No Man is an Island….Or?

IslandHere it is Saturday afternoon. I am having a difficult day today after a full week back at school. Barely, I made it out of bed about 10 a.m. I didn’t want to get up, but I was so sore all over in my muscles and joints that laying around wasn’t helping. Getting up didn’t help as much as I had hoped. My huge plan for day today includes a nice, steamy epsom salt bath. Ahhhh.

Dealing with alone time is something someone with Lyme has to deal with very quickly. I feel lucky that by nature, I am an introvert. I relish time alone. I am never bored. Seriously never, unless it is a really boring professional development or a meeting with no purpose, then, yes, boredom sets in. If only I was a good doodler! Otherwise, I can sit for hours, reading, writing, thinking, with no one about to interact with. Thus, I had an advantage starting on this unexpected journey with Lyme. I do get lonely sometimes, and of course, I do miss out on cool events due to poor health off and on. That is tough. But at least, as an introvert, I feel like I haven’t had as hard of a time seguing into spending lots of time alone.

Extroverts must have a much harder time. I mean, they access their energy by being with other people. Extroverts are social by nature and having Lyme puts a Huge Dent in social activities for sure. Lyme takes over minute details of one’s life no matter how hard we try to keep it at bay. For instance, we made plan with friends last weekend to meet up for dinner last Saturday night. Literally, Friday mid morning, I felt confident that I could make it to dinner the next day. I mean I had all Saturday to recoup, right? Best laid plans and Lyme comes along and laughs in my face! Saturday was no bueno. I had stomach issues all day long, including cramping and nausea. I tried some hopeful remedies, but no luck. We had to cancel and stay at home. Disappointed, and helpless to change the facts that I could not make it to dinner out, my husband and I stayed in and watched tv. This scenario is an all too familiar one at this point. After 18 months in treatment and before that, 4 years sick with no idea what was going on, I am still trying to accept that many times, I have to cancel plans. I hate to disappoint anyone, including myself and so I am still working on this hurdle.

Being sick and dealing with different symptoms day to day, hour to hour, I live more of an internal life, as do most Lyme sufferers I guess. But I especially feel for my fellows who deal with Lyme and who are extroverts.

Peace – B

The Cyborg

This is the nickname my husband has anointed me with now that I have my very own PICC line. Yes folks, step right up to see the show! I’m an official cyborg! My new little friend was inserted on Monday. Now, this is the first time I am doing IV antibiotics, and I hope it will be my last. I was anxious about the procedure but honestly, it wasn’t terrible. It took the doctor a whole 15 minutes to insert and stitch. Actually, most of the time I had no idea he was working on me. I felt the numbing shot, a tug here, a tug there and presto! Done. The doctor and nurses chatted while they worked and I kept thinking, come on doc, when are you going to get busy? Stop chatting and get this thing in my arm, for reals! Ha,ha and then he was done and gone. So the line is in my left arm since I’m mostly right-handed. The home nurse came yesterday. Now mind you, we live pretty far out of the city, in a double wide mobile home with, hmm, well we have six of our own dogs. Add in a few of my mom’s dogs(she lives on the same acre we own, so that makes 8 when the nurse showed up. Holy geez! Luckily, they all ran outside through the roof is door which I closed quickly behind them! Let’s just leave it at they had some great “yard time” yesterday. They were way more than ready to get back into the a/c when the nurse left. She is a small, petite lady and I really like her. I did my dose on my own today for the most part; my husband was very attentive at making sure there were no air bubbles in the line. I won’t bore you with the details of all the ins and outs of the pics….yet. Heading off to bed. The soreness and stiffness have had a hold of me for a few weeks now and today I have just been exhausted. I was still able to work in a few rounds of Candy Crush though so all in all, I feel like the day has been a Victory!   Peace, munchkins. -N

Medication anyone?

I will begin my 14th year of teaching this fall. Very cool. So, I am on summer break! Whoo hoo! And while, yes, teachers do work during break, it is still nice to have more freedom in my schedule. My Lyme treatment is still going strong, so having time to rest as needed is great. I have been on antibiotics since March 2013. My doctor changes my meds about every 2 months. Lyme bacteria, Borrelia burgdorferi, is one of the most complex and intelligent of the bacteria world. It can hide in the body when it is attacked by the immune system and or antibiotics. It can adapt to the antibiotics as well. Thus, the changing of the meds often. I should be starting a new round of antibiotics here soon. With the fatigue letting up a bit as well as the nausea, a few weeks ago my doctor was hopeful that I could maybe take a break from the antibiotics and allow my immune system to step up and do some work, but alas, no go. After bloodwork revealed that my CD57 cell count is still extremely low, I have to continue on meds. Lazy immune system! LOL  

And while there is much controversy in how Lyme disease should be treated, etc., I don’t really care about the critics. I found my LLMD on MY OWN. I went to her out of desperation and because I was finally diagnosed with Chronic Fatigue Syndrome after seeing at least 5 different doctors and specialty doctors no less. I chose her because she has an awesome reputation with CFS patients. The first thing she did, based on my symptoms, is test me for Lyme disease. No other doctor, including an Infectious Disease doctor, had even mentioned Lyme disease, and I tested full blown CDC positive after almost 4 years of trying to get an answer to my illnesses. So, yeah, I don’t care about the naysayers. They don’t carry much credit with me at all. Only the person who has basically saved me from worse is my hero! I will do whatever she tells me to as far as treatment goes.

Hope all is well in your world, hobbits! -B