The past several days has had its good and bad moments. I have finished up my round of Coartem, and there has still been some lingering Babesia symptoms. One of my symptoms that has stuck around is the wonderful hot flashes. All week, I have had the windows rolled down on my way to work in negative degree temperatures. I could feel myself becoming an inferno, the inside of my body beginning to boil. Okay… I know that really wasn’t happening, but being forgetful about putting on deodorant and feeling the sweat on my forehead, it certainly felt like it.
I become very emotional on Coartem. There has been times I have cried the entire time on this treatment, and times that I have been full of rage. In combination with complete brain fog, the results can be pretty bad. Lyme brain moment number one: I lost a lot of money at work. A lot. I went to the bank to make a deposit, and of course it wasn’t there. I called the boss man (aka my Dad), and asked him if it was on my desk. He was looking for it, and I immediately jumped to the conclusion that someone stole it out of my car. I WAS ROBBED! I began freaking out, becoming defensive.. and all around turned into bitch mode, even though it was completely my fault. Unless I was robbed. Which I wasn’t.
A phone call later, it was indeed on my desk. In some random place, underneath my pile of unorganized chaotic papers. Phew. I felt like an idiot, and having boo-boos like this at work really sucks, as it definitely gives my Dad less faith in how well I do at my job. Oy.
Lyme brain moment number two: Our guys finished up their deliveries for the day, and they handed me the invoices to enter into the computer. I gathered up the invoices and put them in order to enter the information.
HALF THE INVOICES WERE MISSING!!!!!!! I immediately got into Kimmiecakes angry mode, stomping out to the guys while they were cleaning out the trucks, and accused them of losing the papers and came back into the office, wondering what I was suppose to do about the missing invoices. One of the guys came into the office, and went through all the papers, telling me they were all there. “No, they aren’t!!!”
About ten seconds later, he showed me that they were in my stack of papers, I just put them in the wrong order. Not missing. I was just having a complete brain fart. At least they were really nice about it, and weren’t pissed at me for my accusations.
I have had edema this week. It was extremely painful, and my feet were bright red and blue. You could press on my toes, and the white color would stay there. I had absolutely no circulation in my feet.
I had my Mom check out my legs as it is kind of hard to tell looking straight down at my legs, and my left thigh and my right calf were swollen. It felt like my legs were going to explode as it felt like there was a ton of pressure in my legs. She was really concerned about my feet, and so I have been wearing my microwavable booties at night, fuzzy socks, elevating my legs every time I lay down and putting Dave to work rubbing my feet and legs.
My weight had continued to go up a bit, so I think these issues are all a result of my recent Lupron injection. This all scared me, as I have had organ issues throughout my treatment. I decided it was best to get some safety blood work done with my “frequent flyer” blood work card, and found nothing extremely out of the ordinary. My glucose was a bit high as well as my creatinine (maybe kidneys?), but not anything to worry about. My liver actually seems to be doing much better (hooray!). My sodium was a bit low, but I think that is a result of drinking a lot of water trying to get rid of what I think is some major water retention.
After doing a bit of research, I have learned that drinking more water can help with the water retention, and that can also cause a lot of weight gain. I was determined to get rid of the edema in my leg and thigh, and had my fingers crossed I could stop myself from getting fat.
I had to have drank 6 or 7 bottles of water, and although I felt bloaty, I hoped when I woke up in the morning I would lose some weight. It worked! I have lost 3 pounds of my rapid weight gain. I also no longer have edema in my legs. A major bonus. There is no more pain. I am now back to not feeling my calves and feet. At least I know that is neurological, and if I were to choose, I would rather have noodle legs than the pressure and excruciating pain.
I have been kind of in hiding, having intentions of running more errands and visiting my best friend at work, but once I have been done work, I have been feeling unmotivated, and have headed straight home. Within a few hours, I have been falling asleep. Dr J has told me that I need at least 12 hours of sleep a day, and I have been surpassing his recommendation.
My worst moment was Thursday night, when I decided I needed a good hair washing. This is a rather daunting task for me. I have been braving it with my showers, no longer having Dave babysit me. I feel embarrassed, and it reminds me of the days that he had to bathe me, pull me out of the tub, dry me off, and dress me. I hate being babysat. Feeling like I was a little stronger, I have been taking showers without supervision.
I was wrong. I got to the point of just about finishing my wash, trying to rinse the conditioner out of my hair, and felt my legs beginning to buckle, and everything began to turn black. I knew I had about 10 seconds to get the hell out of there, and once that timer went off, I was toast. I collapsed on Dave’s dirty pile of clothes (he works in a dirt pit… so they are rather gross… obviously covered in dirt, as well as oil, grease, fuel…) as well as my sweaty clothes.
Once I came to, I found myself sopping wet, laying on these clothes, unable to get up or move. My face was smeared on Dave’s work pants, and I was unable to lift my head. My legs didn’t want to move. I was stuck, and cold. I tried calling out to Dave, but my voice didn’t want to project enough for him to hear me. And so I laid. After what seemed like an eternity, I got enough strength to get up, dry off and put on my pajamas, take my seizure and sleeping meds, and get into bed. I just might still need a babysitter. 😦
This weekend I have been really proud of myself, and I feel like things have turned around a bit. I have been able to sleep in. No interruptions, and a fully recuperative sleep. I cannot emphasize the importance of a good nights rest in healing. Dr J’s PA was right, this will make a huge difference in my progress.
I worked yesterday, and did a little bit of extra work so I could start a new project at work… organizing my desk and file cabinet (Daa daaa DAAAAAA!!!). I was a little tired after my few hours of work, but was determined to have a good night out with my friends that I have not seen in a very long time. I rested for the rest of the afternoon, molding into the couch, and got ready and off we went.
I did so well at the restaurant we went to. I get exhausted with a long car ride (the restaurant was about 45 minutes away), and although I felt a little loopy, I was doing okay. During dinner and catching up with everyone, having a good time, I thought to myself for once, no one would know I was sick. Although I knew I had “tired eyes”, I looked normal. I sounded normal. I didn’t stutter or tic. I was so happy that it was a night that I couldn’t wait for the bill to come so I could go home and lay down. I was happy that I could actually enjoy myself.
Today I also got to sleep in. Today is the one Sunday I get off a month. I have accomplished so much. I got ready and decided to have Dave take me grocery shopping. It was a success. Then Dave and I made a deal with a task I have been putting off as long as possible. Dave would sweep, wash, and vacuum, while I folded the massive pile of clean laundry, and sorted through my clothes, making piles of clothes to donate, and items to throw away.
You can walk into my closet now! I ended up with bags upon bags to donate and throw away. Even though Dave protested in fear that I would have an emotional rage, I modeled several pairs of pants for him to see what truly fit. I am no longer 105 pounds anymore, and I highly doubt I will ever be that weight again, so those went to the donation pile. So many pairs of pants I could not get above my butt any longer, and there were some pants that Dave gave me the thumbs up. Project of the day: done. And without tears! If you have read my past blogs, I get overly attached to clothes, and generally end up crying when I get rid of anything. I did great. I feel like a productive person, even though that probably sounds silly to many of you. The past few days have been huge for me.
It is now time to rest, and luckily my Dad made dinner for us to take home. My body is paying for my accomplishments, but I honestly don’t care. Everything has been worth it to me, even if I screw myself for the next several days. Pushing myself has paid off. Sometimes if you want to do something do it, I promise the payoff will always be better than the punishment.
I only have one more round of treatment until my next appointment, so this is a make or break few weeks. Maybe this will be my time that things are really turning around for the good. It needs to be my time. I really think it is.