Feb Part 2 – Notes from Dr J

Sunday was the last day of my break before starting my short but aggressive Babesia treatment. I worked in the morning, getting as much done as I possibly could. My last round of Coartem was an epic fail for me. The very first day, I spent hours on the couch, completely incoherent. I couldn’t move, my eyes were blurred. It was an extremely rough part of my treatment last month. So I knew there was a very good possibility I wouldn’t be working on Monday. Remaining positive that it would be easier on me, I was still being realistic in making preparations to stay at home. 


It was Superbowl Sunday. I didn’t really know who to root for, being a New Englander and the Pats didn’t make it this year. Dave and I decided to go with the Seahawks. I made some snacks with one goal in mind. To stuff my face. Back in the day, since I never really watched the games, we would always go to friends and I would have a little too much fun partying. I was THAT girl. You know, the one person at the party that is entirely intoxicated, making an ass out of herself. That girl. LOL. Oh how things have changed. I am okay with that change though. 😉 


Before the game, I went on a mini cleaning spree, which was much needed since I haven’t done much in the past few weeks. After a short amount of time, my body said when. At least the rest of the night didn’t really matter, because I would just be watching the game with Dace. Jeesh… two days in a row date night? I think he only stayed inside to eat the sweet and sour meatballs I made, but I will take it.  


Monday was the first day of starting my Coartem protocol. It is only three days, which many would think isn’t a big deal, but when you are riddled with Babesia, it can be a very loooonnnnng three days. Four pills, twice a day. I got this. 


After my banana for breakfast, since my potassium has been low, I took my four pills. Usually the bomb hits me about an hour later, but it was much much easier than my last round. I had a headache and was a little loopy and out of it, but it was completely tolerable. So off to work I went!


I did notice, well… I think everyone noticed that I was a Grumpy Gus at work. I guess Lyme rage doesn’t really bother me too much, since it really is just word vomit I have no control over, but I feel so guilty afterwords. Did I really just say that? Wow.. I sound like a neurotic mess. Oh wait.. I kind of am.


I have noticed that since starting Coartem again, I have been getting completely out of breath. Standing up, walking, just about anything had me winded. I was a little worried about this, but there was no pain involved or any wheezing, so I will just mention it to Dr J at my next appointment. 


Once I got home, since I still didn’t feel terrible, I decided to overdo it some more and make a few dinners in case I wouldn’t cook for the next few days. Ehhhh I can’t breathe! Luckily, not too much was required, since I made Dave lasagna, and I made myself gluten free pasta with spinach. Easy stuff that I could sit down for most of the time, but it still took it’s toll. 


Again with the rage. Dave and his damn inability to take his boots off in the house. I guess it is a man thing, but it drives me NUTS! He was certainly reminded of that so maybe next time he will take the time to take his boots off. Psshhh men. 


I spent the rest of the evening bundled up with two sweatshirts on, and my two favorite blankets. I was running a fever, but luckily it was just under 100, so I really wasn’t too worried about it. It makes me feel very fluish, achy and freezing when I run any kind of temperature. I have always been cold blooded, no not cold hearted, as Dave always tells the doctors, running in the 97’s, so anything above 98 I really can feel it. 


I had forgot all about my mail that I put in my cat’s house near the door. Things always get thrown in there. Well, mostly my junk. Scarves, keys, mail, my phone. I had Dave bring it over to me, and saw that Dr J’s newsletter came in. Every month he does a little write-up about my last appointment. Google search time! I don’t know why he can’t put things in layman’s terms since he knows a patient is reading it. No need for fancy confusing shit. You don’t have to impress me Dr J. 🙂 


In a nutshell, he talked about how bad my last treatment went, along with my seizure once I was done treatment before I came and saw him. He talked a lot about my foot exam. Achilles tendonitis and plantar fasciitis, along with the discoloration of my toes. Yep, they are blue. I even have a blue pedicure so they match my skin quite nicely. 


He was concerned about the increased neuro activity I have been having, more stuttering and tics once again, as well as the emotionality, but he suggested upping my Ativan and Lamictal some more to see if there was improvements. I seem to still be having tics, but my stuttering has definitely improved. 


Dr J said I was hypersomnolent (once of the things I had to Google search), meaning a neurological disorder of excessive sleepiness, beyond fatigue, and falling asleep unintentionally. This has happened quite a few times for me, especially during my infusions. I had my fair share of days that I slept 15 hours or so last month and I am always so exhausted. Way beyond my crappy Dr’s can’t figure out shit so they give you a “feel good” diagnosis of CFS. He did however feel like it would pass. His main concern was taking my meds on time. This has kind of been a struggle for me, as by the time I can take my night meds it is really late and I am not really on a good schedule. But it is the body’s way of healing sometimes when you are really sick. 


He didn’t give me any indications of next month’s treatment, which kind of sucks. He thought this month would be easier, but it really hasn’t been for me. In a lot of ways it was much harder, and my body is telling me it is since my blood work hasn’t been super this month either. All things to discuss. On a good note, Dr J said that I was fluent and sharp, and said that I had an “excellent fund of knowledge and insight into my treatment plan.” 


You better believe it Dr J, I am one smart cookie! And knowing about your treatment is a lot wiser than taking everything because your doctor tells you to. Know your disease. At least I really do trust him and feel very comfortable in his care. I just like to know everything that is going on and why. 


And then he gave me a little stab… “Kim’s weight is up 2 pounds at 130. Noted.”. Thanks. Love you too. 😛

2 thoughts on “Feb Part 2 – Notes from Dr J

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