chronic illness

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

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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

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Heading Back to Work Very Cautiously

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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

“If I Only Had a Brain”…..

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So, The Wizard of Oz and Lyme…….

Say what?  Ok, just work with me here…..

Lyme bacteria can enter every single system in the body. Every. Single. System. 

This summer, I’ve been experiencing some really great days, in a row!!!, and then I’ve also experiencing symptoms that come and go, day to day, and sometimes, hour to hour. I think I’m noticing it more because I am off of work right now. I’m not sure. 

I’ve been wracking my brain to think of a way to explain the comings and goings of the myriad of symptoms. There really isn’t a good analogy. Not one that is really accurate nor one that people can relate to, at least not one I’ve thought of!

But I woke up the other morning so freaking stiff I could barely get out of bed. For reals. And I thought, man, I need some of that oil the Tin Man uses in The Wizard of Oz. If only!

Thus, my very weird and strange comparison began to manifest. Just to start, so I don’t scare (haha Scarecrow!) any of you off, I’ll only talk about The Scarecrow today.

Here goes nothing!

Lyme Disease and The Scarecrow –

The Scarecrow longs for a brain! He’s searching for a way to get a brain as do I much of the time! While my memory has improved to some degree, I am still having word loss such as trying to find the word “dishwasher” in my vocabulary. Seriously. Easy and well-used words are out of reach at any given moment.

I have now resorted to saying “you know, that THING” or “the dohicky.” It isn’t pretty.  I also periodically (and more than I would like to) have issues with just plain old logic. I try to follow a thought in conversation or in a written piece, I’m doing well, and then POOF. All is gone and I either have to start over, asking random and ridiculous questions of the speaker, or I have to continue rereading the same section of text over and over. Honestly, many times when this happens, I just give up otherwise I will work myself into a stupid anxiety seesh.

So, indeed, like the Scarecrow, I need a brain!  Now, in our beloved story, the Scarecorw has a brain all along; he just needs to realize it and access his brain. In time, I hope to do the same!

I’m off to get the thing-a-ma-jig! Have a great weekend! -belle

 

Celebrating 3 Years Here at Read Between the Lyme!

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Howdy! I just realized that this month completes 3 years of blogging here at RBTL! How awesome is that? I appreciate everyone who subscribes, reads, shares, comments and all the other cool things you people do! THANK YOU!

While I realize that I haven’t been posting as much, especially this summer, I am going to keep blogging. It has given me an outlet for writing and for connecting with others that I hadn’t imagined. So upward and onward, right?

Looking back at the past 3 years of posts, my focus has been on my personal journey involving the attempt to deal with a chronic illness. I promise to try to be better about working in some other things that maybe are not Lyme related. I can imagine just reading about How I Am Sick gets pretty boring.

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So on that note, here’s a little tidbit about me you may not know. My profession is education. I will begin my 17th year (how is this possible?!?) of teaching this August. Too soon might I add. While in college, I really didn’t know what I wanted to do. I flip flopped between Journalism and Psychology as majors. And I went on to get a Master’s in Composition and Rhetoric.

After working a few years at Starbucks as a store manager, I went through and Alternative Certification Program to acquire my Texas Teaching Certification. I started my career teaching 7th grade Language Arts. At this point, I am working with dual credit students who are earning both high school and college credit simultaneously in high school. Oh, and I teach English (or Freshman Composition as dual credit). It really is a great position!

Originally, I was interested in teaching community college, but those full-time-with-benefits- positions are all but over. I did adjunct for awhile when I taught middle school, but then I opened a new school in 2008 as the English Department Chair, and I just couldn’t manage it all.

I am no longer the department chair as Lyme has interrupted me in so many ways. However, it was a good ride, and I learned so much. And since I work at literally the Best Campus Ever with the Best People Ever, I have been able to adapt to a new norm as it applies to “work.” At this point, I’ve been at the same campus for 9 years. We are celebrating our first decade this year.

Teaching definitely ain’t easy. But I can’t imagine doing anything else. I’m grateful that I have been able to continue working these past 4 years after entering treatment (finally!).

Well, so there you have it! A little reveal from me that maybe you figured out before (because I do have the smartest followers!) or maybe you didn’t know at all.

Again, THANK YOU for supporting me as a blogger these past few years. I am very grateful.

Peace –  Belle

 

Gettin My Slothy On

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There really is a term “gettin slothy!” Who knew I would be so cutting edge with the urban slang! Go me!

Anyhoo, the past few days, I’ve been in this mode. I feel a bit guilty, but I truly feel like doing nothing. I’ve watched a lot of Netflix but that is all I can be bothered to do. No worries though; I have been feeding and watering the animal menagerie. They all seem quite content that we have been laying around in the AC watching copious amounts of television.

I can’t seem to get motivated! UGH. I would blame it on the Lyme but I haven’t been feeling terrible. Yes, I do have to rest off and on especially with the new meds I’m taking but not for 5 hours straight! And overall, I’m feeling better this week then I was last week, so what gives? In my defense, my husband has been really busy all weekend with some side projects and so I’ve been mostly alone. I don’t mind it, I just obvioulsy can’t take any initiative by myself!

tired
Not now, please!

I tried to be better today. Although I told myself I would complete an online class for work and well, that didn’t happen. But I did do some laundry and a few other household chores today so can we call it a “productive” or rather “not wasted” day, officially?

I mean I guess a positive of this situation is I am realizing I’m gettin slothy. Last July 4th, I wasn’t feeling very well at all. In fact, my husband went to a little get together, and I just couldn’t due to symptoms and fatigue. So that is good news. I’m not sure if we are up to anything tomorrow honestly. Maybe a movie. Maybe a meal out. Not sure. But either way, this summer, I will be able to do some stuff if we decide to which is a really nice change, no doubt.

On that note, I hope that you and yours enjoy Independence Day tomorrow (for those fellow Amercians) and I hope absolutely everyone has a great week! Take care, friends.

Peace! – Belle

 

Duck, Duck, Doc…#1 The General Practitioner

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*I’m now in year four of Chronic Lyme disease treatment. I wanted to share my journey in trying to get and find a correct diagnosis (not my treatment pilgrimage mind you). Please know that my experience has actually been much easier than many other Lyme patients. Some visit 20, 30, 40+ doctors trying to find a root cause for their symptoms.

I searched for answers for my illnesses from 2009 – 2013. I had many doctor visits with many different types of doctors, some simultaneously. However, I am trying to do a separate post for each doctor. If only all 7- 8 doctors would have paid attention to one another and to me, maybe I could have started on my healing journey faster, but that’s probably not realistic at all, especially in the Western Medicine sphere.*

#1 – The General Practitioner (my doctor since 2006):

The earliest I can remember having symptoms that then continued on for years was in the fall of 2009. I was starting to have other than normal tiredness and that fall, I got the “flu” and I was sick for several days. I remember sitting out on the deck in the sun hoping I would feel better soon. I’m not sure why I remember that moment but I do. I think I realized in the back of my mind that something just wasn’t quite “right.” I was wishing I could stay out of work just one more day to rest. 

The flu like symptoms continued off and on as did the tiredness. When I went to my family doctor, a family practitioner, she of course blew it all of to the daily grind. To working a lot. I didn’t have the flu anymore and nothing else was wrong (supposedly). She told me that my thyroid was borderline but did not send me to an endocrinologist. “We’ll just keep an eye on it,” she said. I got better so I didn’t worry.

But a few months later, I was back to the tired. I went ahead and decided to go to an endo doctor. After blood work, I was diagnosed with Hashimoto’s disease. My thyroid wasn’t working properly. My GP said “great” and we moved on. I felt a little better once my thryoid meds were adjusted. I also thought “great” and moved on. On the summer of 2010 I had a weird rash on my legs. My GP told me to get someone else to do the lawnwork. I think she gave me some cream and it cleared up. No biggie.

But then in the fall of 2010, the tired was back. I felt sluggish. At this point, I was diagnosed with reactivated Mono. I tried to ask questions like “why” and “how” since the blood work showed I had in fact had Mono before (I had NO idea that I had Mono when I was 25 (in 1995) because it was in combination with a horrible strep infection so the Mono was missed and never diagnosed!). My GP said to stay hydrated and rest. I took a few days off of work which didn’t help, and then I got back to it. It took a few months to feel better but I did eventually.

Hanging

After that, the cycles continued. Between 2010 and March 2013 (when I was finally diagnosed with Lyme disease – CDC+), I had “reactivated Mono” about 6 times. My GP was pretty nonchalant about it. But I wasn’t. My research revealed that usually a person has Mono once in his lifetime and then builds a resistance to it. It supposedly doesn’t reactivate!  Everything I read said that reactivation of Mono (Epstein Barr virus) “rarely” and “hardly ever” happens. And with every cycle the symptoms seemed to last longer. Chronic Fatigue was starting to be thrown around but the GP wasn’t willing to diagnose me with it. On the flip side, according to my endo, my thyroid was working nicely now on the medication prescribed. So what could be going on??

By the fall of 2012, I was exhausted. But I was getting married in November, I was chair of a department of about 40 people, I was sponsoring clubs, etc. I just figured it was all par for the course. Oh, and I trusted my two doctors, the GP and the endo. Yet, on the 6th diagnosis of “reactiviated mono” in October of 2012 and just a few weeks before the wedding, I’d had enough. I pushed my GP on the WHY was I continuing to experience Mono??? I wondered also WHY she wasn’t more concerned? At this point, I figured my immune system was not doing a good job, but WHY not?

She finally and not very willingly, referred me to an Infectious Disease doctor. My appointment was not until January 2013. But that’s another post, my friends!

Conclusion: my first doctor, my GP, did not help me get to the root of my issues.

Coming soon – Duck, Duck, Doc…#2 The Endocrinologist. Stay tuned!

I hope your weekend was a calm and joyful one. -B

What’s Going On?!?

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WOW! So my out of town doctor (OTD) at my last appointment in May looked over my labs (the ones where my ITDoc said my thyroid was “fine”) and said the numbers weren’t where we should have them. OTD then added more thyroid meds and told me to start tirtrating up from 5 mcg and to continue to add another 5 mcg weekly until I hit 20 mcg. OTD told me to stop at the dosage anytime I began to feel better and more energetic. Since the middle of May, I have added the thyroid meds and maxed at 20 mcg around May 28th. Again, this is medication in addition to the Synthroid I have been taking for years on a daily basis for Hypothyroidism.

With the first 5,10, 15 additional mcg I really didn’t notice much. Maybe a little more pep but nothing too noticable. Then, I hit the 20 mcg. Again, not much felt different the first week of this dose. But after about 2 weeks, BOY HOWDY! This past week has been seriously amazing.

Some things I’ve been able to do this past week that I haven’t done for months on end……and that I definitely haven’t done all in one week for YEARS are: Go out for dinner with friends, go to a movie (at night!), go grocery shopping (I am not kdding), go to lunch with a friend, mow the entire yard (like an acre), clean the house, do laundry, cook dinner, go do errands and actually enjoy said errands! Stay upright most of the day! I also have added small increments of excercise on my old elliptical machine.

No Way!
Source: Netflix GIF

I’ve had the best time! I know that most of the above a normal person can do without much thinking about it, but for me, it has been something else. Have I still had some joint pain? Yes. Have I still hit some energy walls? Yes. Am I not working right now? Yes. But still!!!

Now granted, I probably have absolutely no idea what “normal” is anymore. After 4 years of treatment and about 7 years of being ill what I can remember is most likely skewed. But I honestly haven’t felt this good and full of this much energy in….well, I have no idea how long. While I have had some hours and maybe a few days sporadically over the past year where I felt well enough or I had enough energy enough to do a few things, I have never had an extended period of time – a whole week! – where I felt like this.

I’m savoring every single minute, my people. Every. single.minute. My husband says we’ll take what we can get, and I say Amen to that. I know I’m not “cured.” I also know that my being off from work for the summer helps. I also realize that I’m starting a new treatment protocol of combination antibiotics and high doses of those antibiotics in just a few days. There will be fallout from this treatment. I will have to detox, to deal with new symptoms, to handle herxes. I know. I know. The thought  of lsoing this momentum makes me want to not go ahead with this protocol. But, I need to try it. I’ve never been treated with combination therapy and if I’m going to do it, the summer is the best time for sure.

But until I start the new meds, I’m going to kick it up as much as possible. I’m going to try to squeeze in everything I physically can while I feel good. So I’m off to do some projects. I hope your weekend is wonderful. And a Happy Father’s Day to all you dads out there. Take care of yourselves.

Peace and joy- Belle

 

 

What’s the Sitch?

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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.

 

Lyme and Relationships

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Mary_Oliver_quote1

So, I have totally steered away from discussing and writing about the reality of trying to have a marriage, well any relationship really, while dealing with chronic Lyme disease. Why? Because it is TOUGH. In most cases, I feel like a failure and I feel guilty. I know, I know. It isn’t my fault I’m sick and I don’t choose to be sick. But still. All these feelings get tossed around. Many times, I feel like my husband and I just can’t speak the same language.

He’s been awesome, don’t get me wrong. But after 4 years of this illness and not a lot of progress, I think we are both just stuck in how to move forward. How to be more accepting of the chronicness of my illness, and then how to accomodate what comes along with it. We aren’t doing too great of a job, honestly.

I guess like Trump said about being president, “I thought it would be easier.” I thought figuring things out as a couple would be easier than it feels like right now.  We are talking and discussing all kinds of things so I think that’s a good sign. But I’m still scared sh**less and freaked out about it all.

I don’t want to lose my husband and my best friend. I want it and US to work but I don’t have a clue what that might or should look like.

Any advice or wisdom you can share? It would be much appreciated!

Anyway friends, I hope your Sunday was and is a joyous one. Peace.