Where do I begin? There was definitely some ups and downs during last week’s breaks. Mostly downs, unfortunately. I must admit this has been one of the toughest breaks that I have been going through, if not the toughest out of the entire three years of treatment.
As I sat here staring at my laptop for quite some time, I noticed my battery was just draining from it, yet there were no words on my screen. I couldn’t for the life of me remember this week, other than it being completely miserable. I haven’t had the best time, but I remember last Saturday going out to dinner with friends. Even though I wasn’t doing great, it was nice to see my friends and take my mind off of “me” for while.
The following day, I don’t know if I was getting sicker, or making up for going out to dinner, but I was pretty bad. Dave wasn’t home and off to a racing event, so I ended up going down the road to a friend’s to watch the football game. That is the sort of thing I like. Sitting on a comfy couch. LOL
I do remember everyone going nuts about the “blood moon”. I must have missed the memo that it was on Sunday night, as I went outside on Saturday night during the time it was suppose to be happening, and thought to myself, “What the f*ck is the big deal about this?” It was just a bright moon. That would be because I had Lyme brain and was off a day. I did end up watching it on Sunday though… then I understood what everyone was talking about. LOL. Ohhhh Kimmiecakes.
For the rest of this week, I had to go back and re-read old emails and Facebook messages. My mind is mush. I have had to email my friend and ask if I had ever responded, probably repeating things over and over.
I had been holding onto the thought that I was having a Babesia herx for awhile. Exhaustion (way beyond my usual exhaustion), fevers ranging from the 99’s to 102’s, chest pain, flu-like pain, abdomen tenderness, sweaty. Just out of it. But for that long? It just didn’t make sense to me.
By Tuesday, I couldn’t take it anymore. For the past few days I felt it creeping up, but woke up with a horrid sore throat, and could see my lymph nodes sticking out of my neck. My throat was closed. WAHHHHHH…..
I have heard that mono is going around, and I have never had it before. I have had EBV that can easily be reactivated with a compromised immune system, and I have tested out a sip of a friend’s gluten free drink last time I saw her, who was recently diagnosed. Hmmm.. I ended up emailing Dr S about my concerns, and he ordered up several tests, that I am still waiting for. He told me the send out tests could take a week or so. Tick tock… and so I wait.
Dave is convinced it is a Mycoplasma flare up. I totally forgot to mention that to Dr S, so Dave told me to leave a message with the clinic. Since Myco is treated with antibiotics, it is also an easier idea to speak directly with the clinic instead, as they can tell me what they want me to do for treatment if that is the case.
The flu has also been suggested to me but I haven’t had any stuffy nose or anything of that sorts. A regular lingering cold with no stuffy nose? I don’t know. Medical mystery.
On Wednesday, I figured, why not.. I already feel yucky, so I might as well start my “shortened” protocol. I still did my Flagy and bomb days, I am just trying to hoard my Daraprims at the moment. Within an hour of taking my first day of pills, I was dry heaving at work (I was told it was okay, as long as I didn’t ralph on the keyboard haha), could barely walk, and felt as high as a kite. My good old friend Bactrim was probably the culprit, and it also leaves a disgusting taste in my mouth and leaves it feeling like sandpaper, and my eyes dry completely out. I swear I can hear myself blinking whenever I take it.
Friday I went in for more blood work. It is funny how within a few days your blood work can completely change and be even more out of whack. Nothing was really concerning at all on Tuesday’s blood work. Friday’s on the other hand, there was a lot of different things off. I was bummed. Chinese food is usually my bomb day savior. I was incredibly nauseated, and kept a trash can handy near me at all times. Maybe it was my bomb day savior and things would have been much much worse.
I ended up sleeping on the couch that night. I was tossing and turning, couldn’t breathe, and felt as if my chest, head and stomach could possibly explode. I just wanted to sleep. It was one of the few times that I felt like crying being sick.
Saturday wasn’t a much day. I had so much work to do, I am starting to get really anxious about it actually, since the quarter just ended and I have a lot to do. I will have to do my best and try to just focus this week, no matter how I feel. I did end up getting a decent amount of work done, but I was pretty much moving at the speed of molasses. I was so foggy, I felt like a bus hit me, and my chest hurt. The nausea still hadn’t gone away, and every single thing smelled disgusting to me, even if it was all in my head.
By the time I got home, my chest pain (I would describe it as my heart itself was hurting) was so bad, and the air hunger, and pain trying to get a breath in was so bad that I contemplated having Dave take me to the emergency room. I am not going to lie, I was a little scared.
I remembered that the most important thing was to keep calm and try to not panic, as that would not help at all. Secondly, I remembered…. SH*T! I HAVE LYME! So.. the ER is quite a joke. Unless I am bleeding to death or have no knowledge that someone is taking me to the ER, then I would really prefer not to go. All they would probably do is be dinks, call me a drug addict, or give me a lactated ringer… which honestly I wouldn’t mind. I love those ringers.
I sucked it up. I noticed that laying on my side seemed to help, and I melted into the couch and slept for hours.
Dave left for awhile, which was okay, so I didn’t feel bad about sleeping. By the time I had woke up, I had soup ready for me, a brand new vacuum and of course he vacuumed, and the laundry was done. He gets a big gold star.
It has been days since I have washed my hair. Dave commented to me this morning, “You look so much better with your hair up since you never wash your hair!”. Yup. So I guess I need to wear my hair up more often. Spaghetti is never a good look on anyone.
He has helped push me this week to try to do what I could. He knows I am having a terrible time, but he has gotten me on the bike one night, and today, he had me go for a ride with him and the dogs to the dump, and parked near the bakery to pick out a gluten free treat while he went grocery shopping. He knew shopping would be too much for me today, but he at least got me out of the house.
Sometimes, I am not going to lie, it makes me want to punch him in the face, but all in all, I am grateful. I have to do things because there isn’t a choice, like go to work although just part time, but getting pushed a little harder even though I get angry, I feel better once I am done. That I can do it. I also have to keep in mind all the things he does to help me… like my soup, cleaning and laundry this week, and hundreds of other things he does, so I really should listen to him once in awhile. 🙂
I just started week two of treatment. I figured why not. I don’t have any sort of game plan yet, as I don’t have any blood work back. Other than Dave getting me out of the house, I haven’t been very productive. He is making me dinner tonight, because he is awesome, and I am trying to rest and take in a lot of fluids. I do feel better today, as my chest pain is nowhere near as bad as it was. Breathing is nice! 🙂
So… I really don’t know what is going on. I just know that something isn’t right. Bacterial or virus, I am not sure. This isn’t a herx. It is discouraging, as just a few weeks ago I was describing moments of blue skies, doing some cleaning in the mornings, feeling much more “normal” than I have in a very long time. That I was on the right track. At least I know my body enough to know that there is something else going on, and although it may linger longer than a healthy person, it will eventually go away. I will keep pushing, and hope that this coming week is better. That is about all I can do! I will figure it out. I always do. Just a little bump in the road.