Rejoice in your Sufferings

Two little gifts this week that cheered me up. One was a "prayer shawl" from a complete stranger who was praying for me. Her church has a prayer shawl ministry where they pray over the yarn and knit the shawls together and then pray over each one in the church. I literally feel covered in prayer when I drape this over me. What a special gift from one of God's angels on Earth who doesn't even know me, but knows I needed prayers. The second was a knitted cross in my pocket from a friend who has cancer. How unselfish of her to be thinking of me, while she is the one undergoing chemo and going through so much herself. It is amazing the kind of people God puts in our paths each day. No matter what suffering you are going through, it is important to rejoice in it. I know it sounds strange. Rejoice in my suffering? I can't imagine going through every illness, surgery, or trial in my life with a chip on my shoulder. How depressing would that be? Instead, look to God and rejoice in the good things He has given you. He has given me amazing family and friends who stand by me no matter what. These little gifts from God in the form of friends and strangers to let me know it will all be ok! My boyfriend David, who has never had surgery or really ever been sick, had a hard time with this surgery. His first surgery in the year we've been dating. (Pretty good I almost made it a year! Almost a record!) Here he is feeding me ice chips in recovery, even if I didn't want them. What a true man of God to stick by my side in sickness and in health, in the good times and the bad. Of course the surgery didn't go off without my usual oddities. I was up all night in pain and had maxed out on meds. So I went back this morning, and because of my connective tissue disease, the tissue in my nose couldn't support the splints and stitches they had put in. So I ended up having them all removed today. It's always something! Now that the splints are out, recovery has been much better today. I thank God for keeping me safe through surgery #12, and giving me a wonderful Christian doctor who made me feel at ease through the whole process. I rejoice in the fact that God is using my suffering to help others. I love reading the emails, notes, and posts from people who have gotten something out of the blog entries. It means so much to me that through all of this, I can maybe touch one person's life and bring them closer to God. If all of this suffering is for that, then it is worth it.

"We also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us." -Romans 5:3-5

From Jesus Today Devotional (same author as Jesus Calling)

I will praise you in this storm

This has been a hard couple of weeks. I have struggled to stay positive...and face reality. After having to postpone the endometriosis surgery because I was sick, I only got sicker. After 4 different antibiotics and 2 rounds of steroids, I was not getting better. My lungs were weak, it hurt to breathe, and my sinuses were killing me. I went to the ENT and got a CT scan of my sinuses. My left side was blocked and it wasn't draining. There are polyps and cysts in there which don't go away with antibiotics and steroids. The answer? You guessed it. Another surgery. He scheduled it for this Thursday and I left his office and acted like nothing happened. I moved on with my activities and didn't mention it again. I continued to schedule meetings and work things. Yesterday I went to the pulmonologist to get my lungs rechecked. Apparently I can't breathe well through my nose (which I must be used to) and I am putting too much stress on my lungs and my poor rib cages are bruised and sore. He said I HAVE to have surgery Thursday.

So here I am. Wide awake early in the am with anticipation of the reality. I am having surgery tomorrow to remove the cysts and correct a deviated septum. I have really struggled with emotions this week. I have for the most part kept quiet and acted like it wasn't actually happening, but it is. And I am mad. Why another surgery? Especially when I already know I have to STILL have the endometriosis one in the near future.

So I turned to my Jesus Calling. Have you gotten a copy yet? It is amazing and seems to always speak to me. Here it was in all caps at the top of the page... "I AM A GOD WHO HEALS" You receive the healing that flows naturally from my Presence, whether you seek it or not. But there is more- much more- available to those who ask. So today I am asking God! Asking him for healing for this broken body and tired soul. I am asking him to heal you too. Whether it is physically, emotionally, or spiritually, I pray He heals you. What are you struggling with today? Take it to God. Nothing is impossible to Him. "Ask and it will be given to you; seek and you will find." -Matthew 7:7

The hardest part of that is it is in His timing. Do not give up on Him. Even if you've asked a million times for healing of some sort, he will answer in His timing. Do not be discouraged. This will be surgery #12 for me. I am obviously still not "healed" completely, but I know God has a bigger plan for me. So I will continue to praise him through this storm!

One of my favorite songs "Praise you in this storm" by casting crowns Watch the video, read the lyrics http://www.youtube.com/watch?v=xGPS8sa-bRQ

And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

A different plan

As I wrote my last post, I was in a a lot of pain. I kept thinking it was just a normal sinus/ear infection and things would turn the corner. They turned the corner all right, but I continued to get worse. Tuesday I thought I had a sinus infection and decided to go to the doctor. They started me on steroids (prednisone) and said it was probably viral. By Wednesday an ear infection had crept in the picture adding antibiotics to the remedy. Thursday I wasn't feeling any better and by Friday I could hardly breathe. My chest felt like an elephant was sitting on it and I was gasping for air. It hurt to breathe and even worse to cough. So back in to the doctor I went. They treated me for a lung infection called pleurisy and gave me a strong shot of an anti-inflammatory to reduce the inflammation in my lungs. Awesome! Three infections and a lot of meds. Surely I will wake up Saturday morning feeling like a new person after all of these drugs....Nope. This morning I woke up choking on fluid and couldn't quite get a breath. To the point where I couldn't speak without choking. I laid in bed until my mom came to pick me up to go to the emergency clinic. After a physical examination I was told I was getting very little air movement in my lungs and that my body was working hard to breathe. (Well, yes, that is why I am in here!) :) I got a lung and sinus x-ray and one side of my sinuses was blocked. I already knew I had a sinus infection and the blockage just seemed par for the course at this point.

They told me to stop taking the oral steroids and antibiotics and we would start a more aggressive treatment. I got two shots in the rear of a heavy duty steroid and a much stronger antibiotic. Then they gave me two breathing treatments which made me jittery and just "yucky" feeling. After all of that I felt worse than when I arrived. I got to come home to sleep in my own bed and I will go back tomorrow for more treatment and a re-evaluation. I am still choking on fluid and I wish more than anything I could use a vacuum and suction it all out. My mom has been the greatest...getting me tons of food which I was craving but didn't feel good enough to eat and not leaving my side even when I am passed out asleep!

With all of this said, I was supposed to be heading to the Mayo Clinic on Tuesday for another operation. I have had 4 surgeries for my endometriosis here in Greenville and it was time to go see the top endometriosis guys in MN this time. My surgery was scheduled for Thursday, but as God's plans would have it, I am too sick to have surgery. It would be really dangerous to go under anesthesia with a respiratory infection, plus I am not feeling up to doing much at all right now.

Funny how God works. I was not looking forward to yet another surgery (#12) and I kept thinking of reasons we should postpone... I know it needs to be done to take care of the pain, but I wasn't mentally ready for another hospital stay. Little did I know, my "excuse" was more illness. UGH. Anyway, I would appreciate your prayers during this time, but mostly for my mom. She has the hardest time with it all. It is hard to watch your child suffer so much and for so many years and she does so much for me. Please pray for her strength and her emotions as we keep fighting these infections and reschedule the next surgery.
Love to all xoxo

(Here is my view on my bed... my tissues, inhalers, meds, and of course my fan!)

Family Time

Last week was family vacation with my mom's side of the family. After God's unconditional love for us, the love of family is unmatched. I look at my grandmother, Bebe, and grandfather (who has passed away) and what a wonderful family they have built on the love of Christ. Their 7 kids have raised all of us the same way. "Train up a child in the way he should go, and when he is old he will not depart from it" Proverbs 22:6. People ask me all the time how all 32 of us can get together so often for family dinners, birthdays, vacations etc. and everyone gets along and enjoys each other. To me it is simple. We all have  a great appreciation for what God has given us and we feel blessed to call each other family. We are there for each other through the best and worst times and I know I can count on any one of them at any time. 

 I pray today that you take the time to thank God for your family, big or small, near or far away. Reach out and let them know how much you love them and how thankful you are for them. Life is so short, and we never know how much time we have on this earth. I like to live everyday to the fullest and make sure not a day goes by that I do not tell someone close to me that I love them. These words can go a long way! 

Daily Struggles

      What does EDS mean for me? Lately I have been having some bad days. I went a good two months symptom-free, but it always comes back without warning. I cannot walk too far at all without my legs deciding they are done. When they decide they are done, they feel like jello and I can hardly keep it together to make it to chair. The pain is sort of throbbing, tingling, but so deep I cannot get to it. I want to beat on my legs with my fists. It doesn't help, but for some reason I do it anyway. And its not just when I'm walking. Trying to sleep is always an issue because I cant get comfortable. The picture above is from a support group I am in. EDS is a connective tissue disorder that affects your whole body. Yes, your whole body! Think of everywhere you have joints or muscle... connective tissue holds them together. My connective tissue is faulty. The girl in the picture is wearing braces. I have them all. In a bin in my room is my "EDS" bin with physical therapy things, knee braces, a back brace, and custom wrist braces. Luckily, I don't have to wear them all the time and never at the same time. Its just a daily thing. I wake up and decide if it is a good or bad day and what needs bracing. I did learn the hard way that if I act too tough and do not wear the brace I need, it will dislocate! I used to end up at MD 360 or the ER with dislocations, but now that I know what it is and that it will happen often, I am able to "relocate" things on my own. OUCH!
      I have been trying to find positive moments in this past week as I have been struggling with the pain and being annoyed that it is slowing me down. I was reading my "Jesus Calling" every night before bed, and every night it spoke to me in some way or another. For example, on June 27th (a particularly bad day) it said "Rest with me a while. You have journeyed up a steep, rugged path in recent days. The way ahead is shrouded in uncertainty. Look neither behind you nor before you. Instead, focus your attention on Me, your constant companion. Trust that I will equip you fully for whatever awaits you on your journey." What an awesome thing to hear! Though I do not know what my body will feel like day to day, HE DOES. He is there ahead of me and promises not only to watch over me, but to equip me for whatever awaits. Isn't that so reassuring? Whatever you are going through right now whether it be health related, relational, financial, anything....He has equipped you to handle it and He is there before you.
     I have been so encouraged by the comments from some of you and how this has touched your life or someone you know. I encourage you to leave comments on the blog for others to see, as a lot of people may be encouraged by them too. As you read this blog, know I am praying for you! For whatever journey lies ahead, and whatever journey you have been on already.

"I am with you and will watch over you wherever you go, and I will bring you back to this land. I will not leave you until I have done what I have promised you." Genesis 28:15

Validity from God

So I am not sure why I was so hesitant to start a blog. I've lived this "story" and I don't always find it very interesting :) But I kept feeling that tug from God, and yesterday was the day. I couldn't decide on a name for the blog, but then I thought of one of my favorite verses, Jeremiah 29:11. "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." That has been my life verse for quite a while, as I had to put full trust in the fact that, through all of my illness and hardship, God had a bigger plan. So I named the blog God's plans, not mine.

As I was rolling around in bed last night, wide awake, I decided to read my "Jesus Calling" devotion book. If you do not have one, it is a must-have. It is my favorite devotional and always seems to speak to me. I opened it up to the date, June 18th and I was blown away. There was my validity from God. The verse on the page was Jeremiah 29:11 and the opening sentence was: "You are my beloved child. I chose you before the foundation of the world, to walk with me along paths designed uniquely for you." I felt like reading this was a little wink and a nod from God. Validity. Though my paths have not been ones I would have chosen for myself, they were designed uniquely for me and with a purpose.

Tomorrow I will explain more about my EDS, but today I wanted to share this awesome God moment with you! Have a wonderful day and watch for God's little winks and nods.

Trip to the Mayo Clinic

My trip to Mayo was filled with "God signs". In our small hometown airport, the first person we saw at 7am when we arrived was my mom's doctor. The doctor, who over 20 years ago, diagnosed my mom with a "strange muscle disease". They didn't really know what it was but she was wheelchair bound for a while and then walked with a cane. Her doctors had not seen anything like it and just treated her symptoms with various injections, IVs, and therapies. So to see her doctor after so many years was definitely a God moment. My mom explained where we were going and why. He looked at her and said, "this has to be genetic. I bet whatever she has, you have too."

We arrived in Minneapolis and it was snowing like crazy. All flights were cancelled into Rochester. Our appointment was first thing the next morning and we couldn't miss it. If we did, we would be put back in the pool of appointments and this trip would be for nothing. We rushed down to the bus area of the airport and sat and waited for a bus with tons of other people trying to go to Rochester too. Mom and I plopped down next to a nice looking lady who began talking to us. We could tell immediately she was a southerner as well. She was going to Mayo too, and this was not her first time. She told us all of the ins and outs and what we needed to know to get through the process quicker. Each bus came and went and we were never on them. (There was a long waiting list) After much prayer, asking God if it was His will, we would get there, a nice older man came up to us. He had gotten a cab and wanted to know if we wanted to split it with him. (It was a very expensive cab ride, so of course we wanted to split the cost with someone) We took it as a sign and jumped in the van with him. He was a nice grandfather type who was also going to the Mayo Clinic. We chatted the whole ride there and I knew he was put in our path for a reason.


We started my appointments bright and early the next day. After many tests and office visits I was starting to wonder if I would ever get a diagnosis. I asked one doctor to please refer me to genetics because I felt like it had to be the same thing my mom had. It was way too coincidental that at the same age my mom had the same symptoms (and still does sometimes). The neurologist was hesitant and said I wouldn't get answers from there, but she referred me anyway. We went to genetics, did more tests and family history, and....drum roll please.....got a diagnosis. FINALLY! After 10 years! Someone is acknowledging my pain and giving it a name. Ehlers-Danlos Syndrome. And yes, it is what my mom has. I have never felt such a weight lifted off of me. I felt like I lost twenty pounds in that moment. I said a silent "thank you" to the man upstairs for bringing me here and then to my mom who stuck with me throughout the whole journey.

Though it felt like the end of a journey, it was only beginning. Only now, with a name.