I've been diagnosed with Lyme Disease for six years now. Six years and 22 days to be exact. It has been an extremely long time where I felt so much fluster. I had my follow up on Tuesday and I thought it went pretty well. I felt we discussed the good (I'm herxing from the oral antibiotics), the bad (my favorite IV nurse is leaving) and the ugly (possible picc line with IV antibiotics in our future discussion in May). I left the office smiling and not overwhelmed. To my regiment was one new antibiotic and another new pharmaceutical which is supposed to help with my pain.
Let me be clear - this is NOT a pain medicine, but a medicine that helps many things - one of those things just happens to help with nerve pain. It comes with a point of pride for me that I refuse to take pharmaceutical products for pain. In the last six months, I may have taken a total of 3 Tylenol (for headache along wiht a fever so really it was more for fever reducing than anything else). Now before anyone gets in their high horse about Tylenol being bad for you - I don't have any other options. The best option would be ibuprofen, but I've developed an allergy - and eye swelling allergy. Some other things aren't options either so Tylenol it is.
I compare the new medicine to Neurontin. Let me be clear - it is NOT Neurontin. I've been on Neurontin before. But I compare it to Neurontin because Neurontin is an anti-epileptic medicine. The new medicine I believe also was initially used to treat epilepsy. Neurontin can also be used for pain management. In fact, when I was Neurontin over 7 years ago, it was to treat my headaches. We chose the new one over Neurontin because I've experienced the Neurontin daze. It doesn't make me fatigued, but it does create a fog where I feel that everyone else is going about 100 times faster than me and it makes me feel like I'm going slow as a turtle.
In any case, I left the office feeling confident about the new plan for the next 7 weeks and was only waiting on my notes to be emailed. Typically I take my notes with me, but my LLMD wanted to decide between two antibiotics and because the notes were so long he wanted to take the time to make sure they were right for my understanding. So I left, happy - content - confident.
This was on Tuesday. Fast forward to Thursday morning. Emails from my LLMD come password protected. This way I am the only one that knows the password to open up the notes. Unfortunately, I had forgotten the password. This was in some ways a blessing. I went to work and then to a Lyme Advocacy meeting and then home where I remembered my password for the notes. I opened them up and began to read. I'm reading and things are clicking from the appointment. Okay, Okay, Okay . I understand. And then I read in big capital letters THREE WEEKS. This caused my heart to figuratively skip a beat and stop. Do what? FLUSTERED AND OVERWHELMED I tell you!
Then I kept reading - and the "Do whats?" kept coming out of my mouth. My eyes got large and all the sudden I felt flustered and overwhelmed. So for the first time in about four years - I called my LLMD's office to ask for clarification about the notes. The person I needed (wanted) to talk to was busy with a patient and she offered to call me back when she could completely focus on my questions. Again, this was a blessing - I had time to read the notes fives times - and come up with a list of questions so I could stay on track when she called back. Typically my brain is trained enough to come up with my own data sheet for my pharmaceuticals, but this time - I was completely flustered and overwhelmed.
So she scanned in and emailed the chicken scratch from my LLMD. It helped, but yeah I'm still flustered and overwhelmed. I pulled up a word document - and began to create a table for the next 8 weeks. I still have work to do on it becaus I think I'm going to use an excel spreadsheet to help keep the words separated, but t his morning I woke - and looked at the list - and it took one whole sheet of paper for the morning medicines alone. Flustered, overwhelmed, exasperated.
Soon, I'll get myself together - and tell myself to kick it in gear, but seriously. Three new pharmaceuticals (one of which - might cause me allergic reactions because - well I didn't understand the pharmacist, but I know that I could very well get a rash all over my body because of my allergy to phenobarbital), along with all the old ones, plus 20 or so supplements - is overwhelming for anyone. Taking a deep breathe and if you made it to the end of this post. Bless you.