#chronicillness

River Staycation

/ Read Between the Lyme / 1 Comment

We decided to do an overnight trip to a major river about 3 hours from home this past week. My husband loves a particular spot, and the river is spring fed so it is nice and cold. Temperatures here are now are hitting 95-100 degrees with a heat index of 105+. It’s really hard to find fun things to do that do not require you to be outside between say 9 a.m. until 9 p.m.! Fer reals. I just can’t do the heat at all.

We also decided to take one of our several dogs, Newton, as he has made a trip to Colorado (17 hours in a car) and did very well. He is also very well tempered and loves to socialize. We weren’t sure how he would do in the hotel, but we figured worst case, we could make the trip home that night if needed.

Needless to say – he had a blast! He met all kinds of new people and other dogs. He swam a bunch. He had many adventures! Staying in the hotel went well. He barked just a few times but nothing major. He passed out and slept all through the night. We will definitely be doing this again!

As for me, I did pretty well, too! I’m pretty rested up from not working, and the river has great places that are shaded so I didn’t overheat. My fatigue has lessened over the past month or so and I was able to keep up. Overall, we had a wonderful time. It was great to be outside and to enjoy being active!

Hoping your summer days are joyful – b

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Rashes, Rashes, We all fall down…..

/ Read Between the Lyme / 17 Comments

Happy Sunday out there! We are having some very unseasonable cold weather with the high yesteraday at a 50 degrees! WHAH? In April? It’s been pushing 80 this past week but then a cold front rolled in. It is probably the very last until September so we will take what we can get and enjoy it fiercely!

The past 30 days have been pretty unfun. I mean overall, it’s been a good month. But healthwise, it’s been well…strange. Since and before contracting Lyme, I have dealt with weird rashes. I have very fair skin and red hair so it comes with the territory. But in the past 2 years, I’ve had some bouts with rashes on my face and hands that have been really challenging. There also seem to be no answers to the Why I get these cropping up periodically.

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Right after Thanksgiving, a rash poppped up on the right side of my face. It itched like crazy. But I babied it and it cleared up within a week. I didn’t bother to go to a doctor because in the Spring of 2016 had  had the same, even worse though, and did the whole shebang of treatments including a dermatologist visit that rendered: No skin lupus diagnosis. Let’s just say it was a massive waste of time and I found no answers. You can read more about it here The Damn Rash is Back. 

So back to 30 days ago. The rash again started on the left side of my face. My eyes swelled up. Patches began showing randomly on my arms, legs, neck. UGH. I had an appointment with my LLMD already so I waited until I saw her about 10 days later. The rash still hadn’t cleared and was making me crazy, espeically in the evening when it flared up and itched so horribly. I literally had no expectations as my faith in my LLMD here in town is seriously wavering.

But, she gave me hope! She tested me for alleriges and I tested nigh for all. She put me on a steriod pack and gave me a steroid shot. She wanted to start me on allergy shots. Things were looking up! Within a few days, the rash was clearing up. I could sleep and wear my contacts again! Yippee!  But not so fast.

On March 26th, I went back to the doctor’s to begin the allergy shot regimine. The rash from the previous 3 weeks was all but gone. I picked up my shots, instructions, and plan. I also received 2 small shots to begin. I would take another 2 shots on Thursday and 3 days from then on for 6 months.

Then, Tuesday happened. I woke up. Both eyes were seriously swollen and red. The rash was back on my face. I called the allergist. She was very surprised as I was started on the lowest dose. By Wednesday, the rash was all over my stomach as well. WTF???!!!

I had to take another day off of work and returned to the doctor the following Monday. She insisted that I see a dermatologist again. She also told me to take the shots again on that day….WHAT?!….and told me if it got worse….WORSE???? ….to take another steroid pack she was prescribing me. I refused to take the allergy shots and left very angry.

Side note: While my LLMD here in town did diagnose me with Lyme, thankfully, and she did save my life I believe, she just doesn’t not have the time nor the tools to treat chronic illnesses in a  capacity needed. Or maybe in my case. I’m not sure. I continue to see her because she is close. And I need a doctor here that knows Lyme. And she does. However, increasingly, I get frustrated with her and her lack of assistance now that I am starting to improve but still no where near well. My other LLMD is about 3-4 hours from here so I cannot run to her when I have thes kinds of issues. I also can’t get in to see her ASAP. Appointments for her are booked out 3-4 weeks. 

I tried that Monday to get into a dermatologist. But they are also booked up. One office I called said May 2nd was earliest appointment. The rash was killing me. I finally broke down and started the 2nd steriod pack this past Thursday. The rash is almost cleared up again.

I have no idea what is going on. I also do not believe a dermatologist will be helpful. Plus, I have no rash to biopsy now. I refuse to try the allergy shots again right now. They are sitting in the fridge but I just can’t chance it. True, I could get the rash again just due to regular allergies. BUT I am not tempting fate by giving myself a shot right now. 

I’ll see my out of town LLMD in July. I tried to get on standby this past week but no dice. She has an email service that cost annually I am considering. It gives complete access to her as needed via email. I’ve heard good things abut this especially for the out of town patients such as myself. 

So that’s been my eventful month! How are all of you doing? I hope your journey in recovery is going well, friends. Until next time.

Hugs, Belle

 

You’re Kinda Cool

/ Read Between the Lyme / 15 Comments

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?

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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!

/ Read Between the Lyme / 9 Comments

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.

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

 

 

Heading Back to Work Very Cautiously

/ Read Between the Lyme / 19 Comments

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”…..

/ Read Between the Lyme / 16 Comments

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!

/ Read Between the Lyme / 10 Comments

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

 

Summer 2017

/ Read Between the Lyme / 3 Comments

Howdy ya’ll! I hope your summer is sailing along smoothly. I always feel extra lucky because as a teacher, I have summers off (kinda). The first 6 years I taught, I worked in the summer. I spent 3-4 summers as a shift manager at Starbucks (I had been a manager for them before teaching) and then I spent about 3 summers teaching as an adjunct.

After that, sometimes, I would teach a summer high school course. This wouldn’t be all summer, just 3 weeks. And some summers, I attended conferences and or week-long workshops. However, these past 4 years, I haven’t done anything of the sort. I struggle to keep my summers work-free so I can rest and try to get my health on track.

I now marvel at the things I used to do before getting severely ill. I also used to adjunct during the school year, usually teaching one evening college class each semester. No can do now. And so, because of illness, I have definitely modified my activities.

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But back to this summer. So some things I’ve been able to do that I normally cannot manage while working:

1. Hangout with friends. Nothing fancy but stuff like dinner and lunches. Just visiting and spending time together.

2. Go grocery shopping! I’m so not lying. This chore can be so overwhelming and so full of anxiety for me I just cannot manage it. So I’ve actually sort of enjoyed (except the bill!) going grocery shopping for us this past month.

3. Spend time with family. With energy so limited while I am working full-time, it is rare to just get together with family and visit. It’s a total gift to get to do this unplanned.

4. Be upright and not in pain after 4 p.m. daily. Sure, I still have to rest. And yes, I do still have pain periodically any time of day, but it’s nice to know that some days, I can be up and active in the afternoon, on a weekday!!!

So as you can see, there’s nothing too crazy going on here this usmmer. But I’m glad I have the time to do a few cool things I can’t do normally.

I’m off to cook some dinner for my husband. I forgot to add that to my list! 🙂

Happy Summer, friends. Talk to you sooner than later. -b

P.S. I really feel like Bilbo below!!

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