#LivingwithLyme
Hoping that you and yours are celebrating our democracy!
Happy Independence Day, friends! I hope you are well. I can’t complain. I do need to update you on doctor stuff and health in general, but let’s leave that for another day. Today, let’s try and celebrate the good things in America. Let’s make a commitment to do better. Cheers!
We head back to work tomorrow after a week off. It was a much needed break. Looking back at the time span between January and March 8th, I’m only just now realizing how stressed I was.
It took 2 days to decompress. The stress had compounded, and I didn’t do a good job of handling it. I drove myself very hard to try to finish all work within the work day schedule; it is difficult to muster the brain power and energy to do much of anything when I get home. And so I pushed and pushed. But I was still bringing home planning and grading to do week nights and weekends.
I’m not sure how or why after 18 years of teaching I forgot that this job will break you if you let it.
And I let it. By the time this break started, I was a complete mess and many symptoms were flaring up, especially the Neuro issues and the pain.
I did spend time on work – about 5 hours- this week. It was on things that have a deadline asap. But I limited the time I spent. Because, if I had finished everything else, I would have worked 4 days of this break at least. No lie.
Of course this means that this coming week, when I’m back in classes, that I’ll have 150 research papers to grade, the marking calendar to finish, along with grading the writing and quizzes we complete this week.
It will get done. I just need to pace myself better. My health should be my priority, and I let that out of my sight. Time to get back on track.
I hope you’ve had a good week and that signs of spring are evident! Happy Saint Patrick’s day, friends! 💚💚💚-b
Last week was crazy and made me crazy!
I wasn’t sure I would make it through last week. It’s almost Spring Break, and I teach high school dual credit English courses. We are in the midst of our research unit. Must I say more? Truly, it is the unit I love and despise the most. I love it because I get to talk with students about their interests, what they think about topics, and their ideas. I despise it because students usually have not been required to do any kind of research in the past (or if some, very little) and so there are so many things they need to learn that it becomes very overwhelming. Especially when there are 145 of them and one little ole’ me.
But every year, I consider changing up this unit, and I just don’t. One of the most challenging things for students is that they get to pick their own topic and narrow it for the paper requirement (take a position). This really throws them for a loop. Choice? What do I want to do? I have freedom? While I could just assign them all the same topic such as: Take a position on whether we should continue to use the death penalty in Texas, I just can’t do it. I feel like doing it that way just isn’t authentic.
And so here I am. Tackeling so many different topics from all kinds of perspective which I love/hate. Plus, this past week, my brain has been very, very jumbly. I don’t quite know the exact word for it. But while on a good day I still struggle with cognitive issues, word loss, brain fog, last week it hit an all-time high of barely functioning. And while I am a little worried, I honestly think it is worse right now because of all of the stress.
A new symptom though that has popped up, is changing aroung letters. That hasn’t happend to me before. Yes, I can’t remeber certain words many times. Easy words like door or watch. But this past week, when I would go to type or write out a word, I would begin to jumble the letters. Strangest thing ever. I would never get further than about 3 letters in and realize – What the Heck- but again, I’ve never had this before.
And of course, between struggling for words, short term memories, and spelling correctly, the angst from that caused more stress for me. I am fully aware of what I can’t do. But no matter ho hard I try to get my brain to work correctly, it doesn’t. To some degree, it’s easier to be at work with these issues that anywhere else. Sounds a little cray, right? But I think that after 18 years of teaching, that environment I have to some degree mastered in a way I can function and cover up my brain issues.
In other areas, not so much. My husband has been frustrated with me because I can’t communicate well. I sometimes don’t remmeber things he tells me. I can’t speak well. I told him the other day that I was really struggling with brain issues and that it was way worse this past week. He said, “Well, it’s nothing new.” And while I think he was trying to be nice and blow it off, I won’t lie; it really hurt my feelings. But maybe it’s the truth and one I don’t want to hear. I see one of my doctors March 11th and I’m definitely bringing these issues up.
Anyway, back at it tomorrow. The weekend helped a bit, but my brain is still not back to a good place. I’m hoping during Spring Break, my brain will get back on track. Or at least seem that way to me so I can pretend I am doing better! I hope your week went well.
Take care – Belle
The brain is still not working “right”
Hi my people. I know, it’s been a minute. I’d like to say “Oh, hey! I’ve been feeling SO much better that I am off having mad adventures!” but that isn’t the reason for my absence. Unfortunately. However, it isn’t because I’ve been so bad either. The honest truth is that, well, I’ve been doing my best to finish up the school year and cross the finish line for 2017-2018. And here I am!
Lately, the muddled brain is back. I guess it is brain fog, but it feels different than when I first was sick. Back then, my brain didn’t and wouldn’t work at all. It was a struggle to read even and that was despairing. I couldn’t form thoughts, my short term memory was null, and trying to say basic words? No way. It was frustrating and scary all at the same time.
Slowly, and I mean soooooo slowly, my mental skills have been improving. Reading has become easier, although I still struggle with longer texts, and I have started to join conversations again without fear of completely forgetting my train of thought.
But, recently, maybe in the past 6-8 weeks, things have started to sneak in and/or get worse when it comes to brain function. It’s worrisome. Yet, I wouldn’t describe it as “fog.” At this point, it’s more a jumbling of thoughts in my brain that I can’t sort out. I concentrate and try to spread the thoughts out or I try to separate them into like categories, but I just cannot.
It’s more lik I have 50 thoughts going on in my head and when I try to follow one thought logically and progressively, I just cannot. So the thoughts spin and spin and then maybe, if I am lucky, they just hit a wall and stop for a bit. However, none of this is helpful when trying to actually do something that takes any concentration, say like, Problem-Solving. OMG. And it is frustrating becuase behind all of the basic shallow ideas and thoughts I am able to have and to follow to get me through the day to day, I know there are more in-depth things going on in this brain of mine that are just inaccessible.
But otherwise today, I just want to say HI and get back to it with you. I hope your all is going well. I hope you have had some, I mean many, joyful moments. – belle
Sometimes, you rock it!
Howdy out there! In our neck of the woods, we’re enjoying the 60 degree weather and the World Series brouhaha. We’re also hoping the Astros win!! Fingers crossed.
So, I’m off of all antibiotics now for Chronic Lyme. It’s been about a weekish. In the past 10 days, I have been feeling the fatigue creeping back in. Not drastic by any means, but I can feel its weight. By about 1 p.m. in the afternoons now, I’m pretty much done and I’m ready to go home and rest. A few nights this past week, I have gone to sleep by 7 p.m. While I’m not noticing a lot of other symptoms, I’m still worried and pensive about not being on medication. I did blood work last Tuesday, so hopefully the results will be back this week and I’ll hear from my doctor.
I know I shouldn’t worry and that “it is what it is” but easier said than done. It’s hard to find a balance between ignoring and obsession! I am trying to be hyper-vigilant without being a freak. Hmm.
Work is going well. My students are great, and I think we all adjusted after Hurricane Harvey postponed our start for a few weeks. It still feels weird though that Thanksgiving is just 3 weeks away. How did that happen?
Anyway, being a teacher and one that is chronically ill, 5 performances daily can be extremely difficult (teaching is a demanding job even when one is healthy!). I work hard at projecting an energetic and positive image while in the classroom regardless of how I may be feeling. My audience is 15-17 year olds, and they can sometimes be a very tough crowd, even on a good day!
But here’s a note I received in my mailbox from one of my students on Friday:
“You’re kinda cool, I guess.”
I literally laughed out loud. Really, this is like receiving an Oscar in my line of work. I’ll take the wins when and where I can get them.
Stay kinda cool, my peeps. Have a great week! – b
Hi all!! I know it’s been a skip and a beat. The aftermath of Hurricane Harvey ate up much of my time, then school started. Starting school 2 weeks late has thrown things off and so, I admit, it has taken me awhile to get back into the swing of things. I honestly didn’t realize that it had been so long since I had posted.
I hope this finds you and yours well. While the first day of Fall has come and gone, I can attest that it certainly has not arived whatsoever here in Houston much to everyone’s dismay. In fact, yesterday, the high was 90 degrees. No bueno. Yes, the shadows are changing, birds are gathering, and clouds look “fall-like” and yet, it is no cooler. I believe there is a cool front rolling through this evening (LIES!), but I don’t dare to look at WeatherBug and be disappointed again.
But hey! I still have Chronic Lyme disease! However, the months of July, August, and most of September were the best I have felt in the past 4 years!! It has been like the clouds in my brain cleared away and the sun felt brighter and life was more beautiful. Sincerely. When I saw my OT (out of town doc) in September, she asked me what I thought was working and making the difference. Here’s what I told her:
I started back to work in mid-August, then the Hurricane/flooding, then 2 weeks off, then back to work. This is week 6 of being back to work full-time. So far, it hasn’t been bad. But I can start to feel a change in my body. It feels like I’m slipping somehow, albeit very slowly.
At my OT doctor appointment in early September, my doctor decided that it was time to start weaning off the antibiotics. I was hesitant but I also know that we have to see if I can manage without them. I have been on Rifampin since March and on Ceftin and Zithromax since June. I eliminated Zithromax first, then Ceftin, and this is my last week on Rifampin. I felt alright without Zithromax. But the week I stopped Ceftin (about 3 weeks ago), the daily headaches seemed to return.
At first, I blew it off thinking it was becuase I had a cold. But I can say for sure now that the headaches are back. I’m also feeling a little less energetic. Again, I doubt myself and make excuses – I’m back at work, I’m not sleeping as much, I’m…..but I know deep down that it is Lyme related.
I’m giving it this week, and then I will contact my OT doc. She said to let her know if I start having symptoms again as I come off the antibiotics. Of course, I am having all kinds of thoughts, worries, emotions about this but that is for another post. 🙂
I just keep telling myself not the dismiss ANYTHING nor any SYMPTOMS. I have to trust my gut on everything and that is OK. Lyme became CHRONIC in my system because it was left to go bonkers for years in my body.
That ain’t happening again. Not on my watch.
Peace to you, friends. Until next time xxoo – Belle
Happy Sunday, my people! I hope this finds you well and happy. So, I completed my first week back to work following our summer break. So far, so good. And granted, there are no students until August 28th. That may prove to be a different story. Of course, I may be running on a tad bit of adrenaline right now, what I have of it. I’m trying to pace myself if that is even possible. I’m not sure if it really is most of the time.
This past week was a lot of sitting and listening. It was also a lot of being around peoples and many of them for about 8-9 hours a day. The first few days, I struggled with over-stimulus. I also struggled with so much sound. About a year into my Lyme treatment, sound and light sensitivity became a real issue. I had never experienced either of these in my life so at first, I thought I was just being extra paranoid about my health or something. Then, I asked my doctor about it and she said both of these are Lyme related! I am not overly sensitive all of the time, but sometimes they both can really wreak havoc. At a couple of points throughout the week, I just had to go and find a quiet place to sit for a few minutes. I also utilized my migraine glasses for light sensitivity. I sincerely LOVE these Axon Optics glasses!
We have another week of professional development on our campus. There isn’t much time set aside for working in our classrooms which is really just too bad. I’m not that stressed about that aspect because I know I can get it done in time, but I feel for new teachers. I am sure they are feeling mega-overwhelmed by now as I remember I did the first year I taught!
I am worried about sitting for so long every day in not-so-comfy-chairs. In fact, they are really uncomfortable. I figure I will get up and move as much as I need to in order to keep the fibro at bay as much as possible. I also worry about my brain functioning correctly. I seem to be ok in the mornings but depending on many things such as sound, lighting, peoples, pain, etc., things start shutting down up there and I just feel like I am running into a wall every time I try to have a thought. I hate that feeling but I’m trying not to fight it. It doesn’t help to get mad or stressed about it. It is what it is. I am merely trying to use my brain as much as I can when it cooperates! You know what I mean?!?
I hope you had a great weekend. And here’s to the week to come: May we all have a smooth and pain-free week. Peace – B
Returning to work….it’s a hard decision!
Honestly, I’m not sure I wrote about trying to make the decision about whether to continue working or not this past spring. I am a high school teacher in my 17th year now. This past March, my health and mental health were at the breaking point, and I had to go on a medical leave. That alone was tough. I was out lof work 3 weeks (one week was Spring Break). It was much needed time off to rest and get physically to a less fatigued state, and I was able to make it through the rest of the school year when I returned from leave.
But taking a medical leave definitely made my husband and I have some serious and challenging conversations about whether I should continue to work or not. We’ve actually been talking about it for a couple of years now. But finances weren’t where we wanted them, savings wasn’t enough, we have a daughter in college….blah, blah. You know it all. Yet, in March, I was so bad, everything was so bad, that those things just weren’t that important anymore. If I had to stop working, we would deal with it.
And yet. After some discussions with my husband, my family, and co-workers, I have decided to return for this school year. I’m worried though. And I may be putting myself into an awkward position if I have to leave in the middle of the semester or at semester time. I agonize over leaving my students like that, over possibly leaving my colleagues like that – basically in a lurch. But, work told me that I need to do what I can and what I want and if it comes down to a decision such as leaving then I will have to do it, and it will work out. Bottomline is they would rather have me there for as long as possible then have me resign prematurely. This in itself is a relief of sorts. I know I’m replaceable; it isn’t that. I just don’t want to cause issues for others. Teaching is hard enough when everything is going smoothly!
Once I made the decision to go back, I was excited. Then, I transitioned to feeling freaked out. This summer, my health has improved. I don’t know if it is the new antibiotics I am on or my additional thyroid meds or a combo but it has been a real JOY! Yes, of course, I am off for the summer and so I can rest, etc. when I want, but I’ve been doing this for the past 4 summers and I can tell you for certain, this summer has been different. I’ve had days and weeks of energy levels I haven’t experienced in YEARS. YEARS.
With this new found improvement in health, I am even more anxious now to return to work. Weird, right? I’m afraid I will lose this feeling, this energy. I’m fearful I will end up feeling so overwhelmed and fatigued that I can’t do anything outside of working (and even that became impossible in March). I don’t want this little victory for my quality of life to go away or be whittled away somehow.
I don’t know how I am going to handle the 8-9 hour days. Many of my physical symptoms have improved but what if I go into a flare? WHAT IF? I know I am making myself silly by worrying about thinsg I have absolutely no control over. I logically know this. I keep telling myself that I just have to take it literally day by day. Step by step. We’ll have to see how it goes. We have a Plan B…kinda.
Teachers start back tomorrow. We’ll have a few weeks of professional development and then students are back August 28th. I’ve only ben anxious since Wednesday. Off and On….all of today. The alarm is set, I have my bag packed, there’s not much else I can do, right?
I want to be excited, and I am. I’m beginning my 17th year of teaching, my Awesome department chair gave me the classes I want, the schedule that best suits my health needs, the team I want to work with. There is absolutely nothing to not be grateful afor and about! My biggest WISH is that I am able to complete this school year in a healthy state.
Thanks for reading and for listening, dear peoples. Peace – Belle
Where you been?
What’s new in my world? It’s been a tough spring, I won’t lie. In March, I had to take a medical leave from work. I was just dragging at everything, missing work days, spending every minute at home laying down. It truly was torturous. I couldn’t manage to gain any ground at all even after resting all weekend long.
It was depressing as hell. It was like watching a movie. You could see what was going wrong but no control in changing it. I was just a zombie. The chronic fatigue was impenetrable. I was out of work about 3 weeks. I tested positive for Lyme and EBV again (not new infections but chronic ones) and my doctor put me on antibiotics. I was a little better when I went back at the end of March. It was still a challenge daily to get through each day but it has progressively improved.
I’m still on antibiotics. I’ll have another follow-up on June 28th, so we’ll see. School is out for the summer and that helps too. I considered not working next year, but I’m hopeful I can gain ground this summer and honestly, I’m scared to not work. I know, it’s weird. It’s all very emotional and right now; I am planning on returning to work in August.
I’ll post an update about my doctor visit I had in May with my doctor out-of-town. She’s offering up some treatments being done overseas that sound both promising and expensive. I’m trying to do some more research. More to come and soon!
I hope your summer is off to a great start! I’ve missed blogging, and I look forward to reconnecting with you all!
Peace – b
