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.

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Damn rash. 

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

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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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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?

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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!

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

 

 

“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