February Part 2 – It’s About That Time Again


I think it’s about that time for treatment again. My LLMD gives you breaks in between treatment, and that is the test as to how you are really doing. Mornings have been especially rough. I have been going back and forth from one step in getting ready to the couch. The other day I blacked out on the couch, and came to, absolutely drenched in sweat. When I have been driving to work, the windows are down and heat has to be turned off, even though it has been in the single digits for temperatures here in New Hampshire. Without doing my morning drive routine, I find myself getting dizzy, my tachycardia kicks in, and of course being on the road I start to get massive anxiety. At least I know what to do in order to be focused on the road and feel a bit of relief.

My seizure medication change-up has been a slow process, and I am not doing so well. I find myself barely able to keep my eyes open, the afternoons I crash pretty hard and can’t do any chores around the house, am napping during the evenings, then I cannot fall asleep until about 1:00 a.m., and am not getting up in the morning. I guess it is a good thing that I am actually sleeping, but with a job and things I need to get done.

Dr J was completely baffled that I work, and I think he forgets that I have commitments so I can’t stay at home and deal with all of this. It sucks. It is overwhelming and I kind of feel like a useless piece of crap because I know there is so much more I can be doing at the office, and I hate to show up “whenever”, even though most of the time it is forgiven and there is understanding about all of this. Boo.

Today was a really hard day. My toes for the past several days have been peeling and kind of blistery looking, so I know my ACA issue is back. What is ACA you may ask? Here is some information for you!  😉   https://kimmiecakeskickslyme.wordpress.com/2013/09/23/lyme-and-aca-the-herx-rash/

With the combination of my ACA rash, I have had a combination of numb feet, or little “zaps”. The best way to describe this feeling is when you have your feet or legs fall asleep, and the feeling when they finally decide to wake up. Wearing microwavable slippers and elevating my legs seems to be helping a lot, so I am willing to bet it is a circulation issue. For one of the first times, my knees have been visibly swollen. That is a new one for me. I know that new symptoms appear along the way, so I will keep an eye on it. I have anti-inflammatory prescriptions so I may just have to whip them out and begin to take them again.

Once I got to the office, there was several notes on my desk. “Oopsie” notes. I hate making mistakes, luckily they are not very big ones, but being corrected is embarrassing, and I feel like it is really unprofessional to our customers, asking them about bills that need to be paid, that were indeed already paid. That sort of thing. I was shaky and dizzy at work, and just wanted to go home.

After my mishaps and getting the few things I needed to get done like payroll, I had to wait for a phone call about ordering checks etc. in case there was any questions. I was a jerk for the day. It is awful knowing you are taking things out on others, as it isn’t their fault because of a “sick day”.

It was a long drive home. My arms feel really light, and almost like they are not attached to my body. The exhaustion really kicked in and I lost control of the muscles in my face, so I was rather droopy.  I am looking at my house and seeing how much of a pig sty it is. I am going to try to clean it a bit, as we are suppose to go away this weekend to the mountains. I am one of those people who freaks out if the house isn’t spotless when we leave to go anywhere overnight, because I am obsessive compulsive about coming home to a dirty house. Leaving the dogs, even though I know they are with my parents freaks me out as well. Even thinking about it gives me anxiety, so I will just skip thinking about it for now. Haha.

Our little stay in the mountains is one of those timeshare things. I know we aren’t actually going to buy anything but it is a free stay (Don’t judge…). In exchange we need to walk around the place for their tour, and that is a huge worry about the trip. I am holding onto things, and leaning against walls for support, so I am really wondering how that is going to work out. We shall see. Butterflies, rainbows, and unicorns, right? I am doing my best to be optimistic about it, and that I will do just fine.

Sorry for the Debbie Downer post. It is what it is though. I know my body, and I realize that it is time to back on treatment. Even though it is really hard, I need to do it. Once you begin this journey, there is no turning back. After getting beaten up with my protocol, I can only hope that my next break will be different. I will keep fighting, and I have learned that patience is a BIG virtue. My time will come. I just know it. 🙂

4 thoughts on “February Part 2 – It’s About That Time Again

  1. I have learned a long time ago (have had Lyme for 4 1/2 years, we share the same doc, and was on IV abx for 8 mos, still on oral abx), that I cannot worry about my house. While I hate looking at dirt, I can exhaust myself by cleaning, and eating is the priority. No brainer. I’ve been single for years and have 3 boys. When I started out on this journey my boys were 19, 16 and 9. My middle child lived with his dad in New Mexico, my oldest assigned himself to be my primary caregiver and my 9 year old learned how to cook and get himself off to school on his own. I felt guilty for everything. Took me a long time to accept that my house and I will survive, that my kids were learning good skills, and a little bit of love goes a long way.

  2. enjoy the timeshare. no judging – my mom and her husband and their best friends did it all the time when she was alive. i should have done it too 🙂

    are you not able to take Tumeric? it helps me with the joint pain. But my knees are perpetually swollen.

    Referred a couple of people to your blog via Instagram. Sadly, one was a 14 year old with POTS – who is symptomatic for babs (hot flashes from hell) and Lyme….the cardiologist never mentioned anything else to him naturally.

    Hang in there. I am still waiting on my answer from Appeals Council – as I go to a new cardiologist on Thursday with a “speech” prepped by my doc….wanting “big picture on heart”. he said “you are 45 but your heart acts like its 80. And 4 years ago you had no symptoms of heart disease. Tell her i want big picture.” i think he has already seen the latest echo report and didn’t tell me.

    Meanwhile…. which of these was my first infection? https://slicesoflymepie.wordpress.com/2015/02/04/was-it-2007-or-1987/

      • we don’t know…. no ID dr would see me (surprised NOT) – bartonella can cause it – there was supposedly a “vegetative growth” on aortic valve per echo on 4-1-14 – but it wasn’t there when they did a TEE on 4-9-14 and he sent me to an ID dr (who wouldn’t see me) with a DX of suspected infectious endocarditis (I backtracked from there to Bart & Lyme) – those “growths” fall off easy and i was in middle of one my moves (no one told me NOT to move stuff)…. i’ll know more Thursday

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