Happy New Year 2018 with Many Thanks

Hello and Happy New Year! I know I’ve been a bit silent lately, but it isn’t for any particular reason. This winter break is going way too fast. My husband has been battling the flu. It hit him the week of finals and is still hanging on. The doctor said this flu hangs on for sure. I think he’s finally on the mend. My fingers are still crossed that I will indeed NOT get this flu.

We had a great Christmas, very sinple. I hope you and yours had a good day as well! I haven’t been up to much really. Keeping the house clean, puppies fed, husband nursed. All things I am so grateful for as a matter of fact. Being off of work has allowed me to rest and do things I normally just can’t manage to do while working full-time mostly due to fatigue and other symptoms. Goingout  to a movie and out to eat are definite treats!

Overall, my health has been steadily alright this semester. I gained some ground over the summer, and I feel like I have managed to keep a grasp on most of that ground. I see my holistic doctor in a few days, and I am curious as to where we go from here. I’m still dealing with afternoon fatigue. My thyroid is not working properly – AGAIN – and a few weeks ago, I started having slight numbness on the lower right side of my face. Nothing that itches or hurts. It just feels like there is pantyhose covering that small area. It is a strange feeling.

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Newton and I taking a New Year’s day walk. COLD!

Yes, I told my doctor here (my original LLMD) this information when I saw here last week – oh wait. I didn’t see her; I saw her PA. Now the PA is a very sweet person, but now it has been 6 months since I have seen my primary LLMD. Seriously.

Anyway, I told her about the numbness and she said, “Wow. Yes, I am sure that is annoying.” That was all. I’m still waiting for my labwork to come back and for the doctor to advise me on what is next. Honestly, I don’t expect much. I shouldn’t be irritated. This is one of the many reasons I went and found a secondary holistic LLMD 2 years ago. However, my 2nd doctor is a 3+ hour trip away from home and does not take insurance and so I have 2 doctors – one near, and one far. I count myself extremely lucky for sure as I know many Lyme disease patients who have no access to an LLMD at all.

Thank you for all of your support throughout my humble journey with Chronic Lyme disease thus far. This blog and this space with you, my friends, has been such a wonderful gift. You have listened to me, encouraged me, understood me, and loved me. I couldn’t ask for anything more. From the bottom of my heart, I embrace you and wish you each the best of everything in this beautiful year to come. Here’s to 2018!

With Love and Joy, Belle

 

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LuAnn is all ready for the freezing temperatures we are experiencing here in Houston!

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The Damn Rash is Back

First, before I start on my rant, I hope you all had a wonderful Thanksgiving! We had a really good day. The weather was AMAZING. No humidity (say what?!?) and the high was maybe 60? Delish. It was just my mom and me and our 10-12 dogs between us. We cooked, talked, cooked, and talked. It was great to reconnect. My husband and step-daughter arrived home from out of state about 4 p.m. and then we got to visit with them and hear about their trip. I hope you and yours had as much joy as we did!

Now, the RASH. Since contracting Lyme (when this happened I have no idea but….), I have had strange rashes. On my legs. On my arms. On my hands. On my face. I had a bout with hives this past summer. I never really figured out why. It’s been since July 2016 that I’ve had a legit rash. And it was very unpleasant. It was under my left eye across my cheek. It was down the left side of my face and under my chin,

It itched so horribly!! My doctor sent me to a dermatologist (since I had just had this rash in April 2016, same place). The dermatologist tested me for skin Lupus and sent me on my way. The test was negative. She gave me some cream which helped the itching but whatever. It lasted about 10 days. 

My out of town LLMD looked at pictures a few months later and stated it was systemic and not caused by anything external, aka Lyme disease. Or maybe a virus that caught me because my immune system is just plain no bueno.

Anyhoo. It’s back. Same rash but it’s under my right eye and on my right eyelid. It itches something fierce, and I am trying my hardest not to itch it! It is miserable! It popped up Friday night and has just spread a bit. It looks like my eye is swollen. Nice. I’ve been babying it and keeping it contained by not touching it (ok, barely!). And, I’m back at work tomorrow! Yippee!! 

 Look, the last few times it has been much worse, but still. My plan is to go to work as it isn’t contagious (we figured this out the past 2 times as well) and hope that it clears up asap. If my eye gets worse or the area gets more swollen, I may have to take a day off, but I am really trying not to do that if at all possible. 

I’ll be honest, the rashes on my face just make me so anxious. Not because of what it looks like but it’s just a constant reminder that Lyme is still lurking. Lyme is still beneath the surface just waiting for any chink in the defense. It’s a reminder that even though I’ve made progress, I still have miles to go. UGH.

Surface

 

Damn rash. 

Wish me luck with this. Have a good week, friends. Be happy. – b

Trust Thyself?

Howdy out there! Well, yes, the Astros won the World Series, folks, and we here in Houston, Texas are celebrating! Good stuff! 

So, just a quick recap: I’m now officially off all antibiotics for a 2nd time now in my 5 years of treatment for Chronic Lyme disease. Sure, lately I’ve been a bit paranoid, wanting to chalk every.single.everything. up to Lyme. I certainly try to keep track of any weirdness or symptoms cropping up. You know, JUST IN CASE.

Lately, I’ve been feeling pretty fatigued in the afternoons. It hasn’t affected my ability to work, but I certainly do not get much of anything done after work. I’m not really noticing too many other symptoms so that is encouraging. There was one day this past week that I had a lot of stiffness and joint pan throughout the day, and it’s been a few months since that has happened. Again, good news.

But, yeah, the fatigue can be scary. Ever since I was so very sick this past March, the fatigue kinda freaks me out a little, I won’t lie. It’s one of those lingering symptoms of Lyme and especially Chronic Lyme. It’s like a shadow that follows me everywhere. I can’t seem to shake it. Even when I was off during the summer, it was always there, lurking. I feel like I have to always be on guard about the fatigue. It swallowed me up whole this past Spring, and I wasn’t sure I would be able to come out of it. Luckily, I did but it certainly wasn’t a given. Fatigue is stealthy and ninja-like too. It comes on slowly but quickly too and before you realize it, the fatigue takes over everything.

When I’ve been in the dark depths of this illness, in the pit of the chronic fatigue, the pain, the headaches, nausea, there have been times where I have actually doubted my own sickness. What I mean is, there have been times when I have questioned whether if I am really sick. I’ve  thought: maybe I am just  lazy? Maybe I just don’t want to work or maybe I just don’t like my job anymore?  Maybe I was sick, but I’m not anymore? Maybes, maybes. Why would I even question myself like this?

I think some it has to do with being ill for so long. I’m not sure. It took several years if feeling sick to get a correct diagnosis and then, in my case, even when I began treatment, I did not see any real progress in feeling any better for many years. I am sure there are many out there with chronic illness that sometimes doubt themselves. PLEASE DO NOT DOUBT YOURSELF, EVER.

Of course I am sick! In fact, I can almost remember the very day I realized something wasn’t right in my body and that was in November 2009. Then it took almost 4 more years and at least 8 doctors to get correctly diagnosed with Lyme disease.

I know it’s utterly illogical to think otherwise. Whenever I have a little more energy and if I feel a little better, I am doing things I haven’t been able to do in a long time. It’s so stupid to blame myself formy  physical ailments. And yet. Those thoughts have crept in from time to time. Perhaps it’s some sort of weird coping mechanism? I’m not sure. 

But now that I have a reprieve from a lot of the symptoms, I know that these doubts were silly. I have to keep reminding myself to trust my gut and to trust my instincts. They haven’t failed me yet. In fact, they are what saved my life. 

Here’s a tidbit from Ralph Waldo Emerson’s essay “Self-Reliance” (we have been studying this in class and seems relevant. Maybe not, but I like it LOL):

“Every man discerns between the voluntary acts of  his mind, and his involuntary perceptions. And to his involuntary perceptions, he knows a perfect respect is due. He may err in the expression of them, but he knows that these things are so, like day and night, not to be disputed. All my wilful actions and acquisitions are but roving;— the most trivial reverie, the faintest native emotion are domestic and divine.”

And also Emerson says “Trust thyself: every heart vibrates to that iron string.”

That’s exactly what I intend. 

Have a happy week, friends. – b

 

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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.

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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

“If I Only Had a Brain”…..

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!

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

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!

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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

 

Summer 2017

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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Duck, Duck, Doc…#1 The General Practitioner

*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