A life outside of Lyme...

I know I haven’t written much on here lately. I had listed reasons for that in my past couple of entries I think. However, this time it’s not because I’m not seeing progress. And because I am seeing progress I’ve been baffled as to why I’m not on here praising God for it! Another friend who has battled Lyme was able to point out a big reason to me – I’m tired of my life being ALL about Lyme and the other diseases I battle. I’m just flat out tired of talking about how I feel all the time! I want a life outside of Lyme! I want to talk about other things! But, I feel I must update you all so that God gets the glory for what He’s doing in my life.

I started a new drug, Tindamax, to hit the Babesia since I can’t take Mepron without horrible results. I started taking it almost 3 weeks ago and it has gone well so far. I only take it twice a day for 3 days in a row and then after 4 weeks or so I will try doing it 5 days a week. I have experienced joint pain with it, but in comparison to how other meds have made me feel this one isn’t all that bad. I’m still taking IV Azithromycin in the mornings and then IV Rifampin in the afternoons. I still don’t like the side effects of those drugs since the Azithromycin makes me feel sick to my stomach most days and the Rifampin makes me so tired, but I’m working through those and I think they aren’t as strong as they were to begin with.

As for my progress, well, sometimes it’s hard for me to see because it’s slow and I get so very impatient because I want to have a “normal” life! However, when I saw the doctor a couple of weeks ago we discussed just how far I’ve come over the past year. I came home from Kansas City in late April last year and when he first met me I was a mess! I had to be wheeled to his office in a wheelchair - I was on oxygen - I had to sit in an exam room with the lights off with my sunglasses on - I had earplugs in and headphones on. Even with all of my precautions I still had a small seizure and I could barely speak to him. And now – WOW – what a difference a year makes! I can walk in under my own steam – I’m not hooked to oxygen – the lights can be on in the exam room – I don’t wear earplugs – and I’m the one who does most of the talking instead of M! Now, I still have to drug myself with Valium to handle ANY outing and after an outing I am worn out and my brain still deals with effects of being overstimulated. BUT, you can’t deny the progress when we compare me now to where I was last year. My doctor had honestly thought I wasn’t going to get much better since I’d already been on IVs for 10 months. He is happy to admit he was wrong now! I must say that every treatment decision that has lead to progress was made after praying for God to lead us down the right path. I’m blessed with a doctor who believes in that as well. He knows that the most progress we’ve seen has been from treatment protocols that I’ve come to him with after praying for guidance!

Other praise worthy progress is that I’ve started getting back on the elliptical machine again. I don’t have any resistance set on it but it’s still a workout for me! I can’t tell you how good it felt the other day to be able to go for 20 minutes straight on it! I have to make sure my heart rate doesn’t go too high, but I monitor that and slow down when I need to do so. I have to build back the muscle mass that has just disappeared after spending so much time in the bed. It will take awhile, but the fact that I’m working on it is a big deal! Also, we’ve been able to get me out of the house at least once every 2 weeks which is a lot more than I had been able to do. We’re hoping to try for once a week as long as I continue to do well on the new medication. However, I still have big limitations. I can’t go anywhere that’s crowded, even if the space is small, too many people is too much motion and my brain gets overwhelmed. I am still very sound sensitive and some days are worse than others, so it depends on the day as to whether I think I can handle going into a store without earplugs. They are always right there in my pocket though, just in case!

A lot of what God’s been working on with me is not dealing with my illness, but rather with my spirit. He has been placing things on my heart to think about. I don’t know if He wants me to share particular messages with you all, I think He mainly wants me to acknowledge that we aren’t just working on my physical and mental state of being – we’re working on my spiritual state too. It’s a battle to be positive about what I’m going through. It’s a battle to force myself to see the progress instead of only focusing on the severe limitations I still deal with. It’s a battle to realize that in just a few weeks I will have been doing IV treatment for 2 solid years and I never thought it would take that long. These battles are all part of a larger war that is going on inside of me. A war that will bring me out of this illness not just as a healthier person but as a spiritually stronger person – more compassionate, more understanding, more giving, and more willing to follow Him down whatever roads He leads me down no matter where they may lead.

I watched a program that Beth Moore was on. She’s a Christian speaker, author, etc. and I love to hear her speak. She talked about the meaning of the Greek word "makarios" which means "blessed or blessing". She shared a definition that goes into greater detail and it was this:
"Biblically one is pronounced blessed when God is present and involved in his life. The hand of God is at work directing all his affairs for a divine purpose and thus in a sense such a person lives- Coram Deo (Latin), before the face of God."

I have said this before, but it bears repeating – at least in my life – we get the definition of “blessed” mixed up these days. We think a person is blessed when good things happen to them. We often think of “blessings” as material things and possessions – but we are SO WRONG! We think to be “blessed” is to live a life with no problems and it's just the opposite of that really because in a life without problems we wouldn't have the same need for God to be so present in our lives! To be blessed is to have God working directly in our lives and in my case, well, He has used these hard times to bless me with His presence! Of course I am human so there are days that I cry for the life that I wish I had - one filled with children, or just one where I could drive a car or go into public places without worrying about how noise will hit me or if I will have a seizure. BUT on most days I know that this life is the only way I could have ever come to know my Lord and Savior as I have. So, what I have gained through these illnesses, I know for a fact to be far greater than what I may have lost. God has been working on me for a long time, but it's through this fire that He's been able to accomplish the most - and I still have a long way to go!

For those of you who started reading this when I started it a little over 2 years ago – thank you for sticking with me and thank you for your continual prayers! They are working…they are working so very much! I may not write as often, but it’s because I’m preparing myself for LIFE OUTSIDE OF LYME!

"Have mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will take refuge in the shadow of your wings until the disaster has passed." Psalm 57:1 (NIV)

"But I will sing of your strength, in the morning I will sing of your love; for you are my fortress, my refuge in times of trouble. O my Strength, I sing praise to you; you, O God, are my fortress, my loving God." Psalm 59:16-17 (NIV)

OH - I'm attaching a link to a song if you'd like to listen. The song is really good, but what makes it even better to me is that a friend shared with me that it was written by a woman who was battling Lyme Disease. It means even more to me now :)




Much love-
K