Walking without fainting...

So far I’ve been tolerating the Gentamicin fairly well although getting back in the routine of twice daily treatments has been difficult. I had been questioning whether or not we made the right decision to go back on the IV antibiotics. Don’t you hate when you make a decision based on rational facts and then turn around and second guess yourself once you act on your decision? I usually don’t do that but the IV drugs make me question just about everything I think, say, or do. I know that M and I made this decision because we both felt God leading us to resume treatment so I hated feeling like I wasn’t trusting our decision. I think those thoughts were also mixed up with being scared of going back on treatment. Treatment is a catch 22 basically. When I stopped many of my symptoms returned or got worse. However, going back on antibiotics can also exacerbate symptoms. Then I also have to worry about side effects of the drugs as well as the ever dreaded “herx” reaction. For those who haven’t read much of this a Herxheimer reaction occurs when the antibiotics kill off a lot of bacteria at once which creates a build up of toxins in the body. Many people think a herx can only manifest physically causing headaches, muscle and joint pain, fevers, etc. When I was in Kansas City I found that it’s possible to also have mental or emotional herx reactions. These can cause of severe mood swings, horrible depression, anxiety, confusion, and even rage. Basically it doesn’t matter if you’re on treatment and killing bacteria or off treatment and dealing with recurring symptoms because all in all Lyme, Bartonella, Babesia and other co-infections suck the life out of you.

There is good news to report and I’m so happy about that! Monday we had to go see the doctor and I felt like I needed to try to push myself to “be normal” by not wearing ear plugs or headphones. I brought them along just in case I needed them though. I also told M to park in the parking deck rather than use the hospital valet service because I wanted to try walking instead of using a wheelchair. I didn’t even feel very anxious about going. I wasn’t pushing M to leave 20 minutes early nor was I pacing around making sure I had everything I needed. I felt that was God giving me the courage to try and venture into the outside world. For the first time in over 10 months I walked outside without ear plugs and headphones. The noises were loud but I wasn’t ready to scream or have a seizure. I walked into the hospital and didn’t jump at the sound of people’s voices or even the beeps of the elevators. Notice I keep writing, “I walked” because that in itself was a major deal! We entered the doctor’s office and his nurse didn’t even recognize me! I still had on sunglasses to deal with the lights but for the first time the doctor and his staff saw me without a wheelchair, without headphones, and even without an oxygen tank! I was simply giddy about my progress! I now realize how bad things have been when going to the doctor’s office without the aid of a wheelchair, oxygen, or noise cancelling headphones makes me so excited! After the appointment M and I were smiling from ear to ear because these were such huge steps for me to take.

I knew God was responsible for showing me such progress. I believe that even though I couldn’t tolerate the Vancomycin, it did kill off some bacteria and the small amount of Gentamicin in my system had helped as well. I started thinking about the possibility of having some kind of life again. I dreamed of getting out of this house and going places. M and I felt like we were seeing a small bit of light at the end of this long tunnel! That’s why the herx I started having on Wednesday brought me down so low. I had just seen progress and 48 hours later I was feeling so sick and unable to even control my emotions. I was crying and asking M repeatedly if I could just quit treatment. It’s so hard to wrap your brain around the concept of how making progress in killing off bacteria can make you feel so horrible. The emotional side of a herx is the worst part for me. I can handle feeling like crap but being unable to stop irrational thoughts, anxiety or anger is extremely frustrating for me and I know it has to be so very hard on M! By Thursday I was very depressed. I wanted to feel like leaving the house again. I wanted to catch a glimpse of “real life” again. I didn’t want to go back into the hole so to speak.

Then yesterday I realized something. God didn’t allow me to have such a good experience on Monday just to cruelly strip it away from me a couple of days later. I believe He showed me progress on Monday so that I could see what I was fighting so hard for! Perhaps He knew I needed to make such strides in order to handle the next 2 to 3 months of IVs. I’ve been on IVs for 14 months now and I want to be off of them so much! I am simply dying to get this PICC line out of my arm as well! But I have to hold on and ride out the rest of this journey if I’m going to be able to function in the real world again. God is with me and I know He will pull me through the next few months. The doctor said I should stay on Gentamicin for as long as we see progress. I’ll take a break for a day or two after a few weeks and see how I feel then. I pray I’m able to do even more by then. Although being outside without headphones was a huge step, I want to be able to be out in the world and not be aware of every day noises. I made it through without headphones but I was very aware of every noise I head. God could be showing me that His plan for me might possibly include me feeling better than I ever have before. I pray that is the case.

So, I write this as my IV bag drips away. I write this as I try to control my thoughts and cling to hope. I write this as I continue to be a huge “work in progress”. I write this as I feel such thankfulness for any and all improvements. I write this in awe of how God works in this world and how much He is working in me. This process has taught me so many things but one of the main things has been to never take anything for granted. I pray that as I improve and after I’m done with treatment that I don’t forget how lucky I am. I want to feel fortunate when I’m able to walk instead of using a wheelchair or when I’m able to hear everyday sounds and not immediately have a seizure. I want to remember what it was like to be stripped of everything so that I fully appreciate whatever I am able to do when I stop treatment. That’s a hard thing to do because I know just how easy it is to take things for granted. I know because even in my situation I am so human and don’t always thank God for what I do have. I may still be going through the hardest time of my life but God has still blessed me beyond measure! He has given me a loving family and good friends who pray for me every day. Not to mention I think I have the best husband on earth and feel extremely fortunate to be able to spend my life with him. We both feel as though we have gotten a good lesson in the meaning of the marriage vow to love each other “in sickness and in health”! And finally, I’m thankful for you. I am thankful for anyone who takes the time to read my rambling thoughts, who prays for me, and who lets me know they are with me in spirit as I go through all of this. Thank you from the bottom of my heart!

Finally, one of the verses that I love so much and cling to throughout all of this:

“Those who wait for the Lord shall renew their strength, they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint.” Isaiah 40:31 (NRSV)

And I did just that on Monday – I walked and I did not faint. That, my friends, is no small miracle and I will not take it for granted!

Much love-
K