Friday, September 9, 2011

People have asked me what's up for awhile. So I thought I would catch you up to the Schake Saga....;)

In November of 2010, Annie, Koty and I traveled to North Carolina to see our Dr. there. Not too long after that our doctor retired. We were midway through our treatment, that seemed to be working, by the way. So you can imagine how frustrated and grieved we were to again find ourselves at what seemed to be the starting line.
Our doctor was able to at least write scripts that would last us until we were able to find a new doctor. We had built a close relationship with her and were sad to see it end. God had brought us to her, there was no doubt about that. He knew I needed her reassurance and her support and her understanding of what it was like to live with Lyme.
There was only one idea that crossed our minds as to what to do next. We ended up connecting with a doctor in D.C. who was one of the leading specialists in Lyme disease and who had actually taught Dr. B (our North Carolina doc.)
It took us at least 4 months to get in to see him. It's amazing during the waiting period what your mind can take you through. Of course this whole journey has been a waiting period to some extent, but I found myself once again fighting my old anger, frustration and fears. Some of it was pointed towards God and the other was pointed towards the injustice of a system that is supposed to be set up to help people, but in reality it is there to mostly serve itself. I felt out of control once again and at moments found myself face to face with a fear stricken desperation. Those moments remind me of being held in a straight jacket, not that I've ever been in one, but my disease and my circumstances have made me feel exactly like that at times.
The thoughts of hoping and trusting only to be let down again, whether by circumstances or people, seemed to suffocate me at times.
It seems so easy to say, "so I trusted God and knew that he would see me through once again."
Eventually that is what happened. But is doesn't always come so easily to me, I am ashamed to say. Once again, God in His grace loves me and stays with me during my struggles. What was so humbling to me at this time was to be reminded of Romans 8:34 "Christ Jesus is the One who died, but even more has been raised. He also is at the right hand of God and intercedes for us"...... So my prayer became, "Thank you, Lord Jesus, not only for knowing how much sifting I can stand, but also for being there with me, praying for me while I'm going through it." Amazing the humbleness and power that fills you when you understand that God is praying FOR you.

Anyway...Long story short, we found a doctor in D.C. who specializes in Lyme and who is actually a forerunner in treating the disease. We traveled up to see him in May of this year.
The closer we got to the appointment, my fears and frustration seemed to escalate yet once again. ( Unless you've been in a situation where your hopes and thoughts are continually destroyed, you might not understand what I'm talking about when I speak of fear in that way. I was afraid to hope, to trust really. In someone, even though they may be good or know alot of information, but to trust someone once again with hope, it's frightening. I didn't know if I could be let down again. Every doctor that God has led me to seemed, at the time, to be the last straw. Going to this doctor and knowing that he was one of the tops of the totem pole, I absolutely did not know where to turn if this didn't work out.) ..."Trust in the Lord with ALL your heart; do not depend on your own understanding. Seek HIS will in ALL you do and He will direct your paths.' Prov. 3:5-6.....this verse came to mind as we entered the clinic and His peace flooded my soul.
We have been on treatment with Dr. J since May. He was surprised at how well I was doing at the time he met me. Which reminded me that sometimes I look at where I am, rather that where I've been. With Lyme, it's like watching the grass grow. It's hard to see the improvements when you are living every day, but to look back at year ago and compare where I was to now...unbelievable, the difference. I have to make myself stay in that mind frame, so that discouragement and despair does not have a foothold in my thoughts.
Koty is doing fantastic. We will see what the doc says when we go to see him at the end of this month, if he has to continue his treatment or not. Sometimes when a patient reaches a point of showing no symptoms, then they are put on a "maintence treament" for a time just to be sure that everything has been eracticated. Koty has been symptom free for over a month now.
Annie still struggles with some of her symptoms, stomach pain mostly, but overall, even her symptoms have disappeared. (VERY EXCITING!!!)
Alot of my symptoms are gone or at least the cycles are longer, which is good. My bad days are less frequent and farther apart from each other. When I do get them they don't last as long either.
The doc also looked at Syd and Madi's symtpoms and they will be starting treatment sometime soon. Probably as the other two go off. (That was a very big blow i forgot to mention :)....but Syd and madi will be needing treatment as well. they have had symptoms for a long time, but again , everyone is different and their's took awhile to show themselves full force, so I think it was all in God's timing.
With that in our future....Eph. 6:10-12 comes to mind...."But in You, Lord, I am strengthened by Your vast strength." Can't , or wouldn't want, to live this life without Him!

Saturday, November 6, 2010

It's been awhile since I have had a chance to jot down what's been going on. The last 2 months have been up and down for me. When I 'm not struggling with pain, I have been trying to get some things done before I'm unable to get around again. Pain and long lost Lyme symptoms have increased. That was to be expected. The meds I have been on for 2 months now have been drawing the "cyst" form open which causes the symptoms to return. The doc. says November will be a rough one, but hopefully I will begin to turn a corner if I can stay on the meds. I have had alot of heart issues this last month. Things like "fluttering" or skipping beats, etc. The burning is back and I wake up from the firey sensations almost nightly. I traded in my insomnia for vivid and panic driven nightmares. (yee-haw! :) So I feel exhausted most of the time. Have had a hard time thinking and processing through a conversation. Pretty wiped out when I have had to be with people for any length of time. I have been on steroids since July. They have enabled me to get up out of bed and get around. I have had to decrease the dosage for alot of different reasons, but it looks like I will probably have to remain on them for the duration of my treatment to decrease the inflamation and pain. (By the way, I have to ask....why is it that when most people are on steroids they look like they should be on the cover of Muscle Magazine, but when I'm on them I look like a floatation devise? lol)

Anyway, Annie and Koty have been troopers. Both of them have had increased symptoms. Annie still struggles with nightmares, etc and her joints giving out on her. Koty has had to give up bike and scooter riding as his knees and ankles get easily pained from those activities. They both wrestle with the same burning sensations, migrains and general muscle pain. We have gotten good reports from school, so we've been very thankful that their ability to concentrate has not been too effected at this point.

A week or so ago, we received news that our Dr. will be closing her practice by the end of the year.....very long story. That leaves us almost back at the starting point of treatment. We know what we are dealing with of course, but finding a new doctor with the same philosophy and treatment plan gets a bit overwhelming. Our doc has reassured us that she will not hand us off without at least interviewing the next doc to see if they are on the same wavelength, etc. However, it has still been a hard blow right in the middle of treatment....again.
It's been a very trying couple of weeks for me personally. I'm not sure if we will have to start all over with a very different treatment, or even be able to get in to see a new doc before our meds are used up, which could cause more problems with getting treated properly, etc. There are moments when I am fine only to turn around and find myself weeping uncontrollably, wondering how can we keep going on like this? I know that God knows all things and that He is in complete control of our lives and of our entire treatment plan. It's just keeping my eyes fixed on that promise that can get hard to do sometimes. I find myself, yet again, surrending the plans and timelines that I have for my life and exchanging them for God's. Faith isn't faith until it has had the opportunity to be tested and tested again...and again and again, I'm finding. The lessons I have learned and continue to learn do not come easy nor come without great sacrifice, but I am so grateful that God has cared enough about me to give me the opportunity to learn them, and to begin to see Him for who He really is, not just what He can do for me.
Today I choose to claim this verse and ask that God continue to show us what HE is capable of doing....
"Now to Him who is able to do FAR MORE abundantly BEYOND all that we ASK or THINK." Ephesians 3:20

Wednesday, September 8, 2010

Haven't had any serious side effects today after starting my new treatment, which is always a good sign. Also, had some good news this morning after talking with the doctor. I was getting a little discouraged about the steroids and some of the side effects I have been experiencing, but through my conversation with the doc, I was again reminded how God always knows best and He always has the big picture. I love the example a speaker gave recently about God's point of view verses our own. (I know I have given it before, but it bears repeating.) Our lives are like a tapestry and God's view is looking down at the beautifully finished picture. Our view is the under side of the tapestry, the side that has all of the yarn jumbled together. Many times we can't make sense of our circumstances or a given situation, but God always sees the finished picture. To connect the dots......I was discouraged with the fact that I seemed to be the worst case scenario with my symptoms for Lyme disease that my doc has had, at least when it comes to the nerve/ neurological damage (muscle shakes and pain) know, the whole "why Me?" pity party. Anyway, I find out today , because of that specific "problem" I will not have to experience all of the awful side effects from the meds through this leg of the race, because the steroids will work against them. (Which means that I should be better off than most.) I know it may seem small, but honestly I hung up the phone today and smiled. It was as if God was smirking and saying, "You know, you really can trust me.....I do have your best interest in mind."
Today I have been so grateful for so many things, but mostly I am so very thankful that even in the midst of tragedy or seemingly shattered dreams, God is absolutely in control and has me in the palm of His hands. There is no better nor stable security than that.

Tuesday, September 7, 2010

Tomorrow I start the next level of my treatment. My doctor had given me several weeks "off" so that I could get the kids settled into school, etc. (Which means that I was postponing my next increase and med change). I had a crazy summer. The beginning was about par for my pain, etc. Then July hit and I was suddenly doing worse than I have ever been on treatment. I was back to being unable to move without help and without screaming from the pain. I think I wore out my poor family's ears and nerves. The doctor put me on steroids, which did some amazing wonders for me. The last 6 weeks I have found myself crying due to the activities that I have been able to be a part of. For the first time in 4 summers, I was able to get into a swimming pool! I can't explain what that experience was like....even as I type, the tears are streamming down my face.....I was able to teach Annie and Koty how to swim and even more exciting was the ability to hold them physically close to me. We were all so excited and crying together! I've also been able to walk across the yard (uneven ground) and squat to plant flowers. Tonight I finished up my "vacation" with attending my oldest daughter Sydney's volleyball game. (I have never been able to accomplish sitting in bleachers...until now!) So, like I said, tomorrow starts a new season. The next 4 months will be the hardest ones I have faced yet. I'll be honest...I am not looking forward to them at all. I find myself waffling back and forth from fear to hope to determination and then back to fear. I have been told what to expect and to prepare for the worst, so I am trying to do that. One thing that I am so thankful for is that God has, in His goodness, allowed me to find Him through this process and to know Him deeper and more intimately than I would have ever thought possible. So I am assured that no matter what tomorrow may bring with it, He is with me and will continue to remain there always.
Annie and Koty have been on their treatments throughout the summer now. Annie has had some rough times. Insomnia has been one of the owrst symptoms she has had to suffer through. Of course when that happens, everything else seems to shut down since the body is not getting the rest it needs to heal. Koty, on the other hand, hasn't had too many "down" days and seems to be doing pretty good so far. They both have started school and seem to be settling in fine. We were so thankful to get some wonderful teachers for both of them. So that has taken a load off of me, especially knowing that there will be someone looking out for them at school. Sometimes when I think of what I might not be able to do for my kids or simply for myself in the next four months, I get a little nervous, and yes, weepy too. I try not to think about the "what if's" and just focus on the time and day at hand. I Peter 5:7 "Cast all your anxiety on Him, because He cares for you."
As I continue to walk this road, I know that God continues to build my character through the process of waiting. " Perfect trust is a character building process." (swindol)

Friday, July 23, 2010

Summer update

Well, it has been too long since I have updated this post, but life has been rather busy shuffling med charts , etc. We finally got Annie and Koty's results back and they both tested positive for Lyme disease. They have been on treatment for about 3 weeks now. Their disease is not as advanced as mine, so at this point their treatment will be a whole lot simpler and straight forward. Not sure of the time factor. Like all Lyme disease patients, it depends on the individual, how they respond, etc.

So far Annie has had a couple of rough moments, but thankfully they haven't stayed constant. Koty's medicine doses are very low, so it will take him a bit longer to respond. The doc's plan is to keep all of us on a low enough dose that we can still live without being completely wiped out by the disease or the treatments.

People often ask me what the kids symptoms are in comparison to mine. They both have muscle pain and twisting, however, they come and go and do not stay constant like mine. They both have some major stomach issues, Annie more so than Koty. Neck pain (in the back of the neck and head), headaches, hot flashes, mood swings, joint pain. Koty gets severe joint pain in his knees and ankles and has times when he is unable to walk at all. Annie has ankle pain and weakness. Sometimes she has to be careful when playing because it will start twisting up on her or give out completely and she will "wipe out". Insomnia is also a factor for them, Annie more than Koty.

We are planning on attending school this year, but honestly, that is one area I am still giving over to God. Not sure if I feel completely comfortable with it yet or not. Lyme disease can attack any and all of the body systems, and there are other symptoms that they have that could be a little embarassing and/or frustrating. Sometimes Annie has times when she is unable to verbalize her thoughts correctly or quickly enough and both Annie and Koty have had times when their bodies will not recognize the need to go to the restroom before it is too late. Also, there are moments for Annie when she has "panic" type attacks. I think it is mostly when her "inside" symptoms start to flare up, such as "the shakes" (you feel like your whole body is shaking, except that its not showing it on the outside) or fast heartbeat or seeing flashes in your peripheral vision. all of those things can be a little creepy to an adult, much less a 7 year old. Anyway, we would appreciate your prayers as we get ready for this next school year.

Sunday, April 4, 2010

Getting ready to start a new med. tomorrow. So far things have been pretty good. Again, so thankful for my doctor and grateful (beyond words) that she is going slowly with my treatment. Two weeks ago I was "down for the count" for most of the week. I had taken more than I was supposed to on one of my meds. and it caused the Lyme to kick into gear at full speed. Not unusual....that's why we are going very slow. So this week I didn't "up" anything so that I could level out. (Sorry...having a bit of a problem with finding the right should see me with the kids....we are going to be the champs at Charades!:)

Anyway,... this last week allowed my body to adjust, so I was able to be with the kids while they have been out of school for Spring Break. Most of the problems I have been having the last couple of weeks (apart from the crazy week) have been with my hearing and my vision. Sometimes it's nice to not hear things..:)...but I'm a little nervous to lose it completely. I usually listen to music or podcasts when I can't sleep and now that I am having vision problems, it's hard to read too. I still have burning sensations throughout my body and I have had a hard time with insomnia. My overall pain has lessened for the most part. Monday through Wed. are my roughest days. Usually by the weekend I have leveled out, which is great because the kids are home from school and I get to participate in epic (our church), family or other activities.

Migrains, tremors, twitches, memory and word searching have been difficult as well. I have found myself withdrawing from conversations again....because it is so exhausting to concentrate on the conversation and keep up sometimes and it's hard at times to respond...I know what I am thinking...just can't get it out.

Annie and Koty have both been having problems on and off for awhile, but lately they have both increased. Koty has had problems walking all week, lots of pain in his knees and stomach. We are waiting for results for Annie concerning Lyme and now we will be testing Koty. We were all on the hike together, and from what I understand, sometimes it takes awhile for it to kick in for kids. I would appreciate your prayers for them.

Thankful for so many things and so many people. Today I had the chance to be at the beach for an extended time...first time in a long time my body didn't react to the sun and heat. I almost cried just feeling the breeze. :0 Also, I have been able to roll over in bed without crying! Can't tell you how exciting that is! I know this one doesn't sound too exciting...but is...was able to put a sheet on Koty's bed... all by myself. (Only took about 20 minutes!ha)
The simplest things in life are truly treasures. The sad thing is that sometimes it takes losing those things before we can really appreciate them. I read this quote again today...very humbling...
"I believe in the sun even when it is not shining;
in love even when I am alone;
and in God even when He is silent."
(inscription found scratched into a wall in Germany by someone hiding from Nazi concentration camp.)

Monday, March 15, 2010

Almost a month into my new treatment. I have to say that I am so thankful for my doctor! We have been slowly progressing into the treatment a med at a time. Every week I add more and today is the biggest leap by doubling some doses and adding three new meds. I'm usually "down" the first couple of days of the week..nights are rough, but then it levels out by the weekend. So usually by Sunday my body has worked through the crazy symptoms just in time to start up again on Monday. But the doc is so great. She really wants me to be able to function day to day as much as possible instead of living at the hospital (because of med or symptom overload!) We are in contact with her continually and have more access to her (in North Carolina) than we ever had with my local dr.'s So she has been a tremendous blessing and answer to prayer!
Trent and I had a phone conference with her this morning and everything seems to be going ok. I go in for bloodwork tomorrow..if I can stand the meds tonight, otherwise I may be in bed for a couple of days ..that's always fun!
Something you can be praying for with us about....Annie has had several new "symptoms" show up in the last couple of weeks. (Several are exactly like mine, just not as severe...muscle twisting, migrains, burning sensations in her arms and hands, etc.) After discussing her with the doc. we are going ahead with some more specific tests for chronic Lyme (for her). Hoping to have those results before too long. Praying that it is not that, but seems like it is more than just a digestive issue.