A Reality Check

It’s December 12th, heading swiftly towards that blinged-out-commercialized-day of Christmas. I’ve put up a few decorations, the tree, some lights outdoors. The weather has been in the highs of 78-80 this week, but it is now pouring down rain and windy as all get out outside. We finally not only saw the snow geese (Canadian geese); we saw a few flocks of them as well. Supposedly, the weather is turning chilly in the next few days as a cold front creeps its way down here. I’ll believe it when I feels it.

Since my new doctor appointment early in November and since starting on the herbal tinctures as my new treatment, dropping the antibiotics, I actually have felt half-way decent. The fatigue has decreased, the migraines are few and far between, and the nausea is way less. It honestly has been a nice breather from the new normal of suckthelymeville. Thanksgiving break was pretty awesome. I was able to do a few things that I haven’t done in so, so long. It was a real treat!

But I knew these next few weeks would be the real challenge at work. The weeks between Thanksgiving and Winter break. While yes, technically, this is only a span of three weeks, believe me, it feels like six. It’s the end of the semester. Things are coming at teachers from every which way. It is always a tough time of year, but as usual, for me it is breaking me down. I know it did last year as well. I’m not trying to be whiny about it at all. It is what it is. I try to keep in mind that even for normal, healthy people, this time of year is extremely stressful no matter what profession and this helps a bit. But I will say this, by yesterday, I was all played out. All day long, my brain was empty and sore. I couldn’t focus on anything at all for more that a nano second. You laugh, but this is the truth. I tried to be productive. Now, I am laughing!

Today, I feel like a bus hit me. The soreness, the aches, the headache, the beloved (not!) nausea. I haven’t slept well in the past few nights and last night was no exception. Tossing and turning. Laying too long in one position produces pain, this wakes me, I turn over, kind of awake, then the process begins over. The unrestful sleep is killer and is just exacerbating all of the other awesome Lyme stuff. My head is hurting. Not a migraine, but just enough to make my stomach nauseous. I hate this combo of symptoms in particular. It feels like having the flu which is just downright miserable in and of itself. Only with Lyme, you don’t know when it might let up or go away. So, Reality Check.

 

Guess what, sucker? You still have Lyme disease!

I LOVE to fantasize. About activities, about going places, about projects at home, about eating yummy food without experiencing indigestion. It keeps my mind busy and delighted, it can sometimes distract me from the ugly gloogy gooks rumbling around in my body. And then. Sometimes, I go a bit overboard going so far as to actual Make Plans to do a said fantasized scenario. This rarely works out well. This holiday season, we have two events we have said “yes” to: an open house event and a dinner event. And even committing to these two things were difficult. While I definitely want to go and have fun with people, especially this time of year, I worry so much about getting to that day / evening, feeling terrible and then canceling. Not only is it disappointing for my people, and for my husband, but it is so freaking disappointing for me. The fantasy comes crumbling down, and I’m left with the slap in the face. That realization that I’m still limited. This is Reality.

How is everyone doing out there? Drop a comment or two so I know I’m not alone. Hoping it’s a pain-free day for all! -B

 

 

 

Proceed with Caution!

Life is a Roller coaster right now…..

Yeah, so this is me right now. Up and down, up and down. Normally, I’m a very steady personality. I do not anger easily. I’m good under pressure and stress doesn’t phase me for the most part. Now, enter Lyme. Neuro-Lyme, specifically. Can someone just say, Stop the Madness?!?

rollercoaster1  And we’re off! When I was first diagnosed with Lyme disease almost 3 years ago, my major cognitive symptoms were short term memory loss, word recall, concentration  (I had NONE), and trouble reading.  All of those have improved over the course of treatment. If I am experiencing intense fatigue or stress, they all will rear their ugly heads. Monsters from the deep, I like to call them!

But probably for the past six to nine months, and uhm, this would be way more if you were to ask my hubby, I have experienced these weird mood swings. I guess they can be comparably to PMS mood swings and yet. Along with the mood swings, sometimes, anxiety comes out to play as well. I honestly can say I have never had anxiety except for maybe right before a huge exam or before speaking in front of a crowd. And I never called these feelings “anxiety.” I just called them stress. When I say mood swings, I mean like minute to minute mood swings. Yes, sometimes the mood swings can take a few hours but then sometimes, not so much. From the outside looking in, these swings really can be “crazy.”  Anyone else have this or had these in the past?

Example. We go to lunch. Everything is ok. We have a nice lunch, and we have cordial conversation. LOL. Then, afterwards, hubs wants to change the oil in my car so we have to go to another small town about 20 minutes away to get the oil. Yes, the joy of living in the country. Hubs asks me with all seriousness, “Are you going to be alright if we make this detour on the way home?” He means can I handle it energy-wise and mood-wise. Well, of course I can!

I’m good. We shop. I look at decorations. I look at shiny stuff. Then, I start getting tired. It hasn’t been a long time from when I first made the decision to go along with the oil shopping trip either. Really, in non-Lyme time,  it has only been about 20 minutes. I’m getting overloaded with stimulus and decision making – I’m trying to find some decorative tins for baked goods. There are a lot of people, a lot of talking, a lot of music. My head starts to feel foggy. By the time we check out, I’m done (and this is less than an hour trip mind you). Some strange time warp happens, and I start acting like a 2 year old who needs her nap. My husband is confused by my behavior, as am I. On the way home – a whole 15 minutes – he’s like, “Hey, I thought you said you would be alright?” Sure thing. Me too! I made a point that I never used to be this way, mood changing faster than the weather, and he agreed.

Overall, yes, the neuro-symptoms are improving but I’m still having these mood swings. Happy one minute, bummed the next. Upbeat and positive, then solemn grumpy pants. Pepper in some anxiety, and presto! Inner Gremlin appears!

So, how many of you suffer mood swings and/or other neuro-Lyme symptoms? And how do you manage these?

Until we meet again……Peace, B

P.S. This site has some solid information regarding neurological symptoms and Lyme.  www.neuro-lyme.com

 

 

 

Warm, Warm, Cold!

It was 80 degrees here yesterday, a/c on, hair frizzies and such abounded. Today? Why, it is 46 degrees! Getting up was tough. It was a 3 hour process. We woke up at 5 a.m. Hub’s alarm went off; he was taking the kids to an outside event today. I had to give one of my dog’s his medicine. I switched the a/c to heat and then jumped back into bed and turned on the electric blanket. AAH. But lights were on, and activity was happening, the dogs were restless. Almost falling back to sleep, Boo woke me up trying to play. About 6 a.m., I gave in and got up, made coffee, crawled back into bed and watched a little Netflix with the free tv juice (satellite) until 8 a.m. I just couldn’t coax myself out of the cozy, warm bed.

Everything is sore for the most part. It’s the damp that is getting me. When the front came in last night it rained, the damp sleathly crept into the stillness of my bones. Hips, lower back, ankles….these are the places the cold likes to settle. My BFF in the winter is a heating pad. I seriously have about 5 of them pretty much everywhere! School, couch, bed, office chair. I really need to get a heated car seat! Maybe Santa can check that out for me.

It’s been a good week. I’ve done more this week than I have in the past 2 months, or at least it feels that way. For the most part, my energy has been decent, and my mood has been a positive one. One thing I have realized this break is that I’ve become overly cautious. What I mean is this: I never know how I will feel after doing something out of the ordinary in my daily routine, whether that is an extra hour at work, taking on a project, going out to dinner, etc. With this in mind, I go about my every day doing the known routine and scared to do anything outside of this routine because I don’t know what the result will be. I know this sounds a little crazy, and it kind of is, but my worry is that if I break my regular routine and overdo, I may be paying for it longer that I want to or can afford to financially and otherwise. So, I err on the side of doing less.

The result of playing it ultra safe has been that I have sacrificed some of myself and my relationships with others. It is true. And this does hurt. It’s just really hard to figure out a balance as far as my energy tank  is concerned so there isn’t a terrible backlash. I’m not sure how to navigate this new found obstacle I am now aware of.

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In perspective though, I am grateful that I have energy to worry about doling out.  This is a definite sign of improvement and I’ll take it. Any tricks or tips you can share about managing your energy account?

I hope you all have had a good, pain free week. Until next time, stay frosty – B

My Life is Fleeting One

Trying to get through this….

Hello people, it’s been a long while. And as we all say, so much has happened and yet nothing at all has happened. First, maybe, is that indeed, I have made it to Thanksgiving break at work. This is a huge hurdle for me, and I am very grateful to have cleared it, circa 2015, with all limbs intact. There were about 3 weeks there in late September that I honestly thought I would not be able to make it, and I would have to take a medical leave; I was really worried that I was getting worse. Then, things turned around, albeit slowly. I’ve finally come to terms with the fact that living with a chronic disease, things can change on a dime and they do. Although I am not a fan of this at all, accepting this as a reality has been somewhat helpful along my journey into the unknown.

Seeing another doctor has also happened. We made a 3-4 hour trip from home to the new doctor’s office a few weeks ago. The visit was a long one in which I talked too much, my husband reported to me afterwards, and we left with a few bottles of tinctures. Personally, I like this doctor, the approach to treating Lyme through more integrated and functional medicine, the way the doctor listened and validated mine and my husband’s experiences over the past 2 and a half years of treatment. I have stopped the abx and switched over to the herbal drops. The goal is to get to 25 drops 2 times daily. Right now, I’m struggling with 5 drops 2 times a day. I can do 4 and make it alright. But the past couple of days when I tried to get to the level 5, by about 4 p.m. I am herxing big time. I also have detox drops for the herxing, and I have added those as needed, but wow, there is s distinct difference, at least for my body, between the 4 – 5 drops. We are working on it. 🙂

I hope everyone has a wonderful Thanksgiving! This break I’ve been able to do a few things I normally can’t / don’t do while working such as, and don’t laugh: grocery shopping, house cleaning, pie baking, dinner out, laundry – lots! While most of these things are not huge in any way, I have just not had the energy to do them much while working. And I actually did some simple Christmas decorating! It really has been pretty awesome getting to do these things without feeling so fatigued and overwhelmed. While several of these afternoons and evenings I have been in bed with nausea and headaches, I still feel like I’ve had some of the best days I’ve had in a very long time. I know I have pushed myself a little much, and I’ve eaten several slices of pie, pumpkin and apple, so my sugar intake is in the red, but it’s all been worth it! I feel like I have been partying it up, people!

Best wishes to you and to yours, -B

First Aid Kit

P.S. The above band is worth checking out. This song, “Fleeting One” is stuck in my head. Enjoy!

On the Antibiotic Wagon

I hope everyone is staying cool. Temperatures here have been raging at around 105 degrees and that is the REAL temperature, not the heat index which is even higher. For the love of God, it is hot. Between noon and about 7 p.m., it is way too hot for me to go outside. The heat just completely zaps me.

I had my doctor visit a few weeks ago. Things seem to be pretty status quo in that my numbers are all hovering basically at the same place as in June. Here’s where I stand right now: CD57 – 33, Lyme bands 23 and 41 showing IGG and band 41 IGM, EBV is reactivated; it had been inactive since April, Mycoplasma finally under control, and HHV6 active again. In all honesty, this is for the most part where I was at the beginning of last summer. What I expected was my doc would put me on another course of antibiotics since I have been on amoxicillin for about 5 months now. Instead, on the patient lab VM, she said we were going to take a break from the antibiotics.

http://netdna.tinyhouseblog.com/wp-content/uploads/2014/03/medicineshow.jpg

It freaked me out. I listened to the VM about 3 times. My brain is like, Are you Sure?!? But there are no certainties with Lyme now, are there. I was so sick when I was finally diagnosed and I have not had more than a day or two break from being on antibiotics in 27 months. In in those 27 months, I have made some significant strides. So, yes, it is freaking me out a bit! I know I need a break, my body needs a break, but I feel like I have lost my walking stick. It’s only been 3 days without meds, and I keep analyzing myself, waiting for new symptoms or for the flu-like monster to rear its ugly head. It’s hard not to worry.

Also, right now is about the most stressful time for me at my job, besides at the end of the school year. In a mere 10 days, school is up and running and so am I. I’m struggling between being happy to return to the classroom after a nice summer break and the dread of becoming severely ill. While I know it is not a good thing to worry and stress, it’s there in the back of my mind, the What If? Meditation, and I use that term very lightly as I am just dipping my toe into that arena, is helping some. The breathing combined with focusing has helped me clear my mind some. Like one of the mantras in AA, I’m taking it One Day at a Time. Or one hour at a time. It’s just a challenge for sure.

Anyway, I’m on the wagon, and we’ll see how it goes. My next doctor visit is early October. By then, the weather will still be hot, but the evenings and mornings will be cool, school will be in full swing and hopefully, my immune system will have stepped up and kicked some butt.

For those of you not on antibiotics, or taking a break from them, any suggestions on how I can support my immune system right now? I appreciate any and all recommendations.

Till next time, friends, -B

Cry Baby!

So I’ve been quite weepy this weekend. I’m not going to say I never cry, but for the most part, this is a rare occurrence. Basically, I cried some on the way home from work on Friday, cried myself to sleep last night and then, after my husband left for work this morning, I had a mini cry session. What the heck is going on?!?!

I would blame it on my cycle, but luckily, it isn’t that time. I would blame it on what someone said, but besides my husband, I haven’t been around anyone else. Nothing happened at work to spark this; in fact, Friday was a good day teaching-wise. No event, no conversation, no outside force has caused this. Maybe it s hormones affected by the Lyme? Maybe a release of anxiety?

I don’t know, but whatever it is, it is making me feel very depressed. I can only seem to focus on the negative. I’m questioning my treatment, my sanity, my work and my relationships. Right now, I feel like the world is closing in on me. I am worried, exhausted, and stressed. Things like this are running through my head right now: Should I change my treatment? Should I try to cut down at work, somehow, someway? And if I can do this, will it make any difference at all? Or will I go another 2 years, seeing some improvement, but “not quite enough”? Can I even make it another year like this? At half capacity? Dragging myself through each day? Losing the joy for life chip by chip? As per the Indigo Girls, been feeling like these lines, ” We’re sculpted from birth/ the chipping away make me weary,/ and as for the truth/ seems like we just pick a theory.”

Struggling to stay positive, I think to myself, “so many other people out there have it worse that you!” I know this in my heart, but right now, I am being self-centered and feeling sorry for myself. I’m in a dark and lonely place right now, and I just have to own it. Embrace the feelings and move on. For today, I am in a full embrace and it’s hard to let go.

PaulNewmananigif_enhanced-buzz-12372-1379309462-6I hope you all are having a better day than I. Adding a pic of my favorite actor of all time….enjoy!    Peace -B

Accepting or Embracing Chronic Lyme

Howdy, fellows!

Loss for words
My brain on words!

I think I may have mentioned before that I am in the process of accepting, or at least trying to accept, the fact that this disease is going to take a while to shake off. Not only am I struggling to come to terms with that, I am also struggling with the notion that this is a chronic condition (even though the CDC denies this fact).  For me, there is a fine line between acknowledging the illness and embracing it. What I mean is that in my messed up brain, I feel like acknowledging  that I do have chronic Lyme equals giving in. And, I am not a fan of that!

It is ridiculous, I know. Accepting does not equal giving in, but again, in my lymie brain, getting over the semantics of it seems to be a real challenge! Plus, I just read an article about Debbie Gibson in which she states that she doesn’t call her experience with Lyme Disease a battle, she calls it “overcoming” Lyme Disease. See here: http://www.people.com/article/debbie-gibson-lyme-disease-recovery. She says that referring to Lyme Disease as a battle gives it more power. Maybe. Maybe. So, I guess for me, maybe this is a similar conundrum.

Yes, there are bigger and more important fish to fry! But the reality is that I have been dealing with this disease for several years now. I spent about 4 years sick with no idea what was going on, and now I have spent another 21 months in treatment. Sometimes, it is difficult to think about all of this time spent “overcoming” this illness. Although, many people out there have suffered way longer than I have for sure. I just feel like the words I use in my self talk are really important. Do you feel this way? Or am I wasting time on something that really means nothing?

At first, when I started treatment, I did feel that it was a battle. But now, almost 2 years later, I feel battle weary. I was really hoping it would be a short war, and that I would be the victor! I bet we all had hoped this!!   But here I am, years later and still, every day feels like I am fighting. Fighting to get up, to go to work, to make it through the work day…etc. I sure do not feel like I am overcoming anything! Lately, though, I have tried to just accept that indeed, getting up each day for work is a challenge, working all day is a challenge. I am trying to get my brain in sync with my body but without giving in.

Does any of this make any sense to anyone out there? Bottom line is that I know I need to accept this stage I am in more than I do right now so I can hopefully move forward and deal with life as it is right now a little better. But how do I acknowledge or accept where I am right now without feeling or thinking that I am giving in? Can anyone relate to this at all and if so, can you give me any suggestions/advice?

Wishing you all a pain free day. Peace-B

The Snowglobe

SnowglobeLately, I have been struggling with the fact that my life has changed. When I first started treatment for Lyme disease, my mindset was that I get through this. I was willing to put in the time. I figured a year would be sufficient. I tested CDC positive for Lyme; I tested negative for the big 3 co-infections. Assuming that the results were correct, I set my mind to healing.

I still worked but my boss gave me the utmost flexibility to leave as needed and/or take absences as needed. I didn’t attend as many social events. I tried to get my proverbial plate as empty as possible. And, I made progress. I did. The backaches subsided, the intense daily neck pain finally went away, the migraines became less frequent, the exhaustion became manageable. All of this was great. Then, I guess I hit a plateau.

So, here I am. I am not 100%. Honestly, inside I feel about 40% of my old self. Outside, I think people actually see me as almost 80%. I am a great faker and a great lier when it comes to the presentation of myself to the outside world. I am sure this is the case for all of us with a chronic disease. But since school started this fall, I feel like I am backsliding. The extreme exhaustion is creeping back in.

I have started seeing my my life from the outside. It is a weird feeling. Does anyone else have bouts of this? I don’t think it is disassociative disorder, but maybe just parts of it. Sometimes, in order to get through the day and what it entails, I separate myself from my physical body. Creepy! No, not in a creepy way! When I do this, I feel like I can make it. It is as if I am managing my symptoms from the outside with less attachment to the pain and whatever discomfort is going on at that minute. The problem is though that I have been doing this for a few weeks now and it is starting to feel like I have two different lives. I just don’t know how to explain it well. Really, though, does anyone else have this going on or something similar?

It’s almost as if, when I do this, the separation, that I am looking at my life and my actions in a snowglobe. Sorry, it’s the best analogy I can think of! 🙂 I am guessing this is a coping mechanism the brain sets up. However, I just don’t want it to become a rabbit hole. Also, I am concerned that this snowglobe effect will become a crutch in the sense that at this point in time, I am not dealing well with the fact that I am now 19 months into treatment and I have hit a wall. Like everyone else with Lyme and chronic disease, this wasn’t my PLAN!

I am hoping all of you out there are having better days than not. Drop me a comment in regards to this thing I have going on with me mentally if you feel comfortable doing so. I appreciate any and all comments!

Happy weekend, pumpkins – B

Boredom

So since I am a teacher, I have about 2 months off. Now, granted, this time is filled with some work such as professional workshops, trainings, interviewing candidates, working on lesson plans. Still though, is is a nice chunk of time to call “vacation”. This summer, I took some of my required classes right after school was dismissed and while I have gone up to campus to conduct a few interviews, I cannot complain at all. I have had a lot of time to relax.
I would really like to say that I have spent this time in a productive way, but that isn’t the case at all! While I have managed to do some small projects like organize the closet, the plastic drawer and the papers that need filing, other than that….Ugh. My main focus this summer is to work on getting well. This requires dedication! Ha! I have my Picc line now, so it takes about an hour to dose. I then try and clean the house as much as I can: 6 dogs running in and out the doggie door and the shedding-Oiy! About noonish, I lay down with a heating pad and a book and do some reading for a few hours. Sometimes, this turns into like 4 hours. And then, sometimes, I attempt dinner if I know husband will be home, proceeded by watching some shows.
While I wish I could do more, I know that the best thing for me right now is to not overextend and to rest constantly. I am working hard to build up my immune system so it fights back the Lyme as well as for the first day of school! I plan on working this year! I completed last year successfully; it was a long haul but I was proud of myself for meeting this goal. Anyway, with resting as the project this summer, ain’t much getting done! I hope all of you are getting some relaxation in too!

Peace ducks,
-B