Derailed

Hello out there! I apologize for being gone for so long.

I had a bit of a scare though, and it has been a struggle to get back on track. So I caught a cold at the end of March. It was the 3rd one I have had this year; the immune system is shot and I am a teacher. The odds were not in my favor. Also, it was a stressful time of year, state testing, and I guess all of this made for the perfect storm.

On a Monday, I got up like I normally do. I had coffee and started to get ready for work. About 30 minutes later, I started feeling really dizzy and nauseous. It was terrible. My head started pounding, and I had to lay down. I could not go to work like that.I spent the entire day in bed, fluctuating between sleep and pain and nausea. The next day, the same scenario played out. Wednesday I went to my LLMD. She tested me for h pylori, EBV, and Mycoplasma. She told me to rest through the weekend.

I will tell you, this was a scary experience for me. With all of the symptoms I have encountered with my travels with Lyme, I have been able to manage them to a degree. But the dizziness? This was new and something I definitely could not control. I was out of work a week. I have never missed that much school, even when I got married. It made me start thinking about all kinds of crazy (yet possible) scenarios. I tried to figure out a Plan B,C, and D. None of those plans look too great. We need two salaries. I most likely cannot qualify for any disability as I have been working. I have been trying to save monies for an “emergency” in which I might use up all of my sick days and still need time off. But what if there is a point where I really cannot work? I don’t have an answer for this.

After all of my labs came back, it really wasn’t clear why I was feeling so terrible. By the end of the weekend, I was on the mend, but again, there really was no clear answer to why I felt the way I did at all. In my own medical experience …ah,hmm, I am guessing that my body was just done. The cold knocked me down and then along with the stress and the Lyme and Mycoplasma, I just didn’t have a shot.

Since that incident, I have been feeling a tad better. Less overall pain, more mental clarity than I have had in quite sometime and less fatigue. Go figure.I had 2 full weeks of feeling almost normal and now, the headaches and the joint pain is creeping back in. Anyway, I hope this finds you pain free. Take care!  Peace -B   #lymediseasechallenge

Off the track!
Off the track!

Havoc! And #LymeDiseaseChallenge!

Well, ladies and gents, it’s been a nightmare of a ride these past 10 days. Ironically, my last post was discussing the sometimes, most times, sporadic onset of symptoms. Then, tada! Totally happened to me. And the worst. I hadn’t been feeling all that great over Easter. I was having tummy issues, nausea, indigestion. And headaches. Really painful headaches. I missed a family member’s birthday celebration along with Easter since I was basically incapacitated.

Then it was Monday. And all hell broke loose. I got up and started getting ready as usual. About 25 minutes into my routine I began getting dizzy, lightheaded, and severely nauseated. Just like that. I laid on the bed for a minute, panting and hoping I wouldn’t throw up. I couldn’t go to work like this. No way, no how. I spent the entire day in bed miserable. I couldn’t eat. My stomach kept cramping and then the migraine made its appearance. Tuesday was yet an instant replay of Monday. No fever, but I could not stay upright. I have never felt this horrible before.

Wednesday I already had an appointment with my LLMD set. My mom had to drive me. I was afraid of a dizzy spell or whatever might show up next. I’d like to say my doc had all the answers. I wanted Doc to tell me that I could do *this and I would be OK. Alas, as it always is with Lyme and Company, not so much. My EBV is reactive and has been since January. I have a mycoplasma pnuemonia infection. I have one MTHFR mutation. I also now may have an hpylori bacterial infection which I am being tested for. My body is on the fritz. Overloaded by fighting on so many fronts at once, I don’t know, maybe my immune system has just given up. I was to stop my antibiotics, and I was directed to bed rest for the next 2 days through the weekend, returning to work Monday. Oiy. I told Doc that this is the worst I have felt since beginning treatment 2 years ago. Definitely scary and disconcerting. The rest of Wednesday was a replay of Monday and Tuesday. I swear, I haven’t slept so much in my life.

So here I am, resting. The nausea let up finally yesterday. I was able to eat a decent meal as well. Headaches are manageable. I feel like at least half a person now. Missing this much work had been distressing though. It worries me and while I want to plan for the future, what do I plan for? Right now, I plan for the Worst Case Scenario: I can’t work. Realizing many of my fellow Lyme sufferers are already in this boat, I am extremely grateful that I can still work and that I can manage these incidents for now.

While I am waiting to get my labwork back, Doc tested me again for EBV, mycoplasma, hpylori, thyroid (I have Hashimoto’s) along with ATP, CD57 and Lyme, I am wracking my brain about what I can change on my side to make things better. I definitely need to detox better and more. I think it is time to make a serious diet change. And most importantly, I need to embrace the fact that I am chronically ill and start working with what I gots. As the Indigo Girls sing, “What makes me think I could start clean slated, the hardest to learn was the least complicated…”

*you know, a pill, a diet, a one stop shop cure

P.S. My pretties, please do not forget about www.lymediseasechallenge.org and check out Dr. Oz and his segment about The Lyme Disease Challenge!  #lymediseasechallenge

www.lymediseasechallenge.org
http://www.lymediseasechallenge.org

I hope it is a pain free day – B

Back to the Twelve Steps

Howdy out there, friends and a big Happy New Year! I can’t lie, it’s been a tough couple of weeks. Coming down with a cold on Christmas Eve and working itself into some kind of bronchitis, I am just now starting to resurface into the land of the living. Seriously. While the holidays were great, I was sick for much of the winter break. And, I barely made it back to work this week; three days out and a trip to the doctor finally has culminated in what I hope to be a complete recovery from this midwinter cold! I hope all of you fared much better over the course of the holidays.

Did I make any resolutions? Not so much. Except this. Health has to come first this year. No matter what. A friend and I were visiting last week, and she asked me what the hardest part of having this chronic disease is, and I really had to think for a minute. For me, the most difficult thing has been this: I am a workaholic or at least I was. Working hard and giving it my all has always been a brick and mortar component of my identity. Working hard and being independent. Learning how to step back a bit, learning how to balance work and home; learning how to say no, or no, I can’t do it? These have been really difficult challenges.  In recent months, I have had to, just for survival reasons, take a few things off my plate. Framing this is a positive way to myself is the real struggle for me. I am trying to take it all in strides and to learn as much of what I can about myself as I go through this process.

Have I learned anything thus far? I think so? 🙂 I have learned that NO amount of stubborness and hardheadedness (what a word!) will make something happen if I physically and/or emotionally cannot do it! Ha ha! As if this needs to be learned at my age! But apparently, it does. So that is one thing. What else? Yes, that in fact, the world will not end if I cannot do something or take on another responsibility. And, I have also learned that if I do not answer an email ASAP, nothing will actually catch on fire. Again, I laugh at myself for being a bit anal and uptight this long as far as some of these things are concerned. I have also learned how amazing my support system is and how grateful I am to the people who put up with me each and every day.

If I had to make an analogy, and I will although no one is asking, I would say that for me, dealing with a chronic illness is like the road to recovery. Like AA, or Al-Anon in my case. Here’s what I mean. Every single day has to be taken one at a time. I have to be diligent to not fall off the wagon of gratitude and thankfulness into the pit of depression. I have to keep looking for those little daily gems of awesomeness and learn to enjoy them. The first step in Al-Anon is to admit we are powerless over alcohol-that our lives had become unmanageable. Instead, I substitute Lyme Disease for alcohol. So, here it goes, 2015. I admit that I am powerless over Chronic Lyme Dis-ease and that my life has become unmanageable.

Damn. That was hard.

DaliLama

Hope this finds you all well and toasty. Peace – 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

Haul Out the Holly

Hi all, so this may not be the only post about the Holidays. Back in the day, I would almost be ready to go for Christmas at this point in the year. But in these past few years, it has become more and more difficult for me to get motivated to do anything related to the holidays. Here at our house, we celebrate Thanksgiving, Christmas and New Year’s.

 

Book xmastree

I’m trying not to dread it, the Holiday Season. Yet, every time I turn around, we are getting closer and closer to that time of year. Thanksgiving wasn’t really that crazy, and honestly, neither are the other holidays really. Our family keeps it pretty low key all the way around, but I am still feeling anxious, I guess. There are just so many expectations involved, and I can barely meet any expectations the rest of the year! I am looking at the holidays as a break from work and time to rest, but that is not what most people have in mind. I know that I should be out visiting family and friends, socializing and having fun but a lot of the time, I am just not up for it. This may sound crazy, but with Lyme, I have experienced sound and light sensitivity along with anxiety. Sometimes, it is a little and sometimes the anxiety is huge. Especially when I am in large groups. There is so much going on and so much stimulus, it just becomes very overwhelming.

But hey, overall, I am just trying to be very thankful for all the love and kindness my family and friends have been showing me throughout this journey and, as for fretting about the holidays?  Thems First World Problems, yo.

Sending the sugar plum fairies your way -B

 

The New Normal

One of the catch phrases in my line of work, education, is that whatever new thing that comes along, and believe me there are so many “new” things that come our way, is that this new idea, strategy, system, curriculum, etc., is the “New Normal.”  It is a phrase used so often our line of work that it really carries no meaning anymore. However, I started thinking about this phrase in regards to my own health.

rockclimbimg

Although I do not like to admit it, I am fairly stubborn when it comes to my work ethic. What I mean by this is I will sacrifice pretty much everything else to “get the job done”!  And, I have been happy to do this most of the time. My work is rewarding, challenging, fulfilling, and interesting. Unfortunately, with my health compromised as it is, the work has become very difficult to perform. It is mentally and physically exhausting. It was this way even when I was in tip top shape, but I was able to balance it out. Now, I force myself to get through the day, sometimes counting how many hours or minutes I have before I can head out to go home.

I HATE this. Really, I do. Already, I have made compromises in terms of work, compromises I didn’t want to make at all. But, I physically cannot keep up like I used to do. Meetings after school? No can do. Extra duties during the day? No can do. Saturday workshops? No can do. I am mostly limited to the 8-9 hour work day, five days a week and even just that can be like climbing Mount Everest. My weekday evenings are spent laying on the couch like a zombie. Sometimes, on the weekend, I can manage a night out, but that is very rare indeed. It is all somewhat surreal. Like this isn’t my life. Sometimes, I think I am having a dream, and I will wake up soon and be able to do everything I used to do at work and otherwise.

But now after 20 months in treatment, I am beginning to realize that in fact, this is my “New Normal.” This is my life right now. It is a hard, hard realism. I’m struggling with it. I would like to believe that if I just keep my nose to the grindstone and keep up my stubborn facade that I will one day wake up and be myself again.Yet, in my heart, I know this isn’t going to happen. While I know I should not look at this as defeat, I feel like it is. I’m wrestling with changing my perspective because I do know that acceptance of this fact is the more positive way to go, but damn, it is difficult!

I am sure there are many of us struggling with this acceptance process. I sure wish it was easier; I wish I could snap my fingers and Wha La! I would be ok with the New Normal.

How do you accept this disease and the hurdles it brings to us? How do you change your perspective about the physical and emotional struggles without feeling like you are giving up a part of yourself?

Wishing all of us peace, -B

Has Autumn Arrived?

AutumnFor those of you up north, autumn arrived weeks ago, if not months ago! But here in the south, we have been waiting restlessly. Two weeks ago, it was still 90 degrees off and on. While we had a semi cool front, it sure didn’t stick around. But, this past week, temperatures at night have dropped to around 55, and in the daylight, it has only climbed to about 85 degrees. This is sheer heavenly weather, people!

So, this morning I was up by 6:30 – crazy, I know – brewed some coffee, then headed out to my little deck overlooking our mini pond. I took a stack of grading with me, but still, it was so beautiful outside. It was so very quiet and peaceful and honestly, it was just what the soul needed after battling through this past week. Thank you Mother Earth!

While it was a short week for us, every day felt like 2 combined into one. It really was that crazy. But it isn’t out of the ordinary, unfortunately. And, no matter how much I seem to get done on the weekend work-wise, I still feel overwhelmed almost every single day at work. Every time I think I have my head just above the water, something comes rushing in and I start to sink again. I am sure all of us have had this feeling at one time or another. It isn’t a good feeling, that’s for sure!

I take things off my plate. I delegate. I make lists. I ask for help. And still, I feel like things just keep coming at me, like bugs on a car windshield on a cool summer evening. I have reorganized, streamlined and outsourced. And still. Those damn bugs keep coming. In the past, my adrenaline would get me through, but I’m all out of that good stuff at this point. I only recently have felt even the twinge of a rush, and it didn’t last. Sure, I can push myself even harder, but then I just have to pay on the other side, in my personal life, which has already taken several hits in the past few years. Already, I come home from work wiped completely out, acting like Mr. Grumpy Pants. Pushing to get some chores done after the daily grind, you know little things like a laundry load and feeding the dogs, ultimately become humongous tasks, and my head and back start screaming for relief. Don’t get me wrong, I am very grateful I still have my job, but at this point, I am wondering, is it helping or hindering my recovery?

My brain is going around and around about this. When I first started treatment, I knew I did not want to stop working. It kept the illusion of “everything is ok” in play for me. This has gone on for about 19 months now. And, I have made progress. Lately, though, I feel like I have hit a wall in my recovery, and I am nowhere near the finish line yet. I am trying to figure out then, what has to give in my overall world to make room for me to work on my health even more. Anyone else in this predicament? And if so, how are you going about making a decision?

I am in a quandary. But, there is no need to make any decision today. I am going to keep working outside as long as I can until it heats up. I am going to breath in deeply and relax. I am going to drink my coffee and ponder ABSOLUTELY nothing.

I hope you all are having a great weekend – 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

Back to the Grind

So after a very relaxed and unproductive summer, that is unless you count watching gobs of Netflix and Hulu shows inspiring – as I do – I am back at it! No more waking up at 9, sipping on java and reading blogs, moving on to light housework then a long summer nap/rest/ Candy Crush marathon! Yes, while other teacher friends bragged about traveling and completing ultimate house projects, I “did” Lyme time as I like to refer to the time I spend healing.

I’m not sure how much I accomplished in Lyme time, besides maybe adding a few pounds to the 8 I have already put on during this recovery. However, I can say that the fatigue is lessening as are the headaches, both good signs as far as I am concerned!

Starting back for me was August 12th. We had 3 staff days that week and 4 staff days the following week. I survived because I had a day each of those weeks to catch my breath. But this week was the official first week of school for students as well. Starting off strong, I managed to get through the first few days juggling all kinds of things, including 3 separate preps for my English classes. But by yesterday, I was wiped. Now, I am up because I may be over tired? Not sure. Anyway, I’ m proud that I survived the first real week Of school, and I am grateful forsuch a kind and courteous group of young people. While I am apprehensive about my health and holding up day to day, I am still looking forward to growing relationships with my new group of students this year. After, 14 years of.teachning, I sure do love it!