Although I wouldn’t necessarily call it full blue skies, I am happy to say that I had a few days that I felt much more “normal”. Dave and I went to a big company barbecue that a friend was having over the weekend, and I did really well. There were plenty of places to sit down that were shaded, which was perfect.
Although I had a few waves as I would describe it, that I completely come out of it for even just a few seconds, unable to process or hear anything, and everything becomes blurry. I stood and got to talk to a lot of people I haven’t seen in years, and it was a much longer time than I would usually stand. I could feel my legs become a bit shaky, but to everyone else, they would have no idea. It was really nice to get out and socialize, and just plain have fun.
The following day I started my hellacious protocol. I have my eye on the prize, since this will be the very last time I will be on this protocol, and I have a new treatment plan lined up.
It was kind of a miracle day. The first day of treatment is usually pretty brutal. I woke up having a POTS event, standing for several minutes beginning to get ready, my blood pressure dramatically dropped, causing me to begin to black out. When I was able to get up safely, I took a Midodrine and elevated my feet for awhile, and I ended up feeling much better. My heart rate was a little bit high, at 120, but I wouldn’t consider that alarming.
Back to my Lymish self, I took my pills, tincture and yellow chalk, and headed off to work. I was clearly late for work, since I really had to wait to make sure everything was fine and the laying down for about 20 minutes or so with pillows raising my feet. Thank goodness I have a job that I have leniency, and all was forgiven.
I had spoken with Dave, and we decided to push the limits a bit. On his way home from running his errands to get truck parts, he picked up some groceries. Things that are heavy for me like cases of water, and a few other items. I was to pick up the rest of the items we needed for the week. Talk about pushing day one’s buttons!
I felt a bit woozy and jello-like, but my small trip to the grocery store was a success. Yay! I didn’t even try to sit in the wrong car on some girl’s lap either! Dave helped me carry my bags inside, but I kept on going, taking care of everything, and setting aside ingredients for dinner.
Did I stop there? Nope! I went to the very backyard, and picked some vegetables from the garden, then started on making dinner. I decided to make a big casserole, so I wouldn’t have to worry about dinner the following day. This is one of the most helpful things to do when you are up to it.
You never know when you will be unable to even get off the couch. With my husband working his butt off everyday, I like to have a nice meal for him to come home to after a long day. I feel a little more important and needed that way, and that I can still do something nice for him.
We had our dinner, and then I officially ran out of spoons for the day. Within minutes, I slept for nearly five hours. Out like a light. I may have crashed, but that is okay. For the very first day of treatment, I did better than I could have imagined.
Yesterday I was getting pretty pissy and frustrated at work as I was a little behind, but before I lost my cool completely, I left for my massage appointment. I was in definite need of detox, and my feet screamed Bartonella. Most of my session was working on my feet. Once I am all done though, I feel so much better. Everything is loosened up. I feel like I walk better, and my head is a bit clearer since she is able to get some of those toxins out.
I got invited to go to play Bingo that night with my work crew from when I use to waitress, but knowing myself, I decided to give them a raincheck. After massage I do get a bit drowsier, and something as simple as taking a shower drains me.
It was also the second day of my heavier meds, as I do a pulse treatment. It was another evening of taking a long nap, and loading up on water with burbur drops to keep flushing out my system. I certainly flushed my system in lots of ways (thanks Omnicef), so it was probably a really good call to not join the girls.
Today. Hmmm. What comes up must come down? I did so amazing to start the week off, I knew I was going to fall off the horse, eventually. I know the culprit though! Flagyl day one. As you know, I am not a fan.
I took my metal flavored goodness, along with my other medications and went to work. I felt okay for a couple hours, then it hit me like a ton of bricks. I almost fell over trying to put our finished invoices in their boxes for the delivery boys, the brain fog kicked in ten fold, and my mouth and eyes felt like they dried up like raisins. I kind of felt like strings were attached to my body like a puppet, every movement almost felt like I was floating.
While checking our work for the day, I had to have my Dad put a fan on high directly on me. I felt like an inferno, and I could start to feel a lump in my throat. That lump that is questionable if you are going to puke or not. My stomach turned. Happy thoughts happy thoughts… I made it through the day, and headed to the bank and pharmacy. Ugh. I just wanted to go home, but I needed to make a deposit, and go to the pharmacy since I was out of a prescription that I will need tomorrow.
Of course the one time I am having balance issues and just want to curl up into a ball, there was a line at the pharmacy. I kept both hands on the wall and leaned on it while I waited in line. I have several prescriptions I need to pick up that are ready, and as embarrassing as it was, I had to tell them I could only pick up that one for the day.
On my way home, my mind was all over the place, worrying about my prescriptions, and several prescriptions that were suppose to be called in already that weren’t. Oy. Then came worrying about how I am going to get to the electrophysiologist in a few weeks.
Dave is really busy this time of year, but I really like to have him with me because he is the one that sees me everyday. He can add information that I could be forgetting, and is my second set of ears. Although he still hasn’t used up his vacation time, I felt incredibly guilty.
I know my Dad would take me if all else fails, but having my best advocate, especially with what seems like a joke heart implant and having the cardiologist’s incredible helpfullness (rolls eyes), I need him.
A mini panic attack kicked in. The medications. The appointment. Feeling like complete junk.
Dave seemed to be mad and annoyed at me for asking even though I know he will get over it. At the moment, it still stung. I feel like such a piece of crap when I have to rely on other people. I was raised to be independent, which is great. Things aren’t going to happen for you unless you do them for yourself. Do your best and work hard. I have always been that way.
Except now, for nearly three years, most of that has been taken away from me. It is a hard mental hurdle that I have had to deal with throughout this illness. I need my parents help, Dave’s help, help from friends. I don’t like that. Someday I know it will all change and I will have my life again. In the meantime it is part of the process, something that is entirely out of my control. I’m just along for the ride.
I am a dork and got an iced coffee for Dave waiting for him in the fridge when he gets home. And a yummy dinner on the table. LOVE ME!!!!!!!! Haha. Everyone knows the ways to a man’s heart. All will be good.
Tomorrow is week one’s bomb day. We usually opt for Chinese food, as it always seems to come through and save me from complete misery, but a homemade greasy meal will have to do for the time being. Mac n cheese? Mac n cheese with bacon? I will survive. Even though the honeymoon is over from my moments of blue skies, time seems to be flying, and I am nearly halfway through this round.