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!

Two Steps Back…

Hey all you people! I haven’t been in touch lately. School started back, and it has been a whirlwind ever since. Mostly, I come home and lay in bed to rest. I rest on the weekends so I can work through the week. Or at least try to. I’ve been off of antibiotics for almost 7 weeks now. At first, there  wasn’t a considerably difference. After a few weeks, the headaches became less and the nausea was a lot less. Otherwise, things were not better or worse. But then, the first week in September, I caught a cold. My husband was in bed for three days over Labor Day weekend; I stayed as far away from him as possible! But so many people were sick at school, it was impossible to stay away from the germs.

So it got me. I held on, and I really thought I was winning the battle. But since then, things have gone south. My energy level is nil. I have a recurring sore throat on the right side and I have issues going on with my sinus. I’ll spare you the gory details but suffice to say, my sinuses are full. I can breathe through my nose most of the time, but there is stuff way up in there that comes out in the morning and evening through coughing. The body aches and the back pain are back. No appetite really. I’m guessing that the EBV is active again and maybe the Mycoplasma pneumonia load is high again. Depressing? A, just a little.

Walking forward.
Walking forward.

Heading to my LLMD tomorrow. While I look forward to going, I know I will walk away disappointed. Labwork takes a week, and then it is a VM recording from the doctor about the lab numbers and what is next for treatment. Nothing seems to change much. No matter what, I am guessing my doctor will end up putting me back on some antibiotics, and we move sideways? It hasn’t been a move forward in ahile by my account. While the summer was nice because I could rest as needed, I feel as though I haven’t made much progress in terms of my health since I had the Picc line last summer, 2014.

So, now what? I drag myself through every day, hoping the next day will be better. I’m finding less and less to enjoy as I am too fatigued. I have an appointment with a different doctor in November; I’m hoping to try and find some other ways to treat this along with antibiotics. I do have tons of supplements and I am trying to take some antivirals, but it got to where I was taking like 30-40 pills a day and that got old real quick. My diet needs to change. I know this. And I need to make it happen. I just get so tired!

We’ll see how tomorrow goes. At least I can tell my doctor what is going on and that in itself can be a relief. I promise to update soon.

Peace – B

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

Who am I?

I know we all ask ourselves this same question at any given time of the day, week, or year. But since beginning my journey with a chronic illness, I ask it even more than I used to. And now when I ask, sometimes, I don’t know the answer and that is so freaking scary.

An introspective person by nature, I live in my inside world much of the time. And I like it. In fact, if I don’t get enough of that time on the inside, it makes me a little bit cra cra. Stressed. Deflated. I’m not anti-social, just to clarify. I like people. Learning the intricacies of human nature is something of a calling for me; I am a hard-core people watcher. At least I used to be. I used to be better at people. You know, observing them, listening to them, interacting with them. My core has always been my sanctuary. Then along came Lyme.

Although not a fan of worn out cliches, Lyme indeed threw me a “curveball.” Not in the sense that I had my life all planned out and wham, but in the sense that, well, I never saw it, this, Lyme disease, coming. Then, in reality, everyone can use this cliche. I mean, I would guess that most of us are not sitting around thinking, “oh, today something life-altering will happen to me.” It just does. It happens. We do our best to deal and to move on from whatever is thrown at us.

It’s just sometimes, I feel like I missed the curveball. I missed the pitch, the swing, hell, I missed most of the game. It’s almost as if I have been plunked down onto the field, and we’re well into the 8th inning, and friends, I am not winning. I don’t have a strategy anymore. I’m confused about what inning it is. I’m calling a time out with none left. It’s a weird feeling. Maybe not so much as a feeling of being altogether lost, but a feeling of being very disorientated.

Everything about me seems more vague than it ever was before. Lyme has seeped its way into my neurological system, into my brain. Weaving itself into my memories, my thoughts, my ideas, my authenticity, I can’t navigate my way through any of it. I keep telling myself that my foundation, the true me is there, stable, indestructible, unwavering, and most of the time, I feel that this is true. But there are the other times. The times where I struggle to find my way back to Me, to the inside world. Lyme chips away at short-term memory. It can produce “‘a microedema, or swelling in the brain,’ says Bernard Raxlen, MD, a Greenwich, CT, psychiatrist and secretary of the International Lyme and Associated Diseases Society (ILADS)…”

Not remembering how to spell words, how to say a certain word, how to have conversations, are only a few samples of the brain issues related to Lyme that I experience.  “This [Lyme disease] affects your ability to process information. It’s like finding out that there’s LSD in the punch, and you’re not sure what’s going to happen next or if you’re going to be in control of your own thoughts,” Dr. Raxlen adds. Ergo the missing of the curveball pitch. Ergo the forgetting of people’s names, of what I just read, of what I just said 5 minutes ago. Even my long-term memory is in shambles sometimes. I try to recall something, digging deep, sifting through that soupy glob of eating cotton candy at a carnival when I was six, scrubbing dishes at the little Mexican restaurant where I worked when I was nineteen, and throwing bales of hay into the wagon when I was ten, all the while merely just trying to remember how to say “FHA” without stuttering 10 times when I get the the “H” on the phone with a customer rep. And, yes, this did just happen to me. Embarrassed doesn’t even begin to describe what I felt as I struggled to get the sound out of my mouth. Let’s try lost, disconcerted, terrified. Yes, that sounds about right.

How will I be able to stay whole if the very center of myself is starting to fade away? If I can no longer reach my inner sanctuary to have a clarity of vision? To know Who I am, my true authentic self?

Who am I?
Who am I?

 

Holding on with all of my might, embracing all the pieces available to me still, I’m going to get my head back into the game with as much clarity as I can muster, so to speak.

Take care Warriors.

Until next time – B

**If you get a chance, check out “This is Your Brain on Lyme” by Sillia. It explains in much greater detail and with less philosophical musings, the effects of Lyme on the human Brain. A huge thanks to Sillia.

The Livin’ Ain’t Easy

Hello to all. Summertime is here, and Janis Joplin’s rendition of “Summertime” is playing in my head. The “livin’ is easy,” no? Alas, not so much. It’s been a challenging first 2 weeks of this break to say the least. Summer began last week, (and I am a teacher 🙂 ) and I had a few days that I sincerely enjoyed. I worked one day, but then by the next day, I had so much back pain I could not get out of bed without help. The pain was on my right side and severe. Not just like a pulled muscle but achy and sharp all at the same time. So, I rested. Logically, I figured my body was just finally relaxing. I just needed to rest. Yes, right, rest would help. Also, I was able to get an appointment the next day with my LLMD just in case.

But, the pain did not improve. By Friday, the pain was almost unbearable. But no fever. My husband had to drive me to my doctor appointment. I broke down in tears several times because of the pain; it was ridiculous. You may be asking, Why didn’t she go to the ER? Well, we know with any chronic illness one doesn’t get far at the ER.

After a urine analysis and some more tears, it was determined that there were no kidney stones and no kidney infection. Whew. But I did have a possible UTI. Doc prescribed different antibiotics from the ones I already take for treating Lyme and some mega pain meds. Thank God. She told me that we would treat for 3-5 days, and then I should be good to go or at least back to Lyme Normal.

But, here I am, a week later and still having lower back pain. Not as crazy or severe as last week, but boy howdy, it’s still there. Next up then is a lower back MRI with and without contrast. This isn’t scheduled for another week. Before my diagnosis with Lyme Disease, actually 2 full years before being diagnosed, I had a spinal and brain MRI. I was having hip pain on the right side and numbness in both feet (both decent symptoms pointing to possible Lyme disease). That MRI was inconclusive for MS so the neurologist sent me on my way. If only one of the  4 doctors I saw that summer had tested me for Lyme I could have started treatment 2 years earlier and 2 years less sick. I’m not trying to be whiney, it just makes me angry sometimes.

I spent yesterday and much of today in bed. I’m struggling to be productive, to be of value but I spent and will spend most of my time online here or FB. I need distracting, and I don’t have the concentration skills for reading of any length right now. Struggling to stay positive and pain free are the real challenges at this moment.

Am I worried about the MRI? Not really, and why waste time worrying? I am hoping of course that it gives us some insight into what is going on in my lower back. I’m sure that whatever it is that it is Lyme related somehow, and I am very grateful that I now have a doctor who can and will help me and that it isn’t a waste of time and a lot of money like the last one I had in 2011. Last time I definitely got conned in that I had no idea that the Imaging office was out of network even though my neurologist had sent me specifically to that place next to the hospital where he was located! Oy. Insurance companies, but that is for another post.

image

I’m trying my best not to be depressed. But thoughts and lists are piling up in my brain:  I’m not doing anything productive or fun. This is my summertime and the days are precious. I had to cancel a few appointments because of the pain issues. My husband has been working non-stop, and I haven’t seen him much. I haven’t been away from the house for a week, whine, whine, whine.

Anyway, thanks for listening and thank you all so much for reading. I do hope you and yours are having a good time and that you are able to enjoy the good stuff coming at you.
Gracias – B

Peace and joy to you all – 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