This is an excellent in-depth article about our healthcare crisis here in the USA in regards to Lyme disease and co-infections. Please take a few minutes to read and process the continued negative results of the CDC not addressing this EPIDEMIC.
Good Monday morning, my people. What a most glorious weather weekend! Finally, we here in the bowels of Texas have had some fantastical temperatures. Way better than the 90+ temps from last weekend. I was able to get out and enjoy some of this myself. Awesome!
So I am at the gas station on Friday afternoon and I hear this song “Don’t Dream It’s Over” by Crowded House blasting through the outside stereo system (I mean, who in their right mind can pump gas without a soundtrack?) except, unfortunately, in our skewed one dimensional universe, it isn’t Crowded House I hear singing this melody. Actually, I’m not even sure who it is, but it freaks me out all the same. I mean, this song isn’t THAT old and someone has already remade it? And the remake isn’t even a good one. Seriously? Can we not come up with any new ideas, songs, writing, etc. that isn’t just a remake of the old? I know, I know. Most likely, my aggravation is just a sign of my aging.
But the song takes me back to when it was first released in 1986. Ok, ok, that was 30 solid years ago, but it certainly doesn’t excuse the horrible remake of the Original. Yes, I was in high school, a sophomore or junior, and it was a song that was popular and played on the radio incessently. This was BL, Before Lyme, and I was into so much, and I had the energy to do pretty much whatever I set my mind to! In high school, I was a member of the school paper so I went to all kinds of high school sporting events (my entry level postion was a sports writer – too funny), and then I worked my way up to editor my senior year. As most teenage kids, I was very social. My circle of friends was far and wide. At 16, in Kansas, I could drive already and so, this made getting together with friends way easier than not.
All that energy! If only I could have bottled some up and saved it for a rainy day or a rainy year! My world is so limited now that I am dealing with a chronic illness. Hey now, I am not trying to be depressing nor morose, it’s just the hard truth right now. I am sure if you are dealing with a chronic illness also that you “get it.” There’s no one to blame and no one at fault about this situation. It just IS.
At this point, in the throes of severe fatigue, I work and I rest. These are pretty much the only 2 things I can manage at present. Sometimes, I move out of my body for a few seconds and view myself as an outsider. And when I do this, it feels so weird. How can I be so tired and fatigued all of the time? How do other people manage to work and be social? How does anyone have the gumption to get up early on a Saturday, take care of children, go to events, and other things? All in one day???
But then, of course, I remember these are all things I used to do as well, without a thought about how I might be able to juggle all kinds of things going on each and every day.
I guess I am living in an alternative universe for now. A universe where fatigue rules, and Miley Cyrus sings, “Don’t Dream It’s Over.” Hopefully, here soon, I’ll be back in the real world where I’ll “Get to know the feeling of liberation and relief.” Until then, my pretties, take it easy and enjoy the REAL SONG:
Peace – B #LivingwithLyme
We all need a few laughs. Have a great Sunday. – B
Hi there. I know, I know. It’s been awhile. Too long in fact. I hope things are joyful in your world. Between going back to work (over 2 months ago), and dealing with this severe fatigue, I haven’t really done much at all besides try to get to work each day. Nothing to write home about, you know? It’s kinda boring to write Hi Guys, I still have Chronic Lyme, Chronic Fatigue, and Fibromyalgia and some other stuff. And even more boring for you to read! But we’ll forge on.
While things at work are going well considering my limitations, I’ve been struggling physically and emotionally, mostly because, well, first, we are getting close to the 4 year mark of this diagnosis and the beginning of treatment for said diagnosis. And, yes, as I’ve shared before, there has been progress made, man, it sure feels like it hasn’t been much. I mean not much for a 4 year mark. As the patient, it is very difficult to be objective about measuring “progress” as well. Another reason I have been struggling is that the severe fatigue is back, yet again.
There’s no way to plan when dealing with severe fatigue. I can’t rest one day, and then feel so much better the next. I can’t save up energy to use as I would like to. Not that there would be much energy to save up at this point. Still, if I could save up energy, I would totally be strteggically planning! But, severe fatigue is somewhat or more like always unpredictable. Anyway, it’s back and rearing it very ugly head!
As many chronic fatigue sufferers try to explain severe fatigue to a “normal” people, there don’t seem to be enough metaphors nor analogies to clearly describe what severe fatigue feels like. The Spoon Theory is a good start, but on some days, we have no “spoons.” So we get up, maybe, and start the day with a zero balance or a deficit of energy. And this just keeps going on, day to day. Month to month. It can be a spirit breaker for sure.
My doctor, at least my local doctor, looks at my labs and says, “yes, of course you are having severe fatigue.” All the numbers doc watches are low when they should be high. The EBV is flaring again, so that adds to the crazy chemistry going on in my body. Inflammation markers are off the chart too even with my dietary changes. Add that to the fatigue as well. Doc tells me to keep doing the B12 shots, the ATP Fuel, the Glutathione shots. I say, OK as I wonder when I might be able to make it through a day without feeling the crushing tiredness. I know (or at least keep the flame of Hope lit) that this cycle will end but sometimes it is hard to remember when every day, every hour is weighing on me like a heavy stone.
I feel bad when my friends ask how I am doing. They try to keep up with me, but I move at a snail’s pace anymore with nothing new to report for months, and now, for years. They ask, How was your weekend? Are you ready for the holidays? What are you doing next Saturday? And right now, unfortunately, I honestly don’t know how to answer.
- How was your weekend? A: It was great. I spent most of it in bed.
- Are you ready for the holidays? A: My head explodes, LOL – God, no.
- What are you doing next Saturday? A: Uhm, I think I have an important appointment scheduled – with my bed.
Speaking of my bed, I need to go change the sheets and get it made so I can climb back up in there. Hoping this Sunday brings you cooler weather and happiness crafted for the soul.
P.S. Thoreau makes me happy. I hope he makes you a little happy too.
** “I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.” **
As many of you already know, I am a part of the Chronic Illness Bloggers network. Often, we have the opportunity to review items that can possible assist us with our day to day activities. Being a part of this network has been an excellent way for me to connect with various products that I might otherwise not know about. Before this, I had never heard of the company Honeycolony nor about any of its products. However, now, after using this product for over a month, and getting to know what this company is all about, I am so glad that I tried this product, Equilibrium Energy Superfood.
Before I move ahead with the overall review, first, I would like to share some information about this company, Honeycolony. This company is committed to organic and sustainable products. I scoured through their website, looking at what kind of value system this company presents. And what I found was that this is a company that prioritizes QUALITY as one of its most important components. In fact, Honeycolony promotes itself as “HoneyColony. We do not trade excellence for profit.” Every one of the products I looked over on their website is made from organic and pure elements. The values this company promotes such as holistic healing, medicinal activism, as well as environmental sustainability (especially activism for the preservation of bees), these values also align with my own. So, being exposed to this company, let alone to its products, has been a wonderful experience!
But now, let’s talk about the actual product I was provided to try out. The Equilibrium Energy Superfood, a 2.3 ounce jar, arrived in my mailbox a little over a month ago. It’s touted to “energize mind, body, and soul.” While I always have interest for any product that can possibly help me in my fight against chronic fatigue, I also have a healthy sense of reality in that many times, I get my hopes up only to be disappointed…yet, again. So this is how I approached my experience with Equilibrium Energy Superfood.
First, I had difficulty reading the label on the jar. Trying to decipher the directions proved impossible even with my reading glasses on (and off). Finally, I just went back to the website for this information. Granted, this is a small jar and bigger print most likely could not be implemented. The website has all of the needed information about Equilibrium Energy Superfood, a detailed list and description of organic ingredients, the suggested dosage, along with the various benefits. Many of the elements included in this product are items I have tried individually throughout my treatment for Chronic Lyme disease such as ginger, Tumeric, and raw honey, just to name a few.
I immediately began with the suggested use of “… a teaspoon a day of this super potent superfood blend, preferably on an empty stomach. However, you can add it to a smoothie and have a teaspoon pre workout. One 12 ounce jar should last you a month with a teaspoon per day. Extremely POTENT.”
Looking at this superfood, it has both the consistency and viscosity of molasses. I expected it to taste pretty terrible. BUT, it tastes just fine! The overwhelming taste is that of honey, and there is no after taste whatsoever. I take it at the beginning of my day, with breakfast. At first, I didn’t really notice any difference at all. Then, I started back to work after my summer break (I am a teacher). And, a few weeks ago, I really started to notice a difference in my morning energy levels. Starting back to work after a couple of months off is difficult, even for a healthy person. I was dreading going back to work because of the daily challenge, especially in the morning, and especially with the fatigue.
Presently, I’ve been back at work for almost a month, and I have been diligently taking my Equilibrium Energy Superfood every morning as a part of my routine, and I am seeing a difference. In the past, by mid-morning, I am spent, and the rest of the day just grinds on. While using Equilibrium, I’ve been able to get past that mid-morning slump! It has been awesome! I admit, I have tried taking a second teaspoon in the afternoon, but I haven’t seen a result from adding another dose later on. However, I also have not done the afternoon dose on any kind of consistent basis.
Faithfully taking a teaspoon daily since I received the product, I am just now almost out of the product. I am surprised by how long this 2.3 ounce jar has lasted! I do plan on ordering more of this product and keeping it as a part of my regime. Admittedly, the price, $53.95 per 2.3 ounce jar, is high, but not when considering its impact and how long this product lasts (again, I take just a teaspoon or less daily). As a chronic illness patient, and as many of you I’m sure, I have tried ALL kinds of things. Anything and everything within reason to propel me towards feeling even just minutely better and/or more comfortable in my daily life. Is not off the table to try. Without a doubt, I recommend Equilibrium Energy Superfood to you.
I hope this day finds you at a pain-free level and with joy to spare. Peace, my friends. -B
My brother was able to snap this incredible picture of bald eagle in his neighborhood today. Amazing! I remember hearing when I was growing up that bald eagles were near extinction. Most were found only on the upper Northwest. It is incredibly inspiring to see this king and especially here down south. I just had to share. I hope you are starting your week off right by soaring above the fray. Take care, desires. -b
So it’s getting close to that time again, the 3-4 month mark where I go for follow-ups with both of my doctors: the one in town and the one out of town. First, we will head to the out of town doc here in a few days. This will not be a face to face visit. It will be our (mine and my hubs) 2nd Group Visit, Group B (2nd visit of 4-5). Right. A Group Visit. This is my life as a Chronic Lyme patient. Welcome.
You may be wondering what that is all about. I am still wondering myself. The first one was interesting. Patients checked in every 15 minutes. Vitals were taken and then heart test was completed. Then, we all headed to another larger area – there were about 20 of us – and we had about a 2.5 hour visit. During this visit, our doctor provided all kinds of information to us about Lyme disease and multi-systemic issues it may and can cause. Much of this information I already knew but it was helpful to have the information presented all at once.
Then, after hearing all of the info, we were given a lab request sheet. We were told to mark some of the labs we thought we should have done based off of the information and based on what tests we have already had in the past. Now, while this wasn’t a bad idea, my main concern was “HEY, is this covered by my insurance?” And of course no doctor can anser that question. From the list provided, and after reviewing what labs I’ve had done in the past, I was still looking at at a sizable list.
There was no face time with my doctor. I did have a couple of questions, but with so many other people vying for her time, plus my fatigue, I was ready to go. Now for the aftermath.
Luckily, this was summer because, I kid you not, I spent some 10 hours figuring out what exactly the labs codes meant, researching diagnostic codes, then researching the code numbers for the labs (my doc’s lab request did not have any lab codes on it, and THEN, talking to my insurance (yet again!) about what might be covered or not. All of this BEFORE I went to the actual lab to get the tests completed.
I can tell you that if it had not been summer break, I just would not have had any labs done because I would not have had anywhere near that kind of time to research.And, wait for it….I also received a separate bill for the little heart exam before this Group visit (I had NO idea this would be billed as a separate charge to my insurance, who then did not cover it) and I think it is like $130. I owe that to my doctor;’s office and must pay it before my 2nd Group visit next week.
Oh right, I also just received another separate bill in the mail for the dermatologist visit I had this past July. Yes, I paid when I left in July. Yes, they told me they were sending off the biopsy. No, they didn’t tell me it would be YET another bill. As a matter of fact, when I left my appointment that day, they had me pay $130 on top of the $50 co-pay because I was having a biopsy, and I wasn’t going to get charged separately for the lab work. Really? Because I just had a $350 bill just show up from some LLC lab place that I am assuming processed the biopsy? Not quite sure but that is my guess. Yes, I can call the doctor’s office. Yes, I can call the lab that has billed me. Yes, yes. It’s just so time consuming and energy zapping, and hours more wasted……I cannot imagine what navigating this whole health “care” system is like for patients way more ill and sick. It’s ridiculous but even more than that, it is CRIMINAL. Highway robbery. In our own country.
So needless to say, as we all already know, health insurance sucks, the health system in this country sucks. I know more people than not who have been railroaded and screwed by our healthcare system and most of this has been in the past 3-4 years. As patients, we can’t get prices beforehand, we can’t really “shop” around as heath insurance companies tout because from at least what I have seen, every step of the way, not one person or entity can give you a real “answer.” They shift us around and around, and it isn’t until we get the bill that we can remotely begin to try and figure out anything and by then, everything is so convoluted, it can take days, weeks, months to try and sort anything out and even then, it is rarely to the patient’s benefit.
Anyhoo.I am trying out one more Group Visit. We’ll see. Although the information shared last time was good, honestly, there wasn’t too much I didn’t already know.And the bottom line cost of that visit, the trip, the labs, the supplements, etc. at this point are not outweighing the benefit I gained (it wasn’t much if indeed anything) so I may need to reconsider doing the Group C meeting.
Well, my people, I hope your September is going well. Stay cool and take care – B
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Hello my peoples! Yes, I have been so MIA these past 3-4 weeks, and I will tell you, I miss blogging. Yet, duty calls (code for JOB). Work started back up earlier this school year (as in 10-12 days earlier) and right now, it is taking up almost every spare minute I can manage along with being chronically ill. Although, and I am probably forgetting something major, I feel like this weekend will be a time for me to catch up. (Please, God, please!)
My Post Summer 2016 Life thus far: I am teaching all dual credit (high school/college) freshman composition classes this year, which is very cool, so this makes for approximately 132 students total across the five classes I teach daily. Awaiting my undivided attention in a cubby on my kitchen table are about 110 essays to grade, add to that about 75 online responses to a novel we read..the picture is becoming clear, no? To my credit, I did grade about 25 of these yesterday along with another 25 responses to another piece. And grades are due this coming Friday. You heard, correctly. And my Gradebook is blank at this moment. I believe, or rather hope, that I am just going crazy right now because, HEY, it is the beginning of the school year, and quite honestly, I blank out when it comes to both the beginning and the closing of any school year every.single.year. Sixteen years later, I should know exactly what to expect.
My Post Summer 2016 Health thus far: My health is holding up ok so far, but I have really been pushing it at every turn, and I know I need to get balanced ASAP, or there will be fallout. Is crying to and from school considered fallout? Maybe. Yeah, so that’s been happening. Not every day, but enough for it to be awkward. And not because I don’t want to go to work or come home; it’s just at certain points in the past 3 weeks, my body and brain just feel soooo overwhelmed and tired that I can’t even have an appropraite emotional response to anything. Mental capacity has shifted into Overdrive, and it is causing memory issues, I know it is the neuro-lyme. Or as stated above, I am just going crazy right now. *Note the key word is “now.” LOLs
The picture above is a perfect visual for how I feel at the moment! (from a really cool website http://www.firstcovers.com). Thanks for hanging in there with me. I promise I will get a decent and somewhat interesting post up as soon as I can get my head above water (please send positive vibes my way that this will happen for me THIS WEEK). As always, I appreciate your stopping in to read and comment. Drop a hello if you can. I’m missing my biggest bloggies fans. Have a fun and safe rest of the holiday weekend. BTW, I can’t get that Counting Crows song, Miami, out of my dang head!🙂 Peace-B
When summer opens, I see how fast it matures, and fear it will be short; but after the heats of July and August, I am reconciled, like one who has had his swing, to the cool of autumn. –Ralph Waldo Emerson
I’ve been fortunate enough to be a part an organization, Chronic Illness Bloggers, for the past 4 months. This has been an absolute great experience. Please help spread the word about my blog in hopes that it helps people protect and promote solid information in regards to Lyme disease. Also, please follow the link below to get to my featured profile and to The Chronic Illness Bloggers Network.
As always, I am ever so grateful and humbled by your support -Belle