Saturday, June 20, 2009

I am 2 days from calling it an official "2 weeks" of treatment. This week I have been experiencing more symptoms and cycles of the disease. Insomnia, Night Sweats, tender soles of feet, joint pain, stomach pain, swollen and painful lymph nodes in the chest, arm pits and rib area, chest pain and rapid heart beat, exhaustion, lightheadedness, acheness all over, swollen eyes and flu like symptoms...also a little bit of Katherine Hepburn going on here and there. :) All in all it was a good week. We had some friends come through for a couple of days and God gave me exactly the strength that I needed for that..and then some! I even had 3 days of no cane and very little pain in the hips believe it or not. I am learning to simply cherish those moments and make the most of them, instead of waiting for the next "'wall" to hit.

This week has given me many moments to reflect on the stories and life events of those so very dear to my heart. It is amazing how bogged down with our own little world we can become and how small our problems seem when we open ourselves to the pain and need around us. My heart has been so broken for some of my friends and relatives and for all that they are up against, physically, emotionally and mentally. Since there is little I can actually do in my state right now...which at times is the most frustrating of all for me because I am a doer...God continues to draw me to himself and I find myself on my knees pouring out my heart to Him for these people and their circumstances. In the midst of those precious moments, God seems to give me a calm assurance that he indeed is working His plan and that in the midst of chaos and seemingly lost hopes, He most definitely has everything under control. It is in these moments also, that God continues to remind me of His great love for me and for them...that though I want to be healthy and able to run around and "do" whatever needs to be done...I am actually in the best place doing the best thing i can do ...which is relying on the Creator, the Lifegiver, the Hope filler, the Provider, the Deliverer..etc. etc. ...and not myself....Its amazing to me how many times I want to be in control of the events, the plans, the outcomes, etc. and usually before I know it, I am grabbing back the wheel trying to steer things in the "right"direction. I am sooo thankful that God is sooo patient and doesn't write me off for the 5ooth time of wrestling for control again.
Romans 8;28-29a...I think I'm finally just beginning to grasp the meaning of these verses..
"And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them. For God knew his people in advance, and he chose them to become like his Son..." I know God is using this place where I am at...I am so thankful that He cares for me so much and wants me to become more like him, that He allows me to be in places that are uncomfortable and downright painful, for me to open my eyes to things I never would have made myself look at..whether it was in me or in situations around me.
I've been too busy to notice Him and too busy trying to do things by myself...He knew I needed to be in a position to rely on Him and to observe Him and what He is able to do. (For me and for people close to me.) It has been lifechanging...and I never want to be the same again.

Friday, June 12, 2009

1st week of treatment

I have had 4 treatments now. It has been a very humbling week. I have not had any allergic reactions to the medication and I cannot explain how grateful I am to God for that!! I have had lots of herxing (which means the symptoms of the disease itself flare up). That was expected and is expected throughout the course of the treatment. The idea is that the flare ups become less severe and less frequent. Some of the symptoms this week have been exhaustion,migrains, nausea and stomach pain, sensitivity to light, and heat. Burning sensations in the arms and hands and neck. Facial numbness, severe pain in the hips, legs and lower back. Rapid heart beat, swollen and painful lymph nodes in the chest and under the armpit and burning and tenderness in the soles of the feet. All in all it has been a pretty good week and I am so thankful for God's goodness to me.

Everyday, God has given me greater peace as I surrender all of my fears and concerns to Him. I know that in the midst of the chaos, He is with me and He is allowing the details to play out exactly in accordance with His plan. As Joni Eareckson Tada writes,..."When life seems crazy, and utterly out of control, it is not. When it seems as though God has forgotten you or turned His back on you to tinker with some other universe, He has not. When it seems like you have somehow fallen out of His favor, been edged outside the circle of His protection, or missed the bus on His love, you have not....And that's what it means to walk by faith."

Thanks for your continual prayers...they enable me to do such things!:)

Tuesday, June 9, 2009

June 9

The last couple of days seemed to be a little emtional for me. I guess just wrestling the fear and uncertainty again. Going into this treatment with a 50/50 diagnosis and treatment plan can be a little stressful at times. After talking to God again about all of the unknowns, my feelings, etc. I came across this verse:

"From the ends of the earth I call to you,
I call as my heart grows faint;
lead me to the rock that is higher than I." Ps. 61:2-3

Man, I am so thankful for details. I am detailed most of the time anyway, especially in my work, but in my most desperate moments, when I feel hope slipping away from me...the details that God includes in His promises are literally life for me. They are a firm hold that keep me from losing ground and slipping.

"The ends of the earth" speaks of regions we would never willingly go. (Whether that region might be suffering, depression, blasted hopes, you name it). However, at some point in the course of our lives, we all find ourselves "at the ends of the earth" And even "as" my heart grows faint- (not "if", but"as") - somehow reassures me that I 'm not a freak or a loser for finding myself in this spot (again). It's part of being in that region...when I'm overwhelmed, my senses may be numb, I am spiritually and physically exhausted, I feel battered, bruised, alone. God seems so far away, like he doesn't hear or respond to anything I am asking, sometimes begging for, and I feel like giving up, like throwing in the towel. But, in those times that my heart is so low and I feel so weak and depleted that I can't even drag myself to that High Rock, we can ask the Rock to come to us. Then He will take us by our weary hands and lead us to Himself. Isn't that great? Even when I am too weak and overwhelmed to come to Him, He will come to me! So that's the promise that I took hold of today and was refreshed by, no matter what is to come this week...God is my Rock, my refuge and my strength.

Wednesday, June 3, 2009

Results are in

Came back from the Dr.'s office. It was a good visit. He had all of the results back from all of the tests. Spinal Tap showed no MS...that is not even on the table anymore.
Spinal Tap showed no sign of Lyme either. (was expected)
Bloodwork..all negative except was a maybe....(not surprised)
MRI came back with questions...I ended up having an ultrasound to clarify. Ultrasound was clear, but the MRI looked very "diseased" in the hip

It is either Ankylosing spondylitis or Lyme Disease. I have had 3 blood tests for AS, all which were neg. Still...
There is no cure or treatment for AS. It is a disease where the spine and bones of the hip begin to fuse together. Eventually your whole body becomes fused and you can have difficulty moving, breathing, etc. (Don't know all of the details yet.) It does explain some of my symptoms, but not all.
Lyme can be treated and may or may not go away. Everything is kind of "ify" in the treatment, even the length of treatment. It could explain the AS condition if I actually do have Lyme Disease. I won't know unless I go through treatment and begin to get better. (Lyme is still the only one that actually explains all of my symptoms.)
So, I only have one the Lyme treatment. I get a pickline and start the IV treatment on Monday....and we shall see. I know it will get worse before it gets better.

Came across this verse today...

"He will have no fear of bad news; his heart is steadfast, trusting in the LORD." Ps. 112:7 (NIV)

I appreciate your be courageous (and for my "nonsticky" brain to remember that verse! :)

June 3

Hope you can give me grace today...thinking out loud....

I'm getting ready for another Dr. appointment. This one is supposed to give me all of the results from the spinal tap and last round of bloodwork that went out to CA. (Lyme speciality center) I'm a little apprehensive. The last time I walked out of this guy's office I was left with a decision to make. No matter what the results come back(and expect them to come back neg.he said) decision needs to have been made whether or not I will do the treatment for Lyme. It's not like it's an easy treatment...and the treatment can be as foggy as the disease itself. Since that day I have spent alot of time talking to God. Telling him my fears, my thoughts and my desires. Asking for more clarity and confirmation for the disease. I have had only one pos. test for Lyme disease..then 2 neg. I have been told so many contradicting things...who do you believe, what do you believe...only God knows the real answers...only He knows what path to take...what treatment, if any, is the one to follow. A couple of weeks ago I came across info. and people that seemed to confirm the diagnosis, but there was no absolute bloodwork involved....all the "uncertainty" leaves me so exhausted sometimes and in the middle of that exhaustion, the phantom disease begins to play its old tricks on my mind and body.
"Why does every inch of this journey have to be so dang hard?! God, why can't you at least tell me, for certain, what I'm dealing with here?!" Thoughts like these seem to rage within me ...moments like now, when I'm not sure if I want to see another Dr. and hear the unhelpful results he found...once again. Moments, when I am scared to face the unknown, I feel alone and helpless, weary and "done". These are the moments I am tempted to be afraid to hope again, hope for an answer, hope that my God truly hears my cries and cares for me. But I have learned, and am learning that it is at those moments that I have a believe what God says or not, despite what everything looks or feels like.

So this is the promise that I am trusting once again...
"Though youths grow weary and tired,
And vigorous young men stumble badly,
Yet those who wait for the LORD will gain new strength:
They will mount up with wings like eagles,
They will run and not get tired,
They will walk and not become weary." Is. 40:30-31

Waiting on God is an active, confident trusting- an instant obedience. When the Bible talks about waiting on God in my suffering, it means confidently trusting that God knows how much I need and can take. It means looking expectantly toward the time when He will free me from my burdens....those who wait for Him in their distress will recieve strength and endurance which others know nothing about. We mustn't wait in a dull sort of way with an indifferent attitude. We must rejoice in our hope - in spite of our suffering, in the face of whatever difficult life circumstance we may be enduring. (Joni Earicksen Tada)

"Yet this I call to mind and therefore I have hope:
Because of the LORD's great love we are not consumed, for His compassions never fail.
They are new every morning; great is your faithfulness.
I say to myself,"The LORD is my portion; therefore I will wait for him."
The LORD is good to those whose hope is in him, to the one who seeks him;
it is good to wait quietly for the salvation of the LORD. " Lam. 3:21-26