The Good, the Bad, the Beautiful, and the Ugly: Update 8/19/23

To console those who mourn in Zion, To give them beauty for ashes, The oil of joy for mourning, The garment of praise for the spirit of heaviness; That they may be called trees of righteousness, The planting of the Lord, that He may be glorified. ~Isaiah 61:3~

It has been a hot minute since my last post, mainly because I was trying to soak up any bit of freedom I could from not having my central line.

The Good:

Many things have transpired over the last four months. After I got my port out, I was determined to begin moving my body again. I tried to take it slow and work up to things. One way I did this was I started going to the YMCA pool with my mom. Our first trip I was so nervous to get my port area wet, but I told God I was doing it afraid. We stayed in for about ten minutes. I was so exhausted, and I broke out in a full body rash from the pool chemicals. Now anytime I go to the Y pool I have to pre-dose with Benadryl to take away some of the rash. I worked up to being able to be in the pool for thirty minutes! It’s a great way to move my joints without impact.

Also, I started walking. Mom and I walked to the stop sign on our street. It was painful, really hurt my hips, but again I was determined. Eventually, I worked up to walking around the block between 1-2 miles almost daily!!! This was huge for me. I got to move my body, be outside, and eventually I think it was good for my joints to some extent. Walking does hurt my hips and my knees, but I was doing it! It felt glorious.

Over the summer I have been able to attend many events including birthdays of loved ones,

a baby shower for my cousin, celebrate July 4th with family,

visit my nieces in Virginia to watch them in a play, visit my younger brother and his family, have Rebe Day with Nikki, Rebe’s mom, and friends to celebrate and honor my precious friend Rebe,

take part in a game day with my E-group, volunteer in the community for Love Week with my E-group,

attend and visit with friends at my 20th high school reunion,

spend time with my nieces and nephews, go to a women’s meeting at church, catch up with some friends, try introducing new meals into my diet, completed a Bible Study with a couple friends remotely,

and even started working to help pay for medications and such! I work very very part time teaching English to students around the world. I started out slow and increased my hours, but I found it was too much for my body, so I reduced my hours to be more manageable and more gentle to my body. I have been working hard on materials and props for my classes.

I have also been treating all summer still, but the protocols were much lighter and somewhat gentler. They still made me sick and not feel well, but it was much more tolerable than IV.

The Bad:

Although, I have tried to soak up every part of summer and the people and things within it, I noticed my health beginning to decline. I had an episode for a couple days that left me curled up in a ball with pain and sickness and fear. I felt much like I did in the beginning, and it freaked me out. I was worried I was regressing, relapsing even. As time went on, I started to be in more and more pain, unable to do things, difficulty recovering from any activity I did do. I even started to walk less and stretch less. Felt like the walls were closing in and it was happening all over again.

The Beautiful:

I was able to be with a dear friend of mine for her bachelorette, getting ready for the wedding, and her wedding. It was such an honor to not only attend but be there with her in those memorable times. It was a lovely wedding, even when the rain came pouring down on us. I got to catch up with a couple of old friends, laugh, cry, and enjoy time with the beautiful bride.

The ugly:

Like I said my health was rapidly declining and I was pretty worried what that meant. I had a phone appointment with my Specialist, and he confirmed my fears… I am in full relapse. He told me I would never go back fully to how bad it was at the beginning. I tried to take in all that he said, but it felt heavy. I have some not-so-great results for blood work. One test is triple off the chart to the highest possible number. The doctor said he hadn’t seen these numbers in his patients. I knew we were going to eventually begin retreating aggressively, to be proactive against a relapse, but instead now we are fighting full force to aggressively attack Lyme once more. Many have asked what this looks like. I am not going back to IV, we will treat orally. I just completed the first week of the protocol, which has been pretty rough. I have been herxing like crazy! (Herxing is the die off of the bacteria, makes you hurt and sick.) I have spent many hours curled up in a ball in the bed this week. I have had to reduce my teaching hours even more and am struggling to get through the tiny amount of time I spend teaching. I have completely stopped all walking, but want to try to keep stretching, although it’s not been possible the first week of treatment. I hope I can start walking again in the next couple of months. I am choosing to trust God with my health and my heart as we proceed with aggressive treatment.

With all that said, please be praying for me. Pray that I can withstand the treatment and that it is knocking out Lyme. Pray that the pain and herxing subsides. Please pray that during the off weeks I can recover well. Also, be praying for my heart and mind, as this is very trying ,a lot to process , and go through.

Thank you so much for your love and support!