Well… my blue sky honeymoon ended that evening, and for the rest of this week. Treatment has been really intense. Granted, I am on a lot of antibiotics and herbals, but I am not really handling it all that well. It has been a long week. Bear with me, this is “one of those days”, and I am going to do my darndest to make sense and not blabber. Haha. I feel like it is important to share my story in real time however. You can see the good, the bad, and the ugly.
Today is the last day of my treatment, my second “bomb day”, so I can’t wait to have a two day break, in which I will focus on detox before I finish up my month with a short, high dose round of Babesia treatment.
I feel like the beginning of the week, I was just “there”. A zombie, doing the motions of things, having complete derealization. Floating.
There had been two heart episodes, and a woman from the medical center called as I sent the full recordings, asking what had happened. The first time, I stood up getting off the couch, getting really dizzy. The second, I had just gotten out of bed. That’s it. Something people take for granted. For many, it can be really hard.
When I first really started going downhill about seven years ago, I would constantly pass out if I got right out of bed. I decided to finally go to the doctor and discussed this with him, as well as the array of of symptoms that I knew weren’t normal.
That is when I got my Fibromyalgia and CFS diagnosis, told I should take an antidepressant, exercise and eat right. I refused the antidepressant, but I had already explored eating gluten free, and went to the gym often. Even all these years later, this symptom has stuck.
Both events were sinus tachycardia, the couch incident being a heart rate of 130, and getting up out of bed in the 150’s. She really didn’t have a ton of insight as to a possible game plan, but she assured me that sometimes these things take awhile to pinpoint what is truly going on. She told me she would pass along all my recordings to the cardiologist for my appointment next week.
I wrote her name down, which I should have done from the beginning, as you have read this heart monitor device has been nothing but a pain in the butt, as she was kind, and much more knowledgeable than the woman who basically said I had a serious cardiac issue, then gave me a “just kidding”. This woman I wrote down at least didn’t insinuate I was out partying, and letting me know, “drugs and alcohol can cause heart rate changes”. Trust me, I wish more than anything I was out partying, being social, and just plain be a normal young woman in her 20’s, having fun living life.
At this point, I am really expecting my cardiologist appointment to be rather pointless, and will just annoy me. I know there won’t be any answers, and even with issues like passing out, I know it won’t go anywhere. Like the nurse told me, it can take awhile to pinpoint what is going on. In the meantime, I am expecting to walk out of the office feeling like I am just plain crazy. I will get to more of that “crazy” later… I really try to be optimistic about everything, but realistically I know this appointment will be a complete waste of time.
My therapeutic massage was a little different this time around. Gayle usually does a fairly light touch on my legs, thighs and feet, but they were knotted up. She joked with me asking if I was working out, and we both had a laugh, since she knows that wouldn’t happen at the moment. She has Lyme herself, so she can relate to everything I am going through. There has definitely some lymph detox needed, and before I knew it, my nose was dripping. Sniffle sniffle. That is when you know your massage therapist is doing it right.
My stomach has really been hurting at night. It is always the same place, sort of on the right side of the middle of my stomach… if that makes sense. Unless I point to it, I am not so great at explaining it. I can sometimes feel it on the outside, and it feels tender. It sucks, as I am a stomach sleeper.. well, before I toss and turn in my sleep, sprawl over Dave, and take over his side of the bed, so it has been an impossible task trying to fall asleep.
Bartonella is hitting me hard. How do I know that? I am an emotional mess. Yesterday was really stressful and aggravating, and it would be for someone who is perfectly healthy. What does it do to someone who is chronically ill? It flares everything. One of the issues I have while attacking Bartonella, it plays terrible head games with me. These head games can be completely overwhelming and strong. Fortunately, I know in the back of my mind that these strong emotions will pass. It is the disease, and not me. I get a very long week or two, then my mind frame returns to normal.
I checked online for my hospital’s patient portal yesterday, and I got my blood work back a few days before. I had just never looked. A new test that was added to my routine blood work, haptoglobin was really high. The normal range for haptoglobin is 41-165, and my level was 238. My monocytes, were also high. I am not sure of the exact science of it, but the two are linked together with your liver. What worries me, is that I have an enlarged liver and spleen, and that test was an add-on. What this means, I am not sure. Have I received a phone call regarding this very off blood work? No.
I was teary eyed in frustration telling my parents what was going on with the cardiologist (they took quite awhile to call after the events, so I was waiting and stressed about that), and the blood work.
I was a hot mess with the frustration and anger, and really felt like the entire medical community was failing me. I still am feeling this way today, but I am at least little more sane, or maybe just so sick that I can’t even think about it or actually care. Bartonella and this stress didn’t mix well, and I completely lost faith in everything.
When this all happened, I was at work, taking a mini break. When I sat back down in the office, I was a vegetable, staring at the wall. In complete la-la land. At least my coworker was there to finish things up in the office. Once the orders were in, I slapped together some things such as payroll, and left it all on my desk. It was a “there’s always tomorrow” sort of days.
Before I left, I printed out the copies of my blood work to hand deliver to all of my relevant doctors that may or may not have gotten my blood work, took copies of my notes from my last DC appointment, and started circling things. Underlining things. Pressing ridiculously hard down on the paper. LOL
It is discouraging that my tests have often been overlooked. Or very inaccurate giving information from one doctor to another. I felt clinically insane, but maybe I would get some insight. My first stop was my GP. Have I gotten a call back? No.
The one person I really wanted to see and drop off papers to was Dr S, but I couldn’t drive there. I ended up dropping off the papers today, picking up a couple supplements, and I also wanted to know if and when I should be retested for hormones now that I am done with my Lupron. He wasn’t in the office, but I can guarantee that I will get an answer from him.
In the meantime, I will keep checking my email like it will magically appear in an instant. I realize doctors are busy and have many patients, but as I said, the inaccurate information from other doctors, and complete oversights that have been completely dangerous have been baffling. I am wondering if all these offices fax machines are placed next to a trash can, and when my faxed blood work comes in, it falls right into the trash. Who knows….
Last night nausea kicked in again as well as the stomach pain, and I was just out of it. I ended up saying screw it to even try to get ready for bed, just slapped some pajamas on and managed to do a half ass job at brushing my teeth. I couldn’t remember for the life of me if I forgot to take one of my seizure meds, or took another twice, so I was worrying about that. I am sure it would be fine if I took an extra dose, but I feared the repercussions of not taking one of them. It always leads to slamming headaches, ticking, stuttering, and seizures. I decided to trust myself that I was right with my meds, and then tried to tackle the pain trying to get to sleep.
Today is bomb day two, and I decided to post my first round of bomb day on my Facebook wall. Looking back, I found that I forgot to take one of my medications by looking at the pills. Damnit.
I posted it along with this picture, or meme, I think is the term… I am behind on these things, as I find it to be pretty funny, as at this point with all that is going on with me, it might be true. You have to have humor dealing with these types of situations. How else can you get through it?
I should also note on this bomb day, I had an option. Flagyl with it all or Diflucan. I pussied out and took the Diflucan. I really have no idea how bad I would be if I opted for the Flagyl and had been brave, as today is not my finest of days. I want my blue sky day like I had on Sunday. That just isn’t happening today though. Haha.
All it takes is an hour. I was fried. My “there is always tomorrow” attitude about yesterday’s office work was not the greatest plan. I managed to finish everything. Both yesterday and today, I keep getting little glimpses of spiders out of the corner of my eye, and I have this intense feeling of anxiety and paranoia. Depression. A fear of impending doom. All kinds of crazy. Not to mention my Omnicef side effect of making my best friend for the day my toilet.
I have been on and off crying all late morning and this afternoon. One was a happy moment, my Mom was extremely generous, and gave me a little money to go to the store and stock up on some foods. I gave her a big hug and thanked her.
The other moments, not so happy. Driving to the bank, taking a road that is about five minutes long, seemed to take forever. It was a never ending road, and every tree, every house, every turn seemed so unfamiliar. I was cloudy. I sat at the drive thru at the bank, and realized there was just no way I could go to the store even to just grab something for dinner, no way I could pick up my prescription at the pharmacy, nor drop off the mail I needed to send out. I needed to go home.
I pulled into my driveway, and had a meltdown. I was mad I didn’t get anything done. I felt absolutely useless. I realized it was Dave’s lunch time at work, so I called him and told him to pick up dinner. I was sobbing on the phone with him, telling him how I couldn’t do anything. I told him I don’t think I can make another trip into town to get everything done, even after taking it easy for awhile.
Dave to the rescue, although he cannot pick up my prescription, he is going to come home to grab the mail and mail it for me, pick up dinner, and will go shopping in the next few days. It is amazing to have him in my life and is willing and eager to do what he can to make things a little easier for me. I feel terrible because he has a very tough, labor intensive job, yet he will go into care taker mode when it is needed.
I needed to just do nothing as soon as I got inside. I laid on the couch, without the TV even going. I just wanted to rest. Then, I began to feel the classic Babesia symptom, air hunger, and started to feel dizzy and it seemed like the room dimmed to a darker color. I hit the heart monitor button. I checked my blood pressure and pulse, and while my blood pressure was normal, my heart rate was about 140. I had to have been laying down for a good 1/2 hour, so I am not sure what was going on.
Here I am now, I feel like my head is like a giant balloon. I am beyond out of it. I am freezing, and I feel like my heart is racing. Not going to lie, I am bummed that I am not finishing this out strong. All I know is that there is still lots of bugs in me, and there is a war going on inside of me.