I stole this title and kind of the basis for this post from a friend of mine. I didn't realize it had been so long since I had written an update about whats been going on. It's my same excuse as always, things have been crazy. I long for the day when things are no longer crazy. Until then, I guess I am learning, as so many others are to live my life in spite of Lyme, in spite of the pain, in spite of being tired, in spite of having no job, in spite of being a financial wreck...The past two months or so have been really rough on me physically. My"symptoms", if that's what you want to call them have been really bad. I think I am approaching a week with out a seizure which is kind of big deal. I got to the point where I was having them daily, sometimes multiple times a day. I had my worst seizure ever just recently. I have had the most awful acne problem I have ever had in my life. I am almost 35 years old and feel like a junior high girl again. I am in need of nap almost daily but I can't seem to find the time. My brain function is starting to go again and I struggle to spell simple words or remember something for even 5 minutes. Then there is the pain. Pain of all types, in all places, daily, hourly, almost every moment. This has all been taking a toll on my emotionally. I have had some dark days and really had to fight to pull myself out of them.
My kids are still struggling as well. The drastic improvement I was hoping for has not happened yet. Still we go on. Then just the other day, I found out that my dad had been bit by a tick while staying in Illinois. The tick was engorged and the bite was a little red. I sent my parents to the doctor right away. Of course the doctor told them they had nothing to worry about but they got him to give them two weeks of doxycycline anyways. Two weeks is not enough, but at least its a start. Three days later, the area around the bite was a swollen, red, and warm to the touch. Looks like one of the many Lyme rashes out there. Could we really be going through this again? At least we caught it early and I am praying my dad develops no symptoms from this. In the meantime another mom I know, in the same area in Illinois, daughter was just bit. It breaks my heart to think of someone having to go through this nightmare. I can't help but be extra concerned about my families trip back there next week. If any of us get bit, I am not sure I could it handle it.
With that all being said, some recent blood did show a significant improvement in my Cd-57. That leads me to believe Hansa was right, and my biggest issue currently may be more of the viruses or maybe the co-infections instead of the Lyme itself. I am definitely grateful for the improvement even if I don't feel better yet.
I have come to realize through all I have been facing and what a friend has been going through that we are doing are best to live our lives in spite of Lyme. Everyday when I get up and take my kids to school, when I do team mom things for my daughters All Star team, when I wash dishes, go shopping, pretty much go any where or do anything I am choosing to live my life in spite of my disease. If I did what I physically and emotionally felt like doing everyday...I would not get out of bed, I wouldn't smile and tell people I was okay, I wouldn't give my life much effort at all. But I realized I am making a choice on a regular basis to push through the pain, to push through the tired, to push through all of the negative things and live my life to best of my ability. For once I am realizing that I need to give myself a little credit. The house is not always clean, I don't always remember to show up and help in my daughters class, I don't get to work out like I want but I am not allowing myself to give up. Though this may not be the life I dreamed of as a little girl, it is MY life and I am lucky to be living it. I have been blessed in more ways than I can say. I still struggle with the thought that this may be as good as it gets. Will I ever be functioning at close to 100% ? I don't know. Instead of waiting for that time to come, if it ever does, I will choose to live my life in spite of...
As always, thank you to my friends and family for all of your support. Thank you especially to Caity and Joni for the inspiration. Caity you are a shining example of living your life in spite of Lyme. I love you both and am so thankful that if I have to go down this road, that I can down it with you.
