9.03.2013

Health (What's been going on)

*In order to keep my progress in order, I am going to post underneath my original post and will date each update.

Original post: 9/3/13
First of all, please excuse any typos because at this point, I am typing with one hand. : )

Oh goodness, where to start...
I have been struggling with severe pain for at least the last 2 months. Well, to be honest, for the last few years, but sometimes it seems to have improved a bit and then it comes again like a tidal wave.
This time it began with severe hip pain, along with my ribs and collar bone dislocating. We tried to figure out how it happened and even made a few guesses that maybe things got aggravated by a KRAV MAGA self-defense class that I took.  However, as healing never took place and as other joints started to follow, we knew it wasn't that. My stomach is also having a lot of issues. I don't know how to describe it, but I can be doing fine one minute, and the next minute it feels like food poisoning and after about 3-4 hours of getting sick, I start to feel a bit better. All of this sickness, eventually led to bleeding quite a bit, which was obviously a concern as well. We've been to several doctors, had just about every blood test done imagineable and just can't seem to figure out what's going on. I have had steroids a plenty as well...oral and shots in my joints.  In fact, I took steroids to go on a trip in July this summer, so that I could walk and I felt a ton better while on those (except for the stomach sickness), but the relief only lasts about 3-4 days for me and then it's actually worse once I come off of them. This fact led my doctor to believe that it's something autoimmune, but we still couldn't pin down what it was. We've been trying to figure this out for at least 4 years...naturopathy doctors, regular doctors, acupuncture, rheumatologist, chiropractors, more doctors, scans, tests, etc...

The week of teacher in service, things began to get worse. I began to get sick 24/7 and was losing about 10 lbs a week (making me thankful my efforts to lose weight the previous year didn't work. ha!). My joint pain continued to get worse as well, but it was mostly in my hip at that time, so I still thought I could teach. I woke up the Sunday before school started with searing pain in my left arm, completely unable to move it. My husband, who was already having to help me in and out of bed, was now having to help me go to the bathroom, shower, and attempt to fix my hair. I finally broke down and had to admit that if I was weeping because of the pain and unable to walk or move my arm, I couldn't teach this year. It was an excruciating decision for this people-pleaser who loves teaching children. I had already met the families and the kiddos and was just broken about it all day. I called my principal and she was amazing. She was understanding. She said that me getting better was the most important thing and that the Lord would work out the details on their end. Her sweetness of course made me cry again. : ) I was so touched by how my Prov. family handled everything, that it made me even more thankful to be a part of that school.

As of now, I still have no improvement of joint pain, but I was able to get into see a gastroenterologist. I have always been given a 6 month wait, so I was thrilled to get in so quickly, thanks to Dr. Fox fighting to get me in. When I went in on August 21, they scheduled a colonoscopy and EGD but they couldn't get me in until sept 18th. I was disappointed to say the least because the pain was worse than ever.  I called them on September 4th, to tell them the pain had gotten worse and that I wasn't eating or sleeping. I asked if there is anything we can do in the meantime...they ended up having a cancellation so I got in the next morning!!! Such a blessing! Dasun took off work to drive me and it went really well. The night before was really painful and exhausting, because you have to drink 128 ounces of "prep," when I was not only sick to my stomach but has already been having horrible bout of food poisoning like sickness for months now. I was up all night and the pain only got worse. I only fell asleep for about an hour total, so I was exhausted. The anesthesia couldn't have come soon enough! It was really nice to have a good nap. : ) I just wish they would have let me stay longer and enjoy the sleep instead of poking me with more needles. : )
I was pretty groggy when the doctor came in, but he said he found several lacerations/tears in the intestinal wall that can mean Crohn's disease, so they took biopsies to check for that. There are also ulcers which can be indicative of that, but not necessarily. We won't know until sometime this week when the biopsies come back. In the meantime, he gave me stronger pain medication, some medication that it supposed to help heal the lacerations inside (3 ginormous bottles of big pills- 9 a day), and something to hopefully help with the bleeding. We are hoping to get the results back and see improvement soon.

In the meantime, my sister-in-law Jenny, sent me a link to this girl's story and it was almost eery how closely our stories mirror each other. She also has an autoimmune disease and has had great success through changing her diet. Those of you that know me, know that I am already pretty strict because of other doctors orders, but I decided to take the plunge and follow what she's been doing to see if I can heal my stomach and see health again as well. She has had at least 2 years of remission right now, and that makes me so hopeful. I am not a diet girl by any means and have never stuck to one for weight loss purposes, but I am desperate for some pain relief...truly desperate. I bought her cook book and immediately felt better about having to do it. It has amazing recipes that make you feel like you may not actually have to give up eating everything you loved, which was so encouraging.

I have literally been crying out to my Savior throughout this whole process. Sometimes I feel stronger than others. Sometimes the only thing I can get out is, "please!" I have struggled mentally, physically, and spiritually. Pain wears you down...exhausts you...wears especially on your hope. I miss being able to hug my children, pick them up when they get hurt, and play with them.  I also feel guilty about all of the medical bills piling up because of me...especially with no answers coming in. Dasun reassures me that he doesn't care and just wants me to get better, but I know that it's a huge strain on our already tight budget. I feel so guilty that my husband is having to do all of his jobs and then come home and do all of mine as well.
Oh boy do I struggle! I have to continually put truths in front of my face. Truths that remind me of who my Savior is, what He has already done for me, His love for His children, that he personally suffered pain and agony for me, His past faithfulness, and so much more. Hopelessness is not glorifying to God and hopelessness offers a foothold to my enemy, so I have to fight right now.


"Those who know Your name will trust in You, for You, Lord, 
have NEVER FORSAKEN those who seek you." - Psalm 9:10

As of now, I can barely move my neck, my left arm, my right hip, and my right knee. They are always in pain, whether I sit, stand, or lie down. There's not much rest in this time, but there has been a lot of growth in my life. I have had to let people help me, which is hard for me even in small ways, but people have had to help in big ways as well. My sweet husband has been an amazing blessing from the Lord. I cry every time I think about all that he has done and continues to do for me and for the girls. My sister-in-law came to stay with us. Helped me wash my hair, mop my floors, and clean my house. My sweet friend Mrs. Temple brought my girls home from school for me and my friend Carrie has offered to do that as well. Our amazing landlords continue to bless us time and time again.  My school has been understanding and generous with my family during a time when they could be upset at the timing and the extra work it caused them. My dad took off work to take me to my root canal and take care of me afterwards (oh yeah...got to have one of those last week too. ha!). He has also helped in countless other ways. My friend Casey has already brought us meals twice even though she's a teacher and crazy busy right now. My family and friends have sent me texts and emails checking on me and letting me know they're praying even in the midst of their busy lives. Today, I got an email from the school asking parents to bring us meals and the slots were almost full. I just wept. I couldn't believe it and was so touched. I KNOW how busy the beginning of the year is and I know that no one has time to make an extra dinner for us. I am just so very thankful for people being the hands and feet of Christ during this time. Thank you all SO VERY MUCH!!!

Health Update:  9/15/13
First of all I want to thank you for wanting to keep up with what's going on with me. I am so very thankful for your thoughtfulness, prayers, and for all of your offers of help.

The biopsies came back, but were still inconclusive...they were indicative of Crohn's but nut 100% sure. My GI wants to run some more tests this week, so we'll hopefully have those results back in 2 weeks. I may also go visit a doctor in Missouri sometime soon.

I am feeling about the same...my neck and elbow are still immobile. My stomach issues are still present as well. My knee is actually getting worse. I woke up this morning unable to put any weight on it, so poor Dasun has been having to carry me everywhere today. Please pray he doesn't throw his back out. That's all me need! Ha!! He went and got me a rolling chair tonight, so that I can get myself around and to the bathroom tomorrow. The girls keep wanting to play on it. : )
The Dr. gave me some stronger pain meds, so if I lay really still at night I can get some rest which is such a blessing. 
Thank you again for all of your emails and texts checking on me and letting me know you're praying for me. I truly truly appreciate it.

Lamentations 3:22-23


22 Because of the Lord’s great love we are not consumed,
    for His compassions never fail.
23 They are new every morning;
    great is Your faithfulness.
Health update: 9/24/2013
Beginning on Friday, I have been blessed to have a couple of easier days. My pain has been less severe and I have been able to rest well. My knee swelling has even gone down a bit! After 3 solid months of things getting worse and more painful, I am extremely grateful to see some better days. I am so hopeful that we are making progress and that we are possibly on an upswing, but even if this is temporary, I am still grateful. I am sticking with my strict diet and am taking all of my medications religiously throughout the day (approximately 30 pills a day), so hopefully those things are helping. I am still unable to bend my elbow much, but since the swelling has gone down, it can move a smidge more. The same is true of my knee. I still can't put weight on it and am still using my rolling chair, but it's not throbbing quite as badly. 
I just continue to be overwhelmed by the Lord's provision as we have walked through this. My pride and self-sufficiency have been crushed, which has been incredibly hard and painful, but at the same time, it's been beautiful. I feel like I break down all of the time in response to friends and family that have poured out love on us. It has truly been amazing! Although I am home about 99% of the time which equals cabin fever, I have gotten out about 4 times in the past month or two, which is not easy now that I am unable to walk. Dasun, my landlord (and his family), and my sweet friend Chris Tucker, have all been helping to carry me to the car. My friends Carrie Tucker, Kimberly DeJarnatt and Tish Parsley have driven me around to Dr. appointments or school events. My friends Sarah McCullough and Kristin Temple are helping me get the girls home on school days. Another friend Bonnie Culp King is taking Kennedy to dance for us since Dasun isn't out of work during that time, which is another big help, and has offered to do a zillion other things. My Aunt Julie offered to come help us clean our house. We continue to have sweet friends from my school bringing us meals and others friends writing me encouraging notes. Some of the beautiful board members at the school I worked at, just decided on their own, to come over and help me on home-school days with Kennedy's school and pitch in with laundry or whatever needs to be done.  On one day in particular, I was in so much pain that Stephanie Easley even had to help me go to the bathroom...another painful opportunity for my pride to hit the floor, but to also be overwhelmed at the loving kindness that has been shown to us. We have even had friends randomly give us money to help with the medical bills. I weep even as I write this.  I am just totally and completely humbled, overwhelmed, and grateful. 
I won't lie, it's still hard for me...
-to accept help when I can't do anything in return but say thank you. I am much more comfortable serving.
-to hear my daughter say she's scared that I am always going to be like this and that she misses me at school.
-to not be able to do much on my own.
-to feel like I am putting too much on my girls, especially Kennedy, as she is having to help me with so much right now. I know it's good for them in a lot of ways, but I also see the toll that worrying is taking on them. These girls have seen sickness and death a lot and I know it's on their minds,
despite our efforts to reassure them.
-to not be able to feel like a normal mom and get to be the one who--- picks them up and comforts them when they're hurt, plays with them outside, picks them up at school (oh how I miss seeing those faces run to me at the end of the day), and a zillion other "normal" things that I am sure I have always taken for granted until now.
-to still be hurting and yet still be hopeful, battling to keep my eyes focused on truth and joy rather than on things I don't know or don't have control over.

BUT, I am so thankful for SO many things. I am thankful for these past few days of less pain, the love that's been poured out so sacrificially by our friends and family, and the lessons I am learning along the way are just a few. I love you all so much an TRULY appreciate your prayers for our family. I continue to be hopeful that they will be answered soon!


Health update: 10/7/2013
Shortly after I wrote my last post, I went with a friend to go see a doctor in Pineville, MO.  It went well and now I have a whole new slew of things I am trying. Ha! I wasn't looking forward to adding even more things to take, most of which are yucky, but I am desperate, so I was a good girl and followed directions.
During the appointment, he took a blood sample and put it under a microscope. It was connected to a large screen so that I could see what he was seeing.
This is an example of healthy blood:
 This is what my blood looks like:

Pretty screwed up. He said its very acidic and the blood cells lack oxygen. He also said that the stuff making it look like broken glass in between the cells is something called L forms caused from too much yeast in the system which can also cause a lot of problems. He said a lot of other things too, but those were the main things he wanted to focus on. As I said earlier, he put me on a ton of natural supplements and treatments and I have been doing them ever since. I am also sticking to my diet, which hasn't been super easy, but some of my sweet friends have been bringing me things I can eat, so that has definitely helped!
I had another appointment with my GI this past week and left feeling very frustrated for several reasons. I think my search for answers in NWA is over. I am thankful to say that I have a tentative appointment at MAYO in November, so I am still hopeful for that! 
I am also excited to say that I am continuing to do a little better! The bad thing is that I am trying so many different things, that I have no idea what's helping. ha! I am still in my chair, unable to walk, but the pain is tolerable. I am also getting a teeny bit more movement in my elbow. I am still getting sick, but not as much as I was before.  I am no longer losing weight, but have even gained a few pounds.  My neck is still really stiff, but again, the pain is tolerable. I just need help laying down and getting back up. After being in so much pain that I could barely get out of bed, I am super thankful for any relief. It's allowing me to sit and play cards with Kennedy, help my girls with their school work, and just do things that feel a little more normal. It's been such a blessing from the Lord, because my girls have really been struggling lately. After watching a funny cartoon a week or so ago, Adelynn ran into my arms crying and saying that she didn't want me to be sick forever. Then a couple of days after that, Kennedy asked to sleep with me. I could tell she had been crying. I asked her what was going on and she said that she missed things being normal...that she had a dream about me when I was outside playing with her and then she remembered me in my wheel chair and got sad. She broke down, and I cried too. We sat and talked about how I am ready to feel better too and that I am encouraged by the fact that I don't feel as bad as a few weeks ago. We talked about how faithful the Lord has been and how we know and trust that He knows exactly what He's doing.  She said she was worried that I wasn't going to get better and she really wanted me to be better before Christmas. My sweet girls are so resilient and so full of joy, but this is definitely taking a toll. I know that the Lord is cultivating their little hearts right now though, in ways I don't even know...readying them for adversity, showing them how to love others, to help others and put them first. I take comfort in knowing that He loves them even more than I do. With that said, the ability to make things a bit more normal around our home has been a big blessing.  Thank you so much for your prayers! I appreciate them so very much!!!

 Health update: 10/26/13
I am happy to say that I have been able to be on crutches for a little bit the last few days and today I even hobbled a bit! I am so thankful for some progress! My knee is still swollen, but since it went down a little bit, the pain isn't near as bad. My elbow seems like it's getting worse again, but my neck seems a little less stiff. My ribs seem to be a little better too. I have to watch those on a daily basis, because if I sneeze, cough, or even try to lay back, I will hear a pop and the whole healing process starts again. For now, I am being careful and am enjoying being able to hug again. : )

We are officially going to Mayo on November 8th, and will probably be there a week, but we don't know for sure. My dad graciously offered to take me, so that Dasun could stay here with the girls. We were originally going to take them with us, but I think sitting in the hospital and having to be quiet most of the day for several days straight isn't ideal for two energetic kiddos. Plus, with all of the things they've already been struggling with, we want to keep things as normal as possible for them. Adelynn has already been crying about me leaving though, so if you can pray for peace for them while I am gone, that would be wonderful. I plan on doing FaceTime with them every night so they'll know I'm okay. We also have some very close and precious friends, that the girls are already very close to, watching the girls for us while Dasun's at work (Thank you Carrie and Casey!). Those things and a list of friends that have offered to help if need be, make me feel a lot better about leaving. I am going to miss them SO much though. I have never been away from my girls for more than 2 days and being home and with them 24/7 for the last few months is going to make it even harder to leave. That may sound crazy. You'd think I'd be ready for a break, but I truly love being around my girls. They are such a sweet joy and blessing to me. I'm getting all teary just thinking about it. : )

While I am thankful to be seeing progress and continue to pray for healing and pain relief, I can honestly say that the Lord is continuing to teach me, grow me, and show me His faithfulness. I have had a hard time as I have struggled through the pain, the seemingly unanswered prayers for healing, and well-meaning peoples comments, but as I have sought Him more I have truly become thankful for this time, as crazy as that sounds. He has reminded me of His sovereignty and His ability to make beauty from ashes. He has reminded me of His heart for His children...that He keeps track of my sorrows...and has collected all of my tears in His bottle...recording each sorrow in His book (Ps 56:8NLT). He does not take my suffering lightly, but has compassion for His children and will use this suffering for a purpose. I have felt His love in such big ways as He continues to meet our needs physically and spiritually.  I am reading a book right now by Joni Earekson Tada called, A Place of Healing- Wrestling with the Mysteries of Suffering, Pain, and God's Sovereignty. To say that this woman understands pain and suffering, is an understatement. If you don't know her full story, I encourage you to watch this video. She's amazing! This is a new book that came out in 2010 when she started suffering from chronic severe pain on top of quadriplegia and a battle with cancer. She purposefully wrote it in the midst of her pain and offers such beautiful biblical insights on so many of the questions we struggle with as believers. Here are a couple of my favorite parts so far:

"Do I pray for miraculous healing for my chronic pain? You bet I do. Am I expecting it? If God wills, yes. "Whatever You want, Lord," I pray. "If it would give You more glory and advance Your gospel more quickly, I'm all for it!" ...Because isn't that the bottom line? That Jesus gets the glory, whether I jump out of my wheelchair pain free and tell people that my healing is genuine evidence of God's awesome power...or whether I continue smiling in my chair, not in spite of my pain, but because of it, knowing I've got lessons to learn, a character to be honed, other wounded people to identify with, a hurting world to reach with the gospel, and a suffering Savior with whom I can enjoy greater intimacy? And every bit of it genuine evidence of God's love and grace.(p.19)

"He has a purpose and a plan for my time on earth. He's the master artist or sculptor, and He is the one who chooses the tools He will use to perfect His workmanship. What of suffering? What of illness? What of disability? Am I to tell Him which tools He can use and which tools He can't use in the lifelong task of perfecting me and molding me into the beautiful image of Jesus? Do I really know better than Him, so that I can state without equivocation that it's always His will to heal me of every affliction?...Do I the poem, know more than the poet?" (p.67)


Wow! I love the beautiful wisdom that pours our of her and I have to say, that if she had not endured what she's endured, it would be much harder to hear her words. Isn't it always easier to hear something from someone who knows what you are going through?...who has been there? I have no doubt that God can use even pain and suffering for His good. I've seen it. How could we ever be truly compassionate, unless we ourselves had to endure hardships of some kind?  He has already used my mom's battle with cancer, to bring about compassion in me for anyone facing it...an understanding of what it all entails, that I never fully understood before. A longing to be there for people as people where there for us. It's my hope, that even if I am eventually healed of whatever this is, that He wouldn't let me forget the pain and desperation I have felt, so that I can meet other hurting people where they're at.  So that I will remember that this life is not about schedules, jobs, busyness, and to do lists, and in fact, as I realized, those things and your ability to do any of them, can be gone in an instant. This life is about loving God and loving others. Pouring yourself out to be the hands and feet of Jesus in a hurting world. Oh that I would remember that even when the busyness creeps back in. : )

Thank you in advance for continuing to pray over us in this situation. Please pray for healing, but pray most of all for God to be glorified in all of this. Please pray for my girls and for continued strength for Dasun. We are so grateful for your thoughtfulness and prayers. I hope you all know that! I will be sure and give you an update as soon as we have news from Mayo, but it may be a while.
Love you all!!!

2 comments:

Jenny said...

I started to type up a big, long comment, but decided to email you instead. :) Love you!

Sara Neufeld said...

Oh mercy, Ashley. Thank you for writing this out. I have no words. I am just hurting so much for you dear friend. I am crying out to God for you. I am praying for your full healing and restoration. I hate it that you are going through this. I love you friend.