Friday, December 31, 2010

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

Monday, December 13, 2010

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