gladly in my weaknesses, so that the power of Christ may rest upon me (2^nd Corinthians 12:9)

Losing identity/Missing old self:

Or do you not know that your body is a temple of the Holy Spirit within you, whom you have a God? You are not your own, for you were bought with a price. So glorify God in your body. (1^st Corinthians 6:19-20)

I am the vine; you are the branches. If you remain in me and I in you, you will bear much fruit; apart from me you can do nothing. (John 115:5)

I have been crucified with Christ. It is no longer I ho live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God, who loved me and gave Himself for me(Galatians 2:20)

For the moment all discipline seems painful rather than pleasant, but later it yields the peaceful fruit of righteousness to those who have been trained by it. (Hebrew 12: 11)

But He said to me “my grace is sufficient for you, for my power is made perfect in weakness” Therefor I will boast all the more gladly in my weaknesses, so that the power of Christ may rest upon me (2^nd Corinthians 12:9)

Therefore, if anyone is in Christ, He is a new creation, the old has passed, the new has come(2^nd Corinthians 5:17)

For whatever was written in former days was written for our instruction, that through endurance and through the encouragement of the Scriptures we might have hope.(Romans 15:4)

Want more?

I also suggest reading 2^nd Corinthians (it is my FAVORITE book)! It is as if Paul is talking to people going through chronic pain. He writes the purpose of the book in 2:4(4For I wrote to you out of much affliction and anguish of heart and with many tears, not to cause you pain but to let you know the abundant love that I have for you.)

I’ll put some specific areas in the book that might speak to you, but might want to take some time and read the whole book.

God of All comfort: 2^nd Corinthians 1:3-11

Treasure in Jars of Clay: 2^nd Corinthians 4:7-16 We might have broken bodies, but we have an amazing treasure(GOD).

JOY in pain: 2^nd Corinthians 7

Paul’s Thorn: 2^nd Corinthians 12: 1-10. God didn’t take away Paul’s thorn (which could be a chronic illness), because He had a greater plan for Paul!

Comment with some verses that speak to you!! Share this with friends! As always, feel free to email me with any questions:)!

Why get up in the morning?

One of the biggest questions I hear spoonies ask is “how do you get up every morning?” It IS hard! Most of us don’t sleep, then wake up in pain(because we don’t have medicine in our body yet) and/or have to do PT to get our body working enough to get up.
It’s HARD!

But this is what I tell people: find your reason(s) for getting up. Focus on that!

I’ll give you my reasons(feel free to steal mine or add your own):
1. I can have my coffee if I get up. Yes, this one is a little less serious than you were expecting but sometimes the idea of immediate gratification helps.
2. I’m a creature of habit. I know that if I don’t get up one morning, that makes it harder to get up the next morning, and harder after that and before I know it, not getting up will become a habit. Also waking up and going to bed at the same time every day will put your body on a sleep schedule and can make you sleep better at night.
3. I was created to worship my God. Whatever I do, I do for God(even if it’s something as “small” as getting out of bed in the morning)
And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him. (‭Colossians‬ ‭3‬:‭17‬ NIV)
4. Because I want to see what God’s plan for my life is going to bring! I mean His plan is awesome, I want to go out and see it! Some people are in a time in their life when God wants them to rest, and they need to be staying in bed. BUT if this isn’t where God wants you, GO! Go out and experience His plan for your life! It’s better than anything you could ever dream of:)

As I said in my last post I’m having a bad flare. I’m almost completely unable to walk with assistance. So many people have asked me why I even keep going, why keep struggling to go to classes and live my life(which is hurtful and very hard to hear). Really I’ve seen some amazing things God has been able to do with my life, even while sick. I want to be a part of it, as much as I can! I plan on fighting for that opportunity! I’m not fighting to get to live out my plan, but God’s plan!

(Now I DO NOT suggest over-doing it. Do not hurt yourself. Learn your boundaries and learn to stay as close as you can to them without crossing them. I always suggest following doctor’s orders on what you can and can’t do!)

How to survive a flare

First sorry my posts are  becoming less and less frequent. I’m having what started to be a bad flare and now seems to have turned into something new. I am determined to keep my  life as “normal” as possible. But as you read from my last post(How to say no), I’ve had to say no and postpone things(like blogging). BUT I’m still going to keep writing:)! Keep sharing with friends and family:)! Also have an email (spooniefollowinggod@gmail.com) feel free to email me blog ideas or just if you want to talk:)

Since I’m currently in a flare/or beginning a new disease, I figured I should share how I’m currently pushing through it. This is frustrating. I’m having new tests done, new doctors(all have their “new ideas” and tell me my other doctors have been wrong) and watching the hurt in my friends and family as they see me in more pain.

So here are some tips that help me:)

1. Kill your ego: You will have to do things “nonspoonies” don’t have to do, and they are embarrassing. I just got a handicap sticker for my school, while I’m waiting to get a government issued one. It stinks. I’m 21 and can’t walk as far as everyone else. I’m limping everywhere I go, I can feel people I don’t know stare at me. It’s awkward and it hurts worse than the pain, if I let it. Kill your ego, life isn’t far. If we focus on what we should be able to do, we will go crazy. Learn to laugh about the things you have to do and can’t do. My dad was texting me asking how I was doing and if my new compression stockings were helping my legs, my response “Never looked better! Got my grandma stockings, tens unit, brace to keep my hips and spine in place, and smell like Begay… Gonna have to keep the guys away” (didn’t mention the pain, limping, brainfog…. but I knew he already knew about all that).
2. Let people help: I ABSOLUTLY hate not being able to do things on my own. This is something I struggle with ALL the time. It’s hard, but if you let people help with what you can’t do, you will be able to do more of what you can do. Plus this actually is more for your family/friends than it is for you. It hurts them to see you in pain, which can cause you more stress. BUT letting them feel like they are doing something to help(even if it’s really nothing), can help them feel better. When a friend/family member asks to help you with something, look at it as though you are helping them cope with seeing a loved one in pain. Let them! It will help you and probably even help them more.
3. Be careful with research: Now, I suggest doing your research on doctors and illness, but do not go crazy into it all and freak yourself out. Keep in mind most things on the internet are over dramatized and everyone afflicted with the same illness is different.
4. Say NO: read my last post to learn more(How to say No). Know that you can not do everything, say no and learn to rest! Be honest with friends and family, tell them you are worse and can not do things.
5. MOST IMPORTANT: KEEP GOD IN THE FORFRONT! This is by far the most difficult but most important. God is letting this happen for a reason. Look towards Him! Remember the post about how God’s Joy can go over your pain? If not look up “joy>pain“! His Joy is way more awesome and amazing than any “cure” or “good day” PLUS it isn’t dependent on anything on this Earth.  Now I know this is more difficult, so I’ll give some suggestions on ways to do this:

Keeping God first in a flare

1. PRAY! Yes even if you are mad or can’t think with the brainfog and pain! PRAY! One of the coolest parts about God is that he can understand us, even when we don’t understand ourselves. If you are mad, keep praying, tell God why. Never lose contact with Him.
2. Read your bible: Every morning I get up and have my quiet time with God(even when my brainfog is horrible and I don’t understand much). 2nd Corinthians is my favorite book! Chapters 1(comfort), 7(joy) and 12(Paul’s thorn) are all great to start if you don’t know where. I also suggest finding a bible study that speaks to you in your situation. Do it with friends to keep you accountable(even if they aren’t a spoonie). Also Rest Ministries (http://restministries.com/) emails daily devotionals if you sign up for their email group
3. BIBLE VERSES EVERYWHERE! I mean everywhere! I have some everywhere I know I’ll be having a harder time. I specifically have a hard time getting ready in the morning so my bathroom mirror and coffeepot are covered with bible verses that speak to me.(I’ll make a post of these verses soon, but if you look through some of my old ones I have a bunch that I love). Encouraging phrases and posters kinda annoy me since they typically are “realistic” but bible verses ARE! They are from God, so they are truth!
4. Look for God’s plan! God has put a brick wall up in the doorway you were about to go into… why? Look for the door God is wanting you to go into. TRUST ME, it is WAY better than the doorway you were about to go into. Look for God’s plan, even if you are set that your plan was the plan for you
5. Keep His joy!!! My recent doctors visit wasn’t as bad as I was expecting, well the results were but the experience wasn’t(if that makes any sense). The nurses told me they remember me(well it wasn’t too long ago I was there but they see a lot of patients) because I’m always so joyful even though I’m very young and sick. Even told me one of the examination rooms has been nicknamed after me. HOW COOL!!!(well I guess it’s more sad but I’m going to focus on the positive). I’ve shown doctors, PTs, friends and family members, God’s Joy and how awesome it is! I mean if a “kid” is this sick and still overflowing with joy, she’s either crazy or there is something supernatural happening in her. My doctors have sent me to psychologist because they assume my  joy is just a cover up for being depressed. I did go through a time when I was depressed and did go to a psychologist but they didn’t really help, some people do get help from them and some do not. Now that I’m not depressed, its funny watching them try to figure out why I’m not. My doctor has sent me to a psychologist who isn’t a Christian and it’s awesome! I have this guy’s full attention for a full hour and I can tell him how much joy I have and how awesome God is. I mean I have joy EVEN THOUGH I can barely walk, go to class, concentrate on anything. I feel as though I’m living proof there is an all powerful, all loving, all knowing God!

This is WHY you want to keep God in front of the hard times! This Joy is so much better than anything(even the “cure”) we are all waiting for!

I hope this helps:)!

How to say NO

(before reading this, if you do not know what the Spoon Theory is, I suggest you read about it:) http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/)

I am also SOO sorry for taking so long to post! This week has been crazy WHICH is why I picked this topic:) Also, I created an email Spooniefollowinggod@gmail.com  Feel free to email me! I would love to hear from y’all! Also I am wondering what kind of topics y’all want to hear from me.

Being a spoonie, we only have a certain amount of spoons we can spend on our “activities” and “actions” we want to complete in a day.  We have to pick and choose what we can/will do. This means we have to learn to say no. I am the worst at this. I am a complete control freak and want to be able to do everything myself. I have to learn to say no. I have to learn to rest. I have to learn to pray about what to say “no” and what to say “yes” to.

Since saying “no” could be towards so many situations I broke it down into categories.

No to certain friends and situations

If you haven’t already, you will experience those friendships that take so much out of you. We all have people that we are mentoring in our lives and friendship is a give and take.  BUT as a spoonie, if you do NOT have the spoons to be in an abusive or hurtful friendship. These friendships can cause stress and push you to gossip about them to others.  I like to go to that bible verse ” And if your right hand causes you to sin, cut it off and throw it away. For it is better that you lose one of your members than that your whole body go into hell.”(Matthew 5:30). Stress is not something that we are meant to have, give EVERYTHING to God. Gossiping we all know is wrong, but when you have to be around someone who hurts you, you will end up feeling as though you need to vent to others about them. This venting is gossiping! It’s not good! Don’t push yourself down this road. I’ve been there and it is awful!

All friendships have up and downs. Don’t destroy a friendship because of a “down”(a phase). PRAY before EVER making a decision(no matter how “small” you may think it is)

No to doing things that are fun and we wish we could do

I hate this… I’m VERY stubborn. When I see others getting to do things I want to do, I get jealous and will try to figure out how I could do it. God may have put you in this situation because what seems fun now, might not be something you need to be doing. This is not just sins! Doing “Good things” might not be where God wants you. I KNOW that’s hard to hear! I KNOW that sucks! But take comfort in the fact that God will help you! He will help you stay on his path, which is WAY better than any way, cool, fun thing you see others get to do. (Check out my bio if you think I don’t understand)

No to things we used to do

Back to my stubborn self… If I’ve done it before, I’m gonna try to keep doing it myself as long as I can. Sometimes, this isn’t what God is wanting me to do, at this point in my life. It might of been where God wanted me earlier in my life but we have to learn to live in the NOW. ” This is the day that the LORD has made; let us rejoice and be glad in it.” Psalm 118:24
Live in the NOW:)!

No to things that are good

Just because something is “good” doesn’t mean you have to say “yes”. Jesus RESTED! Jesus told the apostles to rest(after the feeding of the 5,000):  “The apostles returned to Jesus and told him all that they had done and taught. ³¹ And he said to them, ‘Come away by yourselves to a desolate place and rest a while.’ For many were coming and going, and they had no leisure even to eat. ³²  And they went away in the boat to a desolate place by themselves.” Mark 6:30-32.  Jesus told US to rest: “Come to me , all who labor and are heavy laden, and I will give you rest.”(Mathew 11:28. plus read 25-30)

We have to rest!

As a spoonie, we’ve got to learn to say no! Check our my bio if you think I “don’t understand”. Saying no is probably one of the hardest things I’ve ever had to learn. I pray you will see where God wants you to say “yes” and “no”

How to be friends with a spoonie

I’ve seen a lot of posts and things about friends of spoonies and then I see spoonies complain about their friends. SO I decided to write my ideas into a little “How to”. DISCLAIMER: EVERY SPOONIE IS DIFFERENT!! Not everyone feels the same as me. BUT if you are a spoonie and this feels right to you, send this to your friends. Share this on facebook and maybe say which one means the most to you! People don’t change until we tell them how we feel.

How to be friends with a Spoonie

1. NEVER say “If I could take it away, I would”! This is my biggest pet peeve. OBVIOUSLY you don’t want me in pain, I don’t even want people I hate to be in pain. This hurts us. After hearing this, spoonies will try to actively hide pain from you, which will normally cause MORE stress and pain, because we don’t want our bodies to cause someone else pain. We know you don’t like us in pain, but unless you are a doctor, you probably won’t be able to “fix” us. That’s ok. We want you there! We want to be able to let people in and still feel like the strong person we are. Don’t make us feel bad for something we have no control over. This is especially to parents. I am not a parent myself but I was a teen spoonie.  I watched what it did to my parents. I know it really is hard on you. BUT please don’t stress how you would do anything to take it away. We don’t want to hurt our parents. We know you would do anything for us and we love you for it! You can show us you would do anything for us with actions, taking us to the doctors/pt/treatment and being supportive.
2. I am not weak. Do not look at me like I am injured or weak. If I need help, I will ask. Treat me like anyone else. When I told one of my friends about my illness, I told him that I never want him to look at me like I’m injured or weak. He told me that he was so impressed about how strong I was and couldn’t imagine me being weak. That was the answer every spoonie wants to hear!
3. Don’t waste my spoons. If I am spending spoons to do something with you, don’t waste it. When I’m out with friends, I want to have fun! I don’t have as many opportunities to go out and have fun, so I don’t want to waste it. I want to create memories that I can think back to, when I have a flare and can’t do anything. That being said. If I’m choosing to hang out with you, I’m CHOOSING to spend my spoons on you:D! That’s a huge compliment!
4. No means no. Peer pressure isn’t cool to ANYONE. If I say I don’t want to do something, don’t push it. I shouldn’t have to tell you that my doctor told me I can’t before you back off. This is just a basic “how to be friends with anyone” thing but you will not help me by pushing me into things that my doctor told me no, even if you(in all your medical expertise) think one time is ok. Don’t tell me to fight my doctor and get a second opinion. If it is something that I want to find a solution for, I will, but to ME it might not be worth it. A lot of people think that they will help me by getting me out more(or getting me to do something that everyone else is getting to do), that isn’t always the case. Some things I don’t want to spend the spoons for and others I can not do.   My body=my rules.
5. Don’t be that person that attacks us with attention as soon as we get diagnosed and then leave when you realize you can’t fix it or that it is boring. Yes there are things I can’t do, yes most of my nights are spent at home. If you don’t think you can be friends with someone who can’t go out all the time, then you should probably reconsider becoming friends with spoonies. We need friends who can sit on the couch with us, watch a Big Bang Theory marathon and eat ice cream. The people who come into our lives all of the sudden, when we get diagnosed or they hear about the diagnosis, tend to be the first ones to drop out of our lives when it stays hard. Being a friend to someone in a hard time is different from being friends with someone who is chronically having a hard time. There is no fixing us. For a lot of us there is no cure, we will live in pain for the rest of our lives. You can’t jump in for a few weeks and try to fix it. You will become frustrated and fail.
6. Don’t tell me I’m beautiful despite my affliction. My affliction is a part of me. It isn’t all of me, but it is a huge part of me.
7. Run through the awkward moments. Needless to say if you don’t have much medical experience you  will say somethings or ask questions that make you feel awkward. If there is an awkward moment, don’t turn it into an awkward silence. Change the subject and keep going. Typically spoonies wont have felt like what you said was awkward, the awkward silence MAKES it awkward.
8. A lot of my friends going into the medical field will ask me questions about my illness. That is totally cool! Its fun to talk about it with someone who kinda understands all the medical terms I’ve picked up from my years at the doctor’s office. BUT do not tell me my doctor and everything in my treatment is wrong. Don’t tell me that your high school biology teacher told you about my illness and they said the opposite of what my doctor said. Unless you are a genius or a doctor(or almost), you probably don’t know more than all the doctors I’ve gone to. Even if you aren’t going into a medical field and have questions, you can either do a little google search or ask us. We will say when you’ve crossed a line but it is ok. Don’t be scared:)

 

I feel like this is more of a “how to be friends with anyone” just adding more specifics to this situation. It isn’t hard. Just be normal with us and we will be normal back:)

Comment and add somethings I missed:)

This is a quick way of learning about the spoon theory. “Spoonies” are people who live by the spoon theory.
This is the full spoon theory: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/