This week has seem to have flown by! As you have read on my last blog, I got the guts to contact my doctor about my concerns about how I was reacting to Cipro, and he agreed it was time for me to switch antibiotics, and I replaced my second week antibiotic addition with Clindamycin.
Saturday was my second day off of treatment, and I overdid it. I worked nearly a normal work day for most (Yeah.. I know that sounds bad, but that is a lot for me!), picked up the house a bit, and went out to dinner with a few friends.
I was naughty and had an ice cream on our way home from dinner, that I would regret for the next several days. Holy headache. My head was screaming at me. I know that this was purely a toxic headache, as it happened within about an hour of eating my delicious pistachio soft serve.
It starts from my brain stem/connective tissue, then radiates up the sides of my head. I can’t move my neck, and I can feel my lymph nodes begin to swell. I’d hate to say it because I love anything food, but this ice cream was totally not worth it.
It has been nearly three years, and although I was being perfect with the whole Lyme diet when first started, mostly because I had already cut gluten because I believed it helped with my “fibromyalgia and CFS”, but I couldn’t breathe with certain foods. I became extremely intolerant.
Now, I cheat here and there, and sugar is still a huge no-no for me. I don’t know why I bother, as since childhood I have always had issues with sugar. I am human though, and I like to think that these things won’t bother me. It probably doesn’t help that my husband has a very big sweet tooth. Lemon cranberry tea, lightly sweetened has been my go-to lately if I need a fix.
I am unbelievably glad that I had Sunday, the first day of the week’s treatment off from work. Since Dave and I are dorks, I took him to breakfast down the road to celebrate Father’s Day… because we have three fur babies and all. 😉 We then went to the store, and I picked out a movie from the Redbox in the store, while Dave did the grocery shopping. That was about all I could do, and he handed me the keys so I could wait out in the car until he was all finished.
With a full tummy, I took my morning antibiotics. Within an hour, I was in a completely vegetative state. I could not function or move. It was near impossible to keep my eyes open. Although there was so much I wanted to try to do around the house, all I could do was sleep. Over the 24 hours off, I slept 16 hours. At least I know my body needs it desperately for healing. In between my sleep times, Dave cooked dinner for us, we watched our movie, even though I kind of stared blankly and missed a lot of what they were saying, and I went right to bed. Well.. that was an adventurous day off!
Monday I was still wiped out, but it is one of my treatment days that I do not have to take all of my antibiotics. I did my work, sat outside for a bit as it was a beautiful day, and one of my friends stopped by to see me. I love visitors! Most of the time.
It was good to see her, and she “gets me”. We are both a little weird and we get each others weirdness. We talk about anything and everything. No judgements. She has also been dealing with a lot of health issues, that have remained unanswered, so although it really sucks for her and myself, it is nice to vent about these frustrations.
Tuesday I had remembered that I needed to get my blood work done, and headed to the hospital right before work. It was one of those mornings that my usual phlebotomist was working with another patient, so I had someone new. Ugh! I hate new! This involves having to explain that it is a pain in the ass to get a vein, to use a butterfly needle, and it will be hard.
After a few minutes of stabbing in and out, and wiggling the needle all around in my arm, my normal phlebotomist came in to the rescue, stabbed me once, and got the vials all filled. She gets a gold star for being awesome. And not maiming me. That is one thing I miss about having a line. It was so easy and nice to have the nurses use draw the samples from my line when I came in for my dressing changes.
Knowing that I could possibly fall right asleep after I took my clindamycin, I decided to take all my normal antibiotics, herbals, and antimalarials in the morning, and wait until the afternoon when I got done everything I needed to do to take my bright pink pills. That makes them fun at least. 😀
It wasn’t a very good day. I would say that stress set it off, which it mostly did, but I knew that there was no way my blood pressure medication was working, as my feet literally looked like they were just plain going to fall off. They were so blue and purple, and my little toes appeared to be a little swollen.
Then came the stress. Back in the day, I use to be a fantastic multitasker. While I was waitressing, I was like a robot. A very personable and awesome robot. At my current job, I could do a dozen things at once, and all my work would come out perfect. My desk was fairly tidy compared to the random papers and folders I have on my desk now. At least it is mostly organized chaos, I can find things when I need to. My schedule between having both of these jobs, caring for my grandmother, going to the gym, always making time to exercise my dog, and making time for fun, I could do it all! Now… two things to do at once on my desk pretty much puts me into tears. I was overwhelmed.
My Dad, who is my boss, obviously likes to get things done and he has every right to… after all.. he is the boss, and is one of those people that it is imperative that it needs to be done that very second even if it isn’t due for a month or more, kept piling things on my desk.
He missed the many cues that I was not feeling it, at all. The stuttering, “BAH BAH BAH”‘s before even trying to say anything, the fact I looked like I hadn’t slept in days.. or showered for that matter. Then the rage came out. I was being mean, for sure. I hate being that way, but it is word vomit, and it just spews out without me realizing it until after the fact. Snippits of jerkiness. I hate being that way toward him so much, because he has been there throughout this and is on my side. He wants me better. I hope he knows that these moments aren’t something within my control.
I got nearly everything I needed to get done, minus one report, because my handwriting looked like a first graders that day, and I didn’t know if I was being dyslexic or not with my numbers. Sending things into Uncle Sam, I want and need everything to be absolutely correct. And not look like my little nephew wrote the information down for me.
In the afternoon, I had massage with Gayle. I was really glad, as she can get rid of all that head pressure, and make me a little less tin woman like. She said that my legs were really inflamed, which isn’t really normal with me. I do have a lot of random bruising this week on my legs for no apparent reason, so maybe that is why. It looks like I definitely took a beating in my thighs and calves. Another guess is I am just so full of toxins. Damn you ice cream. That and the bajillion things for treatment I am on right now.
The evening involved a nap, and Dave and I did some light stretching exercises. I should definitely be doing this more, but it is hard sometimes without a buddy to remember to do these sorts of things. Maybe Dave will be my new regular basis stretch partner. It will also give me a little motivation to try to work on some of the very basic PT exercises that I still remember from when I went last year. He will at least push me to do them, do them right, and not half ass it.
Wednesday was the second to last treatment day. I had the choice between Flagyl or Diflucan, and I bet you can guess what I chose. The Flagyl of course! Nah. Only kidding. Ef that shit. Of course with the option I am going to opt out of Flagyl every time. Call me a baby if you must. 😛
Although tired, I got some things done around the house when I was done work (I finished up that project, by the way), and started to do a little bit of catching up on my blog. Unfortunately, there were some errands I wanted to run, but I was feeling pretty nauseated so I rested before tackling my at home plans. I just wanted to get home and lay down for a few minutes, and that seemed to help.
Today is my last day, my second week bomb day! At least, it is my very last day, other than my little round of Coartem, and I am done. Doneuntil I go back to DC. *Happy couch dance* Although it feels like my world has fallen apart during this long course of treatment, as I have been aggressively treating Babesia, and Bartonella has reared its ugly head, I am at the finish line.
My fingers are crossed that my new treatment protocol won’t be as heavy. Mentally I am exhausted. Physically I am exhausted. I am holding onto those few much better days I had over the past few months, and that more will come. I know that they will, the matter is when I will continuously see blue skies. Patience is a virtue, but common’ now.. I am sick and tired of being sick and tired. This whole sitting on my uncomfortable couch that literally has a visible mold of my body in it is really getting old.
My blood work has come back, and a lot of things on the RBC and CBC were borderline, but within the limits. I am a bit worried that although my ammonia levels were in the normal range, they have gone drastically up. My haptoglobin levels were still very high, and that one is still a mystery to me as to its clinical significance, as I have not received any feedback. I decided not to worry. Dr J will see it at least when I have my appointment. Maybe it will be another “Oh my God!!!” as I had during one appointment, maybe not.
I waited to take my Clindamycin until I got home, and I kind of feel like I am one of those wind up toys… let’s go with the monkey one with the cymbals, and it is moving slower and slower, the monkey isn’t really striking the cymbals anymore, and is about to fall over. Haha.
I made it to the store on my way home to pick up something yummy and greasy for dinner, and my Lyme riddled brain picked up a pizza… with flaxseed. As I have just mentioned, I have a few intolerances still, and flaxseed is still very much one of them. It completely closes up my throat. So I guess I will try to do a stir fry, that will probably be slightly rubbery and gray since I have to do all my defrosting in the microwave for it to be ready for dinnertime.
This afternoon was interesting to say the least. I put my foot down for sure. The cardiology department called, first letting me know I didn’t have that one in a million tumor. Hoorayyyyyy! I think we all expected that one. She had also mentioned I had not sent in my full transmission of my last episode. And then… I let her have it. Granted, I apologized as I didn’t want to sound douchy to her as it wasn’t her fault, but it very much needed to be said.
I told her that I hadn’t sent in my transmission because of the response I have continuously gotten. “Late night partier”, “out drinking”, “using recreational drugs”, anything along those lines has continuously come up. I told her that this whole process has been nothing but a waste of time, I have not been taken seriously. I have been treated like this is something I do to myself, getting out of bed with a heart rate in the 170’s is something I do intentionally. It is all a big joke.
The last administrator I brought up these issues to blew me off, stating that it wasn’t in the records that this was said to me. Obviously. You don’t speak with patients in that manner. Ever. It wouldn’t be in the records because that person wouldn’t have a job. Colonel Mustard, how about you get a clue. *Rolls eyes*
After getting off the phone with them, the only thing that is ever accomplished is that I feel like I got beaten while already down, made to feel like I am crazy, and completely angry and depressed.
I mean.. this isn’t just a doctor being unpleasant, I had a minor surgical procedure to be treated like crap. I think my feelings toward this matter are totally reasonable. I understand they need to ask questions about what you were doing, and things like that, but it always comes to that MUST be why I am having episodes of dizziness, lightheadedness, blackouts, syncopal spells, among other symptoms.
I proceeded to tell her that if I am ever told or insinuated I am under any influence or alcohol other than my prescribed meds to immediately contact my local hospital’s labs, which is about five minutes away and I will take any test under the sun to prove I am not some junkie alcoholic, and I will record every word that is said to me in the future, and if they have a problem they can talk to my lawyer.
By the end of the phone conversation, the doctor is now getting me in with the electrophysiologist, which I have been saying to them this entire time, it looks like they may no longer treat me like a joke and actually try to spend the time to figure it out, I got a huge apology, and that person continuously bullying me shouldn’t be speaking with me again.
Advocation. You need to do it. I don’t even feel bad for sounding like an asshole, although I did apologize to her specifically because I wasn’t directing it toward her, but it makes you wonder… how many other people are they treating this way that aren’t saying anything? Let me tell you, it really hurts to be mistreated by someone you think would be professional.
I feel pretty awesome I unloaded on them. Whether they will follow through or not, we shall see. Will I actually use my family’s lawyer? Probably not. I don’t have the energy. But they will probably have on file that I used that word, and they will sure as hell tread carefully. I am done playing games. Do your jobs, or take this thing out of me.
Although there has been ups and downs this course of treatment, I will say that I am so glad I also advocated for myself swapping out the Cipro. I have a much better frame of mind. There aren’t any hallucinations, no voices telling me to do bad things, that I am worthless. I am no longer anxious and paranoid, borderline delusional. The depression is lifting.
Those times during this treatment have been so hard on me. It ate me alive. I am forever grateful that I still had that inner strength, that little voice that somehow overpowered all the bad (as I called it my two brains in a previous post), telling me it would pass and I would be okay. Without it, I could have just given up. I am of value, I am important, I am loved. My mind isn’t letting me doubt this anymore, screaming at me nonstop telling me otherwise.
This round may have not been fun, not that Lyme treatment is a blast to begin with, but I at least feel like this has been a relatively normal treatment the past few weeks. I survived to tell the tale, and my head is held up high. 🙂 I made it.