I was still recouping the beginning of this week from working, and visiting with friends. Although I was still not quite right, even for myself, I was much better than my case of the Mondays I had the day before. My focus of this week has really been to detox. I did a juice cleanse for a day, have been drinking tons of water with burbur drops, and have been very careful with sugar, as well as gluten.
Actually, I have been trying to avoid starches altogether. Starches, even gluten free, still convert to sugar. I feel like that might help my stomach out, and I have been loading up with probiotics. It seems to be helping. I am a lot less “bloaty”, likely from the Candida issues, and I have even lost 5 pounds! That never hurts either. 🙂
I saw my massage therapist, and I am still having a lot of leg issues. My feet seem to be doing much better. They were a normal color, not blue and purple, looking like they are about to fall off. It is encouraging that my blood pressure medication seems to be working. I also have not had a complete pass out episode in awhile. I am going to connect the dots here, and assume that there is a correlation between the two. Now only if I can get a doctor up here in New Hampshire to believe me and continue to help me out. It would be nice, and possibly a huge step in the right direction.
Wednesday morning started out with a panic mode cleaning. It is an OCD habit when I know that someone will be coming over. My mother in law was suppose to stop by in the evening, and I don’t want us to look like we are filthy hoarders.
Tumbleweeds of dog hair. Every object in our house was grey, covered in a layer of dust. I need a maid. I got a phone call in the morning, that plans were canceled due to car troubles. I managed to clean up the floor a little bit before I found out, so at least my house looked a tiny bit better.
At work, I began to be a bit of a mess. I think maybe the government reports I have been doing for the quarter were stressing me out, subconsciously, since I really wasn’t struggling to do them as I have been before. Over seven years of doing them, it now sometimes feels like it is my first day at work. My brain does not work like it use to, unfortunately.
I was having my tics, and was very stuttery. My hands felt like they were being hit with a sledgehammer, and my right leg felt like it could explode. Lately, it seems like it is full of something… I am not really sure how to explain it. It was a long ride home, and I spent the rest of the day relaxing, and keeping my legs elevated in hopes it would help some.
Thursday I did a bit of dub work in the office, and worked on my reports. I am nearly done, so that is a relief. I went to visit one of my best friends so I could get my hair done. I decided to go a bit darker, so I won’t have to come in as often for touch ups. I keep checking my bank account, and between the cost of the hotel and flights for our upcoming trip to our LLMD, it was a big hit to the wallet. I am very thankful that I am no longer traveling there every month, as I had to when I was on my IV treatments. Any way I can save a bit is worth it!
I ended up watching my “About Me” video on my blog that day. If you haven’t seen it, you really should. Go now! Watch it! Okay… well maybe read the rest of today’s entry first. But then watch it! No Lyme patient is the same, but as you will see, neurologically, one of my strong symptoms was rather unique. The tics. The yelling. The clapping. The “shhh-ing”.
I have moments that I am stuck on being stuck, and I don’t put everything in perspective as to how bad things really were, and how much progress I have actually made from the beginning of this journey. I guess sometimes it is good for me to watch the video, to remind me that although I have hit some big road blocks and went backward, I was much worse than I am now. There has been tremendous progress.
As I have said before, if you can feel every bit of this, can describe your pain and symptoms, and can acknowledge that you are sick, you are still okay.
When you are literally helpless, truly have no idea and unaware of how sick you actually are, and no longer “there”, and about a vegetative state, needing a caregiver but are oblivious about it all, then you are not okay. At one point, I was very not okay.
Now, although things still suck unbelievably, I still have a voice. Although I don’t feel okay, obviously I don’t, and I know many of you are plagued and are suffering as well, many of us are still okay. Just unimaginably sucky. A situation that unless you are living it, you really have no idea. That makes sense, kind of sort of, right?
Friday was an interesting day. I got a phone call from my GP, I should note a week and a half after I demanded to be drug tested, and I was told they finally called in my order, likely a very basic test, but they were told Dr S ordered it. A full panel. No half-assed playing games. Getting er’ done.
THEN, they said they really want copies of my results. HA! Yup.. Everyone apparently thinks I am some sort of crazy drug addict.
I still haven’t gotten my results back yet, at least it is not showing up on the portal, which can be kind of slow at updating, but when I get my results in, I am really going to try hard not to write a big, “EFF OFF”, or “I FRIGGIN TOLD YOU SO”.
That probably won’t go over too well. Kimmiecakes is going to have to be a mature young lady on this. It will be pretty darn difficult, but I just want this all to be done with, the accusations, and my name to be cleared.
I felt pretty yucky that day. I don’t know if it was a flare, a late herx, which can happen after a round of Coartem several days later, or just overdoing it for me.
Overdoing it by basically doing nothing. I had to press my heart monitor, as sitting down at the office, it felt as though my heart was racing and I was having chest pains. My heart rate wasn’t really going crazy, it was around 120, but something was going on.
I was dizzy, nauseated (I am not sure why I still have nausea OFF treatment), and just wanted to go home and lay on the couch and take a nap. I was bummed, because I really wanted to go out to dinner that evening, but needless to say, it wasn’t a good idea.
My tics were really bad that night. Hand raising, “Bahs”… my brain was going haywire. Dave jokingly sat beside me, asking, “Do you have a question?” and a few “Simmer down over there!”‘ comments.
I ended up sitting on my hands and that seemed to help a little bit. It is really hard when I am having these episodes. It is like trying to hold in a sneeze. Also, I have noticed trying to hold them in, everything goes apeshit and I have a massive amount of tics.
In public when it happens, although I want to hold them in when I am having them, it is just so much easier to do it and get it over with. Not that I have any control over it, but I would rather let out a single event, than have several in a row because of holding it in. It is like my body builds it up and I can feel it getting heavier and heavier. Although annoying, it is much better than actually feeling like crap.
The tics have certainly been worse the past few weeks. Losing the skin on my hands at the office and my full blown little episodes, at the salon, a lot at home. I am not really sure why.
A very long time ago, before I started to see my current LLMD, my local Lyme literate naturopath had a conversation about my case, and it was concluded that Bartonella was the culprit, and at the time, my protocol was completely changed to focus on that particular coinfection.
Yesterday, I vacuumed in the morning before I went to work, and really messed up my hip. It hasn’t been quite right since my fall last month. I know the muscles are still tight, even though my massage therapist seems to be helping it, and I visited Dr S for an adjustment, it almost feels like bone on bone rubbing. I went to work, uncomfortable sitting at the computer, and waddled around like a penguin to get the mail. At least I didn’t have to attempt to go to the store, we had plenty of leftovers for dinner.
Dave was gone for the day, going to a wheeling event and a potluck dinner a few hours away. He always feels like I am mad at him for going on his trips, but I am really happy that he has a hobby, it probably keeps him sane dealing with me. It is great that he has found something he really loves to do for fun. He needs it.
I do however feel lonely when he is gone, and my mind likes to act up. I am much better off than I was for the past few months, but a sadness kicks in. I began thinking to myself that no one every asks me to do anything anymore unless Dave is there with me. Picking me up for dinner, or something simple really isn’t out of the way, as I am only a few minutes from town. Dave has even told me if I got invited somewhere he would gladly drop me off and pick me up. I need to be invited for that to happen though.
I kind of feel left out. Maybe it is a Dave needs to be my babysitter sort of thing, I don’t know. I know it isn’t intentional, but it still hurts. It is one of the realities of having a chronic illness. *sigh*
It was a beautiful day, so I ended up sitting outside for a bit to get a little sun, watching the dogs play, and did a Kimmiecakes version of a batch of laundry. The clothes go in my “clean hamper” that we live out of. The positive of this: no folding. The negative: we basically wear the same thing everyday because we grab whatever is on the top of our clean hamper.
The rest of the day was spend napping and watching a few Lifetime movies. I was glad when Dave came home, as he laid next to me on the couch, telling me all about his trip. He took a look at me after telling me about his trip, and said to me, “You look like a train wreck”. Umm thanks? I love you too?
He was right though. My hair was stringy like spaghetti, my face looked like a greasy french fry. I probably smelled a little ripe. Haha. I am in dire need of a pedicure. Hmm.. maybe that will be Dave’s job tonight?
He is not mean, I promise you that, just honest. He sometimes just needs to give me gentle reminders. I have a great guy though, he loves me unconditionally. Even when I am pretty yucky he will lay with me.
It is pretty sad that a grown woman needs to be told and reminded of this, especially because I was the one that use to always be squeaky clean, always had perfectly done hair, nails were always done, and I spent my time doing my makeup. Those days have been gone for a very long time now.
Yup. A shower was on my list of things to do. As many of you know that are dealing with a chronic illness, showering is a completely tiring and sometimes even a daunting task. It takes up several spoons. For me, it is really difficult especially having water sensitivities.
Not being able to tell hot from cold, and my body temperature cannot be regulated. I have no idea why, and not a single doctor has been able to figure out why with scorching hot water, my body temperature has dropped to the 95’s. A weird medical mystery. This has gotten better, with the exception of telling hot from cold, but it is still there.
Today I took my shower. I feel like a whole new woman! Since I had the day off, Dave and I went out to breakfast. I had one of my “waves” when I instantly felt out of it, everything I looked at seemed glazed over like frosted glass, and felt like my body was an inferno, then realized I completely forgot to take my seizure meds.
I am assuming that was a big reason why. At least after a few minutes this feeling subsided, and I felt a little more like my usual self again. It is the worst when I have to go and sit in the car while Dave has to go ask for the bill, box up our stuff and we have to suddenly leave. As you can tell, this has happened a time or two.
Unfortunately, my endometriosis pain has seemed to come back. The Lupron has finally begun to wear off. I have an appointment with my gynecologist next month, and I need to decide what to do. Surgery might be in my future, but I think I will wait until winter to do anything. I don’t want to be down for the count during the summer.
It takes a long time for me to heal, and my body hates me. I just want to try to enjoy summertime, and I want to take a trip to the ocean very badly. Although I don’t think I will be able to walk the entire beach like I did when I first finished my IVs, I will do my darndest!
Dave has been working on his truck, and went grocery shopping as it was really busy so it was just better for me to stay home, and I did some cleaning. It is nowhere near what I would like to have done, but a big improvement. Best of all, we have a fresh clean bed now. For some reason making the bed is really hard for me to do. I would think sweeping or vacuuming would be harder on the body.
I then went into town to go to the bank because he didn’t bring his paycheck to deposit. Most importantly, I needed another cup of coffee, as our waitress was rather slacking on the coffee refills. 😦 Boo. This was all a lot for me! I am tired and pretty sore now, but I feel like I actually accomplished something today. It put a smile on my face.
It is too hot for me to sit outside this afternoon, as I have a hard time breathing and get light headed, even drinking plenty of water, so the rest of the day will be spent inside with the AC cranking.
I am one week down without treatment, and one to go! My LLMD appointment is right around the corner. This week I hope to have great news to bring to my appointment about how this week goes! Wish me luck!
Have a great Sunday everyone!