This week has had it’s ups and downs. I feel like I have made some accomplishments, which might be attributed to a new medication, but I also had a complete meltdown. Fun times.
As I had written in my last post, I started Midodrine this week. My LLMD has a strong suspicion I have POTS, or a similar dysautonomia called NMH, and upon speaking to the cardiologist at the hospital in which I had my linq monitor placed, he believes that very well could be the case.
The morning I took it, I had a splitting headache, was out of it, and sweating bullets. I was afraid it was possible side effects, but as the days have gone on, I no longer have these issues, so perhaps it was a herx or the bugs stirring about.
I received a call when I was at work from the hospital because I had needed to press my heart monitor remote the day before, and the woman speaking to me told me I immediately had to go home and send in the full report from my modem at home, due to my heart rate being very high during the event and they didn’t have all the information because the modem at home has a longer time frame recorded for any events. They wanted to see if an arrhythmia was the cause of my event.
Leave work? Uh oh. This can’t be good. I left work, early, and headed straight back to my house to use the modem to give them all the information they needed.
And the meltdown begins. My modem didn’t work. I called the woman back from the hospital and she began to freak me out. She was telling me about possibly needing a new modem, and even got to the point of saying I may need another surgery to put another monitor in my chest.
She told me someone would call me with more information, but they were out to lunch. Damnit. When I hear these sort of things, it puts me in a panic mode. I want answers the second it happens. I waited by the phone, trying again and again to get my modem to work, and at that point I was afraid that my event would be lost, as the machine records five events, then deletes the oldest one. If I tried it a half a dozen times, I figured my recording would be lost. I was praying that maybe my monitor just needed to be relinked to the machine, or the connection was bad. At that point I was freaking out, and then began the waterworks.
Literally several hours later, I got a call back, and the nurse said my recording finally went thru, and the machine basically just had a hiccup. No new modem, no new implant. There was no arrhythmia, my heart rate was just high. I have tachycardia, duh. It was not a big deal. At all. If there are future issues with my modem, I can just get a new one. Easy peasy.
The nurse told me that I can just wait to send everything in at once when I hit the monitor for five recordings. I don’t need to rush and send everything. The monitor will automatically pick up any arrhythmias and higher or lower heart rates than what they set up my heart monitor for. Like I said, it is very simple.
So, basically, I left work because the woman made it seem like it was a dire emergency and said they needed it right away, she told me unnecessary and inaccurate information, and made me panic for no reason. This woman ruined my day, led me to tears, I called Dave bawling my eyes out to vent, I was a hot mess.
It was clearly her first day, she was a nobody that probably sits at a desk to sign people in, and had absolutely no business dealing with patients. I was not a happy camper.
I did what I always do when I am stressed out, I went right to sleep. I slept the rest of the day and evening away. I have been sleeping nonstop anyway, but this was a nap of all naps.
Yesterday I was at least mentally stable. Haha. I was so glad everything worked out, and I got the right information for the future. As soon as I checked myself out in the mirror to get ready in the morning, I noticed my face and hands were completely yellow. There was a slight yellow tinge to my eyes. Super. I know I have been having liver issues, but I am not on any antibiotics. Just my new treatment for POTS. Hmmmm… I figured since I felt “fine”, well like my Lymie self, I wouldn’t worry about it.
I went to work for a few hours, then headed to my therapeutic massage. Holy hell is all I have to say. My entire body was completely knotted up, I was in dire need of detox (my nose was POURING while she was working on me, so I know it was working!), and I had a lot of cranial sacral therapy done.
On a positive note, she told me how much better my feet felt temperature wise, and how normal they looked. They were no longer purple or blue. Normal. That is a first for me.
After my massage, I decided to go to a small cafe and pick up a detox juice. I wanted to get all the toxins out of me, in hopes I wouldn’t look like I had a horrible yellowy, big bird spray tan. Beets, carrots, kale, apple, and ginger. Not my favorite of juices, but anything that might help, and it doesn’t hurt to get some extra nutrition.
I was doing some research, especially with the yellowing of the hands, and as you know jaundice is from liver issues, but specifically the yellowing of your hands can be an indication of a parasitic infection. Babesia rearing its ugly head? It is always so hard to tell.
A huge surprise, I took a long nap as soon as Dave and I ate dinner, and we stayed up to watch the crisis going on in Baltimore. It makes me incredibly sad that this is going on in our country. I feel terrible for the business owners, the property destroyed, the senior center that burnt down. I hope that the family and everyone gets answers, and my thoughts and prayers are with everyone effected.
Today was a good day. I woke up a bit early, and was on a roll. I vacuumed and swept before I got ready for work, took care of my dogs, and headed out. I had to laugh at the post office woman, as she said to me, ” You look good today. A little tired, but much better! Did you do something different with your hair, it looks a lot lighter? I love it! ” My response, “Yeah, I washed it”. Hahaha. Having Lyme or a chronic illness you can totally relate.
These tasks are such a pain, and take a ton out of you. I have nice hair for a day, possibly two if I don’t get torrential Babesia night sweats. Day three is dry shampoo and a pony tail. Day 4 is a little more dry shampoo but it doesn’t really do anything, and it looks like it could turn to dreadlocks, and goes in a lovely greasy bun.
I did my regular tasks needed at the office, and started to clean the place up, gathering tons of loose change in a jug, cleaning up the trash and bringing it outside (not before cleaning a few bottles out of my car first!), and did payroll.
I headed to the bank for work, then to my bank because they don’t make you sort out and roll change. I told them I would be back later, as I knew it would take some time. Then, I headed back to that little cafe to pick up another detox juice. My skin looks much better, by the way. I think I am still going to go get some blood work done at the end of the week to be safe though.
My next stop was home, to let my dogs out for a while. Once I was done, I headed back to town, picked up the money from the giant change jar, went to the grocery store to pick up a few things, went to the gas station, then home.
WOW. That is a lot. I know I might have walked a little funny and I rock back and forth standing in one place, but I didn’t have that extreme dizzy/lightheaded/could possibly black out feeling. There was no feeling of “needing to press the button”. This is huge.
I know I might pay for it later, but who cares? I did all of this. Me. I felt almost like a normal human being. That is great. I can only hope that I will continue on to have better moments, and that I might finally be to a point that I am truly on the path to remission.