Muddled Brain

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

 

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Update from ReadBetweentheLyme :)

Howdy Friends! It’s been awhile, I know. This year has been off to a kinda crazy start. In order not to bore you, I’ve put things into bullet points:

  • My husband had the flu over Christmas break. It lasted about 10-12 days. I tried to make sure he was as comfortable as possible. I also tried to be very patient. He recovered in time for New Year’s. 

  • School started back up, and it’s always a challenge and stressful after a longer break. I mean no one wants vacation time to end!

  • We offered to house our 22 year old nephew who was in-between homelessness and rehab. He stayed about 4 weeks. It was very stressful and not such a good experience. 😦  But, he did get to rehab and is doing 30 days at least.

  • Over the MLK weekend, we had freezing temperatures. Then, we had sleet and ice. We had 2 days out of school due to weather. I won’t lie, it was pretty fun to have “snow days!”

  • I had a severe back pain attack the same week. I ended up taking 2 days off of work because I could barely move. It was awful. My doctor says it is degenerative disc dsease. I ended up having another flare just a  few weeks after this one. I’ve considered going to a back specialist, but I am so over doctors right now!

  • Towards the end of January, my husband caught some upper respiratory infection. This lasted about 7 days. Since we are both teachers, it isn’t difficult to catch the latest crud going around at school. And believe me, there’s been a lot of germies circulating this year!

  • February was a month of Seattle rain and dreariness but in Houston. There was maybe one day that we had some sun? It was seriously depressing.  We celebrated my mom’s birthday, but that was about the only fun thing happening!

  • Spring break just started and my nephew spent 2 days in the hospital with a virus. He is on the mend now. 

  • About 10 days ago, I had a rash start up (again!) on my left eye. It lasted all week and then seemed to go away. But the Saturday, the rash started on the top pf both hands and on my neck. From there, it has popped up on legs and arms. It is so much worse at night. I’ve been downing Benedryl. The last time this happened, my LLMD was clueless (she made me treat for bed bugs which it is so NOT) and the dermatologist said it wasn’t “skin lupus” and sent me on my way. I’m just aiting it out because again – I am so over doctors right now!

  • The weather has been beautiful! Temps are about 70 and it is sunny outside. 

  • I had a list of a few things to get done during Spring Break and I have about 140 research papers to grade, but right now, I am just going to take it easy. 🙂

shrugging

So that is a really quick update! I see one of my LLMDs this Friday, but I don’t expect much at all, if I even see her personally. I’m not trying to be bitter but I am just a little. I’m very grateful that I have my holistic LLMD that I see every 4 months, otherwise, I just don’t think I would have made the progress I have this past year. 

I hope you and yours are enjoying your days. Best to you.

Peace – Belle

You’re Kinda Cool

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?

shrugging.jpg

 

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

I Still Gots the Lyme!

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.

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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:

  1. the additional thyroid medication she put me on in May,
  2. being off of work (I had all of June, July and half of August off completely),
  3. and maybe the combo therapy of antibiotics ahe put me on in June.
  4. But really, I don’t know for sure.

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.

Pumpkins

 

Peace to you, friends. Until next time xxoo – Belle

 

 

One Down, and I don’t Know How Many to GO

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!

Nooooooo!

 

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

Heading Back to Work Very Cautiously

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.

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Source: pixabay.com

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

What’s the Sitch?

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.

Sick and tired

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

I found this book to be the most helpful when I started my Lyme journey.

 

Hey Tired, Meet FATIGUE

Over the summer, I’ve felt like my cognitive issues or the neuro Lyme, have improved. In June, my LLMD here in town (I have another doc out of town) started me on a supplement, ATP Fuel. Since being diagnosed with Lyme disease in March 2013, severe fatigue has been one of my major, and quite consistent soul crusher, er, I mean symptom.

It’s continued to be a lingering symptom. Now, when I say fatigue, or severe fatigue, I don’t mean “tired.” There is a chasm of difference, one I never understood anywhere near well enough BLD ( Before Lyme Disease).

You know what makes me “tired”? Staying up too late, doing too many activities, physically or mentally exerting myself ( this excludes Pokemon Go).

But fatigue? A whole other ball game, my friends. Being “tired” means you need sleep so you sleep and wah lah! You wake up feeling like a million bucks! You are King of the World!

But with fatigue not so much. Instead, waking up is a never-ending continuation of the fatigue you’ve been feeling for the last 3, 6, 9 months, or even years. It’s like a prison sentence that you don’t even have enough gumption to get angry about. It’s like being in a cave without light. I could go on but basically FATIGUE is not being “tired.” Fatigue sucks the f-ing life force from your body. And the most depressing thing about chronic fatigue (well, there really is a list of things), is not knowing when or IF it will end. No matter how much rest and how little of everything else, that’s always the question. Will it Ever End?

I’ve written about fatigue before HERE and HERE. Hopefully, these posts can give you an inkling of the severity of the fatigue many Lyme patients as well as many chronic illness patients experience.

Happy belated Martin Luther King day!

Peace -b

Reporting for Duty

Hello my peoples! Yes, I have been so MIA these past 3-4 weeks, and I will tell you, I miss blogging. Yet, duty calls (code for JOB). Work started back up earlier this school year (as in 10-12 days earlier) and right now, it is taking up almost every spare minute I can manage along with being chronically ill. Although, and I am probably forgetting something major, I feel like this weekend will be a time for me to catch up. (Please, God, please!)

My Post Summer 2016 Life thus far: I am teaching all dual credit (high school/college) freshman composition classes this year, which is very cool, so this makes for approximately 132 students total across the five classes I teach daily. Awaiting my undivided attention in a cubby on my kitchen table are about 110 essays to grade, add to that about 75 online responses to a novel we read..the picture is becoming clear, no?  To my credit, I did grade about 25 of these yesterday along with another 25 responses to another piece. And grades are due this coming Friday. You heard, correctly. And my Gradebook is blank at this moment. I believe, or rather hope, that I am just going crazy right now because, HEY, it is the beginning of the school year, and quite honestly, I blank out when it comes to both the beginning and the closing of any school year every.single.year. Sixteen years later, I should know exactly what to expect.

My Post Summer 2016 Health thus far: My health is holding up ok so far, but I have really been pushing it at every turn, and I know I need to get balanced ASAP, or there will be fallout. Is crying to and from school considered fallout? Maybe. Yeah, so that’s been happening. Not every day, but enough for it to be awkward. And not because I don’t want to go to work or come home; it’s just at certain points in the past 3 weeks, my body and brain just feel soooo overwhelmed and tired that I can’t even have an appropraite emotional response to anything. Mental capacity has shifted into Overdrive, and it is causing memory issues, I know it is the neuro-lyme. Or as stated above, I am just going crazy right now. *Note the key word is “now.” LOLs

The picture above is a perfect visual for how I feel at the moment! (from a really cool website http://www.firstcovers.com). Thanks for hanging in there with me. I promise I will get a decent and somewhat interesting post up as soon as I can get my head above water (please send positive vibes my way that this will happen for me THIS WEEK). As always, I appreciate your stopping in to read and comment. Drop a hello if you can. I’m missing my biggest bloggies fans. Have a fun and safe rest of the holiday weekend. BTW, I can’t get that Counting Crows song, Miami, out of my dang head! 🙂 Peace-B
 When summer opens, I see how fast it matures, and fear it will be short; but after the heats of July and August, I am reconciled, like one who has had his swing, to the cool of autumn.   –Ralph Waldo Emerson

The Brain Says No More

Hi out there! I wrestled with writing two paragraphs about how work is going and then, bam, they were gone. Since I cant muster anymore energy, it will have to wait. Maybe the disappearing text is reflective of my segue back into work? LOL 

More to come on how work is going. Right now my Lyme brain cannot do anymore, so I bid you all a goodnight. Peace, my peeps – B