May Part 7 – Break Time!!


Yesterday was the last day of treatment of this round, and I have just started my 2 1/2 week break. Yay! Thank God. The past few weeks have been nothing short of hell. All I can do is hold onto that one better day I recently had, and hold onto it tight. I know that there will be more to come.

Over the weekend, before I started my round of Coartem, I was feeling rather “blah”. I did a day of juicing to focus on getting some of the toxins out, particularly the toxins in my liver, and had to take it completely easy, as I had what I would like to call, “Cipro foot”.

There is so much controversy over this particular antibiotic, as the side effects can be quite severe, tendon damage being one of the bigger issues, (we won’t get into this debate, as people can have extremely strong opinions on Cipro), and I will say as long as you do your research, weigh out the good and the bad, and know the side effects, take what you feel is right for you. I advise you to do this with ANY drug you take, as there can be fun side effects for anything you may put into your system.

I will tell you though, Cipro has been a humongous help to me when it comes to addressing Bartonella. Dr J once gave me the option to stop taking it, as when I was on the IV form I began having issues about a year ago, but that at point Dave was pushing me in my wheelchair so it was very easy to take it easy and baby it. Within two weeks or so, everything was 100% back to normal. Now that I am more functional, it isn’t all that pleasant. Even driving was a task and a half.

Couch time it was. I was pretty bummed. I was actually feeling well enough that I knew I could have gone grocery shopping with Dave as my chaperone, but I knew that it would be a very poor decision on my part. All I managed to do was fold some clean laundry. Dave even has been cooking dinner for the past several nights.  I ended up spending the weekend sleeping a lot, and watching movies. Boo. 😛

The babying of the foot definitely paid off, although my massage therapist said my tendons from my toes to the top of my foot were still inflamed, my foot feels so much better. Phew.

Every night lately, I have been having excruciating headaches. They have been so overwhelming that I can barely stand. They are beginning at the connective tissue at the back of my head, my lymph, and it moves to the front of my skull, ending around my eyes. Needless to say, I have been skimping out on my showers. I just can’t do it. Extra deodorant and perfume have been good pals of mine the past several days. 😉

Coartem did me in, not so much physically but mentally. I was angry, annoyed, and saddened when I had my few day round. Everything made me upset. I spent most of my time tearing up, or crying. I overreact to some things, trivial things like seeing a friend post a bazillion pictures on Facebook, tagging every single place with other people, yet I seem to constantly be an embarrassment, like I am that person that no one wants to know you are hanging out with.

That shouldn’t really matter, but it irked me. I stayed off the social media to not get any further pissed off. Every single mean thing that people have said or done to me all flooded back into my mind. I felt somewhat like a mutant. A very lonely mutant.

I was finding reasons that Dave no longer loves me in my head, All the stresses of my doctors appointments, and feeling like a medical mystery guinea pig ate at me. Sleep was my only salvation on this one.

I had my first cardiologist appointment since I had my heart monitor implanted yesterday. It went as I expected. At least the doctor was honest. He blatantly told me he had absolutely no idea. It is established that I have sinus tachycardia, but he cannot figure out the cause of it. I was told that nearly all cases are pretty cut and dry with heart issues that are seen, but unfortunately I am such a complex case it is hard to pinpoint a reasoning behind my episodes.

He is going to have a “meeting” with his team, other cardiologists and electrophysiologists to see what the next step is, if any additional tests would benefit me, and sort of got the possible pass the buck scenario. “We might recommend for you to go to Boston”. Hopefully the team of one of the top 5 cardiologist departments in the country can figure this out. I can’t be THAT complex, I wouldn’t think.

Then there’s the 24 hour pee test I am taking today. The “I am now pulling things out of my ass because I have no clue” test. He wants me to be tested for this extremely rare, potentially deadly tumor on my adrenal glands causing the sinus tachycardia. It is called Pheochromocytoma. That’s a mouthful.I am highly doubting this is the answer to my problems, but I will pee in my jug, and entertain it. Thanks Mr. Cardiologist for having me carry around a big ol’ pee jug to pee in and keep in my refrigerator for my birthday! It is what I always wanted.

As I mentioned, today is my birthday. 28. It really has been something I haven’t been looking forward to. Looking back, I started this whole Lyme journey and road back to health when I was 25. Three years. I had been feeling like I missed out on three years of my 20’s, which is suppose to be some of the greatest years of one’s life. Now that it is today, I guess it just seems like any other day.

All I can think is that things will turn around, and this will be the year I will begin to see significant improvements. Possibly even the year that I finally reach some level of remission?

Dave put a smile on my face this morning, as there was a card with the words, “old fart” (he is 5 years older than me, so he is clearly the old fart), and as I opened it, there was a rat’s butt, saying that he really does give a rat’s ass about my birthday. You don’t find it funny? Whatever. I do. Have a little humor. You old fart.

I got a message via my blog today, and had another good laugh. One from a life coach, claiming that if I have a positive attitude and follow some positivity exercises, I can “will” all of my illnesses away. Poof! Gone! By golly! Why didn’t I think of that? If I think happy thoughts I can “cure” my Lyme and coinfections, seizures, tics, organ issues, endometriosis, heart issues and more?

That was the biggest laugh of my day. I wasn’t even mad. Some people really just don’t have any idea what this is like, and I will say that I think I have been pretty darn positive considering the crappy hand I have been dealt. I chose to be strong. I chose to fight. I chose to see the silver linings and appreciate all the good there is in life. Positivity is an amazing medicine, but it surely will not sure you, and you can not will chronic diseases away. I hope you are reading this sir. You, are a butt head.

I finished up work, and soaked up a little bit of sun. Dave has been working outside all day in this heat, and I have been having major balance and leg issues, and my arms feel like they are about a million pounds, so we are going to go out to a light dinner… where there is a lot of air conditioning. 🙂 Wishing you all a happy Wednesday!

And remember folks, WILL all your problems away. 😉

4 thoughts on “May Part 7 – Break Time!!

  1. Hi Kimmie, Your friend The Person Next to You, pointed me in your direction. Have you heard of something called Dysautonomia? More specifically Postural Orthostatic Tachycardia Syndrome or POTS? I had to go through a 48 hour heart monitor also, before my diagnosis. They used tests to rule out other issues with my heart before confirming the diagnosis. There is tons of information out there about it but unfortunately there is so little awareness that my PCP told me if I asked 5 other doctors about it they would have never heard of it. In 14 years, I am her second patient with he condition.
    Here’s some info from “Postural tachycardia syndrome refers to an exaggerated increase in heart rate with standing. A healthy individual usually has a slight increase in heart rate—by about 10-15 beats per minute—within the first 10 minutes of standing. POTS is considered present if the heart rate increases by 30 beats per minute for adults, or 40 bpm for adolescents, or if it reaches 120 beats per minute or higher over the first 10 minutes of standing, accompanied by orthostatic symptoms. POTS is an abnormality in the regulation of heart rate; the heart itself is usually normal. Some patients with POTS in the first 10 minutes of upright standing or tilt testing will go on to develop NMH if the test is continued; the two conditions often are found together, and they are not mutually exclusive diagnoses. Both are capable of causing chronic, daily, orthostatic symptoms.”
    Good luck to you in your search for answers!

    • Yes, I have heard of this, and this is a high suspicion, at least with my LLMD. I kind of had to roll my eyes at one of my cardiologists, who simply gave me the reply that it was really hard to treat. I am on Midodrine for it right now. Thanks for the website, I will definitely be checking it out. Knowledge is power!

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