week 8!!!

Progress continues, praise the Lord! I've got a long road a head of me and I know it's not going to be easy. I think its possible though! I've seen how far I've come in 2 months and I am so excited to see how far I will get in the next two months!!

This song has always been on my inspirational playlist, sometimes doing physical therapy indefinitely got tiresome. I'd listen to this song and know I had to keep fighting. I have to keep fighting so others can see what Jesus can do in their lives.

I saw the Doctor last week, I am now able to freely MOVE MY SPINE! Super cool. I feel so much better being able to move and bend! I'm driving better and can even drive with my stimulator on now. I am back to wearing real clothes that are not sweats. I don't need to sleep so much AND I get to start physical and occupational therapy in january. I'm stoked to see the recovery of movements and my body.

One problem with the surgery was that I was clearly mostly bed ridden for sometime and that actually makes my nerve condition worse. The less you use it the more it hurts. So I am trying to walk on the treadmill 10 minutes a day to try and get my leg movement back. I'll be moving a lot more when I go back to school so I'm sure in 4 weeks I'll be ready....ish. hahah

I feel so blessed, and my heart is filled this holy time of year! I'm looking forward to seeing my loved ones and close friends in the next couple of weeks. I'm getting my energy back and I'm ready for therapy and getting back to experimenting what I can do. I know the training is going to be tough, but I do believe God has beautiful plans and is going to make beauty out of all of this. I don't question that, I am just excited to see what that will look like and the adventures that will take place. And as always, I appreciate all of your support and prayers. and special shout out to my wonderful dear friend Alexa, who came to visit me for a few days this week. The time with her really encouraged me and I enjoyed being with my friends again!

"fear not, for I am with you;
    be not dismayed, for I am your God;
I will strengthen you, I will help you,
    I will uphold you with my righteous right hand."

Isaiah 41:10

 "Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, 4 and endurance produces character, and character produces hope, 5 and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us."

-Romans 5:3-5

Random recovery updates

Almost done with week 5 here! Its still so foreign being alone all the time, hardly any human contact through out my days. but i've just been abiding in God and knowing that there is a purpose to this point in my life. I have actually been able to read a bunch of the books that have been on my list but business of life had kept me from. Books are my new friends haha

I saw my pain doctor yesterday. Im doing so well that we are starting to decrease all my pain medications (very slowly).  Today is my first day! I am so excited to see how low i can go! Ideally i won't even need them at all. 

Today was the first day i showered and got dressed all by myself. Annnddd i did it just fine. :))  i can now drive-feeling semi normal.  So much more independence!!  it helps that i can do these things when people aren't here during the day. I can taste freedom! haha

I'm looking forward for everyone's semester to be over! Then Vonny will be  back home with me keeping me company. Plus wonderful people will be visiting!! (12 days till I'm reunited with my dear Alexa oberempt)

As always thanks for your prayers and support- I'm already feeling a lot better!

week 4

My sister is home! Thank goodness, I could really use her presence right now. It's nice having the whole family together and actually not being alone all the time. Thanksgiving was super low key because we just stayed here with me recovering.

As far as recovery goes, I have been in a stand still. It's testing my patience but I know it'll get there. It's just been a rough week. No improvement and a lot of problems sleeping. Last night I was in bed 12 hours and slept a total of 5. I'm holding onto hope and not letting myself go down the 'what if' road about my future. Things have definitely been turning around tonight. I'm in a lot less pain then I have been in the past 5 or so days. And the next few days i'll be having a lot more visitors so that'll be exciting and I won't be alone all day :))

Also, my friend Jason is a communications major and wrote an article on me and my nerve condition for a project. Part of his project is the amount of hits he gets so please check out this link, its not a long one or anything.
http://ireport.cnn.com/docs/DOC-1064463
I know he'd appreciate it and it might explain the story to some of you who don't know it all.

Week 2 Appointment

This week I am in a lot less discomfort. I can start to stay in positions that are comfortable so I have been able to read now which makes the days go by a lot faster. With more mobility I have been in less pain and see that this surgery really is a success!

I have a long road to full recovery ( I cannot even start physical therapy for 2 months), but I have already seen that ways that the implants have improved my life. Today my left leg felt exactly like my right leg! I'm hoping that is a new trend that continues to stay. We are still working on fixing the shoulder complications but I can't do occupational therapy on my scapula until the 2 month mark as well. Fortunately, they were able to add a new program to my simulator that is able to reach more of my shoulder area.

I went back to Northwestern today for my two week appointment (the drive was less painful than the last time PTL). They took the stitches out from where the wire used to come out of me, and took off all the glue and tape on my other sutures. All is well and it's amazing how much scaring he saved me by stitching me up on the inside of my body. I can't really do anything different than I could last week, my restrictions won't be lifted off until the 6 week mark.

I just need to take this time to recover and make sure everything heals properly into place. Luckily, I have plenty of books and Spanish games to keep me company while my friends are away! haha Things are going well and this week i will receive my digital copies of the x rays and post them on here :))

I watched a documentary (beware of Christians) where these Christian guys go backpacking around Europe in search of what it really looks like to live for Jesus and not just listen to what the American church and the society tells us. They came up with some interesting points and draw conclusions for themselves. Even though its hard, they live that way. They live that way because its worth it.

In a way this recovery/semester off has been teaching me the same things. I am taken out of the typical society, i have no specific "group or tittle" in life right now.  I have a lot of alone time, and in that time in that I used to be apprehensive, I have been able to come the God. I've been able to spend a lot of time meditating when I couldn't read and now reading the Bible again. That's solely where I have found my answers and my strength. It's incredible. I knew God was going to heal me this semester, I had no idea He would be able to heal and change so many aspects of my life. Taking this semester off was one of the hardest but best decisions of my life. A lot more healing and recovery to go but I have reached a new step in my faith and it gives me so much joy, even though I still am in pain.

11/17 update

Recovery has been going well these last couple of days! I am still in pain from the new metal in my body and from my  problems with my scupula/ribs, but things are still healing. My back is still pretty swollen especially around the battery pack but I guess it takes a while for you body to adjust to foreign objects in my body lol.

 The wonderful La Crosse girls (Siobhan, Jennifer and Darion) came to my home yesterday!! They just left here tonight to get to make sure Jen makes it to her concert bright and early tomorrow morning. I was just filled with such joy; they are driving home in the middle of the night, just to make sure they could spend time with me. Jen was not going to let anything get in her way from seeing me while I'm healing, and Jen is a pretty stubborn. I love those girls so much!! :)

They kept me company, I want out in public with them to goodwill and they were just such a blessing to me. my pain is always best distracted when I am surrounded by loving people. On friday, before they came to visit, Holly came over to catch up and spend time with me as well!  I have so many loving people in my life that take the time (and gas) to come visit me. I'm so grateful!

I was also able to to leave the house and worship tonight! I am not physically feeling all too well tonight, but I'm over filled with joy. And I get to see some more wonderful friends tomorrow! God's so good. I'm learning so much. It's ridiculous :)

Once again, thank you for the prayers. I really appreciate them, especially not knowing what things are going to look like after these months of healing.

I don't have another surgery this friday anymore! So I got that going for me. haa It's all the recovery from here. I'm kind of sick of it...which is unfortunate because I've still got a long way to go. haha I'm thinking the worst of it is over now though :))

I shouldn't be allowed to start occupational and physical therapy for 2 months. Doc wants all the metal and implants to be set in/healed more. Unfortunately, this week we have had some minor complications. My shoulder is not stabilized much at all. I haven't used it much so the muscles that hold my left scapula in place are really weak. Now that I'm moving my arm around again my scapula moves out of place.This is hurting/rubbing up against some of my ribs and then sometimes my spine. It hurts to breathe, on top of the complications of my disease (which can make it difficult to breathe as well). I don't really know what to think about it. The women who checks in on me everyday said to be logging it, talk about it at my appointment on tuesday and go to an urgent care if it gets really bad. I've had much worse hah She think's I may need to start physical therapy sooner. Little unfortunate to have this added to my pain but if it means on the road to getting better I'll take it!

I'm still sore but I'm moving around pretty well, probably doing too much just because I am not one to sit still. I try really hard if that counts. Surgeries really screw with you; mentally and physically. It can be exhausting. That's why I haven't wanted to write these past couple days. However, I continue to improve and become more self sufficient. (I put on my sweats to day by myself!)

This road to recovery is going to be a long journey, and not just from surgery but from my disease. It's kind of like world war two, I've got two wars I'm fighting hahah. One on each side. But I win both of them, so that's what matters ;) For some reason I was under the impression it would be an instant change. Don't get me wrong the implants are already helping but I still have some fighting to do.

I made a list of things I want to try if I feel better. After the surgeries I realized I had fixated too much on doing all these things. I had to give it up to God; yes these are all good things/goals, but they are still worldly things. God is all I need. I have been able to find so much joy in Him. No matter what the circumstance I've been learning to be able to find that joy and fixate on that.

I'm a runner at heart. I want to run a marathon, or half marathon, or be able run at all. It feels like I've been in a marathon these past four years. I can finally see the finish line; its making me antsy. I will finish the race strong, not knowing what's beyond that finish line, but knowing that I won't be alone. Time to get excited 

" Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize. Everyone who competes in the games goes into strict training. They do it to get a crown that will not last, but we do it to get a crown that will last forever." - 1 Corinthians 9:24-25

" I have fought the good fight, I have finished the race, I have kept the faith." -2 Timothy 4:7 

Okay, now I'm a little more sober minded to write on here haha

This weekend involved a number of awesome visitors as well as a lot of pain. The worst of the pain is over, or so I hope haha. This weekend had some rough points. Luckily, i have some wonderful friends who helped me get through it and encouraged me to turn to God. It was hard to focus and keep hope that things will be better, but ultimately I was able to find comfort in Him. The only one who will ever be able to fill me up. My peace and fulfillment will never come from my best friends, family members or future boyfriend/husband; it's going to come through Jesus and Him alone.

In between the extreme pain, I had some people to keep me company! Siobhan, (first and foremost) came home just to help me and be there for me at my weakest. It was more appreciated that she'll ever know. Then Brittany Ward spent a large portion of saturday with me; she brought me some beautiful flowers and gifts (this girl is too sweet!) Sunday afternoon was spend with Siobhan and our other 'sister,' Katie! It brought a smile to my face. In the evening, I spend sometime with Sydney, who came to see me amidst her insane work hours. I swear, few work as hard as her. I was so blessed with all the time I got with these wonderful ladies!

Britt keeping me company and encouraging me w her words and gifts

I really hope it's all up from here. The back pain is starting to get better, I get out of bed on my own sometimes and I can now lay on my back if I'm feeling up to it. I started making a list of things I can start to do. It's making me pretty excited but I just want to be there already haaa. If you have any suggestions let me know :)

Please keep the prayers coming for this recovery and for the implants to work just the way we envisioned them to work. And thank you for all your prayers throughout these surgeries. It means a lot to me and I know God heard them.

Some of my silly wonderful girlfriends encouraging me ;) haha 

2 and DONE

It may take me a while to write this one..haha. I need lots of breaks. BUT important the message is: surgery was a SUCCESS and NO COMPLICATIONS.  Praise God, He sure had his way in the surgeries. 

I did end up choosing to take the longg surgery and finish it all up. So I don't have to go do another surgery this coming friday anymore! 

Today's pain...feels exactly like they opened up by back, put in 3 more leads, extension cords and a batter pack/router in me. Let me tell you, its not a great feeling ahhaha. But I know that today is the worst of it. It'll start getting better from here. 

The implants seem to help my CRPS pain throughout my whole body so that amazing! Once I get better from the surgery I',m hoping I will be a new person :)))

Ohh and my sister came home for me this weekend! She is the best. I started crying I was so happy! Nothing like your best friend being there for you to help you recover. <3

God redeems

Last night was a rough night. I was exhausted, couldn't sleep throughout the day, and in a lot of pain. I kept thinking of the what the X-ray will look like of my back for the rest of my life...  in all honesty, I didn't like it.

I was frustrated with the ramifications of the implants and my body has not adapted to the impulses the implant gives me so I am tingling like crazy inside of my body and if i make a certain movement my whole body is zapped (it doesn't hurt/harm me- don't worry). I kept thinking about the what ifs... and for those of you who know me, soon has I get onto the what ifs in my life (which has some major factors of my life constantly up in the air) it's not going anywhere good. haha

Last night I think was the first time I really registered what my body will be like (aka full of metal and wires ha). I thought of all the possible precautions that i may have to take. I finally decided after talking to Jen that I needed to go to bed. As I laid in bed I prayed to feel better about everything in the morning; for me to be "strong" again. I ended up calling Siobhan and she helped calm me down. Whenever I would wake up in the middle of the night I'd just start crying.

 My outlook on what defines a "strong'' person has really been changing these past couple of years. For 4 years (going on 5) I have been told countless times that I am strong; "you're the strongest women i know," or "your strength is so encouraging." And I thought they said that because I acted like I had it all together in front of them. Or they were under the impression that I wasn't bothered or affected by what was going on in my life. I'd shove down my feelings for years, not letting anyone see me cry... Then came college hahaha

I live/d in the dorms; privacy is pretty much no existent there. People started seeing me cry when I was in a lot of pain or upset about what I can't do. But to my surprise they embraced it. I had friends who wanted to be there for me, and you know what? The comments about how strong I was most often came from those who saw me at my weakest. (Special shout out to Jen, Jase, Claire, Alexa, Hannah and Ryan-you guys helped me so much last year)

I've realized feelings come. Life happens. It matters how you respond to the trials. A verse that my unofficial "big brother" (Pher) gave me was; Jesus wept (John 11:35). Jesus is the strongest human to ever walk this earth and He cried when he needed to. It's what you do after you cry that really matters. Jesus obeyed God, gave Him complete submission. That's what I attempt to do, and THAT's what people admire and are encouraged by.

So when I woke up, I knew I needed to spend time talking  to God and dealing with my feelings. Slowly throughout the morning I could see God changing my perspective. I prayed, watched first free's sermon and was so encouraged by God. He has given me an adventure because I have no idea what my life is going to look like, but He has it all worked out for me. I've been able to fix my eyes on Him this morning and I'm doing so much better.

Day 5 of my robot process

Its so cool to know that this nerve condition and these spinal cord surgeries don't define me. My identity is in Christ!

Yesterday my discomfort diminished significantly. Such a blessing- I can finally think (semi)clearly haha. I still can't bend or twist my spine in anyway but I can move around a lot better and slept well last night. Things continue to get better and heal just in time for it all to be opened up again this friday. haha ohh boy.

Fortunately, I have the option of getting everything done with this surgery on friday!! It'll be a longggg surgery- have to put in three new implants, finalized the one that's in me now, and put the router in my back. But that way I could start getting on the road to recovery faster! The way I see it, I'd rather get it all done and save myself from another risky operation with my spinal cord on the line. I know it'll be quite a doozy, but then I can start recovering for good.

I can now have a little more independence in little tasks. I can get out of bed on my own (very carefully), i can go to the bathroom and I'm able to have my mom put a t-shirt on me (only had button ups)! I unfortunately can't shower for a couple of weeks but my mom helped me sponge bathe and dry shampoo my hair, I feel so clean!! haha  The restrictions are still the same but I'm a little more comfortable with moving my body and I am definitely not as sore.

It's a little crazy to think that this surgery wasn't even the very invasive one and they only put one implant in me. This friday I am having a extremely invasive surgery, and they're putting in THREE implants, wires inside of my body AND putting a router in my back to control the implants. So mind blowing. I'm not kidding when I say I'm becoming a robot, I have a remote control and everything!!!

Granted I just found this off the internet, but this is what it looks like for one of the implants. Its pretty unheard of to put four of them into someone. In fact my doctor is one of the best and he had to take several weeks to figure out a plan and see if he could make this work.

The support I have is remarkable. Yesterday Kristen (my big "sister") and baby Izzy came to watch me yesterday. They both helped the time go by! Yesterday I finally felt like I wasn't just waiting for it to be night so I could sleep. Isabelle was confused why I couldn't lift her up (she's 20 months and wanted to kiss me). Kristen lifted her up she gave me a kiss and said i love you. My heart melted and she definitely made my day! Kristen is busy and very pregnant, but she offered to take care of me on her day off <3 She has one of the biggest hearts and it's burning for Christ. She has always been like my big sister and one of my role models.

Today my dad is working from home to be my care taker and my grandpa is coming up to watch me tomorrow. I have a phenomenal family around me. My aunts, uncles and cousins want to check up  on me & encourage me in any way they can. They are the best. 

This may be a pain but I filled with joy for what is coming around the corner. God had a plan for me all along.  It's amazing the peace He has given me when the time came. And now, I don't have any anxieties about this surgery or the rest of the recovery. He gives you exactly what you need, in the moment you need it; not a single moment later.

"You make me new, You are making me new..You make beautiful things, You make beautiful things out of us." -Gungor You make beautiful things

This song has been played on my ipod the passed four days approximately 40 times haha I am just reminded very clearly that God is using me. All the pieces of me, He uses, makes it beautiful and glorifies Him through it. God is so good.

Today I am extremely tired and have been unable to take any naps because I have been too uncomfortable. So I've been trying to distract myself. I was, however, able to sleep better last night so that's a plus! Today I was able to do more daily exercises to test out the implant more. It seems to be helping!! Isn't a cure right now, but majorily helping. I am intrigued as to what it'll be like when all four of them are in and helping my pain throughout my whole left side. Right now, this implant is just covering the pain in my left arm. It's weird, I'm so used to not being able to do things with my arm that I forget to use it haha

I was able to take off my gauze from my incision on my spinal cord. 15 staples for this one. Im not going to lie, it looks pretty beast! :) and what adds to it is the wire coming out of my body on my left shoulder. I'll save some the the weak stomached and not put the pictures up but I they look pretty awesome.

As many of you know, I am not much of a TV person... at all hahah. I have instead been listening to a lot of music. And like I said yesterday, I can't make any movements with my spine bending or twisting at all, making it hard to read and hold a book. I'll get there. But any of you music junkies like me, please feel free to give me some new music haha.

The Woloszyk family gave me their lazy boy and I was able to get semi comfortable in that for part of this afternoon. That gave me some rest. As did my itouch because I found out it can make an audio Bible for me. So I was able to listen to that. :))

 My family has been phenomenal: my parents have been so gracious and helpful with my every need, Danny willingly helps me out in anyway he can and although Siobhan isn't here right now she has been in contact with me, constantly encouraging me and letting me vent. They all get excited with me about how this is helping and what it could do for my future. They are honestly just excited as I am, they have been through this whole journey with me. God has blessed me with such a supportive family, through not just this surgery process but the past four years.

Super exhausted. Good night.
In God's Peace,
<3 E

Day one of the rest of my life :)))

Had my first surgery yesterday 11/1. All went well, surgery itself took a little longer than planned but nothing went wrong. God definitely answered our prayers in that aspect! I am sorry I am not getting back to any of you. Things have been crazy and it hurts to make...pretty much any movement as all so I have not been responding. I am however more able to talk on the phone so I have done some of that.

This surgery put in one of the 4 implants in my body and I understood the process wrong so I may have told you differently (opps hah). I have the wound from going into my spinal cord and what he did was put a wire (comparable to a angel hair noodle) and thread it in my spinal cord and only sowed down one of the ends to my spinal cord ligament. The wire is kind of floating around in there so that's part of why its hard to make any movements. But I also have another hole by my left shoulder where the wire come out of me!! haha That hurts but is only for the trial period, then they will insert a router inside of me. I cannot bend, twist or lift anything until it heals. The scare tissue should heal in about 2 months. I have become very dependent which is difficult for me but God is teaching me to lean on others. You use your spinal cord for a lot more movements than I imagined, that is for sure.

I have felt the community support so much; everything from calls, messages, flowers, cards etc. Most of all thanks for your prayers. I thank you so much for your compassion and love you guys have showed me. I am doing well and thus far in the trial week it seems to be really helping my CRPS pain :)

God's answering prayers and giving me so much joy and peace. This is the first day of the rest of my life. I am in a lot of discomfort but doing well. Sorry for not getting back to any of you! <3

He will wipe away every tear from their eyes and

death shall be no more neither shall there be

morning, nor crying, nor pain anymore for the former

things have passed away.

-Revelations 21: 4

Surgery summary

End of this week I will be starting the process of becoming a robot!! haha The whole point of these spinal cord surgeries is to lessen the amount of pain I am, and maybe even get ride of it all together! 

The Surgery plan:

In the surgery my doctor will be sowing metal boxes connected to wires onto my spinal cord. There will be 4 metal boxes in my spine because my CRPS is throughout the whole left part of my body. This is one of the best doctors to go to (at Northwestern) but he has never put in four in one person before... We shall see how that works out haha ideally the surgery will intercept the pain signals when they reach my spinal cord and the signals won't even make it to my brain to be interpreted.

The first surgery (November 1st) is where he puts two of the stimulators in my spine but doesn't sow them all the way down or close (its considered the trial period). Surgery will be a couple of hours but it all depends on when he finds the right spot to place the boxes on my spine. I will keep them that way for a week and if they help he will finish up a week later on the 8th and start the same trial on the other two metal boxes, and that next surgery will be the 15th. Somewhere in there he also inserts a router in my back to help the stimulators work. If all goes according to the plan I won't need a fourth surgery, i would just have to go back to him the following week to tie up loose ends. 

I just want to thank all of you who have been so supportive. I definitely feel loved and cared for by sooo many people. It's helped me stay calm for sure. I am still not too nervous about the actual surgery, but a semi-apprehensive about the surgery not helping/being successful. This is one of my last options. But then again, there is always God ;) 
Giving it all up to him. My life is much better in His hands than mine anyway <3

Pre operation happenings

The surgeries are really coming up! In starting to get really excited... Also a little nervous. Funnily enough most of my anxiety doesn't even deal with the surgeries themselves. I feel so much   community when im out and about (especially when im in la crosse)  but for at least a solid month i will not be leaving my house- with exception to going to hospital. I just want to continue to feel the  support of all of my friends as well as their company. I just need to trust in the Lord knowing he will sustain me :) He is all I need.

My legstrong bracelets are spreading around! the support of people (some i don't even know) is just astounding. So blessed!