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!

The Turbulence of Lyme Symptoms

http://www.dailymail.co.uk/news/article-2336338/The-everlasting-storm-Stunning-images-unique-phenomenon-Venezuela-lightning-raged-EVERY-NIGHT-thousands-years.html
http://www.dailymail.co.uk/news/article-2336338/The-everlasting-storm-Stunning-images-unique-phenomenon-Venezuela-lightning-raged-EVERY-NIGHT-thousands-years.html

One thing that I think all of us experience as Chronic Lyme patients is the comings and goings of many different symptoms. Oh, yes, there are some symptoms that stay with us loyally, never leaving our sides. But then there are those symptoms that show up off and on like fair weather friends. You know the ones. For me, my Lyme best actors are joint pain, headaches of some degree, and muscle aches. Best supporting actors? Nausea, dizziness, achiness, joint pain in other joints, well, I could go on. For me, the hardest thing about all of these is how they can come and go so quickly. I have tried to find rhyme or reason for this but there really doesn’t seem to be anything that is a consistent trigger, at least for me, other than overdoing in some way (physically and/or emotionally) the day before.

Sometimes, I can go for half a day with just some joint pain and a nagging headache. This isn’t bad at all! Then, BAM. Full blown horrendous flu-like symptoms. I have to get to a place to lay down, shut out the light, try and think about happy moments in my life because my head feels like it is hitting a wall. My stomach cramps up and the nausea is overwhelming. This is what I like to call the main event. It can last for minutes, hours or days. How does one plan for anything with these kinds of things happening seemingly out of thin air?

Like you all, I try to plan ahead. I hope and pray that on the day of a planned out, party, dinner, etc. that I will be feeling “good” and that I can attend. More than many times, I have had to cancel plans. I have even tried resting the day before but again, it doesn’t seem to effect the next day’s outcome at all. It’s upsetting, frustrating and most of all disappointing. Staying at home in bed is not my idea of a good time.

So for an example, my husband and I were out yesterday, picking up some items for our garden beds. Actually, it was nice being out and about, looking at all of the beautiful plants and flowers. I guess we were there about 40 minutes. By the time we left, my head was beginning to play its tune; it was time to go home. Once home, I had what felt like a flu. A strong headache, stomach nausea and indigestion and stomach cramping. I spent the rest of the afternoon in bed, nursing my symptoms as best I could.

Today, I was able to work a bit outside earlier in the morning. Feeling the cool breeze on my face and the sun on my back was pure joy. The dogs kept us company while my husband and I pulled weeds and cleaned up the garden area. My husband, a very sweet man, said, “I’m glad you are out here.” I was glad to be out moving about, too. One day at a time and sometimes, one moment at a time.

Happy Easter, friends. Don’t forget to take The Lyme Disease Challenge if you haven’t already!  🙂   -B

Take the Lyme Disease Challenge!

The Challenge!
The Challenge!

A big howdy to everyone out there! I hope this finds everyone having a pain free day. For this post, I just want to promote the Lyme Disease Challenge. This is a social media movement striving to bring more awareness and understanding to Lyme Disease. Check out www.lymediseasechallenge.org  for more details and printables!     Lyme-Disease-Challenge-Informational-SM-Flier-240x300

Even if you cannot donate to the cause, even just doing the Challenge would be awesome. All donations will go to benefit the International Lyme and Associated Diseases (ILADS). Already, almost $15,000 has been raised. This is a great opportunity for all of us to get involved and spread awareness about this disease. The ladies who organized this have worked long and hard, and now it is time for us to do our part!  We have a voice, we have the tools, and now we have the movement!  I hope to see your posts taking a Bite out of Lyme soon. #lymediseasechallenge

images

Peace – B

Word Loss

**WARNING – THIS POST IS DEPRESSING. PLEASE DO NOT READ IF YOU ALREADY FEEL DOWN.

These past 2-3 weeks have not been good for me. I am struggling in every single area of my life: work, personal, mentally, physically. I have not been optimistic in awhile. Between attempting to cope with my cognitive issues, which have become many of late, along with the physical challenges of nausea and body pain, my personal relationships are indeed failing. I can see it happening, but I don’t know what to do to make it stop. Any of it.

I do my best at work. I know my attitude is not always optimal, but I am really trying my hardest. Communication is difficult even on a “good” day. And communication, well that’s kinda “my thing.” It’s something I take great pride in and something I have been good at my entire life. But not now. Although an overused analogy, my brain feels like swiss cheese. I can’t remember regular words such as pliers, consistency or ambiguity when I need these words. My short term memory is almost nil at times. I keep asking co-workers and my husband the same things over and over. I feel like I am slowly going insane. Not being able to remember, not being able to recall basic words while speaking, spelling words incorrectly all of the time is so very frustrating and aggravating. This proceeds to heightening my anxiety and my anger. I imagine that to some degree, this is what is is like to have the onset of Alzheimer’s.

And so, my negative persona and my overall hostility rises. I avoid conversations like the plague. I don’t want to talk because, to myself, I seem to make no sense at all. I imagine that others feel the same when I speak. I am alone. I feel so singularly alone in this.

There is no quick fix, and I get it. I have been very patient and open to any and all treatment over these past two years; I have diligently taken my meds. I do my best to keep my diet in check, I try to stay upbeat and optimistic. I am still working full-time. Yet, I still lose.

I still have the dreaded headaches every day. Joint pain. Every single day. I have made some progress with endurance but I still exhaust quickly. While, I think when in the midst of a migraine and nausea, “this is the worst!” really, the slow decay or what seems like decay of my memory and cognition is ultimately the issues that worry me the most.

For if I can’t use words correctly, beautifully, exacting, then who am I? Always one to rely on my wits and sarcasm, without these, I can’t and won’t ever find my way home, back to who I am. I know, I know. One day at a time. Like the Indigo Girls sing, “We’re sculpted from youth, the chipping away makes me weary.”

Right now, I am weary.

Peace. – B

Apologies

Hi all. This may not be a positive post so I understand if you have to skip it. I’m struggling. There is no other way to state the fact. It’s been really tough since the New Year when I contracted a cold/upper respiratory infection. After three weeks of all that stuff, then it’s that time of the month, followed by the full moon, and here we are.

Last Sunday through this past Thursday was like a challenge course. Hip pain, lower back pain and headaches plagued me all week long. I attributed some of it to the full moon on Monday, but who knows? I have also been on Stephen Buhner’s suggested herbal protocol for Lyme for about 3 weeks now as well. Then yesterday, I actually felt fairly decent!

What a terrible trick though. I started the day positive, without much pain at all which I realized made my brain work better. So I felt like I was a super ninja most of the day. Until about 3 p.m. Then, the storm clouds rolled in.

My head began to ache accompanied by nausea. I took a pain pill. Nada. The headache laughed in my face. Headed home, took some alka selzer gold, slapped on my eye cover and proceeded to lay in bed until about 7:15. The pain dulled a bit, but I could tell it was still lurking in the shadows…..

I was supposed to work this morning. With my team. I had planned to do this for months. But the headache came back with a vengeance about 5 a.m. this morning. One huge apology sent out to my team leader about how I could not make it today. I was so disappointed with myself. I continue to stack up all of the things I plan and then cannot follow through on.

But, I thought I would still be able to make it to dinner with our friends this evening. Well, I’m sure you can guess the outcome of this drama. I had a few decent hours. Until about 3 p.m. When I told my husband I couldn’t make go tonight, he was understandably upset. Then I got upset. I’m just so very tired of apologizing to everyone for everything. I’m tired of making plans and then canceling. I’m tired of not being able to hold up my end of any bargain.

I love my husband, my friends, and my work. I don’t want to let anyone down and yet, I feel like today was a trifecta. And I am sorry this post is so negative.

Thinking of you all – B

#readbetweenthelyme

Agitation and Frustration

Hi out there! I sincerely don’t remember when I last posted so just in case, Happy New Year! I was sick through the holidays, and I finally kicked the crud after 3 weeks, a shot of antibiotics in the butt, and some more oral antibiotics. So, it is back to dealing with Lyme only which is a good thing in a way.

I wasn’t going to write today because I haven’t been doing well emotionally this past week, and I don’t really know how to explain it as I am also having difficulty with word recall and with just plain old thinking and processing, but here it goes. This past week, I have been experiencing a lot of agitating and frustrating feelings/thoughts. I think it is caused by stress on top of my limitations to process said stress. Multitasking is just a bad joke on me with my cognitive skills impeded. For the most part, I can manage, but I’m not sure what happened this week. One day, I felt like I was in an agitated and stressed mode all day long to the point that by the end of the day, it felt like it had amped up and turned into significant anger. Anger at what, who knows? I just felt very aggressive, and this is not me. I could not rid myself of the feeling. The thought of feeling insane crossed my mind. It finally went away hours later.

It happened again yesterday morning as my husband and I cleaned the house. We were working and talking about any and everything and I just started feeling the agitation building up. It is really a different feeling than feeling overwhelmed. When I feel overwhelmed, I feel like getting under the covers and staying there for a month. I don’t feel angry; I feel defeated. But this is much different. My mind starts racing a mile a minute and yet, I can’t think fluently. I try to express myself but nothing comes out the way I am thinking it will. Then, as if to add to the pile of thoughts, my brain starts honing in on things like I need to pay bills, how will I make it through the work week, how can I get my grading done with my brain in jumbles, what meals will we need for the week and how will I get to the store? It all starts tumbling around in my head and then my mouth starts moving but in no way am I articulate. Finally, it feels like everything speeds up, and I can’t stop it.

I tell you that this is a new thing. I am wondering, is this a new symptom of the chronic Lyme? My husband agrees and says it is new as well. I really don’t like it at all (not that anyone would) because I start feeling out of control, and I am not sure how to make the OCD thoughts and the agitation stop. Does anyone experience this or something like it as well? And if so, what kinds of things do you do to cope? Yesterday, I went outside and tried to do some breathing exercises. It did help for a bit but it was still kinda scary. Even at this point, my brain feels like it is gearing up now and just thinking is becoming tiresome and yet, stressful!

I sincerely would appreciate ( insert NEED) some feedback and suggestions. Thank you! I hope your week has been a good one! -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

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

 

Back to Bed

Well, all in all, this Thanksgiving break, I have had a decent run of it. But Thursday and today, I am paying for it. It’s 12:30 p.m. on a Saturday; my husband and in-laws are outside working on our new shop and here I lay in bed. We did go to our friends’ house last night for dinner. It was lovely, and I had not seen them since Labor Day weekend! When I am at work that is about all I can manage to do so socializing it not something  can partake of much these days. The evening was nice and I kinda felt normal, and not the “new normal”, the old normal.  🙂

In an offensive move, I played everything safe, too! I took my meds as scheduled, I drank just one glass and a smidge of champagne, I ate more salad than anything else, and I shared a piece of cheesecake with my husband. I know that alcohol and sugar are not great for me but, I promise, the rest of the time, I do a pretty good job of not using either. We were home by 10:30 also!  But then, I could not go to sleep.UGH.

I took my doxepin as soon as we arrived at home. I knew it would take a bit to kick in, then I took lunesta. But for the life of me….I think I finally managed to fall out about 1 a.m. I guess this is part of the reason I feel so horrible today? Damn! Waking up about 6 a.m. to give my Chihuahua Chino his anti-seizure meds, I could barely get out of bed. The bodyaches were everywhere; I basically limped to the kitchen. No worries thought I, I will take a pain med and all will be better. Chino got his meds, and I took mine and headed back to bed. I was finally able to get warm and cozy and doze off for a few more hours. At 9, when I did get up for good today, I was in as much pain all over as I was at 6 a.m. Plus, the headache started its familiar knocking. Moving around as much as possible and having my daily cup of joe, I still could not shake the body pain. It’s one of THOSE days, friends. Uncool.

Struggling and stubbornly, I did some household chores and then headed back to my sanctuary, my sweet bed. But, I am still hurting, and I feel frustrated. Chino and our other Chihuahua, Boo Boo, are on the bed with me sacked out, and I am writing this blog.

Where I am today!
Where I am today!

Can anyone suggest anything to help alleviate the bodyaches and pain? Anything? I have tried an Epsom salt bath, and I have taken a pain med. Both have helped a bit, but I a still having difficulty moving around which is a bit scary, honestly. What are some things you do to at least push back these symptoms and/or take the edge off? Thanks in advance.

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