After my last post as you know, I had good intentions of cleaning and cooking a nice dinner. Well, I lied. I ended up passing right out after I hit the “post” button and was asleep for the rest of the afternoon.
Dave finally woke me up a little after 5:00 and told me the dishes were done, he switched the laundry over for me, AND cooked dinner. Gold star to him! I am either a lucky girl or he is sick of always running out of clean underwear. Either way.
Monday was my second day of treatment. Holy herx! I can’t remember if I took a shower or not, and I definitely didn’t wash my hair. I suppose that really isn’t anything new though..
I decided to get my routine blood work done to get it out of the way. I was completely bummed out, the woman who always has awesome luck getting a blood draw from me with just one prick was working her last day before she will start another job at a doctor’s office. I will be looking forward to the future multiple jabs and wiggling of the needle in my arm. Ick.
At least everyone knows I am a pain in the ass so they take caution, use a butterfly needle, and really try to look for a good vein. This was a huge benefit of having my Powerline, I never had to deal with needles, the nurses could just draw what they needed from the line.
Walking back out to my car, I had to laugh at myself. There was a very old lady, like ancient old, using her walker, and she passed me in the parking lot. Wow, it was definitely one of those days I was walking at the speed of molasses. Some days are much better than others. This just wasn’t one of those days.
I then headed off to the post office for work. I realized when I was on the road, that I not only forgot to take my blood pressure medication, I most importantly forgot to take two of my seizure medications. Oy.
At the post office, my feet were blue and purple (guess I really do need that blood pressure medication!) standing there waiting for a package to be scanned. I was so dizzy, and felt like my heart was pounding out of my chest. I hit my heart monitor button and in the car checked my blood pressure. Sure enough, it was 80/65, so connecting the dots, I am positive my blood pressure dropped very quickly causing the issues.
It kind of seems Captain Obvious to me, but then again, I am not a doctor. I feel like anyone that has been dealing with a chronic illness for a long time that does their research and through their experience should be handed some sort of medical degree though! It seems like I know a hell of a lot more than a lot of doctors.
Sometimes I get lucky, instead of big egos, the doctors are interested to learn something new. My GP, who was a dinkus and called to tell me they wanted the drug test results too, saw my feet and how the skin was peeling away and my toes had some little blisters on them, had no idea what it was, and I explained to him about ACA (the herx rash), and he wrote it down to do a little research on it. That is something, right?
I just sent in my full download of the event, so I will have to reiterate that I forgot my Midodrine. I was having a brain fart and forgot to tell the woman that key part. Haha. The other day I had another episode, with my medication taken, with the same exact symptoms.
I am not really sure why their only response to my LLMD’s thoughts and prescribing my medication are that, “It certainly could be POTS, but that is really hard to treat.” Oh wait. It was because I was a drug addict. Haha. I am really hoping the electrophysiologist will actually listen and be able to further help me with this issue.
By the time I got all these things done.. okay that is really not a lot of tasks, I was fried. The bossman called me and asked how I was, and the only word I could think of was “wonky”. He laughed, as I guess that is kind of a weird description. But I was just that. “Wonky”. I told him about forgetting some of my medications, and he told me to go just go home.
I just couldn’t do that, as I had stuff to do, so I tried to get as much done as possible. My Mom came stopped into the office, and also told me to finish up and go home. I did a lot the few days before, fortunately. I wasn’t there for more than two hours, and I told her I still had errands to run. I was instructed to go home and take my medications before I did anything. Home it is.
I never really know how I look on my bad days, well I do sometimes, especially when I was ticking terribly, but I was assuming it was obvious I was “off” that day. I was told it certainly looked like I needed help.
It was a long drive home. I took my medications and laid down for awhile. I felt a little bit better, then decided to tackle my errands. As soon as I got to the parking lot, I had to sit there with my head down for several minutes. I needed the gusto to get up and finish out my day. I survived, and headed straight home.
After laying down for an hour or two, I was able to clean up my bathroom a bit, and cooked dinner. I was fighting taking a nap really hard, but I already left work early, so I kind of felt like a useless turd. I know I can’t help it and it is just something I have to cope with for the time being.
I crashed right after dinner, and slept until after 9:00. Dave kept trying to wake me so I wouldn’t be up all night with no success. I would just groan and mumble at him, roll over, and fall right back asleep.
I paid for it as I was up all hours of the night, but that nap sure did feel good.
Tuesday is my massage day. My circulation was really off, and I had the classic Bartonella feet. Tightened right up. As I had mentioned, I had another heart event. My blood pressure dropped significantly again, even taking my medication, and up went my heart rate.
Although it wasn’t as rough of a day physically as it had been, I was having an emotional day. I was pretty drained. I was pissed off at the world, every little thing annoyed me, and I spent most of the day in tears. I wasn’t so much having a pity party day, I just noticed things that are bothering me, such as my recent notes from the office (I swear they aren’t even mine?), hurt feelings, pet peeves that everyone has of their spouse, money and the fact I have none, worrying about prescriptions, several appointments I have next month.. anything came to my mind.
That night was certainly a fun one. At about 4:00 in the morning, I woke up to a puddle of pee. Yes, I am that 28 year old that wet the bed. This has happened a few times throughout treatment, but I never made it past the pajama bottoms before getting to the bathroom. Nope. Not this time.
Seriously? I woke Dave up since I didn’t have my glasses on and asked him how bad it was, and he looked at me and chuckled. “Were you swimming in your dream or did you just decide you had to tinkle?” Hahaha. I can only laugh.
I have no idea what happened. I only had a sip of water before bed for my meds, and definitely went to bed with an empty bladder. I use to have issues controlling my bowels prior to treatment, and have had this issue a few times on IVs before. Maybe it is just a muscle or nerve sort of thing. Like I said, I have no idea.
What was worse, it that Dave came trotting into the bedroom with the “dog kit”. The dog kit is a spray bottle of Lysol, paper towels, and a plastic grocery bag. Our kit for dog pukeys and Cooper tinkles. Both of the dogs were looking at me like “I didn’t do it” and that would be correct. I needed the dog kit.
You may ask why we didn’t change the sheets. I asked Dave and he was like it is 4:00 in the morning. I could barely stand as it was, so he gave it a few sprays and wiped the spot with paper towels, I changed my bottoms, climbed back into bed and fell right asleep. Whatev. Screw it.
We joked the next day that I might just need those diapers advertised on TV with the annoying women twisting around dancing. Tanna? I don’t know. Everytime that commercial comes on, Dave ALWAYS tells me how much he hates them all. Maybe I could be one of them?
My blood work came in the following morning. A lot of tests were on the fence. If there was a range of 0-1.0, mine would be a 1.0. Sometimes in some strange way I wish it was higher or lower, even if just a teensy bit. There was some things to look out for as I am use to, potassium, and sodium both being on the low side. My kidney, red blood cells, and width were exactly on the dot for the high range. My haptoglobin was normal this time however! I am thinking it is because my liver and spleen are no longer enlarged. I’ll take it!
It was another emotional day. A really emotional day. Treatment was taking its toll on me, and I was really stressed out. It wasn’t my favorite thing pissing the bed the night before to begin with, knowing I would have to clean and change the bed, and wash the comforter, which is a daunting task for me. I was still feeling down from the other day, and what set it off was searching for a medication I will need for my next round of treatment.
I felt so sick. I was rocking back and forth in my office chair to my heartbeat, and I could not stop crying. I just needed a breather from this all. Chronic illness, especially such a controversial disease is such a bitch. And that is just what my family and Dave are giving me.
My parents decided they would watch the little monsters for me, and Dave and I are going to have a little getaway to my favorite place on earth. The ocean. I think it is finally showing that I am slowly breaking. I am still hopeful and trying positive, but things are really getting to me at the moment. I needed this more than anything. I am very grateful.
Realistically, I won’t be able to walk the full 5 1/2 miles of the beach like I once did when I first finished up IVs and was making great progress and doing so much better than I am now. Right before I slid right backward. That is okay though. I will walk the beach as much as I can, look for sand dollars, and just sit and breathe the ocean air. This makes me really happy.
Today is my week two bomb day. Along with my umpteen other antibiotics, tinctures, and antimalarials, the second week of treatment I am given the option. Diflucan or Flagyl. I took the pussy way out and went for the Diflucan. I still feel yucky, maybe not as much as if I went with the devil’s drug. I have been really exhausted, foggy, dizzy, and my legs feel like jello. I am looking forward to my evening nap.
I keep losing my train of thought and was stuttery talking on the phone. I ran into my Uncle at the bank to put some money in my medical account, and he was chit chatting away with me. I eventually had to tell him I needed to go, even though I sounded rude I am assuming, but I began to feel a wave come over me, and I knew my time was coming that I would collapse if I kept standing there. Sorry Uncle, we will catch up next time.
I am home, relaxing. Although it is another bomb day, we still won’t be getting Chinese food to save a few bucks. The ocean trip is a huge treat, and any way to save is totally worth it. Greasy, non gluten free breaded popcorn shrimp it is. It isn’t egg rolls but it will have to do. This will be the very last time I will be doing this gosh darn protocol. It has been a very long time. It is the end of an era, and I am ready to start something new. So unbelievably ready.
Wish me luck!
It is my two year anniversary of getting my Powerline placed. It seems like it wasn’t that long ago. I was excited and so full of hope, as you can see in the picture. And the IVs did completely begin to change things around for me. Although they were such a pain in the butt, between being hooked up for daily infusions, sometimes for 5+ hours a day, having an even harder time with bathing, the skin issues and all, I do kind of miss them. I miss the progress I made. I miss the lactated ringers for detox. I really miss those ringers.
Would I do it all again? I am not really sure. All I know is even when time seems to have stood still, it really hasn’t. Coming right around the corner will be year three of my treatment. Yikes.