Jabber

I’ve had several people reach out to me after reading my blog to send their condolences and I so very much appreciate it. Although, I want to make it very clear that I am, in no way, writing to get attention for my illness.

During this strenuous journey, I’ve found that writing is really therapeutic. My initial reason for starting a blog was to document my disease from beginning to end for my own personal records. I later decided to share my blog to the public to keep everyone informed as well as to become a kindred spirit to others. 

Writing is not only therapeutic, it’s also a skill that I can STILL perform that Lyme has YET to hijack from me! My brain/mind are slacking. I feel very uneducated much too often. I struggle choosing my words when I’m talking to someone. People probably think I’m a little nuts. Or legitimately stupid. I’m a note taker now. Notes on notes on notes ya’ll! If I’m not taking notes, chances are, I’m not going to remember a darn thing. Brain fog, you may go away now!

I haven’t missed any appointments yet (probably because I’m writing all that shit down in my fancy new planner) BUT I am forgetting where I park my car! SO embarrassing! Has that ever happened to you? Probably not, because you’re not 85 years old and struggling from Alzheimer’s Disease. Well… let me tell you something - I’m reeeeeal close to getting my car painted metallic pink so that I NEVER have to roam a parking lot again! So many stares, so many pointed fingers and laughs. 

I met my parents for lunch today after going to Victoria’s Secret to try on sports bras (50% off - go get you some!). I felt like poop. You know how hospitals make you rate your pain on a 1-10 scale? Why don’t they use a poop scale instead? I’m serious. Do you feel like runny diarrhea, solid stool, gassy, etc. - that would be so much easier, I think. I always get so flustered when they make me choose a number. I’m super OCD and REALLY dislike odd numbers so it’s not like I would ever choose one. I only have 2, 4, 6, 8 and 10 as my options… and if I’m in the hospital, more than likely I’m feeling like runny diarrhea or else I’d be at home taking care of myself, you know? 

Back to what I was saying though - I went back to my dressing room with probably 15 different sports bras to try on. They were really cute and I was really excited considering the sports bras I’m currently wearing are ones I wore when I was in high school… Weird, I know. I took my shirt off and paused - standing in front of the mirror underneath the bright dressing room light. My tummy is covered with tinny little bruises from all the injections I give myself each day. The stomach muscles that once showed no longer appear. My port is accessed right now so the tubing was hanging pathetically over my right boob. I looked very pale. Whose body is this This isn’t me. I am not this person. I put my clothes back on and left the store. 

I met my parents for lunch. At this point I was frustrated and drained of all energy for the rest of the day. We ate then my mom drove me home. I had a moment on the car ride home. I think I’m entitled to have my mini-moments here and there - as long as they don’t last very long and they aren’t in front of my girls. I was angry that I was tired at 1:00 in the afternoon. I was mad at how limited my activity is currently. I’m frustrated with myself as a mother right now. I’m not 100% present and it sucks. I feel disengaged and when I give the girls my time and energy, it’s never enough. They deserve so much more. I hate telling them I’m too tired or too sick and I’m sure they hate hearing it. I’m mad there’s no finish line with this disease. I have no countdown. I don’t know if/when I’ll rid myself of Lyme, Babesia, Bartonella and Rocky. 

I got asked to go to a friend’s work holiday party Friday night. I want to go but I’m also terrified. My birthday is in a few weeks and my family and friends want to celebrate. I have my work holiday party December 17th. According to the poop scale, when it comes to anxious, I’m at the runny diarrhea level. I’ve been a major recluse because I would be absolutely humiliated if I fainted or seized in public. My mom told me I need to get out if I feel up to it… My mom’s right 99% of the time - so I’m probably going to give it a shot. We shall see! A little party never killed nobody! Isn’t that a song? Maybe all these holiday/birthday festivities will bring me back to life a little! 

This picture was taken a year ago. Things are much different this year - my blonde hair being the biggest change!