This past week was my final week of treatment of this protocol. In my mind, I was very positive. Butterflies, rainbows, and unicorns. After all, it was only two measly antibiotics. Piece of cake. No problemo. I must say, I really underestimated it. This week was pretty miserable in fact.
The entire theme of this week was sleep. Lots and lots of sleep. I was so nauseated from my treatment. It was one of those feelings that I felt so much better while I was eating, but as soon as I was done I really regretted it. I have accomplished pretty much nothing at work, but I make sure I leave with the desk looking a little tidy, at least having the pens put away, the stamps, stapler and calculator in a neat fashion. That is about as much as I got done.
I seem to get a lot of the fun side effects from my medications. If it says edema, I will get it. Weight gain, and my all-time favorite, “severe diarrhea.” Omnicef is just one of those drugs. On a positive note, I figured it would offset my slight weight gain from my new POTS medication, and it definitely did.
Once again, I had a moment of forgetting that I have been potty trained, and didn’t make it to the bathroom in time. Joy. At least I know that my legs are still working, as I have been racing to the bathroom all week. Underwear shopping will be coming pretty soon. I also once again BARELY made it to the bathroom with a bed wetting accident. I am not really sure what is going on. All I know at least is my stomach is beyond messed up. I know this a bit, okay very TMI, but, I promised you all, the good, the bad, the ugly… the gross. How is everyone going to understand this disease if you sugarcoat everything? Right? Right. At this point, I honestly do not care.
When I went to see my massage therapist, we joked around about my incident, and I assured her I wouldn’t have any accidents while I was getting my massage done. Haha. My temperature in my legs and feet are still doing better, but my lymph and connective tissue in the back of my neck were painful, and I know I was full of toxins. I am definitely having Bartonella issues, and as expected, with all the recumbent biking I did before, my thighs were pretty knotted up.
Between Wednesday and Thursday, I slept 30 hours. It is annoying only for the fact that I am not being useful in any way, but I know my body is needing it desperately for healing. Yesterday, I slept for 16 hours. 16 hours! Dave didn’t even bother trying to wake me up in the evening, he told me that I was out like a light. All of this sleep has been making me slack on my biking exercises, but the first thing you do when you are out of sorts and wake up isn’t exercise. For me, it is laying in a ball on the couch with my face smushed into a pillow. It has made me feel pretty guilty. The day before my massage therapy however, I did manage to do 20 minutes on the bike, so I at least feel like I did something at least, making me feel just a little less guilty. There is always next week. I will make up for lost time.
I have been a bit stuttery all week, and it took me forever to try to check some work with my Dad. My vision continuously blurred, and I kept hearing buzzing in my right ear. I few heavy blinks and after a few moments this would go away, but it kept on happening over and over again. That and the fact I was focusing on not puking all over the keyboard. If I had to guess, my Dad would not be overly impressed with me.
The second to last day of my treatment, I was extremely frustrated. I have been having phone problems. Unlike the rest of the world, full of technology, I have a plain Jane slider phone. To me, it really doesn’t matter. Unfortunately, when you open the slider part for the keyboard, I get a white screen of death, and several of the buttons on my phone have stopped working. Phone calls are only occasionally coming in, and are cutting out. Yeah. It is time for a new phone.
Dave and I went to the Verizon store, and I instantly felt like I was going to pass out. The lights were totally screwing with me, and although I wanted to look around the store, I couldn’t move. I just had to sit there, and picked the phone that was closest to the chair. Good enough.. Unfortunately, the guy was a dink, and wouldn’t let me get the phone because it was in my Dad and his company’s name, even though I am on the contract. Dink.
I think he honestly just didn’t want to deal with me. I had a little mumbly Lyme rage session leaving at the man. I was not so nice, but I am guessing I probably came across as a drunk, so I looked like the idiot. So I will have to deal with my phone for a few more days, until my Dad has a chance to get a new one for me.
Dave offered to take me to Walmart, which was right across the street, but at that point I could barely hold my head up, talk, or keep my eyes open. I wouldn’t have even been able to use a scooter to get around. I bet it would have taken a good solid two minutes until I slammed into a pillar and broke their scooters. Maybe they are really durable, but I don’t think they are made to be like bumper cars. So home we went, and I instantly fell asleep.
I have felt left out this week, I have noticed this more and more over time. May I be a bit sensitive yes, but I know this is just a reality that I face. There is no denying it. Dave has told me that he would be willing to drive me to and from to try to get me out of the house if someone wants to do dinner with me, or just hang out, and that was months and months ago LOL. Like I said, a reality I face. It is one of the joys that happens when you can no longer do the things you use to.
A good friend has told me one of the best pieces of advice I have ever gotten, “Did they wake up intending to hurt you? If not, then let it go.” I honestly think that people just don’t realize their actions. I made my peace with everything. It doesn’t make it stop stinging though. Oh well. I will put a band aid over it. At least I am sleeping through pretty much everything. You can’t have any more tears if you are fast asleep.
On the other hand, yesterday, one of my best friends, Amelia, happened to have a bit of time off before she had to go to work. She came over to spend some time with me. She is one of those people that we can tell each other anything and everything, give each other advice, and just sit and talk for hours.
She will just come over and sit and watch a movie with me because she knows that is all I can do for the day. I always feel like everything is going to be okay when I see her, no matter what is wrong.
As of recently, I have been looking into essential oils, especially now that I am on my antibiotic break. My Dad has about a million of them, so he gave me some to try, and gave me a book to get some more information. I got some advice from a friend that is into the oils, and decided to give it a go.
I am extremely sensitive to the smells of certain oils, and I seemed to not have issues with the oils that I have tried. Clove, wintergreen, peppermint, lemon, lavender, and a few others. I have Frankinsense, which I have heard a lot of Lyme patients use as treatment, but I figured I would wait on that one, since I have just stopped treatment. I put a drop on each foot with the oils, and put a pair of socks over them before I went to bed.
Today something very different happened to me. Although I slept for 16 hours yesterday and woke up feeling like I had never gone to bed, felt feel flu-ish and am in a lot of pain, I felt as “normal” as I have been in years. Usually in the morning, when POTS hits me the most, dizziness, lightheadedness.
I sometimes collapse, black out, pass out, and have to take baby steps from the couch to the bathroom to do anything. Brush my teeth, lay on the couch, wash my face, couch. Hit my heart monitor button. Can you imagine having to do this every single day? Let me tell you, that shit gets old, real fast.
Today something happened. Finally a moment of blue skies.
I picked up my house a bit, vaccuumed, used my recumbant bike even though it was just for 10 minutes, actually took a shower (I skipped the hair washing but whatever), and started to clean my car out. Anyone that knows me knows that this is a daunting task. Haha. I have about 8 zillion receipts and bottles on the passenger side of my car, enough that you cannot remotely see the floor. I went to work, and had to go to the bank for Dave. I was determined to do it all.
These are things that so many things people take for granted. I don’t know if it was my disgustingly heavy protocol that I just finished, my new blood pressure medication ( I am finally beginning to lose the weight from it.. Yay!!) , juicing to detox, or beginning to use the essential oils. When you are doing so many different things, it is hard to pinpoint.
All I know is, this morning was a miracle.Telling Dave about my accomplishments I cried, happy crying, and it makes me so hopeful that someday I will get most of my life back. I have been taking it easy and know there is a good possibility I might crash, I am already ready for a nap, but I am so happy. I really think that things can and will turn around for me.
I recently finished my protocol and am on a little break until I go back to see my LLMD. The last days of Coartem although I was a lot less emotional than I usually am… not really sure why.. but I have heard of others that have the same reaction so I know I am not alone with that. Side effect or the Babesia stirring around, who knows.
The classic Babesia symptoms had definitely came to me, mostly in the form of sweating buckets, and air hunger. I did have to press my heart monitor button once because my heart rate was rather high trying to get ready for bed. To my surprise, there was no insinuations about doing drugs or partying, so that was pretty nice. Maybe I scared them a little bit. Haha. I can be quite unpleasant if you get on my bad side.
When it comes to pain issues, I had one that I haven’t really had. Especially during nighttime, it is common for my legs, feet, and knees to hurt, but for one entire day it literally felt like my right leg was going to explode. It felt “full”, if that makes any sense, and it was beyond excruciating. All day, all night. I kind of try to take pain as an optimistic thing, as it seems like it is a step in the right direction. That sounds like an odd thing to say, but it seems like a lesser of two evils. Severely neurologically impaired, versus pain issues. Not saying pain is a walk in the park by any means, but not having the pain I have had in the past few months and now having it, maybe it is a good sign.
I have had my moments with my tics, one ripping a big layer of skin off my knuckle. I was sitting at my office desk, and did my thriller dance, and my hand slammed against the metal underneath the desk. Ouchies. It is funny that now my coworker, as well as friends and family don’t even flinch when I have tics anymore. I don’t even think Dave notices when I have my tics, which occur at night more than anything.
They occur way less often than they use to be, and are nothing like they were. Every once in awhile he will joke and ask me if I have a question when I do my hand raising though. LOL At least we can joke about it. I think that is the least of my problems at this point. I can completely tolerate this issue more than anything else. It isn’t hurting me, doesn’t make me dizzy.. nothing. When they were bad, I would just avoid the movies, fancy dinners, and I probably wouldn’t be considered appropriate if I went to church. I never felt well enough to try at the point to do those things anyway, so I wasn’t really missing out.
See my “About Me” video if you have not seen my starting point before seeing my current LLMD. Trying to explain and seeing I think are two entirely different things. When people think tics, they think of fairly common Lyme “twitches”. This appeared to be full blown Tourette’s Syndrome. Two different things for sure. The turning point in helping this out was probably around my 5th month of IV treatment with my doctor.
My electrophysiologist appointment has been made for next month. Although it is still the same hospital that has been treating me poorly, this is an entirely different department, and I believe this is the doctor that believed me when I had told him my LLMD believes I have some form of dysautonomia. This will either be a positive experience, or a waste of time. To tell you the truth, I am not worried a bit about the appointment.
After having a brief discussion with Dr S about my blood work, he told me that it appears that I have hemolytic anemia. You know me, I went and did some research on the topic, and there is a lot of overlapping symptoms that I have been having, including dizziness, tachycardia, and in some forms an enlarged liver and spleen.
Dr J had told me that the enlarged liver and spleen was due to my Babesia infection, but that was before I had these new tests on my blood work. This will be another topic to bring up at my appointments with the LLMD and electrophysiologist. My list keeps growing and growing with things I would like to discuss. Yes, I will probably be that annoying and time consuming patient. At this point however, I feel like I really need to be.
I hope everyone had a great 4th of July! I had to work over the weekend, and although I was exhausted, sweaty, and my body was in pain, I made the most of it, and hung out with friends. I decided it was best to not go to the fireworks, as I know how I am in those situations. Between the possibility of having to do some walking to get a spot, dealing with the massive amounts of people, and of course the loud noises and bright lights, that is pretty much setting me up for failure.
That is just way too much stimulation for me at this point. Unless I had my wheelchair, seizure meds handy, sunglasses, and ear protection, it would likely set me up for an “incident”. With that giant safety kit, it really wouldn’t be any fun and more of a pain in the ass than anything else. Maybe next year. I think mentally I have a fear of the 4th of July anyway, as that is when I had my grand mal seizure two years ago and had my not so fun ER experience.
Dave and I went to our friend’s house for a BBQ yesterday when I got out of work, and other than a bit of dizziness, and my usual Lymie symptoms, I feel like I did really well, and felt a little more like me. There was plenty of places to sit so I didn’t have to stand around at all, which I think helped a lot. I was more social than I have been. It was nice to meet some new people, and catch up with some people that I haven’t seen in a long time.
Well, I think my body said “when” today. It is frustrating that even sitting at a BBQ gives me consequences, sometimes for days. Let’s hope it isn’t for days, and it will pass by tomorrow. I am also going to blame this on Coartem though, as it stays in your system for a decent amount of time, and it is a nasty herx.
Today was kind of weird. I felt alright this morning, well enough to actually take a shower and wash my hair. Sleeping seems to leave me drenched and it has begun to get hot out again, so I have been trying to keep up in the hygiene department for the past few days. I am sure everyone appreciates that, even though at the end of the day it really doesn’t seem to make a difference. At least I am trying.
I was having a hard time focusing at work this morning, but finally got my act together and managed to get a lot of reports I needed to get done all buttoned up. This was a big relief, since more and more have been coming in the mail, and it has given me a bit of anxiety since I like to get them done early, and I am pretty OCD about checking them to make sure they are perfect.
Just before I got ready to leave, I had this giant wave hit me. I went from okay (okay for me at least), to not okay at all. My stomach was in pain, I became really dizzy, and felt like I was completely overheated.
It was a lonnnnng drive home. I of course had that one car in front of me, that was feeling super generous and literally let every single car out of every side street that he possibly could. When you don’t know which surprise you may have, it felt like an eternity. I didn’t finish all my errands, so that was a bummer, but I needed go home, and TMI, do one of those sit on the toilet and hold a trash can times, and lay down for awhile.
I checked my heart rate while laying down, and it was 103, which really isn’t too bad at all. My blood pressure was higher, at 127/84, and I am running a temp of 101. Having the temperature is leading me to believe that this is likely Babesia. I signed up for a day of green juices to detox this week, ordered some aloe juice, and have been trying to drink as much water as I can. The dull pain turning into a slightly more stabby pain is making it difficult, so small sips it is.
I have been spacey, and just realized I have been home for awhile now, and had one of those spacey moments. Instead of my space out go-to of having the TV Guide going, I had a Spongebob marathon space out. Haha. I clearly need to take a nap. Once again, I am a little bummed because there were some things I wanted to do some things around the house, but I don’t think my body is going to let me. Resting has helped, but my body is so tired.
Tomorrow is another day, and it will be a day I will definitely focus on lymphatic drainage during my massage therapy session. Maybe that will help. Maybe it is just a case of the Mondays. 🙂
Have a good week everyone!
After a few days, my eyes felt a lot better and I could put my contacts back in. Yay. I am definitely investing in a new pair of glasses when I go next month. I feel like I need a bigger pair as with such horrible vision, I feel like I am constantly turning my head to be able to see everything and moving my glasses all around. Big snazzy retro frames are “in” these days as it appears. I will fit right in haha.
Saturday I slept. and slept. and laid in bed. Then I finally went to work.
I felt more positive than the day before. I goosefrabaad all the negativity away. At work, I had a hard time focusing and couldn’t believe how tired I was even with all the sleep.
We ended up having dinner with our friends in town. Simple but just what I needed. I made myself so much worse as being Columbus Day weekend without reservations, I did a lot of walking in and out of restaurants. My body gave me big “fuck you” in the means of sore knees and high feeling. An early night, once Dave and I got home we watched tv, I couldn’t tell you what movie I watched as I didn’t write it in my notes LOL But a much better day than Friday, other than feeling like I was hit by a bus. I’m tough I can deal 😉
Sunday was a rough day. I woke up realllllyy late. I couldn’t believe how long I slept. I felt like I had morning sickness. No puking, but that gross water in your mouth feeling, and dry heaving but nothing would come up. Oy. Zofran. ok not working. Another Zofran.
It was suppose to be my day off but I felt like working to take my mind off of it. The nausea went away but I was in a tremendous amount of pain and felt so loopy, like I was one of those string puppets and I could watch myself from above, struggling to enter a few invoices, or like that commercial for “Kayak” with the neuro surgeon controlling the guys brain making him type to do travel searches. You know which one I am talking about, right? Ok.. haven’t seen it? Youtube it so I don’t look like some crazy person. Hey now.. you know what I meant.
My drive home was miserable. Hot cold, hot cold. Windows down, AC, windows up, heat cranking’. Cheese and rice pick one already! as I got home I felt like a bomb went off in my body. Dave made me take my temperature as he could tell I was like a zombie. It was a little high, 99.4, but not terrible. My mouth was hanging open, catching flies, as I was rocking back and forth, back and forth in the kitchen. Ok. Snap the fuck out of it, cook dinner. Be normal. And I did.
I accomplished almost nothing that I wanted to do. I was kind of mad at myself for not accomplishing anything, other than washing my hair. I literally have two heaping piles of laundry that I need to fold, and my house needs a little extra TLC. I just wasn’t up for it after I was done with dinner.
Dave and I watched a movie together, some Halloween vampire movie on Sci Fy, I did a lactated ringer, and we layed on our couch together. My feet were much bluer than I have seen then in quiet some time so I put a pillow underneath them to try to keep them somewhat elevated.
It is funny to try to squeeze both of us on the couch that is about the size of a loveseat, but it worked because I was absolutely freezing so he warmed me up and the big fleece blanket.
No nausea, but all of a sudden I was STARVING. I wanted food. Lots of it. But it was slim pickins at our residence. So I finished our leftovers that were meant for the next day’s dinner. Oops!!
I stayed up really late as I just couldn’t get myself to sleep. Boo. But there was a Lifetime “Killer Profile” serial killer show on that I couldn’t stop watching. I like non-fiction so it worked out pretty well. I did some writing while watching my show. My knees, neck, and spine were radiating pain so any distractions worked out well.
I was feeling pretty scared about what was to happen as Monday would be the start of the second half of my protocol. If I feel like this BEFORE my protocol ,What is going happen this time around? I can do it. I’m awesome. Two more weeks. Breathe. 🙂
Kind of loopy as you can see. Bad day. Wasn’t too bad until I got home from my few hours of work and progressively got worse. P.S. I know I look like poo, my hair is dirty, and I have a massive rash on my chest.
I haven’t been like this in awhile, but you can see some improvement and changes in my tics, from my beginning video from the beginning part of my blog about November 2012, and also my video from the “About Me’ section. I more have a stutter now.
As you can tell my mind is a little shot. Will try to do an entry, as I don’t think sleep is in the cards for awhile tonight. Tomorrow is another day 🙂