This week has flown by. I finished my last round of my protocol, and I will not be on treatment until I go back to my LLMD. It was pretty exciting, since I have been on this particular treatment, with the exception of tweaking some of my neuro meds and supplements since September.
I really have no idea what to expect, but I am okay with that. I feel like change, no matter what it may be, will be a good thing. To be honest, my biggest change I would like is to get rid of that yellow chalky paint (you know what I am talking about if you have Babesia 😉 ). Not because it tastes yucky, as I seem to tolerate tastes easily… well.. with the exception of Flagyl, but because it is expensive and my insurance will not cover it.
Beginning my last little bit of treatment, Coartem, I felt like I was coming down with a cold, and it slammed me like I had the flu. Everything hurt. My head was full of pressure, and I was lightheaded. If you saw me taking my very last pills, I had a huge smile on my face, and made Dave give me a high five. Like I said, it was pretty exciting.
Since I have finished, I am having some classic Babesia herxes. I still feel fluish, a little air hunger and hot flashes, as well as a bit of chest pain at night, and have been running a temperature for the past few days, just over 100. For someone who generally runs a low temp, this is kind of high, which would probably explain the fluish symptoms. The positive: I know I am killing those little suckers and they are dying off.
My hope is that in the meantime until I go back to DC, I will do fairly well on my time off of treatment after this herx. I REALLY want to have something good to report back to my LLMD when I see him for my appointment.
I had my cardiologist appointment this week. Unfortunately, I got all screwy as soon as I got to my appointment because I had to take an elevator. I don’t know if it is just a “me” thing, but it completely throws me off. I find that closing my eyes and holding onto the sides of it seem to help, but it still doesn’t fix it. Luckily I was by myself on the elevator. People would probably think I was a weirdo.
Because of my elevator ride, my body was rocking back and forth during my appointment. The cardiologist remembered me from two years ago when I saw him last, and he did say that even though I was rocking, my neurological symptoms were much better. I was a lot more “quiet”. Haha. No “AHHH”‘s, no clapping, or anything fun like that. Just simple rocking back and forth.
My exam went okay, my blood pressure was normal, my heart rate was a little high, but really nothing to worry about. We went over my history from my last visits, which included a stress and echo test and an event monitor, and I told him everything that has been going on. My dizzy spells, lightheadedness, and passing out. The water seeming to cause a lot of issues with me, and he was curious about what may be causing it.
My last exams showed that I do have supraventricular tachycardia, meaning my heart can beat much faster than normal, but showed no arrhythmias. The problem with an event monitor is that you are only waiting for certain events and it is very short term, and a holter monitor you can wear for longer term, but you can still miss events if you aren’t “hooked up”. The other issue is that these monitors are not waterproof.
My cardiologist believes I could possibly have an arrhythmia that they have been missing. The game plan is a very minor surgery, getting what is called a reveal monitor. It is placed under the skin, and they can monitor my heart for long term, and it can obviously get wet since it is under the skin, and I won’t have to be hooked up to any wires. He said he would like to monitor my heart for 3 to 6 months to see if they find anything, but this device can actually be placed for three years!
I did a little bit of research, and I had to giggle. My heart will be monitored via the internet, so technically I will be a wifi hotspot. LOL I am not sure if they will find anything, and I really have no worries.
It is one of those things that I believe will be a good tool to figure out if there is a heart issue versus continued neurological issues, and after 2 1/2 years of treatment, I have the mentality that “it is what it is”. I will have my reveal monitor placed toward the end of this month, and then I will wait and see what happens!
I have been kind of trying to take it easy, letting the herx pass by. Today my mind has wandered off somewhere, so if you find it, please let me know and give it back to me. I started out the morning loopy, and instead of grabbing a washcloth to wash my face, I soaped up a pair of underwear to wash my face. Hey.. at least it was CLEAN underwear, but into the washer it went and I got myself a washcloth.
I went to the post office to grab the mail for work, and for some reason I forgot to turn my car off, and I still had it in drive when I was about to get out of the car. Thank goodness there was no cars in front of me, and I had cat like ninja reflexes and was able to put it in park before it rolled forward too far. Oy vey.
Once I finished work (there was no mistakes on my paperwork at least!), I went to the bank to deposit my paycheck. Standing in line, waiting for the lady that was chatting away with the bank teller, telling her her life story (don’t be one of those people who feels the need to make friends with cashiers or tellers, or I will want to hurt you), I fell sideways. The people in line probably thought I had a cocktail or two during my lunch hour, haha, but at least I didn’t tumble completely over. I can’t seem to just stand straight up for any amount of time without having something to hold onto or lean on.
What else…. (Brain fart). Oh yes. Yesterday I saw a woman that was kind enough to hold a jewelry party in my name to raise money for my medical care. That was nice of her. What wasn’t nice of her is that she kept every single penny, and just used my name to boost her sales. A disgusting thing to do, not only to me, but also to those who purchased items with the thought that the profits would go toward my care.
I saw her and made eye contact with her, and she literally hid from me in the little gas station store I stopped in to pick up a coconut water. Ridiculous. I didn’t have the energy to say anything and just wanted to get in and out of there, it just irked me. I guess rightfully so. It reminded me of all the crummy things that have been done to me during the course of my illness.
I think the worst is the stares and comments of others when my tics were really bad (I have just about gotten over this, and can just joke about it, as it is something I have no control over), being no longer included in activities (or uninvited like the recent dinner/dance fiasco) giving me huge feeling of loneliness, and people who I thought would be there that have disappeared, or have said terrible things about me, such as I am lazy, I pick and choose what I do, and going as far as saying I brought a grand mal seizure upon myself. What? I even had a person that I thought was a best friend stop by and see me after 6 months of being really sick come over not to see how I was doing, but to ask for money. I gave her the only 8$ I had, and I have not seen or heard from her since. Alrighty then.
Then I remember all the good, and I hold onto that. Great people that love me. Dave, my family, good friends. People who have supported me throughout this journey, even those who don’t even know me that have been willing to help. I have good doctors that really do care. The accomplishments that I have made along the way. I am getting better slowly but surely. That is all that really matters. Yesterday though, everything just pissed me off. Hold onto the good, and then you will realize no matter what there is good. Rainbows, butterflies, and unicorns. Just snip the fat, cut out those negative Nancies.
This weekend I am hoping to get out to dinner with Dave. I think trying to sleep in as long as humanly possible tomorrow and doing a little detox will get me ready for the weekend. I am working on Easter, but I hope you all have a great holiday, and get to enjoy spending it with those you love, and get to eat some yummy foods. 🙂
Happy Friday everyone!