This week is the first week of a long awaited new protocol. I had been on the same treatment, with a little tweaking here and there for a very long time. It was definitely time for change, whether it be good or bad, I was happy to try something different. Another bonus, no more yellow paint! Those of you going through Babesia treatment know exactly what I am talking about. 😉
A bonus to this new protocol is that some of my medications were to be taken only once a day, so I opted for nighttime. I can’t feel any of it when I’m asleep!
My first day of treatment I was definitely having some neurological issues going on: depersonalization, foggy, just blah. Altogether though, I wouldn’t consider it too bad for the first day of my treatment. Generally, the first day always tends to whoop my butt, and I can’t think or do anything for the day. I am stuck to the couch unable to do anything. This was a positive change for me.
Weirdly, that first day I felt like I was starving. I was eating everything in site. It was to the point of being completely gross, reminding me of watching shows like “My 600 Pound Life”. My stomach felt and looked distended and it hurt full of pressure, and I stepped on the scale and gained 5 pounds.
Unfortunately, I am always really obsessed about my weight, so I was really bummed, even though it was my own fault. I think part of it is my new medication, Florinef, for my POTS treatment. I realize though, if I gain a few pounds and am way more functional again, although I still have light and sound sensitivities, it is worth it. I am sick of sitting at home and having so many limitations.
For the first time in awhile, I did not take a nap my first day of treatment. I was really excited, even feeling like a blimp, I did 20 minutes on my recumbent bike! I figured since the following day was my massage day and I had to take it easy for the rest of the day. That is definitely an accomplishment. Step by step, I hope to be active again, without facing any consequences. I know that day will come, I just need to keep working on what I can do. I am feeling really optimistic that this POTS treatment will work.
I am considering doing another parasite cleanse when I am on my next treatment break after putting some thought into it. There was definitely some interesting things ummmmm coming out, so it would probably be worth it to do it again. Dave even said he would do it with me! I guess that’s what happens when you have become a boring old couple… you do parasite cleanses together. 🙂
When visiting my massage therapist, I never know exactly what is bothering me. I think I do in general, but she always seems to find something that is terribly painful. She has explained to me a lot of muscles go up your body, such as your lower back to your hips and thigh. My upper back and connective tissue were excruciating. She is usually pretty gentle with me, but that day, it was a “press as hard as hell with your elbow” sort of day. She told my my circulation and temperature was much better, another reason why I think my new treatment is working. Can you tell I am optimistic?
It was also another day of not napping in the evening. Hmmm… this is quite a change for me. It would be really nice if I didn’t crash by the early evening, not stay up until nearly 1:00 in the morning, and go to bed at a reasonable time.
The second day of taking all sorts of fun medications, it REALLY hit me. “There it isssss”, I thought to myself. I knew it would kick in sooner or later! I was stuttery, my legs were numb making me completely off balance, my hands kept raising (a common tic of mine), and I felt like bugs were crawling all over me. I have vitiligo, and it was really prevalent in my legs. I kind of looked like a leopard. The veins were popping out of my wrists.
Septra (Bactrim) has a tendency to make my mouth and eyes completely dry out like a raisin. It was a terrible combination to try to stay hydrated, as the Florinef leaves a really salty taste in my mouth. It felt like I was completely dehydrated yet just had a mouthful of ocean water. It made everything taste disgusting.
That day mostly consisted of me covering my face and resting my head on the table at work. Trying to do any task took me forever. I had had to ask my coworker to check my math on everything, and I kept having to stop while we were checking our orders of the day, because my eyes kept getting blurred.
I did absolutely nothing for the rest of the day. I was toast. I ended up sleeping for most of the afternoon and the evening. When I finally woke up, Dave pushed me to at least do a little bit on the bike. It was probably a good idea, since I had spent so much time on the couch to get my legs moving and blood circulating again.
Flagyl day one. Ugh. This is my least favorite and feared drug. The metallic flavored devil. During the entire day, I had that awful feeling in your throat that you could puke at any given moment. Or have to run to the toilet. You just never know. LOL
Of course, I had an appointment with my other gynecologist to have an exam and receive my Depo shot. Even though it is not a very long drive, it is a hard thing for me to do. The sun beaming between the trees, causing flashing light, and staring at my speedometer to make sure I wasn’t going 10 mph under the speed limit and holding on to the wheel with all my might.
It was one of those days that the receptionist, gynecologist, and even the mail lady at the post office said to me, “You look really tired.” Yup. I pretty much don’t remember most of our conversations, it was almost like listening to the adults on “Peanuts”. All I know is that my pap smear which I was due for was excruciatingly painful. Maybe it was just her, but I don’t remember it being that bad.
Unfortunately, after my pharmacist doing some investigating for me, it doesn’t look too promising to get my Lupron shot at the discount I was hoping for. I just might be shit out of luck on that one. I am going to continue to try, and make the step of calling the company directly before I give up. I just can’t spend nearly 3 grand on another shot. I am bummed, as it seemed to help. Now everything seems to be coming back.
Yesterday was my bomb day. If you have been following me (you should be, I am awesome), you know it is the day that I take everything under the sun. It is an extremely aggressive day. I took all my pills for the early morning, 20 to be precise (and this is just round one!!) , needing about a bottle and a half of water to get them down, and headed to the hospital to get my blood drawn. I have about an hour until the bomb from bomb day kicks my ass, and it happened while I was sitting in the waiting room waiting for my turn. It was completely full of people, not an empty seat.
My neurologist once told me that after a year of consecutively having tics, a diagnosis of Tourette’s syndrome is given. I use to tell strangers that I had Tourette’s, as people for some reason felt the need to come up to me and ask what is wrong with me.
I know however, that I do not have Tourette’s. I guess technically I do if you want to nitpick, as it has been about three years of this particular symptom never fully going away, but it is Bartonella induced, as I have been told my my LLND and LLMD.
Anyway, as I was saying… the bomb went off. I can best describe it as holding in a sneeze. You can just sneeze and get it over with, or you can try to hold it in, even though you feel like you are going to explode. Trying to hold in that sneeze tends to be a bad idea, as that little explosive feeling takes over, and you have a humungous sneeze. And that is precisely what happened.
I held in that sneeze. Hand raising, doing my thriller dance, and my face kept grimacing. It was one of those situations that I could tell people were trying not to be rude and stare, but knew all eyes were on me. Damnit. Why did I hold in that sneeze?
Getting my blood drawn was a pain in the ass. My favorite phlebotomist is no longer working there, and it seems that only a very select few that work there actually believe me when I reiterate to them, “I am not going to be easy. Use a butterfly needle.” After a few pokes in my arm, wiggling that needle around. Ackkkk!!! I never look at that one, even though I am not squeamish, but the feeling just disgusts me. After finally realizing that I am indeed a difficult patient to get a draw, she managed to get it from my hand. The blood ran so slow to fill my vials, I at least didn’t have a giant draw, I think 5 this time, so once again, the wiggling of the needle.
That was fun. But, I was still feeling pretty good for the day, at least mentally. I got my coffee and $3 scratch ticket, and won $20 (woohooo!) and bomb day = Chinese food. After sitting at work and taking my time, I stopped ticking, and although I was a little loopy and shaky, I was doing much better. The bomb was starting to subside. I made it to the store to pick up a big bag of dog food and man handled that! I wasn’t dizzy or lightheaded. My heart didn’t feel like it was going to beat out of my chest. I was okay. It was a success. I am trying to keep track of all these things, hoping I will improve and finally get better.
Once I had finished my Chinese food, I took a long nap, and woke up like I had never napped, had stomach pain, nausea, and felt really weak. I skipped the bike that night. I feel bad and almost guilty, but I have been really good. I can always get back on it today!
Today I am tired, but feel alright. I got a little bit of housework done, went to work, and I think Dave and I are going to attempt to go out to dinner. He wants to go to an auto part store, but after my Lowe’s experience, I think I will sit in the truck. Especially knowing him and his truck and toy parts, he could talk forever with the employees.
Wish me luck, I only have a one day break before I get a beating for the next several days. I think I will do well. Both drugs I am familiar with, so I might be just fine. Let’s hope so.
Happy weekend everyone!!!!