how we're doing

We're doing okay. Not great, not awful.

Some days are physically miserable: we feel frustrated, discouraged, isolated, and our hearts ache.

Some days are difficult, but bearable: we're able to smile and laugh and make the most of our limited energy.

And here and there, we are blessed by a "good" day: neither of us is particularly miserable. I can sit up for longer amounts of time and walk hobble very short distances. Spencer's headache isn't so severe. Oh, how we savor and cherish those days! :)

Please pray for us. That we would be content in ALL circumstances and that we would trust God 100% with this situation, no matter how confusing, overwhelming, and painful it is. I've been struggling a lot with being content lately ... It's easy for me to become resentful and sad as I watch others seemingly move on with their lives while Spencer and I struggle so much, having to set aside our plans and goals and just wait. I really need to work more at being patient and content with our current situation.

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11

...be content with what you have, because God has said, "Never will I leave you; never will I forsake you. - Hebrews 13:5

Big news: We are so thankful that God provided Spencer with a job! Up until the beginning of August, he wasn't supposed to work because his hand was still healing from surgery, but right around the time that he was cleared to begin working, this job became available to him. It's a temporary position, which is perfect for our situation. Around the time the job ends, I'll hopefully be starting more aggressive treatment, so it will be good to have him more available again, as we're not sure how rough things might get. God is so good and gracious to provide for us in this way!

So...about treatment...

Spencer completed the first cycle of his aggressive oral antibiotic treatment and is nearing the end of the second cycle. This week he added Flagyl to the mix. Please pray for him, as he is working long hours at his job and we're really hoping the Flagyl won't make him too miserable this week. He's getting pretty worn down, but is hanging in there so far. Next week, he is on a "drug holiday" and then we'll see where Dr. J wants him to go from there.

During the first cycle of treatment, he had some pretty rough days. He was miserable, his headaches extra severe, and he could barely stay awake, he was so lethargic and exhausted. Dr. J's threat of a herx definitely became reality. It was so sad to see my beloved husband so run down and miserable.

This time around, he has had some bad days, but overall, he has noticed a lessening of the intensity of his headaches and isn't quite as fatigued. This is so encouraging. Please pray that this improvement will last and that we will see further progress. He flies to the east coast next week to see Dr. J for his follow up appointment. We really wish I could go with him, but travel is incredibly taxing on me and those plane tickets aren't cheap!

I had a phone appointment with Dr. J 3 weeks ago and it went well. I hadn't seen much improvement with the low dosage of Lyrica that he originally prescribed (I tend to be pretty sensitive to medications & we wanted to start out with a low dose). He increased the Lyrica dosage and prescribed two more medications (Lamictal and Klonopin) when I described the symptoms I was continuing to struggle with (primarily neurological stuff).

The increase in Lyrica dosage and added medications have seemed to help, which is very encouraging. My sleep quality, while still not great, is improved and my pain is definitely less severe and more bearable. A huge burden has been relieved with this decrease in pain severity. What a blessing! While far from well and struggling a good deal, I'm definitely savoring these days of lessened symptom severity and am doing all I can to build up and strengthen my body.

It is a wee bit scary to remember that my symptoms aren't really gone, they're just being suppressed and controlled by these medications. The cause of my symptoms is still there...the Lyme spirochetes and co-infection critters are still hanging out in my body and will continue to do damage without treatment. I'm eager to start more aggressive treatment, but also dreading it, as I know things will get worse before they truly get better.

Dr. J wanted me to check in with him this week and if he thinks I'm stabilized enough (we're waiting to hear back from him on that), we'll set up a followup appointment to get the ball rolling with more aggressive treatment. When I last spoke with him, he reaffirmed that he wants to start IV antibiotics, so we've been working to educate ourselves more about our IV treatment options (if any of you reading this have some tips on IV logistics, we'd love to hear them! :)

Please pray that I'll continue to improve and stabilize so that I can start treatment sooner than later. I have endured this illness for a long time and I am SO ready to start aggressive treatment!