You might have noticed I changed the title and description of my blog. It has been something I have been thinking about for a little while and now just seemed like a perfect time. That doesn't mean that the content of my blog is really going to change. I just think it is important that I help myself break the my identity as only a lymie. Lyme disease is something I am I will probably think about everyday for the rest of my life. As long as this disease is active it will always be at the forefront of my mind. I just need to remind myself that I am not just a lymie though. I was a daughter, friend, wife, mom, fire inspector, etc...all before I could identify myself as a lymie. Because lyme affects every part of my life it's virtually impossible to separate it all. I hope you will still keep up with my journey.
The title of my blog isn't the only change that I have going on. After seeing my doc today it looks like some more changes are in my future.I updated my doc about my appointments with my llnd and the new cardiologist. He wasn't really happy about my new heart medicine. He feels that any of the heart meds are just a band aid to the the problem. I would have to agree but no one has given me a better solution to my heart problems. I still don't know the cause of my heart issues. It may be lyme or one of the co-infections or something else. At this point we just don't know and may never know. At this time I am not going to stop the new medication but I am going to try a form of meditation and see if it helps. Quite a while ago, in the midst of my heart trouble, I found something called the Institute of Heart Math. I wouldn't know how to explain it but I would say look it up. Anyways, my doc brought it up to me and explained a little about the science behind this meditation practice of heart centered breathing and focusing on something positive, something that makes me happy. Basically this practice is supposed to be able to change the way my heart is functioning. It certainly can't hurt. I am hoping to find my heart monitor so I can better track my heart rate and hopefully I will be able to see a noticeable difference.
Next we discussed the fact that I don't really feel like I have made much improvement in the past few months. We discussed my llnd's opinion on my need for detox. I told the doc that I am getting a sauna( should be here tomorrow YEAH!). He was very excited for me and I have heard from a few people that it made a big difference in how they felt so I am praying this will get me headed in the right direction. The doc put me on selenium, vit a, and zinc which all should be helpful. Then came the biggest change...we have decided to finish this week of IV antibiotics and that stop all antibiotics for 2 months. The plan is to go 2 months off, 2 months on, 2 months off, 2 months off and be done. I am so excited and nervous at the same time. He also has me starting diflucan during the months off. The way the doc explained it was the diflucan will paralyze the bugs and keep them from dumping toxins when I start the meds back up. I have to talk to some other lymies and see if they have done the diflucan and how it has worked. I didn't get to read like normal during my IV today because I ended up talking to two lymies. One lady I have seen before. She is has/is really sick but her lyme is actually in remission. She is just dealing with a bunch of other stuff from being sick so long. Then a new lymie that I have met on the computer came in. She just started her IV this week. It was nice to connect in person. the sad thing was the nurse told me 3 new patients start IV treatment for lyme next week. This disease is everywhere and can affect anybody. Just blows my mind. Anyways, I am excited to see how the next month or two goes. The change is perfect timing with the sauna coming in. Now I have more freedom to use it. I am going to try to get back to the gym also and just do whatever I can to help this detox process along. I will say I have been very consistent with my protein shake and I feel like I am starting to cut some of the other sugar out. That is a huge accomplishment for me. Yeah for that too.
The doctor did write a new note for work. The new note however says that there are going to be no changes to my work schedule for at least 3 months. I have to take this new note and meet with HR and the Chief tomorrow to renegotiate. I know I will be super nervous but I am really feeling like it is out of my hands. Essentially, even if I can increase how much I am working at the end of 3 months I won't be full time/full duty with no restrictions for at least 8 months. That my just be a deal breaker with the City. It is what it is and I am actually feeling comfortable with however things go. I'll try to update after my meeting tomorrow, so stay tuned. There may be bigger changes yet to come.
I wanted to end by sharing how blessed I am. Through this entire ordeal I have been blessed. I can look back at my darkest moments and see that I was blessed even when it didn't seem like it at the moment. I have started reading a book called Life Interrupted that has been a huge help. I just feel like God has been working behind the scenes and I am starting to get a glimpse of what may be coming. It certainly makes me excited. I am ready for some big changes. I still have my ups and downs. I still have some moments where I feel like this situation is hopeless but they seem to be brief and I just am starting to get excited about what the future holds. Can't wait to share more of this journey in the coming weeks. Keep the prayers coming. I can still use help in paying for medical bills. How sad that I would say for my birthday I would like help paying for my medical bills but it is true. You know where the donate button is. Here's to hoping you all are having a great summer and that life is treating you good.