Check in and current treatments

Today, I'll give you an update on my current treatment and health status since the last entry I posted was a bit like a 5-year old temper tantrum on the inside working its way out. Honestly, I debated whether or not I should delete that last post but decided to leave this authentic part of my emotional experience raw and unedited. I'm committed to being real and attempting to be shameless in this vulnerability with the hopes it will accelerate my recovery and help someone down the road. 

The emotional toll on my relationship has been intense in the last few months, as our small nest egg is dwindling too quickly under the burden of medical expenses. My partner has been nothing short of a saint, stepping up quickly to bypass his summer holidays to teach, which thoroughly broke my heart. The burden of my illness often feels like it's too much for me to bear, until I see the impact on my beloved and am slightly ashamed of my self-absorption. I think the care-giver has the hardest role here. I wouldn't wish it on anyone and yet, circumstances propelled my beloved headlong into it and I was powerless to stop it. We know we need to stretch ourselves and get creative to make this whacky life work for us and we're committed to try.

My current treatment is fairly complex and it's notably working! I am getting better!! I keep a TBD Diary. It is a list of my specific symptoms and I check a box for each day that symptom is a problem, double check it for a day that notably impairs my abilities, and 3 checks to signify it debilitated me. The first several weeks, each symptom was checked every day to some degree. Now there are big gaps of empty boxes, and I honestly don't think I would have noticed myself getting better without this log, as the progress is incredibly slow and I am still undoubtedly disabled.

I'm very grateful for a conversation I had with my mother a few years ago when she told me that there is a trend to find doctors that are team players instead of patients relying on just one doctor to be the know-all, be-all (and let's face it, as much as some of them think otherwise, they really are just human.) I took that advice to heart and put together an amazing team that relates very well to each other and respects each others approach. None of them claim to have all the answers, they are open-minded, stay informed about my treatments, and so far, no one has stopped investigating my case resting on the laurels of a diagnosis. It's amazing and such a different experience than the last time I went through this in the 90's and early 00's.

The gemmotherapy, homeopathics and other natural medicines I'm taking seem to be improving the effectiveness of the pharmaceuticals and I think we have a spirochete-butt-kicking love connection. I also know that optimism can be dangerous with this messed up disease. I remember thinking I was getting better way back when, only to get struck down over and over - just when I'd get on my feet, another wave would hit and that went on for 7 years. This time around, call me cautiously optimistic and deeply, deeply grateful for my friends, family and the support I receive.

My eternal gratitude also goes out to the people who know to ask "Can I get you anything?" instead of asking "How are you feeling?" I've begun to really hate that question when it's asked in greeting. I know this is a way people show they care and I appreciate it, but it is a delicious relief to have the burden of the question removed sometimes.  

Finally, I think I have found the perfect therapist for myself at this time and am both anxious and excited about my next appointment. It was a total pleasure spending time with the guy during our first appointment. He is a grief specialist and musician and seems to be humorously liberal. Part of me is very excited to do this healing work and part of me is totally terrified of the abyss. Nevertheless, I shall leap into my healing with both feet, casting my fate to the wind, with a prayer for a sail.  Now, JUMP!!