Ringing in the New Year quietly, but with GREAT cheer :)

In my last entry I wrote about all of the things I’d been accomplishing lately – working on Christmas cards, cooking, cleaning the kitchen some, driving to the grocery store with mom. God’s been doing great things for me. I re-read that entry and it helped me deal with where I am today. Today I’m on day 3 of no energy and feeling stuck in bed again. I’d been feeling very down about it. God got me to read that last entry and I realize the things I’ve been doing that are causing me to feel so tired. A big one is that I want to jump out of this bed and just start back to living full force, but I can’t. Being sick, weak, and living in bed for over 2 years means I need true physical rehabilitation to get back to living. My muscles need conditioning – just basic walking and stretching exercises. I need to be patient with my body and with my brain. On Wednesday I had what I term a “mini episode” type of seizure. No grand mal seizure activity but started out crying for no reason – which often happens right before a seizure – and then it was like I was crying so hard – not sobbing – but crying from the depths of my soul. It was one of the few times in my life where the crying was so intense it was as if I were listening to someone else cry – like it couldn’t be me making that noise. In a way I think I was crying out to God. I had to put an Ativan in my mouth and M put my oxygen on me just in case. It went away within 15 minutes, but afterwards I was exhausted and slept for 2 hours, ate dinner, and then slept some more. My cries to God may be as simple as a three year old who needs a nap but hasn’t taken one. It was also God’s way of showing me that I must slow things down, as much as I hate to do that. I’ve simply been so excited about all of my improvements that I have been pushing myself to get up and do even when I feel so tired and cranky. I keep thinking, “Just get up and do a few things and you’ll be in a better mood because you’ll feel good about accomplishing something.” That’s not true all the time – in my case, well, it just was too much pushing and not enough resting.

We’re also going to run tests to check my hormone levels. Two years before I was diagnosed with Lyme, my estrogen level was almost non-existent, as were my progesterone and testosterone. The doctors had even put me on synthetic hormones to get me on track with my cycle. They never worked. Now it’s like I’m a teenager going through puberty almost – my oil glands are more active, I’ve had this craving for anything with vinegar on it (from salad to pickles), my mood swings aren’t as “violent” but they cycle much more rapidly, and I will cry for no reason. I think all of these things indicate a possible hormone imbalance. I think as I start to get well my hormones are finally trying to work and they may be overcompensating after all this time. Women who suffer from seizures are close to 3 times as likely to have a seizure during their monthly cycle (best way I could say that where men wouldn’t go – “ewww” – hahaha). BUT, I so many of those symptoms and feelings also happen when my Babesia flares. I’m supposed to take my anti-parasitic drugs 6 days a week for 3 weeks and then go off for a week. This happens to be my week off and I have gone downhill more as each day passes without taking them.

All of this points us in the direction we feel God has been leading us – to start treatment on the Babesia again. Not just the anti-parasitic meds, but the Mepron (a prescription drug normally used to treat malaria) and start Azithromycin – both standard forms of treatment for Babesia. I had been on both while in K.C. but I was on so many other drugs that my body was too overwhelmed to handle those as well. And as much as I’ve been hoping to have my PICC line pulled in January, we’re going to talk to the doctor about oral Azithromycin versus the I.V. form because there’s some data showing the I.V. form to be much more effective. However, I am SOOO READY to get my PICC line out of my arm. The thought of taking a normal shower without having to wrap my arm and worry about it getting wet – well, that seems like a dream come true!

And, although I was back at home this Christmas instead of being in Kansas City at the IV clinic last Christmas, I still didn’t get to spend it with my family. If you live in Birmingham, Alabama then you probably feel like I do – everyone in this town is sick with something! The flu, strep throat, bronchitis, and other bacterial and viral infections have been making the rounds. One of my nieces had strep throat one week and then the next week was down with the flu. The week after that, my mom had a viral infection and the doctor put her on Tamiflu even though her Influenza blood test was negative. I say all of this to explain that as much as I wanted to go to my sister’s house Christmas morning and visit with mom, dad, my sister & brother-in-law, and my nieces and nephews – well, my immune system couldn’t chance it.

And here at my house it didn’t feel very “Christmasy” either. Neither M, recovering well from his shoulder surgery, nor I were up to the task of decorating the house and I knew I wouldn’t be up to cleaning up the decorations after the holidays were over. With the great expense of my medical treatment, M and I were once again not exchanging gifts with each other, or with any other family members, so I wasn’t even online shopping, much less going out to shop. The only thing I did that differentiated this time as the Christmas season was sending out Christmas cards. It’s a big task because I like to write inside each card and I hand address every envelope. I was proud that I got them done and that my shaky hands were able to complete the task! However, when Christmas morning arrived, I felt depressed. No tree, no presents, no family visits…nothing. I wondered why I felt more depressed this year here at home than I had last year while in K.C. and I realized it was because last year I did celebrate Christmas, at least a little, with my treatment friends. Here it was just me, M, and our furry, 4 legged baby, little m. I was disappointed. I was pouty. I was feeling sorry for myself – note to self, this could have been the hormone issue or Babesia talking, haha. Then I went to the kitchen and saw it was snowing. We haven’t had a white Christmas in Birmingham in, well, in the last 35 years that I’ve been alive. The snow was nice but I almost overlooked it because there was no traditional Christmas breakfast, so I was still pouty in the kitchen. It took me until that afternoon to realize that God had “stripped down” my Christmas to show me some very important things. First, and most importantly, was to realize how much the commercialism of Christmas has become what I equate the holiday with. We may use the saying, “Jesus is the reason for the season”, but honestly, without decorations, gifts, traveling to be with family, and the other rituals, you may have felt just like me, disappointed. So, I had to focus more on the true GIFT of Christmas – God’s gift to the world – JESUS. God’s son sent to earth to pay the ultimate price for our sins. I thought about just how BIG that gift is. It’s not just a gift at Christmas – it’s a gift we benefit from every day on this earth. And I felt ashamed that I hadn’t seen that sooner. Then I realized all the wonderful gifts God has given me, especially lately, as I am beginning to see the possibility of a much more normal life for myself. I re-read my last entry and thought, “K, how in the world could you think you hadn’t received gifts this Christmas? God’s been giving you gifts every day of the month!” So, I needed to be reminded and halfway through Christmas Day I realized how blessed I was to have my sweet husband, my baby dog, my loving family (even if they weren’t with me), and getting to see snow falling was my Christmas present. Weeks ago I had told M that the only thing I would miss about being in K.C. for Christmas was the snow. Last year was the first white Christmas I had ever experienced. Then here I was at home and God was covering the ground with a fine white mist of snow. It made me realize how stupid I had been. Maybe I needed this “stripped down” version of Christmas to really change my perspective on Christmas as a whole. I wouldn’t have realized just how many other things I think of, Christmas trees, Christmas music, decorations, parties with friends and family, when I should put more focus on what Christmas is really about. It’s Jesus’ birthday party! That’s what we should be celebrating! Thank you God for reminding me what Christmas is truly about – which is celebrating Jesus and thanking you for the most amazing gift the world will ever know – a Savior who would die for all of mankind’s sins. I’m not saying that I won’t buy Christmas gifts next year or that I won’t think being with family is important. I would like to think that God likes the so-called “Christmas spirit” of being kinder to one another, thinking of what others would like to receive, having family and friends close to you. It’s just that this year, well, I got to see what it would be like without all the muss and fuss!

Now I’m going to spend the last day of 2010 in the bed with great hopes that 2011 finds me out of this bed much more often! I feel that God is leading me out of this tunnel and I just have to keep my focus on Him to find my way out of here. The light at the end of the tunnel IS God and His plans for my future. I can’t wait to see what happens next!

As I lay in bed, wanting so badly to get up and out of here, well, that “mini episode” reminded me of something. Only GOD knows when it’s time for me to be up and out of here. So, after thinking on that this verse seemed very fitting:

“Be still, and know that I am God!” Psalm 46:10

I wish you all a wonderfully happy and healthy New Year!!!
Much love to you all!
K

God's Perfect Timing

I marvel at how God works so often. In my own life’s journey I find myself wondering less about the miraculous things He does, focusing more on what I want Him to do. I think everyone is guilty of that. However, there are times when God does something in your life that reminds you that His plan is ALWAYS the best plan. I’ve had that happen a lot lately.

In my last entry, I shared that my sweet husband was about to have shoulder surgery and how worried I had been about the both of us being “patients”. I also explained that once I started back on the anti-parasitic medication that I started seeing so much improvement in my symptoms – even getting out in public and I rejoiced about that. It was definitely God’s perfect timing because when my husband needed me – well, I’m happy to report that I was able to handle taking care of him. Now, we had A LOT of help from our wonderful families. M’s mom took him to have his surgery and kept me updated by phone calls. My mom stayed with me at the house because sometimes being nervous can trigger shakes or seizures – although it’s been almost 6 months since my last BIG grand mal seizure that lasted a long time. Funny thing is while I had anticipated feeling nervous, I was actually quite calm. God’s sense of peace I think. M’s mom also took him to his physical therapy appointments and generally offered to do anything else we needed done. Both of our moms offered to cook for us and I let my mom bring some of her spaghetti.

However, what was simply amazing is that I was able to do some cooking. The day before M’s surgery I had mom come over while I cooked a real meal. I wanted her there in case I started feeling weak or faint then she could take over. But, I made a chicken Caesar salad with a white wine vinaigrette dressing for M. It’s one of our favorite recipes and it doesn’t take long at all. Just long enough to brown chicken strips in some olive oil on the stove. I cannot tell you how wonderful it felt to cook for my husband again. For those of you who know M, well, you know that he LOVES food. It’s always nice to cook for someone who is so appreciative! He was very proud of me for trying and thrilled that I succeeded. My mom and I were beaming about it as well! I went on that weekend to make chili and I did that all by myself. I even cleaned the kitchen!

So, back to God’s perfect timing. I was able to cook a meal for the first time in almost 2 years the very day before my husband’s surgery. That was God letting me know He was giving me more strength than I dreamed of to get through M’s surgery – to be able to help take care of my husband who has been taking care of me for years! I can’t begin to tell you how wonderful that felt. Since M was “out of commission” so to speak, I desperately wanted to do more around the house. Mom came over that Monday, December 6th, to run to the grocery store for us. I had called her that morning because I felt God was telling me to go with her. Believe me when I say I did NOT want to go to the grocery store. With the bright lights, noise, motion, and aisles of food decisions to be made, well, it’s like seizure heaven. But, I felt God pushing me. Mom was running late and my fever (which I still have daily) was going up. I sat in the floor thinking, “Well God, it’s not my fault she’s late. I mean, I can’t go to the grocery store when my fever’s going up!” But God kept pushing me. So, I got up and got dressed. I put on makeup – I didn’t just throw on clothes either, I picked out an outfit! I was still nervous. I took my Valium and said, “Okay God, I’ve got my earplugs and my seizure meds. If you want me to go, then I will go!” Mom showed up and was surprised to see me looking like a normal person – ha.

Whenever mom takes me anywhere she drives my car. I mean, for the past 8 months it’s just been sitting in the garage so we try and drive it when we can. However, my mom doesn’t park her car in a garage and she worries about how to pull out of my garage with her car in my driveway. I have always been able to do it with no problem, so mom asked me to talk her through it. When I felt that she wasn’t going to be able do it, I said, to my own surprise, “Can I do it?” My mom said, “Well, okay.” and she smiled. I haven’t driven a car in a year and 8 months. I am a person who has always LOVED to drive. I have a great sense of direction and have always enjoyed road trips – even those I made alone. So, I backed my car out and, like they say, it was just like riding a bike. It all came back to me and I got a big smile on my face. Again, out of nowhere, I heard myself ask, “Do you think I can drive to the grocery store?” and mom answered, “Do you want to try it?” and I decided I should try it. It’s a 5 minute drive on back roads with lots of side streets where I could pull over if I needed to and have mom take the wheel. The fastest speed limit is 30 mph and I felt like God had been pushing me for this very reason. To once again try something I was scared to do. But I did it. I DROVE!!!! It was amazing, liberating, exciting – it was BIG PROGRESS!!! I drove us to the grocery store and then I put my earplugs in. We went in the store and I got a buggy. The earplugs only made the noises sound closer to what normal people would hear. It was still very loud but I was handling it just fine. Mom and I went up and down every aisle. I picked out food to cook. I picked up some cookies to surprise M with. I was grocery shopping and it was AWESOME! The hardest part was checking out with the scanner going, “BEEP, BEEP, BEEP” as every item went across. The bag boy was talking loudly and I had to just focus on putting items on the belt. When there are too many things stimulating my brain, it’s best for me to put all of my attention to one task. I was able to get through it, pay by myself, and wheel my groceries to the car. I know mom and I probably looked like lunatics because our eyes were wide with excitement and we had huge grins on our faces! Then, I prayed for just a second before telling mom I could drive us home. I did that and then helped bring in groceries and I was able to put them away. In just one afternoon I got to experience what it feels like to be a housewife again. I got to do a chore that poor M has had to do for the past 2 years. GOD SHOWED ME AMAZING PROGRESS! Now, it will be a good while before I come close to driving by myself. Doctors say 6 months after my last seizure, but I want to make sure I am in NO WAY endangering others just so I can feel independent and drive. But, oh how amazing it felt to be the one driving – see there’s my “control issues” coming back…haha!

That week I kept doing things – writing Christmas cards, cooking, cleaning the kitchen, etc. I got to feel like a person again instead of a problem. Friday I cried as I was rinsing out dishes – I was crying tears of appreciation and love to God. I was telling Him thank you for every little thing I was able to accomplish. Not to mention that 3 of our neighbors hired a tree removal service and Friday was filled with the sounds of chainsaws, leaf blowers and big trucks having logs dropped into them from a crane. Just 4 months ago that would have sent me into a seizure. It would have honestly been a nightmare for me. I would have been screaming, crying, shoving earplugs in, basically I would have been freaking out and likely seizing off and on all day. But not Friday – and I thanked God for the ability to handle that noise. I did have to take a Valium, but those work differently in my brain. They help my brain filter through the excess noise and stimulation. Basically they make my brain work more “normally” and they don’t make me tired nor do they make me feel spacey or loopy. Even though they are a “depressant” drug, they actually make me feel “up” because they help my brain to drown out all the excess noise.

God’s perfect timing again – He has been doing amazing things for me. I am so very thankful for all of it. But then on Saturday I didn’t feel well. I was basically exhausted. As much as I want to get up and start living again, I can’t ignore the fact that my body has been bedridden for a long time. It will take a while before I can stay out of bed all day. I had pushed a little too hard and I had to stay in bed. I was upset about it. I felt like crap after feeling so good. It was depressing. Later on I realized it was my 4th week. Let me explain. Lyme and it’s co-infections seem to cycle every 4 weeks meaning that your symptoms pop up more during that 4th week. Sunday I was back to having mood swings, my feet hurt when I walked, my back hurt, and I basically felt crazy. But once I put it all together and understood it was my 4th week, I was better able to handle the symptoms. If all I ever get is 3 weeks where I can do chores and stay out of bed at least 8 hours of the day, then have one week where I’m tired, well, I’ll take it! I’m getting glimpses of better times to come. God’s answering my prayers. I wrote last time about how I had started giving up my life dreams and telling God I would settle for less, but in the end I figured out that’s not how God works. God does BIG things – He can answer BIG prayers – His plan for me is good and I trust in it. Please thank God for all He is doing for me. He’s answering my prayers and the prayers all of you say for me. I feel honored and humbled by all that He’s done. I now cry more tears of joy than tears of pain. I get teary eyed now just thinking on what He’s done for me in the past few months. I thank Him every day. And the next time you drive to the grocery store, try to do it like I did – smiling like a lunatic so happy to do a chore! We all have to recognize the blessings God gives us every day. I may not go to the grocery store every day, but He blessed me with my husband, my family, my friends, even my baby dog! I may not have ALL that I dream of, but He’s not done with me yet, is He? He’s not done with any of us yet. He works on us every day of our life if we allow Him to do so. I’m sitting in silence more lately. I’ve been sitting with beautiful Christmas music on as well. My mood improves greatly when I step away from the television and put myself in a situation where God can speak to my soul and my soul can speak to God.

In our Christmas cards I have put the following verse because it is so fitting for our lives this past year:

“Give thanks in all circumstances, for this is God’s will for you in Christ Jesus.” 1 Thessalonians 5:18

I’m focusing more on trying to give enormous thanks and to try not overlook even the smallest things God does for me. I’m not perfect so many days I completely miss seeing what God wants me to see, but that’s why He works on us every day of our lives.

I hope all of you are enjoying this Christmas season. I got to work on Christmas cards while watching snow flurries outside my window. That was commonplace when I was in Kansas City, but in Alabama, well, it’s pretty much a gift from God and I enjoyed it thoroughly!

Much love to you all-
K

To be perfectly honest...

I need to come clean. Often times, when I write these entries, I write because God is giving me a message or teaching me a lesson that I feel He wants me to share. That’s not the part I need to come clean about though. When I follow God’s direction I find myself feeling more upbeat and positive about the things I’m going through. I realized that if someone reads this they might think I have the best attitude about my situation, or a sunny outlook on the frustration and disappointment I so often feel. Now I believe that God has having me write this entry and not spare any of the details. So, I’m going to take you where I find myself so often, in a pity party feeling confused, hurt, angry, and hurt. Don’t worry though, God won’t let me finish without writing about what He is doing to change all of those feelings that weigh down my heart.

When I started to feel better taking the IV antibiotic Gentamicin, I rejoiced! I wrote about all my improvements and I know many of you rejoiced with me. Then my kidneys stopped filtering the medication well. I had only been on it for close to 3 months but I was seeing so much improvement that having to stop it broke my heart. I’m just now realizing that it broke so much more than that. The longer I was off the medication the more I seemed to slide backwards with old symptoms flaring up again. This broke my belief that I was nearing the end of this painfully difficult time in my life. Instead of the hope I had been feeling, I started to believe that I would never feel any better or make any more progress. I resigned myself to accepting what seemed to be fact – that I would never be able to lead a “normal” life. I stopped asking for big improvements and instead asked God to just heal me to the point where I could do household chores, cook for my husband, etc. Basically, I told Him that I didn’t have to be able to leave the house and deal with the noise of the outside world. I told Him I was letting go of the dream of having the life I really wanted. I even began to give up the idea that I would be blessed with a child and get to experience motherhood. I started trying to focus on the positives of not being a parent. You know - how everyone says they would travel more if they didn’t have children, or take a job they loved instead of one that paid the bills because, well, we all know it’s expensive to have kids! I was trying to give up all my dreams thinking that they just weren’t in God’s plan for me and that I needed to accept and appreciate what I was given instead of focusing on what I couldn’t have. I stopped believing that God had great plans in store for my life. I began to think He just had some sort of “good enough” plans. In short, I had gotten mad, then felt hurt and broken hearted, and finally I started trying to be in an “acceptance” phase.

There’s a part of that logic that is rational. If I focused solely on what I wanted out of life, or where I thought my life would be by the time I was 35, then I would be horribly depressed right now. It was depressing enough when I tried to ask God to take away my desires and show me how to be thankful for the life I had. In fact, when I asked God to do that I didn’t feel any weight lift off of me like I normally do when I try and hand something over to God. That’s when I got really frustrated and angry with God. I questioned why He would give me such desires in my heart if He was not going to bless me with them. I started letting God know how upset I was and then some days I just didn’t talk to Him at all. All of this just made me feel horrible.

You see, I thought it was God who was directing me to what IV antibiotics I should try. First I tried Doxycycline but the side effects were horrible. Did you know that heavy doses of antibiotics can cause mood swings? I didn’t know that until I started to go through all of this. So, we stopped the Doxy. Next was the one I wrote about last – Rifampin. It’s a very strong drug, as I have written before, and mainly used to treat tuberculosis and some types of meningitis. I started it and all seemed well until day 3 when my mood changed dramatically. I felt so despondent. I would lie in my bed and just cry uncontrollably. I had no idea why I was feeling so depressed. I couldn’t find the good in anything. I decided to call a friend from treatment in Kansas City who had been on Rifampin before. I wanted to know if the depression was a side effect, or if it was truly what I was feeling, or if it was part of a Herxheimer reaction – where symptoms will come up because of an overload of toxins in your body. When I told her how I had been sobbing crying she immediately said, “That’s the Rifampin.” So, on day 5 we stopped the Rifampin and within a 24 hour period there was a change in my attitude. After 48 hours I was beginning to feel more like myself. After 4 days off the drug I knew for certain that it was the culprit behind the emotional change and I knew that I would not be able to take that drug.

I realized there weren’t many other IV antibiotics that would be helpful for me. I’ve been on 6 so far and 3 of those I wasn’t able to take due to side effects or allergies. I already know I have drug allergies that keep me from trying many of the other antibiotics, so I started feeling helpless again. I felt awful – both physically and mentally. Spiritually speaking I was at a low point too. I felt like I had been following where God was leading me regarding the medication changes and when they didn’t work I felt let down. To top it all off, my sweet husband has to have shoulder surgery on Thursday. He injured it 4-5 years ago and kept being told to do physical therapy for years – which he did but got no relief from the pain. We finally just asked our doctor, the same one who treats my Lyme, to order an MRI for M’s shoulder. It showed a torn muscle around his rotator cuff along with a cyst and bones spurs that need to be removed. So, I’ve been having to see my constantly loving caretaker in constant, miserable pain and I felt more angry at God. We all know the saying that God will never give you more than you can handle. Well, I have heard people add “I wish He didn’t trust me so much!” after that comment as a joke. I truly felt that way though. I was mad that God would add yet another hurdle for us to jump over. Sometimes I forget that we don’t have to jump those hurdles on our own power – that makes them almost impossible to get over. When we allow God to work in our lives He will carry us over those hurdles. It doesn’t make the hurdles go away nor does it make you feel that there are no hurdles in your life, but it does get you over them – even the highest one. I guess by now you can see that God has been working on me again.

When the Gentamicin started to affect my kidney function I started to take myself off as many of my other medications as I could to ease the burden of my kidneys having to filter so much. This weekend God put something in front of me. It was a bag that held my anti-parasitic medication. I had taken it to my doctor’s office to show him, since I had gotten it from my Kansas City doctor I wanted him to see what it was. We came home that day knowing that I couldn’t take the Gentamicin and I sat the bag down in another room. So, this weekend I was in there and saw the bag and thought, “Hmmm. I wonder if I should get back on this since I’m off the Gentamicin now?” I decided to try it. Within 2 days I was feeling stronger and better. The anti-parasitic medication hits the Babesia. I have Lyme, Bartonella and Babesia. The first two have to be treated with antibiotics but Babesia is actually treated like a parasite with drugs and supplements that are normally used to treat malaria. But, I don’t just credit those anti-parasitic medications for how much better I feel. I credit God because I cried out to Him. I was already down because of how I felt physically, but on the Rifampin I cried out to Him like never before. I cried for Him to carry me, to heal me, to get me through all of this. God is good and He sure did answer.

His answer started to form in my brain. I knew God was pushing me to try and get out in the world again. I felt a tug to get out because I felt God was going to show me what He was doing for me. So, yesterday I decided to have mom take me to the photo shop to print out my Christmas pictures. I had my earplugs, headphones, and seizure meds in a small bag with me in case I needed them, but I was going to try and brave it without them. We went into the photo shop and I was able to download my picture on their computer and fill out the order form. We were told they would be ready in about 3 hours. I didn’t want to go home though, I wanted to see what God was doing for me physically. I had a pair of jeans that I needed to return, so we went to the store and I exchanged them. Then I decided to really push it and go out for lunch. Now this is huge because I haven’t been in a restaurant since March of 2009. Most people don’t notice just how noisy restaurants are – people talking, forks and knives scraping plates, chairs being pushed away from tables, music playing, etc. But we went. It was loud so I put my earplugs in. That made it sound like it would to someone without supersonic hearing – haha. It was a lot of visual “hustle and bustle” too. I have a hard time with a lot of motion around me but I was handling this very well. Mom and I ate and I was absolutely giddy about being there. We left and I took a Valium to calm my brain from all the commotion. Then mom went in the photo shop to pick up my pictures because I knew I had reached my limit for sound sensitivity. I came home and was so happy but so exhausted! Mom helped me get back into my pajamas and into the bed. I hooked up a bag of IV fluids and promptly fell asleep. I was so tired that my husband had to physically shake me awake! I’m a little tired today, but not as much as I have been in the past after short excursions.

You have heard people say, “God is good all the time. All the time God is good.” Honestly, it is true. But, you have to seek God and when you do so, you also have to be silent so you can hear or feel what He is trying to teach you. I had been trying to drown Him out by watching mindless television shows all day or playing on the computer – basically anything that would keep me from communing with God. But, finally I turned everything off and tuned in more to Him. Through my experience yesterday I learned that He is asking that I trust Him more, and give Him credit for the medicine instead of just crediting the medicine itself. I learned that His plan for my life requires that I break myself free from the depression and heartache that the devil loves to use in our lives. I learned I have to tell myself repeatedly that God IS good ALL the time – ALL the time God IS good! I learned that I will always be working on trusting Him and living by faith. We all have to work on our faith constantly because we are human and will fail so often. We must step out in faith more often so our trust and belief can grow even stronger. We do this and through it we begin to have a more mature relationship with God. I’m working on how to literally “live by faith”. I have no idea what God has in store for me, but He has taught me over the past month or so to stop selling Him short! I was putting a limit on what God would do in my life. I wasn’t praying for BIG things because I didn’t believe I would get them. I may not get everything I had in mind for my life, BUT God may have all of those things, and maybe more, in store for me. I have to learn to trust in Him more and more because right when I think my prayers have gone unanswered, He shows me how much more He can do for me – much more than I even prayed for.

I got OUT and I was able to do something I haven’t done in almost 2 years! I ate at a restaurant and I can’t tell you how great that feels. God is working, even when I’m in doubt, or mad, or frustrated – He knows how I feel and He is working. I just have to step out in faith. I was hesitant about getting out – but He pushed me. I was concerned about how loud the restaurant would be – but again I felt Him pushing and I went! I serve a wonderfully loving and amazingly strong God and I am thankful for ALL that He does for me.

Personal sidenote for those of you who know me well and get my Christmas cards every year: The picture on the card of me, M and my little baby dog, well, it came across as a big lie to me. Why? Well, because it took me three days to get ready for it. Taking a shower, painting my nails, fixing my hair, putting on full makeup – even lipstick and having nice clothes on for the first time in 6 weeks or so – well, it sure isn’t our regular day life!! We sat on our deck and used a tripod and self timer to take the pictures and took about 15 before I was ready to collapse – and we all know I don’t go outside often! In the picture I am doing what I instinctually do when a camera is around – SMILING BIG! When I looked at the picture on my computer I laughed so because I look so healthy and happy with my life. The reason that is so comical to me is because right after it was taken I came inside and just laid on the living room floor. M had to take my cardigan off me and my shoes. I looked at him from the floor and said, “This should be my Christmas photo – it’s a ‘true life’ shot!” Now I think perhaps that picture isn’t a “lie” – it may be a picture of what God has in store for me– good health and much happiness!

“I cry aloud to the Lord, and he answers from his holy hill.”
Psalm 3:4 (NRSV)

“He is not far from each one of us. For in him we live and move and have our being.” Acts 17:27-28 (NRSV)

“No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him.” 1 Corinthians 2:9 (NIV)

Much love-
K

Just asking for prayers...

I am healing well from the surgery. However, all of the symptoms haven't gone away. We had my post-op appointment with the surgeon yesterday and she said some people experience the nausea, lack of appetite, etc. for more than just one week so we're praying it all passes soon.

We need many prayers right now. I started the Doxycycline and after 3 treatments I had to stop it. Something I never knew before going through treatment is that IV antibiotics can have really weird side effects - physical and mental - or maybe these type of side effects are just for people on long term therapy, or perhaps they just do these things to Lyme patients, I have no idea. What I do know is that the Doxy started making me horribly depressed. I would have accounted it to just having had surgery, or pain medication, etc. but the mental feeling I got was exactly how I felt when I was on Doxy in Kansas City. Back then I thought it was the stress of treatment or from being away from home that kept me depressed. Now I can say with certainty that a majority of that depression came from the Doxy. I was on my third treatment when I started crying for no reason, had bad mood swings and felt so angry all of the sudden. I cried and said, "I'm stopping this bag!" - basically turning the line off so that the Doxy wasn't going into my veins anymore. It only took about 15 minutes for me to start to feel more like myself mentally. I may have been able to handle those emotions more when I was in treatment with other patients who became close friends, but now that I spend most of my time alone I don't think it would be healthy to try and put myself in that mental state every day.

I saw some improvement on Doxy back then, but I was on it for 7 months and I think I got all the benefits I could from that drug. Honestly, we were only trying the IV Doxy because I have been scared to try IV Rifampin - it's a strong antibiotic that is usually only used for treating tuberculosis. It can be hard on the liver and it is the color of orange Gatorade when it goes into your vein which is just kind of creepy. We were going to try IV Doxy and oral Rifampin to see how I handled it instead. We know Gentamicin is responsible for 90% of my improvement but my kidneys can't tolerate it. It is one of the 4 IV drugs recommended for Bartonella, I'm allergic to one of the other drugs, one is only available in injectable form and I need something stronger than that, then there's Rifampin. The improvement I saw from the Gentamicin let me know what I already suspected - Bartonella is my main problem. So, now me and M are back to the drawing board once again. We are praying about how to proceed. We are praying to lift my fears about our next move. We are just asking for guidance as we make our next big decision. We discussed IV Rifampin with the doctor last time and he is okay with prescribing it to me, but he didn't want me to feel scared about starting it.

The main problem is that I am sliding back down to where I was before. It's hard to explain but it takes long courses of antibiotic therapy - sometimes 3 years - for some Lyme patients to "get their lives back". When we go off of antibiotics our symptoms will return until we reach a point in our treatment where we've killed enough of the bacteria and bugs to feel somewhat normal without the antibiotics. I was hoping I would be further along by now, but I clearly still need some form of antibiotic therapy. Good news is that I haven't had a seizure yet - which is a miracle since I've been off antibiotics for close to 3 weeks now. The bad news is that my sound and light sensitivity are back, I'm unable to handle anything very well - I get upset easily, can't think clearly, etc. I was on 40 mgs of Valium a day while in Kansas City to help with my seizures. On the Gentimicin I got to where I didn't need ANY Valium which was GREAT! However, I've had to start taking it again. Yesterday I took 30 mgs which is the most I've taken in 4 months.

Sliding backwards is hard on me and watching it happen is really hard on M since he so wants to snap his fingers and make everything better for me. It's easy to start to feel sorry for myself or for us both to feel as if the rug is being pulled out from under us. It's easy to question and cry and to be mad. But none of those feelings is going to help us - we know from experience that they will only make things worse. So, we're asking you all to pray that God will lead us in the right direction in terms of my treatment. We are open to stopping IVs and trying to just do oral antibiotics, but we don't want to pull the PICC line until we know whether my body can absorb the oral medications well. We just want to go in the direction that God leads us with no fear, feeling strong and absolute about our next steps. We need to make a decision soon though before I get much worse. We will be talking to the doctor on Monday and hope to have a game plan by then.

I appreciate all of your thoughts and prayers and will update as soon as I can about where we go from here. A couple of quotes from the book, "100 Days in the Secret Place" seem quite fitting for my current sitution. They help describes why it's so hard to give up trying to control your own life and how we must stop making our own plans instead of following where God wants us to go:

"Pray for strength and faith enough to trust yourself completely to God. Follow Him simply wherever He may lead you and you will not have to think up big plans to bring about your perfection. Your new life will begin to grow naturally."

"God is your true friend and will always give you the counsel and comfort you need. Do not resist Him! Learn to listen to Him in silence so that you won't miss a word of what He says to you. You know a lot about outward silence, but little about inner silence. You must practice quieting your restless imagination. Stop listening to your unrenewed mind and the kind of logic it has! Get used to coming to God and asking Him for help when He asks you for something you are afraid to give."
-Archbishop Francois de Fenelon written in the late 1600s

Much love to you all-
K

Post surgery update

Surgery went well. However the ultrasound didn't show the adhesions from my gallbladder to my kidney. It also hadn't shown how swollen it was. But, good news is that it is out! The surgeon said I may still experience some symptoms for the first week or so after surgery. For instance, not being able to eat normal portion sizes of food without pain. I do know that the horrendous heartburn is already gone and my back feels better. My incisions did bleed for a bit after surgery and my white shirt is now stained with blood. I think it makes me look tough - haha. I also had a wonderful surgeon and great nurses who let me keep my sunglasses and headphones on until the anesthesia kicked in and they were back on when I woke up in recovery. I'm very thankful for that because the bright lights and noises in recovery could have easily caused a seizure! So, again, the Lord always goes before me and this time was no exception!

The bad part of the whole ordeal was the pain medication. After having passed over 100 kidney stones and having had 20 surgeries, well, I've developed a high tolerance for pain medications. The nurse in recovery couldn't believe how much I was still hurting after two doses of morphine. There are many instances where someone could fake pain just to get pain medication, but you just can't fake pain when you're coming out of anesthesia so they know it's not that you WANT morphine, it's that you need it. They ended up having to give me a 3rd dose and then later switched to a dose of toradol (another strong pain killer). M talked to the surgeon about my problems with pain medications and told her we still had some Fentanyl pain patches from a kidney stone 7 months ago. She wouldn't be able to prescribe such a strong drug to me for a minor surgery but she went over with M what medications I could take while on Fentanyl and what to avoid. I tried to just take the Lortab pain pills she prescribed because I honestly HATE pain medication, but I got no relief at all with the pills. After 36 hours of watching me wincing in pain and crying out each time I moved, M finally told me he was going to put a pain patch on my back. I was hurting too much to argue about how I could "tough it out" so the patch was put to work. It works wonders and my incisions are now just sore and I can walk to the bathroom without bending over double!

Oh, my kidney function tests showed improvement this week. We actually didn't know if I would be able to have the surgery on Thursday since they wouldn't operate if my kidney function stayed the same or worsened. So, again - THANK YOU LORD - because I was desperate to have that gallbladder removed. My kidney function even improved enough for me to start on IV Doxycycline this week - YAY!


I just wanted to thank you all for your kind thoughts and sweet prayers! I know that God has gotten me through all of this and I continue to lean on Him to get over the next hurdle. I pray that you all feel His love and protection as you go through your own hurdles in your life. I feel very groggy from medication right now, but I feel more blessed than anything else. I can see that God is still leading me down a path and He has wonderful plans for me! I just have to be patient and keep leaning on Him to get there!

I know I've posted these verses before - but I don't think one can ever hear them enough:

"I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the Lord." Psalm 40:1-3 (NIV)

Much love-
K

Out with the bad...

My surgery to have my gallbladder removed is scheduled for 10:30 tomorrow morning. This will be my third laproscopic surgery so the good thing is that I'm not nervous about it. The bad thing is that my blood test from last week came back and my kidney function was actually worse even though I had been off the antibiotic for 2 days before my blood was drawn. Until my kidney function gets back to normal, I can't take ANY antibiotics. And, the longer I'm off the antibiotics, more of my symptoms come back. Going to consult with the surgeon on Monday was very difficult. My noise sensitivity was bad and I had to go back to wearing my earplugs and even my headphones. After thinking about all the progress I've made I was able to notice more of the psychological symptoms that Lyme and Bartonella cause. I knew my mood swings had gone away - no getting angry for no reason and then crying because I couldn't figure out why I was angry. I recognized that I was able to think more clearly and was not as confused as I had been. I also noticed that I've been less anxious as well.

Those are things you might not notice until they start to come back. I am having more difficulty thinking, although I believe that could also be due to the fact that I've had to be off of my blood thinner in order to have the endoscopy and the gallbladder surgery. No blood thinner means less blood flow to the brain which equals more difficulty processing even the most simple of thoughts. I have a hard time completing sentences without stopping in the middle to think of the next word. In fact, writing this entry has taken forever because I keep having to stop and think so hard about how to explain things. There is good news though. First, I don't feel those mood swings coming back. I thank the good Lord for that because they make you feel absolutely insane! Also, I'll be back on my blood thinner medication within a day or so of the surgery and after a few days of it I believe my ability to think clearly will come back.

However, the anxiety has started to creep back in. It's anxiety over the smallest things - like going to an unfamiliar place, having to meet someone I don't know, or not be able to expect what's coming next in my day. I know noises can trigger my seizures and I felt that again as I was in the hospital and surgeon's office the other day. After spending months without the unexplainable anxiety, I now believe that the more anxious I feel the worse my sensitivity to sound becomes. The anxiety also seems to put my brain in a state where seizures are more likely. I've been noise sensitive for a long time - long before starting treatment in Kansas City. And while it definitely became much worse, I think the way noises startle me might cause my seizures more than the noises themselves. It's always been easy to startle me because my "fight or flight" response, which comes when you get scared, doesn't work very well. The horomone that is released by the adrenal glands to respond to situations where you get scared or startled is cortisol. My cortisol levels were sky high when I first got to Kansas City. So much so that the doctor said it was as if I were being chased by a tiger all day. I stayed in a state of nervousness and anxiety well beyond what would be considered normal. My cortisol levels are lower now, but my adrenal glands still don't work as well as they should. I think on the Gentamicin my anxiety lessened as did most of my other symptoms and my adrenal glands started to function better. My anxiety is not nearly as bad as it was before the Gentamicin. I believe God allowed me to have a break from so many of my symptoms in order for me to understand them better. Once you better understand the reason behind the symptoms, you can understand how to treat them more effectively.

I've probably rambled on more in this entry than in others because well, I just can't think very well right now. I do trust in the fact that God has wonderful things planned for my life and that He will get me through all of this. I am looking forward to seeing how much better I feel after my gallbladder is removed. The surgeon said I might see a big difference in many of my symptoms, but that I should definitely have less back pain and stomach problems. I'll just be happy to eat again without getting sick and being able to get rid of this horrible chest pain. But, I must admit, I'm excited to think about what other symptoms may be related to my gallbladder that I haven't even thought about. God is good and He's proven that to me time and time again. I look forward to having this surgery behind me and for my kidneys to function properly again so we can get back on a treatment regimen and keep pushing forward.

I appreciate all of your prayers and would of course appreciate some as I go through my surgery and recovery. I'll write an update as soon as I can. Thank you all so much for keeping me in your thoughts and prayers!

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:14 (NIV)

"O Lord, you are my God; I will exault you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago." Isaiah 25:1 (NIV)

Much love to you all!
K

The ups and downs of it all...

I have noticed a pattern since I've been on treatment. It seems like I'll be making progress, feeling better, have more energy - or some other positive thing - and then BAM, something knocks me down again. I'm quite tired of it to tell you the truth.

I'll give you some recent examples. The Gentamicin was showing me the most improvement by far in my treatment! I didn't just go out into the world For the past 2 months I had been experiencing what I thought was horrible acid reflux or bad heartburn every day. The doctor put me on an acid reducing medication and it seemed like it helped at first. Anytime I tried to stop taking it though I would end up nauseated and getting sick. I figured it might be a side effect of the Gentamicin and thought I could deal with that side effect if I had to because I was seeing so much improvement in other areas.

I have blood work done every week - I may have written about that before. Anyway, I have all of my labwork results from June of 2009 to now in chronological order. The results are mailed to me each week. I had noticed that my creatinine level was climbing for a few weeks, but it was still within normal ranges. Creatinine is a waste product in your blood that your kidneys filter out. Testing creatinine levels basically tell you whether your kidneys are filtering properly. I was concerned that it was getting higher, but not too concerned - until it went outside of the normal range. Sometimes when you're on IV antibiotics there are times when your kidneys just seem to "slow down" in their filtering process. I had times where this had happened while I was in Kansas City and the levels went back to normal within a couple of weeks. When my creatinine levels was high for the 3rd week in a row the doctor and I both knew it was time for a meeting.

I knew that we would have to stop the Gentamicin because you just can't push your kidneys like that. We were basically meeting to discuss what other antibiotic choices we had and what we thought would be the next best thing for my treatment protocol. Since I was there I decided to tell him just how HORRIBLE my acid reflux was. I only did this because I had stabbing pains in my abdomen on Sunday and I was generally feeling worn down and nauseated all the time. He scheduled an endoscopy (where they put a small scope down your throat to see inside your esophogus and top of your stomach) and a couple of tests to check out my gallbladder.

Wednesday I had an ultrasound on the gallbladder and then a test that basically checks the function of your gallbladder. They inject die into your system and then take scans of your abdomen for an hour (but you get to lie down so it's not bad). They then inject an enzyme and see how your gallbladder handles it. That part made me nauseated and feeling weak. The next morning I had the endoscopy done and the doctor said everything looked fine - no damage to the esphogus or hiatal hernia, etc. The lab results for the gallbladder test weren't coming back until Friday.

In the meantime I was feeling like crap! I was so ready to find the problem and fix it! I was actually praying they would have to remove my gallbladder because that would be an "easy fix" compared to trying to treat yet another symptom. So, I was happy to find out yesterday that my gallbladder will have to be removed. It has about 25% functionality and is the reason for the heartburn, severe pain in my abdomen and my upper back. We meet with the surgeon on Monday afternoon for a consult and to set up a date for the surgery. She performs surgeries Wednesdays through Fridays so I am praying we can get in on Wednesday because I'm VERY tired of not being able to eat without excrutiating pain and attempts to throw up!

I stopped the Gentamicin this past Monday and so far have been impressed that I am still functioing well and not having seizures, etc. I did exceptionally well out in public at the hospital for the tests and I didn't even wear earplugs - YAY! Last time I took a short break from the Gentamicin I ended up having a small seizure by day 4 so I was very worried about having to get off of it. But I think God is showing me that it is HIS plan to have me off the Gentamicin. I still have a hard time with control - I want to control my situation but I cannot. God is showing me that He is in control and He can do great things - like giving me the ability to go out in public with no earplugs! I was worried about getting these tests done as soon as possible and to schedule my surgery as soon as I can. It wasn't just for the pain factor, but also because that being off the antibiotics could mean the seizures might start up again, and for the simple fact that I can't start a new antibiotic until we get all of this done. I was hoping I could start one this week, but my blood work from this Wednesday came back showing I still have high creatinine levels. We can't start ANY antibiotic therapy until my kidney function improves - praying my levels are back to normal this week!

I'm forcing myself to think that this may be God's way of leading me down a different road in my treatment process. There will be a day, hopefully soon, where I'll get off of the IV antibiotics and just continue on orals. I have prayed that God will make it abundantly clear to both M and I as to when that change needs to happen. For now the doctor says we should stick with IV meds until we stop seeing improvement. So far we haven't stopped seeing improvement - we keep seeing MAJOR improvement - thank you Lord! When I went in to see my doctor on Tuesday I pushed myself to put on FULL makeup - foundation, powder, mascara, lip gloss, etc. I went into his office without the earplugs like last time, but for the first time ever I went without my sunglasses! I am handling flourescent lights better - still not great, but for short periods of time I can deal with them. It's the first time his staff has even seen my full face! Outside of a very quick eye check a few months ago, it's the first time my doctor has seen me without my sunglasses! He had to hug me twice because he was so happy for all of this progress! He just beams when he sees me - no oxygen, no wheelchair, no earplugs or headphones, and now - no sunglasses!

So, while I may feel like there's a pattern of 1 step forward then 2 steps back in my treatment, well, that's just not true. I hate that there's a couple of wrenches in the works - like poor kidney function and the gallbladder surgery. BUT when you think about where I was a year ago, or even just 3 months ago - WOW - I have come so very far! God might not have taken all the pain out of my life. He may not have made my path to recovery a smooth one - but He is healing me! I am just being impatient - or rather, being human. This has seemed like a very long journey to me, but I stop and think about how it might seem to God. I imagine that close to 17 months of treatment go by in a blink of an eye in God's time table. When we pray most of us ask God for something to happen. I know people who are praying for a job, or for their children to do well in school, or just for some peace in their lives, and when it doesn't happen within a few weeks we all think, "Well, I guess the answer to my prayer is just NO." We are so silly aren't we? I have just been praying for healing and I have been trying to tell God that I just can't take all of this anymore! But that's absurd since God's the one who has been carrying me through all of this anyway and He can get me through much more. Sitting back and comparing where my life was one year ago to where it is now - well, I have so much to be thankful for because my prayers are being answered. I may still have a ways to go, but sometimes if we step back and focus on our "big picture" we see that so many of our prayers have been answered. I know I've seen so many problems that I've prayed about all work out just fine.

So, yes, I do have to have another surgery and yes, I hate that I have to go through another set back. I hate that I have to go back to the drawing board as far as coming up with a new antibiotic treatment regimen. I hate that my kidneys aren't handling this very well. BUT how much happier am I that I can see such amazing progress? When I started writing this I did feel a little, "poor me...having surgery again" (that should be said in the voice of Eeyore, the donkey from Winne the Pooh - he has a great complaining voice). However, by the end of typing ALL of these thoughts, God has shown me that He is ALWAYS working - no matter if we can see it or not. In my case, I am getting to see His work - His healing me - and I am humbled to be so very blessed. I'll get through that laproscopic gallbladder surgery just fine and I will find out how much better I REALLY feel afterwards! I bet it'll make me even more thankful for what He has done!

Oh, and of course, I am always thankful for all of your prayers - they are being answered! I'll try and write on here to let you know when the surgery is going to be and again as soon after the surgery as I can. I can't wait to see what's in store next!

And, since it is time for trick or treating I thought I would post a picture from last Halloween where the patients in the clinic dressed up for Halloween. I'll post a picture of me from then and compare it to a picture taken of me this past week and you'll see the big difference!

Oh, and I'm a big fan of sarcastic humor - or in finding humor in sitations that aren't really humorous so last year I dressed up as Lyme Disease:

My shirt says, "I have Lyme. You got any tequila?". The lime green spirals of ribbon on the top of my hat symbolize the Lyme spirochete bacteria which are shaped like corkscrews. The two green monsters on my hips stand for the Lyme co-infections Bartonella and Babesia. Like I said, I find humor in the things most people don't find funny at all. But, honestly, wouldn't you rather laugh than cry? Or maybe cry laughing??? Also, I may feel like total crap, but when there's a camera around...well, I smile - haha! Oh, and that's IV Benadryl that I'm pushing into my PICC line.


Now - this picture was taken on my deck this past week before my doctor's appointment. I'm 15 pound heavier, have the ability to stand up longer, am outside without sunglasses (well, just for this picture anyway but it's a start) and I'm even wearing shoes with heels instead of comfy tennis shoes because the severe pain in my feet is not there anymore! God is SO good!!!

"Who is as mighty as you, O Lord? Your faithfulness surrounds you." Psalm 89:6 (NRSV)

"I lift up my eyes to the hills - from where will my help come? My help comes from the Lord, who made heaven and earth." Psalm 121:1-2 (NRSV)

"Pray for one another, so that you may be healed. The prayer of the righteous is powerful and effective." James 5:16 (NRSV)

"The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." Zephaniah 3:17 (NIV)

Much love to you all!
K

Appointed and Disappointed

I’ve been feeling disappointed lately. When I first started the IV Gentamicinin in late August I saw so many improvements in my health and my ability to do things. I started expecting more and more improvements and imagined what I’d be doing by now, the middle of October. I had plans basically and have been disappointed that I haven’t been able to follow through with them by now. I wanted to be getting out into the world by now, but my sound sensitivity is still so bad that I have yet to venture outside of the house. I’ve been in the house for 2 months now and I’ve been in a hole feeling sorry for myself about it. That leads to me being disappointed in myself for how I’m handling all of this. I feel like I’m not appreciating the things I can do, that I wasn’t able to do 2 months ago. I want the whole process to speed up! I’m disappointed that it I haven’t gotten well FASTER. I’ve just been disappointed.

I was thinking about being disappointed. I can’t watch much television or be on the computer too much because it zaps my energy, and I’m alone most the time so I have a LOT of time to think. I went from thinking about my being disappointed to thinking on the word disappointed. I thought about the many words there are in the English language that mean one thing and then if you add the prefix “dis” to the word its’ meaning is the opposite of the original word. For example, you can assemble something – put something together – and you can disassemble something – or take it apart. God was leading me on a “thought pattern” which is when I have no idea He’s showing me something – I’m just thinking, not wondering if there’s a point. These “thought patterns” lead to some of my most important observations, or rather they lead me to something God wants me to learn. God put it on my heart to share this with you so I wanted to explain that what you’re about to read is laid out exactly as it happened in my “thought pattern” so there will be some twists and turns as I get to a point…nothing new there I guess.

So, as I thought about the word disappointed, I started thinking about the word appointed as well. I think God wanted me to “research” those words. When I looked up the word appoint in the dictionary it listed multiple definitions or ways this word could be used. One definition was “to name or assign to a position” and it gave examples of how we use that word in this day and age, such as “to appoint a judge to a bench” or “to appoint a new treasurer”. But, the last definition was listed as “archaic” which suggests that many years ago, or even centuries perhaps, the word had a somewhat different meaning. That definition was “to order or establish by decree or command” and the example was “laws appointed by God” and that’s the definition I believe God wanted me to understand.

Then I looked up the true definition of disappoint and read, “to fail to fulfill the expectations or wishes of”. Another definition explained the meaning as “to defeat the fulfillment of (hopes, plans, etc.); thwart; frustrate”. If we use our modern day definition of appoint and disappoint we believe that the word disappoint would be to fail at a job or task we were appointed to. However, I think God had me read these definitions for the purpose of understanding that disappoint could also mean to fail at a task appointed by God or a command given by God. So if I feel disappointed then what task or commandment given by God am I failing at or not following?

When asked what the greatest commandment in the law was, Jesus replied saying, “Love the Lord your God with all your heart, and with all your soul, and with all your mind. This is the first and greatest commandment. And the second is like it: Love your neighbor as you love yourself.” (Matthew 22:36-39) Jesus later gives all Christians a task – often referred to as “The Great Commission”. Jesus said, “All authority in heaven and on earth has been given to me. Therefore go and make disciples of all the nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit, and teaching them to obey everything I have commanded you.” (Matthew 28:18-20). So I had to think if I was not doing those things, not putting God first, not sharing God’s love, or not sharing God’s word. I realized I was failing at all of those things. I believe that is the real root cause of my disappointment. When you put your hopes on circumstances, things or people, you will most likely end up disappointed. When you place all your hopes and your trust in God you can’t be disappointed.

I realized that I had I had been focusing on getting well more than I had been focusing on God. I was placing more importance on what I could do to get well rather than what I could do to get closer to God. I was not loving my neighbor because I was too focused on how other people’s lives seem so much easier than mine – I was envious instead of loving. I also realized I had been shying away from writing entries on here, so I was not using the one way I have of reaching the outside world to spread the love or the word of God. Basically my priorities had gotten turned around again.

Then God hit me with something very hard. If I put the archaic definition of appoint with that second definition of disappoint the result is scary. The combination of those definitions would be “to thwart” the “commands or laws appointed by God”. Not just fail at the tasks and commandments, but to actually get in the way of them. It would mean to try to DEFEAT the fulfillment of God’s commands. WOW. I then thought, “I don’t get in God’s way!” – but after thinking on it I realized that I do get in God’s way. I get in His way every day! I was failing at the two greatest commandments AND the Great Commission because I was too busy blocking out what God wanted me to think about by focusing solely on what I wanted to happen in my life. He wants me to love Him with all my heart and yet too often I find that my heart is focused more on getting well and not on God. I hate to admit that I’ve also put things I want before Him at times, but I have. I’m letting my thoughts focus on other things rather than God. It’s not on purpose, but I can control it if I constantly bring my thoughts back to God. And when I’m busy feeling disappointed about what my life is like or feeling frustrated with my treatment I’m missing the opportunity to share God’s love. I’m even missing out on feeling God’s love for me. What’s even worse is that I find I might do these things several times a day!

We can all interfere with the instructions and commandments given to us by Jesus without even knowing what we’re doing. Keeping all of that in mind, we must realize that when we feel true disappointment it may actually be because we have thwarted or gotten in the way of God’s plans for us. We may have unknowingly defeated ourselves. We often pray and feel as though we get no answers or that God doesn’t hear us, but that’s not the case. I believe we are often too focused on what WE want to happen that we may completely miss what GOD is doing in our lives or where He is trying to lead us.

I don’t want to focus on my health instead of God because I will only end up frustrated. I’m doing all I can to get well, and that’s all I can do. I don’t want to be envious of other people’s lives because in all honesty I have no idea what their lives are like, they could be dealing with huge problems I don’t know about. I definitely don’t want to miss out on sharing God’s word with others because I know how important a true relationship with God is. My relationship with God is not only what gets me through all of my health obstacles – it’s what has kept me sane and pushed me through the hardest days! I want everyone to ask Jesus to live in their hearts and to ask that God direct their paths. Why do I want that? It comes back to those two words – we are all appointed to love God, to love others, and to share God’s word with others. If we fail at those things, well, it’s no surprise that we would feel disappointed in our own lives.

I’m going to share something about focusing our thoughts on God from the book, “Jesus Calling” by Sarah Young (the missionary who was in treatment with me in Kansas City). She writes the daily devotionals as though Jesus were the one speaking:

“Make Me your focal point as you move through this day. Just as a spinning ballerina must keep returning her eyes to a given point to maintain her balance, so you must keep returning your focus to Me. Circumstances are in flux, and the world seems to be whirling around you. The only way to keep your balance is to fix your eyes on Me, the One who never changes. If you gaze too long at your circumstances, you will become dizzy and confused. Look to me, refreshing yourself in My Presence, and your steps will be steady and sure.”

She references two verses as well:

“Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God.”
Hebrews 12:2 (NIV)

“But you remain the same and your years will never end.” Psalm 102:27 (NIV)

I wanted to share one more verse that hit me today:

“I waited patiently for the Lord; he turned to me and heard my cry.” Psalm 40:1 (NIV)

I have to remember that a lot – to wait PATIENTLY on the Lord because He does hear my cries. And guess what…as soon as I finished this entry I went and put on some clothes. Then I brushed my hair and my teeth – I even dabbed on a little bit of makeup. I’m headed out the door of this house – I don’t know how I’ll handle being out in public, but God has given me the strength to go find out. You don’t get somewhere by sitting around. When we feel God pushing us, well, we have to push WITH Him instead of against Him to go forward. I’m going forward in about an hour. I’ll let you know how it goes as soon as I can!

Much love to you all-
K

***10/15/10 - Editor's Note***
I went out yesterday and it was WONDERFUL! I went to a bookstore and didn't have to wear earplugs. I wore sunglasses but not for the entire time I was in the store. My mom then took me to a clothing store and the music was SO loud. I put in my earplugs but it was still too loud. Amazing thing is that I didn't drop down and have a seizure! We went to another clothing store where the music wasn't as loud, I kept my earplugs in and I even bought a pair of jeans! It was about 2 hours of being "out and about" and it was GREAT! I took some Valium before I went but only 1/4 of the amount I used to take every day in Kansas City. I never even felt like a seizure was coming on :) I can't explain how excited I was to be out in public and how great it was to feel a little normalcy in my life. We're going to try and get me out of the house a couple of times a week for an hour or two at a time. But I also know that there will be days I won't feel up to getting out and I can't let those days kill the joy of my really good days. I am thanking God for such a wonderful day!

How to get out...

Have you ever found yourself in a situation where you thought to yourself, “How did I ever get here?” I know there’s been plenty of times, and lots of different situations, where I’ve asked myself that question. In reality I should have been asking myself, “How do I get out of here?” I have found that when things get hard it’s a lot easier to sit and think about what could have caused my problems than thinking of an actual solution to them. Over the past few years I have asked myself how I ended up in this bed countless times. This particular situation is different in that I couldn’t help being sick, but the logic is the same. I focused on how “unfair” things were. I thought about how other people had much easier lives. Basically, I felt sorry for myself and I kept thinking about how bad things had gotten. What I didn’t do was stop myself from that train of thought and think, “What do I need to do to get out of here?” because that is the more important question.

I think God has allowed me to go through all of this for many reasons, some of which I will never know. However, I do know some of the things it has made me think about and often times work towards changing. Just for starters, it has changed who I am, how I act, what is important to me, what kind of life I want to lead, and what kind of people I want to surround myself with as I go through this life. Quite simply, I will look back on this time, on these years of sickness, and I will say, “That is when my life changed for the better.” Might sound odd, but I know that I was supposed to go through ALL of this in order to figure out who I was and more importantly, who God wanted me to become. I have to hope and pray daily that I am getting closer to becoming who God wants me to become because honestly, it’s so easy to fall into the trap of feeling sorry for myself. Even when I see so many improvements I often wonder why things aren’t happening faster. I’m like a child who can’t appreciate all the wonderful toys I already have because I’m too busy wanting the toys I don’t have. So, I pray that I am sticking to the physical AND mental course God has set for me so that I don’t skip over anything. God wants me to see how many prayers have been answered for me and some days I am overcome with just how many He has answered. But, I’m human, so on other days I focus on the prayers He hasn’t answered for me. Silly thing to do since you never know what prayers God will answer or, maybe more importantly, WHEN He will answer them.

Robert Frost wrote, “The best way out is always through.” I’ve thought a lot about that quote over the past week or so. I’ve wondered if I’m doing what I need to do, if I’m doing all I can do, to get better sooner. When I’ve suffered a set back, I would feel as if the world was ending and would get so upset. That’s when I thought about the quote from Robert Frost. There is no way to speed things along, there is no magic potion that will have me up and out of this bed and leading a “productive life”. It took years to get that sick, it’s taken a year and a half of treatment to get me feeling half-way human. It only makes sense that I won’t be able to jump up tomorrow, get dressed, and go drive myself somewhere. So, it’s not that the “best way out is always through” – it’s that “through” is the ONLY way out! So, I continue to fight to get better. The fight is getting easier, but sometimes that makes it more mentally frustrating. I am feeling stronger – I do want to go and do a million things – but I simply have to wait and slowly build up my strength. I still have other diseases to fight. I will get there, but not by force. I will get there by faith. I know God can do anything and I know He has led me through all of this. He has not stopped leading me nor will He ever give up on me. I need Him every day. I don’t just need Him for getting me through another day when I feel horrible. I need Him on good days too. But, I always thank Him for getting me through those MISERABLE days. I need to focus more on thanking Him for the “Hey, I don’t feel like death today” days as well.

I’ve had some set backs lately. The anti-parasitic medication has not been easy on me, but I’ve been through much worse for sure. I’ve had more of the fevers again, felt weaker, had to slow myself down and keep myself from trying to “push through the pain”. But, I’m doing so much better than I was 2 months ago. I have to keep reminding myself that it doesn’t happen overnight. It takes time and that’s okay. I need to realize that God has always had a plan for my life and while I may think things are taking too long, He’s always had the timeline planned out. I need to stop thinking about “how I got here”, to stop feeling sorry for myself, to stop comparing my life to the lives of others – in short, I need to just trust God. I guess that’s something we all have to work on doing every day. We like to think we are in control of so much, but in reality, God’s in control and we need to seek His guidance as to how to get through each day.

“I will bless the Lord at all times; His praise shall continually be in my mouth.” Psalm 34:1 (NRSV)

“He is not far from each one of us. For in him we live and move and have our being.” Acts 17:27-28 (NIV)

“I will lie down and sleep in peace, for you alone, O Lord, make me dwell in safety.” Psalm 4:8 (NIV)

I again want to thank you all for your prayers and for just keeping up with me. The computer is my way of staying connected to the world and I’m glad there are people who want to read my ramblings as I journey along.

Much love-
K

Quick update

I feel bad for not upadting sooner. Just wanted to say I've been doing well - getting out of the bed a lot more, building up muscle mass in my legs! Just being able to do a few things out of the bed perks me up so much! There are still days where I don't get out of the bed - today being one of them - but I feel I'm improving slowly but surely.

The bad thing about these diseases is that once you start feeling stronger there's always another disease you need to hit! So, since I'm tolerating the Gentamicin IVs so well we started me on the supplements Para Cleanse and Colon Booster. I know it sounds weird to say I'm killing off parasites in my body, but did you know over 80% of people have some sort of intestinal parasite? Most of those people never even know they have them because their immune systems can handle things like that. But, when you put parasites with other illnesses that weaken your immune system there is a problem. So the past week or so has been difficult. The toxin level in my body has risen due to the die off of some of the parasites. Pair that with the toxins from killing off the other diseases with the IV anitbiotic and you get someone who's very tired and weak feeling. I force myself to get up and do things some days, but some days I simply can't. I also know I push myself way too much some days, and that ends up with me in the bed for a few days. BUT, it's a signal of SO much progress that there are days when I CAN push myself. Before I may have had the desire, but not the physical ability to get up and do anything. I am improving, it's just a slow process.

I don't know if I ever mentioned this on here but I have daily fevers. I've had a fever every single day since March. Most days they go anywhere from an elevated temperature 99.5 or so up to 101 degrees. However, since my normal body temperature is low (usually 96.8) even going to 99.5 is hard. I've been seeing some improvement in the fevers lately. They haven't gone away, but they aren't going as high every day. That's a really good sign. But, if you want to know what a "good day" is for me, imagine having the flu, mono, a fever, and a stomach bug all at the same time - well, you get the idea...haha. The Lyme, Bartonella, Babesia, etc. take such a toll on me that a good day is when I feel "half-way sick" but I am improving and I am praying that soon my good days will actually be closer to what healthy people's good days feel like!

I'm working on another post but God's not done letting me know what to say. So, in the meantime, I figured I would let you know what's going on with me health wise. I'm improving, I'm still fighting, and I'm still in need of prayers to get through all of this. I appreciate each and every one of them!

"God is faithful, and he will not let you be tested beyond your strength, but with the testing he will also provide the way out so tht you may be able to endure it." 1 Corinthians 10:13 (NRSV)

He has not tested me beyond my strength, He has provided relief to me, He has carried me through these things, He is faithful and will provide a way out for me. God is good all the time, all the time God is good.

Much love to you all-
K

Climbing up from the valley...

I haven’t written any updates lately because, and yes I realize how ridiculous this sounds, I haven’t wanted to (you guessed it) “jinx” it. When will I learn to just trust God and understand that I can’t “jinx” anything? Another reason I didn’t write about some of my big improvements is because the diseases I have are different than most in the fact that you can go from really good to extremely bad very quickly. I guess I felt like people might not understand if I wrote about feeling better then had to turn around the next week and explain that I felt bad again. I struggled with this entry more than any other I think. However, after talking with God I realized I have had so many wonderful people praying for me and they needed to know how many prayers were being answered. I also realized that the people who have continued to read this would understand if I had to come back and explain that things had gotten bad again. God made me see that if I didn’t write about my progress then He wouldn’t get the full glory He so rightly deserves and none of you would get to feel that amazing feeling that comes when you see, or read, about prayers being answered. So, to God be the glory for what He’s done for me.

In my last entry I wrote about doing laundry and accomplishing a few other tasks that made me see how much better I was getting to be able to do any of that. However, I also wrote about how frustrated I got when I realized that I wanted to do MORE and I couldn’t because my body has been in bed for almost 2 years straight. I also wrote about how hard treatment itself is on the body. I wanted to get up and do more but in all honesty, I couldn’t because I don’t have the muscles to do things anymore. My calf muscles feel, and look, like they aren’t even there. I understood that my body couldn’t do more because of what all I’ve been through.

I prayed and just talked to God about how I would get some strength back. After thinking about what all I’ve been through I realized I basically need physical rehabilitation. So guess what…I started my own rehab! I actually got on our elliptical machine downstairs and went for 3 minutes one day. Of course, I didn’t have any incline or resistance turned on but still – I was in motion for 3 minutes! Then I started to slowly increase. My husband would laugh at that last sentence because my version of slowly increasing was to go from 3 minutes to 7 minutes then to 15 minutes. I am so OCD about how I work out on that machine. I mean, the screen tells you how long you’re on, how many rotations you’ve done, how fast you’re going, how many carbs you’re burning – who wouldn’t start staring at numbers and pushing harder and making goals instead of just doing 3-5 minutes every day – haha! I have to keep my pulse oxymeter on to make sure my heart rate doesn’t go too high but that’s really the only number that will stop me! I’ve said before that we won’t know the extent of my cardiac damage for probably a year or so after treatment. My heart still has to work hard just for me to stand up since my blood pressure bottoms out when I stand up. If I stand up and stay in one position I will pass out the only question is how quickly it will happen. SO, I am watching my heart while I start this rehab process. My heart rate when I’m sitting is usually in the high 60s to low 70s but when I stand up it’s around 120. I don’t want to push it too hard so I make sure that it doesn’t go above 140 when I’m on the elliptical machine.

I am still having to deal with some emotional herxes from the IV medication. I find myself frustrated easily so I know I need to keep bringing all of this to God. Some days it’s hard though. It’s as if my mind wants to be mad at God for all I’ve had to go through, but my heart knows that He’s bringing me through all of this. He is the reason I’m getting anywhere. I have to stop thinking, “Why did I have to get so sick? Why did I have to miss out on the past 5 years of my life basically?” and I have to start praising God for all He’s doing and what I know He will continue to do for me. I am such an impatient person and I am so ready to be healthy and “get on with my life” that I have a hard time thanking God for each and every improvement. But I’m trying to praise Him more and question Him less! I think most people probably have a hard time with that! There are so many questions we have about the bad things that happen in this world that we often overlook the multitude of wonderful things God does for us on a daily basis!

I’m going to be honest and explain that just 2 months ago things were extremely bad with my health. There were a few nights that I worried I just wouldn’t wake up in the morning. I had such horrible pain and was on oxygen almost all the time. I was too weak to walk the 5 steps to my bathroom and would have to support my weight on furniture or walls to get there. It was one of the darkest times of my life. I told my husband that over the past 5 years I’ve gotten used to continuing to fall lower and lower. It seemed like I was going downhill and each time I would think I hit the bottom, well, I would fall even lower. So, for a long while I think I had fallen off the mountaintop and had found the deepest part of the valley. I walked with God there for a long time, or rather God carried me through that valley for a long time. I have always believed that you learn more from your time in the valley than you do from time on the mountaintop. When you’re on the mountaintop you don’t feel that deep need to lean on God for every single thing. But, when you’re in the valley God is the only thing you have to cling to and your dependence on Him grows daily. I would not be the person I am today if not for my times in the valley. As much as I hate to look back at all the times in my life when I was unable to do things because I was sick, well, from my current perspective I realize those were the times that God was working on me the most. His greatest work in me has come in the past 3 to 5 years as I have struggled so much but learned to lean on Him so much more.

Now, here I am with good news. Here I am walking around my house, taking showers, doing laundry, getting on the elliptical machine – can you believe how fast God has started to bring me out of the valley? But I must admit I had another thought about getting out of the valley. Falling down from the mountaintop did not take work – it just happened. However, climbing out of the valley is another story. God will be the one who gets me out of the valley but I must be active in my own rescue – I must push myself to take the next step. I must force myself to remember what it was like to have a “real life” where I could function somewhat normally. Falling down happens to you but getting up is something that requires effort. Of course I am not alone in this effort! God is with me as I climb up the side of the mountain just as much as He was when I was falling in the valley. The difference to me will be how much more I appreciate the view from the mountaintop after spending so much time in the valley.

I have another story before ending this long entry. While I was in Kansas City I had the pleasure of meeting another patient there named Sarah Young. She and her husband have been missionaries for over 20 years. I must say she radiates God’s love – it just shines right through her. And as much as I hate that we had to meet under such horrible circumstances with both of us going through IV treatment, getting to know her was a blessing. If you’re wondering why I’m using her full name it’s because she’s also an author who has written a wonderful daily devotional book called, “Jesus Calling”. She gave me the audio CD version last August after I had gone through the emergency surgery where I lost my right ovary. I was too sick to be able to read but she knew that listening to it might help me. She had been sick for a long time too and this book came out of her personal writings in her prayer journals. As years went by she started focusing more on listening to God and writing down what she thought He was trying to share with her rather than just writing down her own words. She’ll tell you that her writings are not inspired as Scripture is, but they helped her grow closer to God. I started to listen to this book again lately as I went through my morning IV treatments. As I’ve seen improvements in my body each day, the book started to take on a new meaning to me as I listen to it this time versus when I listened to it at this time last year. I didn’t realize that lately I started asking God not only, “Why me? Why do I have to go through this?” but also, “When is this going to end? Will there ever be a day when I can say I’m healthy?” So, one morning as I listened, I heard the devotional for that exact day and it hit me hard. I wanted to share it with you:

“Grow strong in your weakness. Some of My children I’ve gifted with abundant strength and stamina. Others, like you, have received the humble gift of frailty. Your fragility is not a punishment, nor does it indicate a lack of faith. On the contrary, weak ones like you must live by faith, depending on Me to get you through the day. I am developing your ability to trust Me, to lean on Me, rather than on your understanding. Your natural preference is to plan out your day, knowing what will happen when. My preference is for you to depend on Me continually, trusting Me to guide you and strengthen you as needed. This is how you grow strong in your weakness.”

She wrote that after reflecting on the following verses:

“Now listen, you who say ‘Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.’ Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, ‘If it is the Lord’s will, we will live and do this or that.’” James 4:13-15 (NIV)

“Trust in the Lord with all your heart and lean not on your own understanding.” Proverbs 3:5 (NIV)

“Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:28-31 (NIV)

I used Isaiah 40:31 in my August 21st entry after being able to go without the wheelchair to my doctor’s office. I use that verse a lot. It’s one I cling to and love to read. I now have the hard copy of Sarah’s book as well and lately I either read or listen to the CDs most every day. I read it knowing that she wrote it during the time in her life when she was sick and could not find help. I read it knowing that as a missionary of 20+ years, she was hit by the same diseases that I had been hit with. I read it knowing that we will never know the answer to “Why me God?” and that our belief in God and our works here on earth do not keep us from experiencing bad things. However, our belief in God does help us get through those bad things and sometimes those bad things inspire us to do great works here on earth that can help others. Finally, I write this as I struggle to climb out of the valley and I know I must continue to lean on God as I begin my ascent. Thank you dear Lord for blessing me with so many improvements in my life!

(Side note: To those who know me personally and who want to comment on one of my entries please do not use my full name. I have left this blog open to the public so that anyone could read it whether they know me or not and that is why I use “K” when I write or “M” when I talk about my husband. I have pictures on here and I think that’s as much as I feel safe sharing. I’m sure you all understand and I truly love when I get comments! Also, if your comments have been deleted it is because my name was used so please don’t take offense.)

Much love-

K

Thanking God for laundry...

I am so very human and God made that crystal clear to me this week. He showed me just how impatient I am. We all know the “give them an inch and they’ll take a mile” phrase. We use it to describe people who are never satisfied with what they have. People who ask for something and when they get it they immediately ask for something else, something more. We can easily spot that in someone else but we rarely notice it in ourselves. This week God showed me how I too want to “take a mile”. I raved about the progress I got to see last week when I went to the doctor’s office. Then I had a few really hard days where I went back down and I was crushed. In my last entry I explained that I believed God let me have that really good day so that I might see a light at the end of this long tunnel. However, I am human and after that really good day I wanted MORE. I wanted to get up and clean my house, or better yet to get out of my house. I wanted to go out in public and not be bothered by noise or lots of people moving around. I wanted to drive my car. It’s been almost 16 months since I have driven at all. I wanted to be a “productive member of society” again. I simply wanted MORE!

This week I got a little taste of MORE and I liked it! Since I have been on the Gentamicin I am happy to report that I have not had any allergic reactions or seizures during treatment. I haven’t had a full grand mal seizure in a month! To God be the glory!!! I asked M if I could try to go without a “baby sitter” since treatments were going well. I haven’t been able to be stay home alone for almost 2 months. I get tired of feeling like people have to arrange their lives around me. If M had a business meeting my mom would have to give up her day to come here and take care of me. I wanted to see how I did staying by myself. So, we decided that when M went to the grocery store I could stay home alone. I did very well. I felt up to the challenge of taking care of myself for longer periods of time. So when M had 3 business meetings scheduled Tuesday I stayed at home alone. But this time I actually did something – I did LAUNDRY!!!! I washed 3 loads of laundry over a 7 hour period. I would put some clothes in the washer and go rest for awhile and then when I felt up to it I would go put those in the dryer and start a new load in the washer. I knew that if I happened to wash some and then not feel like putting them in the dryer that M could do that when he got home. I was so very happy when M got home and I showed him that not only did I wash 3 loads of clothes – I hung them up and put them away! I felt productive. I felt like a help and not a burden. I felt GOOD! The only bad thing was that getting up and moving showed me that the past 2 years I’ve spent in bed have taken a serious toll on my body. I have no muscle strength at all! I know it will take time to get that back, but I did laundry and I was pretty amazed that I did it! That night I had some really bad muscles jerks and spasms, but it wasn’t a true seizure. I realized that if I was going to be up and moving I needed to get back on some Valium so my brain wouldn’t go on overload and start misfiring signals at the end of the day!

Now we get to the part where I’ve been given an inch but want to take that mile. Wednesday I took the Valium and then changed the sheets on the bed and put the dirty ones in the wash. I then proceeded to take a shower and wash my hair. That’s really why I changed the sheets because after my shower I wanted to climb into a clean bed! I even washed the blanket on top of the bed! I didn’t move around as much that day and I did get tired much faster, but I felt good about what I had accomplished. The Valium did the trick and I didn’t have any seizure like muscle jerks that night – HOORAY!!! On Thursday I took my Valium and swept, well “Swiffered” actually, the bedroom floor. I eased into the hallway and by that point I realized I was pushing too hard and needed to get back in the bed.

I did get back into my bed, but I was frustrated. I wanted to clean the floors in the whole house. I really wanted to clean the whole house. That’s my problem. For years I have battled with alternating “good days” where I could do lots of things to “bad days” when I would have to stay in bed unable to do anything really. Living like that caused me to really push myself on a “good day” because for all I knew the next day would be a “bad day” and I could be stuck in bed for a week. I noticed I was back in that mindset this week. I had to stop and tell myself that I physically could not handle my old routine. My body has been through so much over the past year or two. While I am seeing amazing progress, I have to force myself to take things slowly or I’ll make things worse! So Friday I stayed in bed. I really didn’t have a choice because my body wasn’t feeling like doing anything that day. Again I was frustrated. In my heart I want to go to the grocery store, I want to cook dinner, I want to clean the house. Simply put I want to be a good wife and take all of those burdens off my husband’s shoulders. I want to be productive.

That’s when God got to me. He made me realize that I was making HUGE strides from where I was just two weeks ago but I wasn’t being truly thankful for them. He was answering my prayers and I was able to do things but instead of being thankful, you guessed it, I wanted MORE! God made me stop and realize that while I may not be able to take ALL of the burdens off of M’s shoulders, I did remove one of them. I did laundry. Then I did something I never thought I would do – I thanked God for laundry! I used to hate doing laundry and I complained, sometimes out loud and sometimes just in my head, any time I put a load in the washer. God showed me how grateful I should be to do laundry. Doing laundry requires some things we probably all take for granted. First, being physically able to complete the task is a blessing and I never thought about that until now. Second, most of us have washers and dryers that do the majority of the work themselves which is a blessing when you think of all the people in this world who don’t have such luxuries. Finally, doing laundry means we are blessed simply by having clothes to wash.

I remember telling God that as I healed I didn’t want to take anything for granted anymore – even the little things. But, as I said, I am human and while I did thank God for having a couple of good days and feeling accomplished, I quickly got frustrated with not being able to do more. Now God has shown me just how amazing my week has been. I did laundry, I took a shower and washed my hair, I changed the bed sheets, I “swiffered”, and I was able to stay home by myself! Thank you dear Lord for giving me that strength! Glory be to God for the healing He is performing in my body! I’m tired today but I’m happy because this week I did laundry. Only God knows what my body will feel up to doing this coming week. He’s showing me how to appreciate what I can do and not worry about what I can’t do. This journey of healing is on His time table, not mine. Instead of being frustrated by that I should be comforted by it because I prayed for His will to be done and His ways are the best ways. He also made me see the fear I have about healing. You may be wondering what there is to fear about being healed. Well, I didn’t know myself until He made it clear to me. Basically I have been sick for so long that I don’t know how to live like a healthy person. I told M I had no idea what I would do when/if I got well. The doctors say that I need to take a year to allow my body to detox from all these drugs and to let my body rest from the beating it has taken during treatment. God made me realize I was getting ahead of myself. If I pray for His will to be done then I should not be worried or fearful about my future. I should rest in the knowledge that He will show me what to do as I forge ahead and He will lead me into the next phase of my life. I have no idea what His will entails, but it could very well be that it involves me feeling better than I ever have before. Wouldn’t that be amazing? No matter what though, He’s told me to be thankful for laundry. So, from now on, every time I load that washer I want to make sure I stop and thank God because He’s blessed me so much!

Finally, I wanted to share the following excerpts from the book, “100 Days in the Secret Place” which were written in the late 1600s:

“Do not waster your suffering. Let suffering accomplish what God wants it to in your life. Never get so hard that you suffer for no reason and for no purpose. Paul says, ‘God loves a cheerful giver.’ How much He must love those who cheerfully give themselves to His dealings.” – Archbishop Francois de Fenelon

I need to focus on cheerfully giving myself to God and what His will is for my life. Focusing on today and not pushing towards what I want for tomorrow.

“When you seek God’s will alone, you find it everywhere, and you cannot go astray. Wanting what God wants always puts you on a straight path. The future is not yet yours; it may never be. Live in the present moment. Tomorrow’s grace is not given to you today. The present moment is the only place where you can touch the eternal realm.” – Archbishop Francois de Fenelon

And finally one simple verse that I should read every single day:

“Give thanks in all circumstances for this is God’s will for you in Christ Jesus.” 1 Thessalonians 5:16

Much love to you all –
K