Go to God...

I was recently having a little chat with a lovely friend. She was offering encouragement and insight into her own life struggles. She ended with this:"It's ok to have doubts. Just take them to God, not the enemy." Yes!!! That!!! There is something similar that I always tell my kiddos (or rude neighbor kids who hang out at my house for that matter ;)). We speak LIFE in this house! Don't worry though, I am not under the false impression that anger never tries to creep in. Anger is not a feeling that we can just pretend away. It's really WHAT we DO with that anger that matters. So I encourage the children in my house, to come to ME or to DAD, NOT the person they are angry with. If you feel like you hate someone, or want to punch them or call them a mean name - come to ME!!!! I don't want them to go through life just stuffing anger or pretending it's not there. People are REAL and REAL people can be frustrating at times!!! Pretending like everything is skittles and rainbows doesn't make the REAL frustration go away. So, I tell them to come to me!!!

It's the same when we have problems in our lives!!! Whether it's a health issue, trouble in a relationship, dealing with the loss of a job, etc., ignoring the doubts, the fear, the anger, doesn't make these feelings or problems go away! I agree that sometimes we just gotta suck it up and put on our poker face, and, yes, sometimes that helps temporarily. But in the quiet, when we're all alone, sometimes those thoughts, fears, or doubts find themselves creeping back in. Instead of pretending they are not there - GO TO GOD with them. Don't let them just sit there with the enemy and incubate more negativity and doubt in your mind!!! BRING them to the light, bring them to GOD!!!! Let's His Truth pierce through the lies!! When our feelings fail us, we can run to the truth of God. Don't let the enemy have a hay day. Go to God. Bring your fears, bring your doubts, bring your anger - to HIM.

 Philippians 4:6 "Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus."

Amazing brains...

We haven't been all that social the last few months as I've been recovering. Too much mental stimulation or stress can just be well - too much for me. :)

Our church has an annual get together at a local farm though and the kids really look forward to it each year. I prayed we would be able to make it. Thankfully we did!!! I took it easy and made sure to sit in the shade as often as possible. After a bit, I could tell it was affecting me though, at which point we headed home. Once we got home, I headed back to my bed. As I sat there with my computer, I started to feel like a spasm was too close. I called my husband back to pray with me. Thankfully, the rest of the night I improved rather than getting worse.

It's so strange that I can do my recumbent bike, back in my room, by myself, for 30 minutes. I can work up a sweat and do some light weights, but walking around and mental stimulation, seem to affect me. It's incredible how amazing our brains are and what they do without us even thinking about it. Think of a small child learning to walk. Walking on pavement is clearly easier than hiking. It's not always a strength or endurance issue, as much as a coordination issue. When we go through life, we are always processing what is going on around us. Our brains are telling us what noises are important and what noises to block out. It's telling us to breathe, to walk, to look where we are going. It's coordinating all these various functions related to different organs and parts of the body. It's incredible really.

In MS, the myelin sheath in your central nervous system is attacked. It's like some of those wires in your brain have had a mouse go through and nibble on them. All the messages don't flow down smoothly like they are intended to. Some of the coating on the "wires" - which are transmitting these signals to tell your body what to do - aren't all protected and encased like they should be. This means that sometimes the signal is affected and can't go through smoothly, and then things don't work right. Other times, if the damage isn't too bad or permanent, the signal might hum along just fine, despite the faulty coating, and everything will work just fine.

Just like anything in the early stages of wiring issues, it might work one day and not the next. Right now, it seems like I'm driving in a car with faulty wires - sometimes the A/C works and sometimes it doesn't. Whenever you have intermittent problems with something in your car or a radio or TV and it seems like it's a wiring issue, what is your first method of treatment? Bang the blasted object and see if that fixes it, right? Makes perfect sense to me! Ha ha. I have yet to try banging on my head, though. Maybe that is a treatment option I should consider...Hm. ;)

At any rate, as I can see my brain struggle, it's a reminder of how amazing our brains really are. They do SO much for us!! So much that we don't even realize they are doing!! So next time you see me, if I'm a little slow or sluggish, maybe try banging on my head. ;)

Be still...

I was laying down trying to nap yesterday. I'm sleeping most nights and even sleeping in most days -yet I'm still so tired. This is a bummer, as it's nice when I feel more energized and ready to handle the day. :) I miss my coffee. ;) Anyways, I thought of how babies sleep more when they have growth spurts and I had this thought. Maybe I'm so tired and sleeping more because my body is HEALING!! Yes, wouldn't that be WONDERFUL?! Then I thought of how I had a verse on a post-it note by my bed about rest!

"The LORD will fight for you while you keep still..." Exodus 14:14.

And another great verse that probably should be on my night stand,

"Be still and know that I am God..." Psalm 46:10.

Resting doesn't always come so natural to me. It's something I'm learning. I love the idea of God fighting for me while I rest, though!!! I love the idea of me healing while I sleep!!! So for now, that's what I'm gonna hold on to. :) While I'm resting, God is fighting for me and my body is healing!! In what area do you need to let go today and let God step in and fight for you, while you rest in Him?

Progress report...

I don't want to bore everyone with all my health updates, but I am so grateful for all of the prayers and help!!!! I want to pop in and give an update!!! The short it: I am doing MUCH better!!! For those of you who want more details, feel free to continue reading.

It has been over three months since I have had a major relapse. I am so grateful. I have no real idea how this works with MS...since well, I've never had it before. :) So I'm calling three months with no major relapse - Good News!!!! I've completely weaned off the muscle relaxant and it's been almost three months since I've had a spasm!!! I still have fatigue and cognitive/stress capacity issues that need improvement and numbness & dizziness that come and go, but I'm walking normal and up to speed most days and I feel like I'm definitely improving!!! I've been getting better at my balance exercises, and I've been able to push myself more when exercising! I had been making dinner prolly once a week for the last several weeks, but now the last few days I've been in the kitchen cooking more!!! I've had a few dips the last few months, but I feel that recently the dips don't seem to last as long, maybe a day, or an afternoon. I seem to bounce back quicker.

I went to see my THIRD Neuro and I think I finally found a winner!! Super sweet Neuro with 3 daughters and 11 grandchildren. He came in dressed normal, no white coat, and no superiority complex. He said I was the boss! He told me he would make his recommendations and would shoot straight with me, but I was welcome to disagree with him and that he's not always right! I brought him information about the MS protocol I'm on. I'm hoping he reads that! :) Of course, he wants me on meds and made his recommendations, but was fine with me trying my current protocol. He in no way tried to "punish" me for not doing things his way.

He scheduled a follow-up MRI for December and then a follow-up appt with him. He wants my MRI on a 3 Tesla machine rather than the 1.5 Telsa machine I had it done on last time. So more detail! I was a bit worried that this would mean the tube would be smaller, but I called today and the tube is actually 1 cm bigger! They also said my husband could be in the room with me again!!! So I'm super relieved about that!!! :)

I'm still not driving and would love to see enough cognitive/stress capacity improvement and clearing of lesions on the MRI to feel comfortable with driving again. I'm not really anxious to get out and about everywhere just yet, but feeling comfortable driving again would be good!!! Also prayers we stay healthy, as sickness can cause relapses.

We also discovered osteopenia and a 2nd autoimmune blood condition in all of our hunting. The good news about the 2nd autoimmune blood condition, that I really don't know much about, is that when we retested my numbers recently, my numbers had come down quite a bit!!! So that looks like progress to me too!! :) I'm taking it!!!

I haven't been to the lab in about 3 weeks. I'm sure my lab tech ladies are missing me and wondering if I'm ok. LOL So I'm headed in tomorrow for more testing. So far my body seems to be responding extremely well to the protocol and we are grateful for the doors that God has opened.

Once again, thank you to all of you who have helped carry us through with prayers, help, support, encouragement. The Lord has also brought me an awesome girl who can help with floors and bathrooms. (Y'all know how picky I am, so we know this is a miracle!!!) Several friends and family members are still graciously doing my grocery shopping for me, and we also still have family that is pitching in with meals for us. We are very grateful and very blessed. Thank you all for your continued prayers and love!!!

In the valley...God meets us!

I sat outside today, enjoying the fresh air, feeling the wind blow, and listening to the birds singing and my kids playing. My daughter so sweetly set up my chair for me outside, so that I could get some extra vitamin D. She also brought me some cut up peaches to enjoy, as I soaked up the warmth of the sun. I sat there and enjoyed the moment, reflecting on the fact that I had just finished spending almost an hour doing some needed exercises and now I was just sitting back, enjoying the sun and the noises of nature. My life had been so busy pre-MS, plus I'm a do-er. Taking the time to exercise and sit and soak in the sun was not something that would happen very often - if at all! :) While I'm not happy to have MS, I appreciate the push, the force really, that makes me at least try to relax about things, take care of myself, and SLOW down. Of course, this is only possible because God has so graciously provided for our family. My husband can and IS willing to help me. My children, our extended family, and our friends have so graciously met us at our place of need and have gone above and beyond!!! We are SO blessed. I am SO blessed. In the midst of a terrible illness, in the valley, once again, God has met us here!!

He sees our tears...

I was having a particularly rough time. I had seen so much progress...then. Then I don't know what happened. I started feeling odd one night. I stopped doing my exercises for a few days, resting more and trying to give my body time to get past this. There's this difficulty with an unpredictable disease - while I want to feel like I can control it or blame a reoccurrence of symptoms on eating this or that, exercising too much, stressing out, or not relaxing enough etc, trying to figure all of that out and connect all those dots can cause unhealthy stress in and of itself! If I just KNEW it really didn't matter, I would probably stress less trying to figure out what might be causing a mini relapse or an increase of symptoms!!! But there is part of me, that while I understand there is the very real unpredictable part of this disease, still thinks I must be able to do something to help stop it, aggravate it, etc. I'm currently still trying to wrap my mind around my role in all of this. What to focus on, what to do, and what to let go of.

Anyways, that was all a side note. The point was, I was having a rough time. It had been about a week and rather than getting better or even staying neutral, I felt like I was continuing to dip down. Sometimes I would feel better from the dip, but I still felt like there was a slow decline. I had begun to feel more and more that my spasms were closer to returning. It had been around 2 months since having a spasm. I am so grateful to be rid of those things! Anyways, as always, God so faithfully met me.

My husband had an errand to run, I needed to go to the lab, and we had a grocery list! So we piled in the car to run around with Dad, while I stayed in the air-conditioned car of course! As I waited for my husband, I read through a devotional from Andy Elms that totally blessed me. It reminded me that God has a purpose and a plan. There are greater things at work here!! Thank you, God for that encouragement!

Then when we got home, I got on my recumbent bike. As I rode, I cried. I want to get better, I don't want to be slumping back. Yet as I rode, I could recall God's hand so faithfully and continuously guiding us on this path. I thought back to when I was in the hospital. That first night they gave me steroids was horrible. My body reacted poorly and spasmed and seemed to be revolting. I was so scared. What if this was Lyme and they were giving me the wrong treatment and that is why I was getting worse instead of better? That night in the hospital bed, I felt like God wanted me to stick it out with the steroid treatments, "Can you trust me with this?" I did. And I got better! I felt like that was being asked of me again, "Can you trust me with this?" Yes, I will!!!

Sometimes I feel so discouraged, yet there is this hope, this anchor. Faith...faith is the substance of things HOPED for. Anyways, here I was crying, exercising, trying to have FAITH and I get an e-mail from my cousin. She starts telling me how she was praying for me the night before, she had a VERY strong pull to PRAY NOW. She went on to say that she didn't know if there was anything specifically going on at that time, but she felt it strong and she obeyed!! She went on to say that God loves me and I won't be dealing with this forever, etc etc. I sat there in AMAZEMENT!!!! I don't know why, cause God is always SO faithful, but it still leaves me in awe!!! Here I am, little ole' Chrissy crying on her recumbent bike and God sees!! There are MUCH bigger fish to fry out there, people with much more pain and hardship, yet I still mattered to God. My pain still matters to God! In fact, God saw ahead to this moment and had my cousin praying for me and had her share that with me at JUST.THAT.MOMENT. God sees. God knows. He's faithful. Can you trust Him with whatever is overwhelming you today?

God's Truth

I'm having another dip. It's hard. I want so much to be able to "figure it out" and contain it. Was it the wheat I ate? The few corn chips I had? Was it stress? Did I over do it? Stay up too late? The list can go on and on really. But we just don't always get those answers. I suppose sometimes it's just that something screwy happened and my immune system, that is supposed to be helping me, suddenly starts attacking me instead. Isn't it so much easier when everything in life can be wrapped neatly and tied together tightly with a big bright bow? It's so much easier when we can figure it out and avoid "x" and bring about result "y". But that's just not a guarantee I have these days. One guarantee I have is - God LOVES me. That's gonna have to be enough. Cause I don't always see Him working. Many times I do. Many times I see Him opening doors and moving on my behalf. But sometimes I don't see it. Sometimes I get discouraged, afraid, emotional. Sometimes I wonder and have doubts. But I MUST CLING to the TRUTH that I know. The truth that is even TRUER than what we can see, feel, and hear. The truth that is everlasting - God's WORD!!!

Be grateful today...

None of us is guaranteed tomorrow. Or even our next breath for that matter. None of us is guaranteed perfect health or happiness. I think many of us go through life with a certain expectancy, though. An expectancy that we will wake up tomorrow, that the sun will keep shining - that we will be able to see it!!! This is something that isn't quite as certain for someone with MS. Of course, it's not so certain for any of us, but when you have MS, you have that extra reminder. You realize that truly you aren't guaranteed your health. Your immune system, for some reason unknown to you, might decide to go rogue and start attacking your brain, your spine, your optic nerve - places it shouldn't be attacking or even accessing for that matter! You might wake up unable to see, or unable to walk. You might wake up stiff, weak, or unable to move without your body spasming.  You might suddenly feel dizzy, confused, tired. Or...you might be just fine!

There is an unpredictability with this disease that can really pull against our desire to have a neat and orderly, well-thought-out, and planned life. I know many people roll with things much easier than me. But I'll admit -  that's not my specialty. I like to know what's gonna happen next. I like to plan and prepare. I like to think it's a gift I have - to be organized, planned, and prepared! :) I have a number of young kids, and if I don't plan ahead, well, we know how easily and quickly kids can take over!!! :) I try to stay on top of things. I was always really good at this in the past. But now I'm needing to learn to rest. To let go. To not worry! This is something I've known I needed to learn, but now it's a necessity. Now it's being thrust upon me. Because having several small children, homeschooling, and having a husband that works for himself wasn't unpredictable enough apparently for me to learn this lesson! :)

The unknown is just a part of my life now. Learning to be grateful for each day, for each ability, for each moment of grace from God is so vital. Life is a gift - enjoying it is a gift! None of us are promised our next moment. Enjoy each breath, soak up those peaceful, happy moments. And thank God for what you have. There's a part of me that's a bit upset that I'm happy that it's been 3 months since I've had a major relapse. I don't even want that to be something that needs to be on my happy list. But it is. It's where I'm at right now. So I can be angry about that, or I can be grateful. Grateful that I've gone 3 months without a major relapse. Grateful I can see. Grateful I'm not in pain. Grateful my body isn't spasming. Grateful I can breathe and care for myself. Grateful I can walk on my own and I can type. Grateful for today and trusting for God's grace for tomorrow.

Improvement...

Friends, I am happy to report that I am continuing to improve!!

I've been at Physical Therapy for about a month now. Today we went through some comparative markers to try to gauge what kind of progress I've had, and indeed I AM improving! Getting stronger and doing more! :) Of course, I've known that, and can see/feel that I'm doing better, but hey, now it's documented in my charts. Ha ha!!!

The dizziness is pretty much gone, I'm walking much better, and getting up to speed! I'm pitching in a *little* bit around the house, and I'm helping with the kid's schooling. I'm able to do some needed exercises, and I'm doing better with fatigue and mental stimulation, although I still have some room to grow there! I also have some numbness and coordination issues that come and go. but overall we are seeing tremendous improvements and I'm SO GRATEFUL! I was on a muscle relaxant, 10mg every 4 hrs. I have been able to completely wean off of that, and I haven't had any muscle spasms in OVER a month!!! Praise God!

Thank you all for your prayers and support through this. God is good!

I have begun my new autoimmune therapy, but we are still working out the details to get that in full swing. I'm still believing for a COMPLETE healing - just letting y'all know I'm not giving up on that! :)  BUT I am very grateful that the Lord has rather miraculously brought this alternate therapy to our attention in the meantime. This therapy has really begun to put a lot of the pieces together for me. With such early intervention, even in the natural, things look promising.

There are still tears I cry, I don't want this horrible, unpredictable disease, but I see God moving and working and it truly is Amazing. Even when we don't see it, long before problems ever arise, God is moving on our behalf, aligning and setting things up for our good. I still don't understand ALL of His ways, but I know that He's good, and He loves us. No matter what we see, think, or feel. That is the TRUTH that we cling to!

May God make you strong and bold...

Hello, friends! I started physical therapy a little bit ago, and I'm definitely seeing progress!!! I still have setbacks and times when fear tries to get the best of me, but I'm learning and growing and continuing to see God's hand of guidance.

We were supposed to start the disease modifying drugs today, but after much prayer, research, and consulting, we feel we are being led down a different path and I AM SO GRATEFUL!!! So continued prayers fo healing and guidance as we walk this new path!!!

I certainly had some crazy emotions while we were set up to start the meds. While it was scary and emotional, it was also a valuable path for me to walk to help sort through some things. Fear can be a thing for me, unfortunately. The fear of starting Gilenya was very real, and I didn't really have a peace about starting it. But I also felt like not starting Gilyena, while it wasn't doing anything, WAS doing something. NOT doing, IS doing sometimes, right? Especially in this situation, when it was easy to feel a bit like a ticking time bomb, unsure when another attack would come! Did that make any sense? ;) So I had to process a few things! Is my God big enough to walk with me, even down THIS path? For me trusting for a healing is one thing, but what about these meds now?! Ya know?! :) Is He big enough to prevent nasty side effects? Is He big enough to walk with me through these nasty side effects!? What if I die? What if I don't die and they screw me up just enough to not kill me, but leave me a vegetable? Can I still trust God even through THIS?! The answer is YES!!!! I walked that scary path in my mind straight to the end and had to decide!! The conclusion, God could be trusted!!!! He truly loves us, and we don't have to be afraid. This doesn't mean we won't be afraid! ;) This doesn't mean we won't go through hard times. But He can be our anchor!!!!

My daughter wrote out this verse for me awhile ago. It is by my recumbent bike where I exercise and I love it!!!

All in my head...

Our new favorite joke around here is, "Don't worry, it's all in your head!" Cause for me, it is!! LOL

When we first went to Urgent Care with my symptoms, she couldn't find anything alarming. So she encouraged us to plan a follow up with my PCP, but not to think too much about symptoms. "I'm not saying it's all in your head, but you know?" Yes, I know!! Actually, I do know how easy it is for me to have "sympathy pains", so I truly wasn't insulted by her comment.

Now, we have discovered it IS all neurological. So, when I have weird symptoms or tire too easily at physical therapy, we just remember..."It's all in my head!!" Sometimes, I go to describe something weird that's going on in my body, and I catch myself going to say...Maybe this is just in...wait it IS in my head!!!! I'm having a weird symptom!!! LOL

A funny...

We've all heard how dangerous the internet can be for self-diagnosis, right? Well, we've reached a new low over here. This is a convo between me and one of my children:

Child: "Are they sure you have MS, Mom?"
Me: "Doctors are pretty sure!"
Child: "Ok, cause I was thinking, if it's not MS, you might have AIDS!!!"
WOAH!!! LOL
Me: "What makes you think that sweetie?"
Child: "I was reading in a magazine. It said they prayed no one else would get AIDS. I asked (my brother) what AIDS was, and he said it was a disease!"

Well, that was QUITE a jump in conclusions there!!! Thankfully, I'm seeing more specialized doctors with more experience and training...

New favorite song...

Update...

We followed up with Infectious Disease, who ran SO.MANY.TESTS to make sure there weren't any underlying issues causing the lesions in my brain and spine. We also followed up with an MS specialist to get a 2nd opinion. They confirmed the Multiple Sclerosis diagnosis and they want me to start meds.

These meds do not come without a scary set of possible side effects and don't look all that promising. These meds do not cure, but simply try to slow the disease progression. Sounds like they hope to reduce 50% of relapses.

Thankfully we serve a mighty God and whether He heals me miraculously (Which we do still believe He can do and are trusting Him for!), or whether He "just" walks with me on this road (Which is really miraculous and shouldn't be taken lightly - that the Creator of the universe loves me enough to walk with me through this trial)...Either way, He promises that His grace will be sufficient. So we are continuing to move forward with medical intervention and continuing to trust for His guidance and healing!!!

Thank you, everyone, for your continued prayers, thoughts, help, and encouragement. I am progressing and slowly moving forward!!!

God redeems...

My Mom received a letter yesterday from a man in prison they minister to. They have been in communication with him for several years, and he considers us family. He told her that he and some of his buddies in the prison will be fasting and praying for me for 30 days!! Wow! He also sent me an awesome note of encouragement!!

Friends, if God can redeem and use a man in prison for life, to bless and encourage others, he can certainly redeem our mistakes and use us when we're surrendered to him!!!

Progress report...

Well, friends, my body is beginning to respond and I am seeing improvement. So grateful!!! We have several appointments scheduled about how to proceed forward. We are truly believing for a complete, miraculous healing, but we are trusting Him through this process.

When I was a small child I had a viral disease that was attacking my joints. It had me in so much pain. My Dad carried me around. It was rare and the doctors were unsure what would happen. They said if it went to my spine it could paralyze me. My Dad prayed for me and God healed me.

We do not always understand the How or Why or When things happen, but what we do know is this: God is good and He loves us. For now, we will rest in that and trust Him to guide us as we walk in this broken world.

Thank you so much to everyone who has come to help, done grocery trips, sent encouragement, mailed stuff, brought meals, come to clean, offered to help and PRAYED. We are truly very blessed. Your continued prayers mean so much to us!!!

Nine weeks ago, I was a busy homeschooling mom. I was helping my husband run his business and running around like a chicken with my head cut off.

For the last eight week, I have spent prolly 80% of my time on the couch or bed. I have had multiple Dr appts, visited a few labs, and been in the hospital. They have found 20+ lesions on my brain and several on my c-spine and t-spine.

This week, my mother took care of my kids, my mother-in-law walked with me to the bathroom, my sister helped feed me (afraid of spasms in one arm, IV in the other), my husband has helped me shower and has prayed with me and over me as the right side of my body tightens out of my control, my friends have done my grocery shopping.

I've been in some dark places with fear & anxiety and I have been surrounded with love and support that is unbelievable. I've had great doctors and nurses. Their conclusion is MS, but they are running TONS of tests to see if anything else is going on. I'm incredibly blessed to be so loved.

Please continue to pray. My brain needs to heal!!!