There really is a term “gettin slothy!” Who knew I would be so cutting edge with the urban slang! Go me!
Anyhoo, the past few days, I’ve been in this mode. I feel a bit guilty, but I truly feel like doing nothing. I’ve watched a lot of Netflix but that is all I can be bothered to do. No worries though; I have been feeding and watering the animal menagerie. They all seem quite content that we have been laying around in the AC watching copious amounts of television.
I can’t seem to get motivated! UGH. I would blame it on the Lyme but I haven’t been feeling terrible. Yes, I do have to rest off and on especially with the new meds I’m taking but not for 5 hours straight! And overall, I’m feeling better this week then I was last week, so what gives? In my defense, my husband has been really busy all weekend with some side projects and so I’ve been mostly alone. I don’t mind it, I just obvioulsy can’t take any initiative by myself!
Not now, please!
I tried to be better today. Although I told myself I would complete an online class for work and well, that didn’t happen. But I did do some laundry and a few other household chores today so can we call it a “productive” or rather “not wasted” day, officially?
I mean I guess a positive of this situation is I am realizing I’m gettin slothy. Last July 4th, I wasn’t feeling very well at all. In fact, my husband went to a little get together, and I just couldn’t due to symptoms and fatigue. So that is good news. I’m not sure if we are up to anything tomorrow honestly. Maybe a movie. Maybe a meal out. Not sure. But either way, this summer, I will be able to do some stuff if we decide to which is a really nice change, no doubt.
On that note, I hope that you and yours enjoy Independence Day tomorrow (for those fellow Amercians) and I hope absolutely everyone has a great week! Take care, friends.
Hi my people. Yep, I’m missing you too. But, I am struggling with inspiration and with life in general at this point it seems. These past few months have been tough. I know I am being vague in a way, and I am so not trying to be evasive. Overall, it’s been a challenge to keep working. A real challenge. Don’t get me wrong. I love my job. But overall, it has just been a struggle to keep it up while dealing with the chronic fatigue and a myriad of illnesses I contract due to my sucky immune system.
So, yeah, both the emotional and the physical challenges of working a full-time job have pretty much consumed all of my time in recent months. Unfortunately, I am also trying to dig deep to find joy. Even in the little things. I don’t know if it is the time of year or the incessant constant day to day barrage of symptoms, or the trying to escape some of the chronic symptoms that seems to have made me shut-down a little on the inside. I’m trying to figure it out but honestly, I have found even that kind of thinking and reflection just exhausting. IDK.
I just wanted to check in becasue, well, I miss the blogging world and my blogging people. I promise that I am making a concerted effort to get myself back on track and back in the Game so to speak.
I hope this finds you well and full of JOY. Peace. -b
** “I have been given this product as part of a product review through theChronic Illness Bloggersnetwork. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.” **
If you are a first-time visitor, well, HOWDY!! And thanks for stopping by! Here are some other posts you might like check out:
Hi, my people! Well, here we are, post-election in the states and moving quickly towards the holidays.
When I was first diagnosed with Chronic Lyme disease, now almost 4 years ago, I thought I knew what it was all about. You get bit by a tick, you might get sick, and then you are treated and cured quickly. HAHAHA! Little did I know! So once I began researching this crazy and unpredictable disease, I began realizing that there is no CURE. That in many cases, including mine, Lyme cannot be merely treated with 14-28 days of oral antibiotics. Not even. And I began to understand, especially after being sick 6 – 12 months, that I was going to have to try out some unconventional, non-Western medicine options, to treat this bacterial infection.
I had been hearing and reading about CBD oil long before I decided to try it out. Information was mixed but the one common denominator seemed to be QUALITY of the product. Yet, I had no idea where to even begin. My first foray into the CBD sphere was, and now regrettably, a product I found and purchased from a seller on Craigslist. I know, I know. Believe me, I really was clueless, and in my Lyme social circle, no one had a recommendation for me. But I knew that I wanted to try this option. No Bueno. Honestly, I think there was turpentine in it. I tried to take it a few times, but the taste was just so disgusting, I could barely gag it down.
From that point on, I realized, and the hard way, that I needed to invest in QUALITY. I continued my research and then recently, I was offered an opportunity to try out HoneyColony’s CBD Oil. I have tried this company’s products in the past, and I have not been disappointed. I jumped at the chance to try out their CBD Oil.
HoneyColony’s CBD Hemp Oil is a blend of several ingredients, including Teasel root as well Astragalus Root. You can visit this page for a much more detailed list and explanation. I have tried both of these roots before in the past with some positive effects, but not at the same time and not as a part of a CBD Oil mix. When my product arrived, I was really excited to give it a shot!
I know some people may be hesitant to try CBD Oil as there is a lot of misinformation out there, including that it makes you “high.” However, according to HoneyColony, “Cannabidiol (CBD) is extracted from the Cannabis plant and has no euphoric properties whatsoever. This formulation offers all the health benefits of CBD without the feeling of being high.” At no point of my using this product have I ever had a euphoric feeling or a feeling of being “high.”
The first stop I made before adding this product to my daily routine was at HoneyColony’s 13 Commonly Asked Questions about their Superior CBD Oil product ranging from ingredients to usage. Since this quality CBD oil is mixed with coconut oil (no weird ingredients in this product!), this oil has a very smooth taste. There is no aftertaste nor did it bother my throat or stomach. It is silky sweet and easy to administer. I take just a drop in the morning and then one at night. While I haven’t necessarily seen a huge impact in the morning for myself (and mornings are so, so difficult for me), I have experienced an effect in the evening. While I struggle with getting up, the joint stiffness and fatigue, lately, I have really been having sleep issues. I can go to sleep, but then I tend to wake up 3-6 times a night. It’s been a serious hindrance in the past few months.
So I started taking a drop of oil about an hour before bedtime as suggested on the 13 Commonly Asked Questions page. This seems to help me relax enough to get to sleep. Recently, I have also started taking a drop when I wake up during the night. Doing this has been beneficial in helping me get back to sleep and to stay asleep throughout the night!
Look, HoneyColony products are top-quality products! Yes, the price is higher, but again, the QUALITY is worth every penny. I’ve tried enough other inferior CBD oil options to pay twice over what the cost of one of HoneyColony’s CDB bottles cost. I’ve thrown away more that I care to share. And this bottle that I received about a month ago is still more than half full. I won’t go anywhere else in the future to purchase CBD Oil other than HoneyColony!
Happy Sunday, my friends. Take care – B
P.S. If you are a first-time visitor, well, HOWDY!! And thanks for stopping by! Here are some other posts you might check out:
** “I have been given this product as part of a product review through theChronic Illness Bloggersnetwork. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.” **
I’ve always had sensitive eyes. My eyes are blue, and so anytime I am outside, even on a cloudy day, I have to wear sunglasses. But since contracting Lyme disease, the light sensitivity has increased, and I have to be careful about too much exposure to light, both outside and inside.
With this light sensitivity sometimes comes a migraine. I never had these either before Lyme disease. Now, I have daily headaches and periodic cycles of migraines. I have found that light can be a trigger for a migraine. I am especially sensitive to fluorescent lighting which is pretty much everywhere!
My new pair of glasses!
So when I was given the opportunity to try out Axon Optic eyewear, I jumped at it. Axon Optics offers special glasses and sunglasses for light sensitive migraine sufferers. As a part of the review, I was able to pick from 3 different frames. Axon offers their eyewear with prescription and without. As I wear contacts most of the time, I opted for the glasses without prescription. Axon offers a wide variety of frames both modern and classic making it easy to select a pair of glasses that complement the wearer’s face shape.
When the glasses arrived, I was really excited to try them out, especially at work where all of the lighting is fluorescent. The glasses were the exact frame I had ordered and the lenses were a tinted rose color. Hmm, I thought. These will be pretty different from other glasses most people wear.
At first, I was hesitant to wear them while I was teaching. I teach teenagers and well, as we know, they are not forgiving when it comes to fashion. Again, the rose tint makes these glasses stand out. But one morning while at work, I felt a bad headache coming on, and I bit the bullet. I began wearing them about 8 a.m. Pleasantly surprised, I received many compliments on these glasses from both co-workers and students!
I wore my glasses all day that day, and I kid you not when I say that I began to experience relief within a few minutes of putting them on. It was almost like a protective screen immediately came down between my eyes and the lighting. The rose color was soothing. Since being diagnosed with Lyme and chronic migraines, I do have migraine medication that I can take as needed. But since receiving my Axon Optics lenses 2 months ago, I have only had to take the migraine medication twice.
I carry my glasses with me everywhere I go now. When I begin to have even the slightest headache, I pop on my Axon Optics glasses. These glasses are also very versatile; I wear mine both inside and outside in the blaring sun. No need to switch over to sunglasses when I leave work. My Axon Optics do the trick!
If you suffer from migraines or even light sensitivity, I would highly recommend a pair of these glasses. Not only have they helped me reduce the number of headaches and migraines I experience, they have also helped me to cut down on the medication I have to take. In the future, I am going to invest in a pair of Axon Optics prescription glasses so I can have a pair to wear with and without my contacts in.
These glasses do everything the company promises and more. Please take a minute to visit the company website, Axon Optics, or their blog for more information.
P.S. Right now, Axon Optics is offering Free Shipping on all orders through November 15th!
I am sure everybody hits points in their lives when they sit back for a moment and reflect on where they are, what their plans are for the future, how will they get things accomplished, etc. I know I used to do this periodically. Reflection has always been a part of my life. Pre-Lyme disease, I was always positive that the future would always be filled with unending growth and opportunities, both personal and otherwise.
Now? I’m in the midst of trying to treat a real illness, one that has been in my body silently and insidiously taking over. Lyme bacteria – a corkscrew-shaped bacterium called Borrelia burgdorferi – has played the Lyme Long Con with me and hundreds, I mean THOUSANDS, of others. For years and years it has slowly but surely, patiently, illness after illness, entered almost every single system in my body.
But the CDC and IDSA (Infectious Diseases Society of America) panel are also complicit in this LONG CON, the Lyme Lie, the Lyme denial, against all of us. For years, the CDC has claimed that Lyme disease is difficult to contract and easy to treat. Yet, in the past 40+ years, science has confirmed that there are 300+ strains of Borrelia bacteria with Lyme being merely only one of these 100s of strains that are all transmitted by ticks, fleas, and mosquitos worldwide.
This is so ludicris at this point that I honestly don’t understand how the CDC can still be promoting this misinformation. Just a few years ago, the CDC changed its number of newly contracted Lyme infections from 30,000 to 300,000 yearly. Yes, from 30,000 to 300,000!! A YEAR. And many believe that this number is much lower than actual cases each year. 300,000 PER YEAR. Let that sink in. Just to give us some perspective, there are about 50,000 new HIV cases and 200,000 breast cancer cases each year in the US. Yet, almost no money is going into researching Borrelia complex diseases.
I want to scream that BORRELIA INFECTIONs are real. LYME IS REAL. CHRONIC LYME IS REAL. CHRONIC LYME IS HAPPENING TO thousands of PEOPLE, not only in this country but globally as well! As patients, we need to have access to treatment, individualized treatment, treatment that lasts more than a mere 2-4 weeks of antibiotics. You may say, but what the heck does this have to do with your first paragraph. Well, everything, my friends.
Lyme has stopped me, as well as thousands of others, in my path. It has stalled me for awhile, off and on for years, and I unknowingly placed faith in the CDC, the American healthcare system, in my doctors, faith in health insurance companies. I placed my FAITH in these entities sure that they would find out why I was dealing with strange health issues off and on over the span of 3-4 years. They didn’t.
Then, I put faith into the fact that once diagnosed, I would be treated, and I would have a recovery plan. Alas, getting a Lyme diagnosis almost means nothing. The USA has done absolutely nothing to improve research, diagnosis, nor treatment since the disease was discovered (it’s been around for thousands of years) in 1975. Yes, take that in. 1975. We know almost nothing more now than we did then. In the meantime, THOUSANDS of people have gone undiagnosed and untreated. Thousands have been misdiagnosed with MS, Lupus, and ALS, along with other diseases and gone untreated for Borrleia infections. Why??? The treatment for Lyme and other Borrelia infections has not and cannot be easily monetized – YET. So we wait. And 300,000+ and more become infected every single year.
So here I am. Halted. Stopped for much longer than anticipated. Perhaps, stopped here permanently. I know, I know. I need to be positive. I need to buck up. I need to stop focusing on my illness. Most days, I can manage this. But this past month, not so much. Sometimes, we just need to GRIEVE a loss.Sometimes, we need to be ANGRY. Sometimes, we just need to BE.
If you would like more information about Borrelia infections (this includes Lyme bacteria infections) then please watch Under Our Skin. It provides some basic information regarding Lyme disease as well as information about how the CDC and the IDSA are working in tendem, not only to discredit Lyme doctors and patients daily, but on a much larger scale, how these two organizations are undermining the most dangerous health crisis of our time.
Please be careful. LYME IS EVERYWHERE – WORLDWIDE. Take care, my friends – B
** “I have been given this product as part of a product review through theChronic Illness Bloggersnetwork. 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 asholistic 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. TheEquilibrium 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 myEquilibrium 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 usingEquilibrium, 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 becauseI 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.
Heath costs are damaging.
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
**Disclaimer: I share my experiences not to whine nor complain, but to hopefully allow others some insight into the day to day of a Chronic Lyme patient. Keep me in check, my peeps! Please, if I start to take on a “poor, poor me, whiny baby tone,” I beg of you to tell me!! I need help with this because many times, my brain does not function correctly!
My ultimate goal in sharing is not to have pity bestowed. A multitude of other Lyme sufferers and Chronic illness patients are in serious need more than myself. My goal is to pull back the curtain that hides much of the truth about Lyme disease and its co-infections, the curtain that many do not know even exists, (I had so little info when beginning this Lyme gig), and to share and explore this disease while also educating and assisting others as much as I am able. My goal is also to try and process and figure out this crazy journey of life now that chronic Lyme is in the picture. A disease so controversial and misunderstood, it leaves in its wake immense suffering, blatant ignorance and denial, and untimely deaths as it continually grows at unprecedented rates everywhere in our nation as well as across the globe.
In the past two months, I’ve had 6 doctor visits. Please don’t get me wrong; I’m grateful for many things in regards to my health care: I have insurance, both my main doctors take the insurance I have from my work, many labs are covered at 100%, and right now, I can manage to pay for the insurance, for the visits, and for the meds prescribed as well as pay for a majority of uncovered (this word is not right but …Lyme brain) supplements, shots, massages, and such. I’m telling you this because as Lyme patients, finding a knowledgable doctor, an afforable doctor, and a doctor who takes insurance for Lyme treatment is near impossible. Finding one who has these qualities is like winning a trifecta!
Now, none of these visits were your regular yearly appointments for check-ups, physicals, etc. And none of these were other visits were with other needed doctors, such as dentists or optometrists. No, all of these visits were an extension of chronic illness issues.
My usual Lyme doc visits happen every 2-3 months. Oh, hold please. Redo. My visits here with my local Lyme doc happen once every 2-3 months. My visits with my out of town Lyme doc happen once every 4 months. This means that if everything goes as planned (cue laughter now), I will go to 8-10 visits for the year. Honestly, this isn’t too horrible. Except for the fact that because my immune system has basically been hijacked by the Lyme bacteria, and as a teacher I work in a Petri dish, I get sick with other things very easily on top of the Lyme.
You know, the run-of-the mill coldest, flus, bronchitis (bronchitises? LOL). Last year I managed to get a cold and bronchitis in the fall and then in the spring, another cold, maybe a flu (although these symptoms are similar to Lyme symptoms, and then a strange rash that knocked me out of work for a full week.
This summer, the rash that I had late spring came back again at the end of June. It made my left eye swell up and it was also on my left cheek, left jawline and on my chin. And omg, it itched fiercely! This was a few days before the 4th of July. After seeing my doctor here and then a dermatologist, and taking steroids then applying steroid cream to the areas, it finally went away. Both doctors said dermatitis. Thanks for the insight, docs.
Many times, going to the doctor(s) is a bit depressing. Progress moves at a literal snail’s pace, if at that sometimes. And quite often, probably most of the time, we change or tweak the protocol, but we don’t immediately see any results (sometimes, we see no results). But I guess that deterioration of my body also moved very slowly. I really have no idea how long Lyme has been in my system, chipping away at my immune system, neurological system, et.all!
I’ve got another Group Appointment comng up in about 3 weeks and then my doc visit here a few weeks later. I’m keeping my fingers crossed that no other health issues come up between now and then. When I come down with regular illnesses, my body always responds in a weird, awkward and unpredicatable way so everything then is intensified and lasts longer. Like a cold. Most people can move through a cold in 5-7 days. Granted, we all hate having a cold! What misery. But for me a cold can linger on and on and quite possibly become something else, like Bronchitis.
But I do not have a regular GP anymore. I’ve tried a few new doctors out for this position, but inevitably, they know absolutely nothing about Lyme and/or brush it off as no big deal. So it just becomes a waste of time, money, and energy to go anywhere other than to my Lyme doctor. Of course, trying to get in to see the doc on the fly is nearly impossible.
It truly is criminal that more doctors are not trained in the area of Lyme disease, especially since it is the fastest growing infectious disease in our nation. I saw an infectious disease doctor before being diagnosed back in 2013. He was one of the steps to go through to rule out other possibilities other than CFS and FMS. He took no blood. He did NO BLOODWORK. A month later, I tested CDC positive for Lyme disease.
Lyme disease is in many, many cases such as mine, not easily diagnosed, not easily treated and acknowledged. If this trend in medicine continues, more and more of us will be contracting Lyme and not being treated promptly nor properly.
Watch out for thos ticks, my friends, Make sure you are using preventatives and doing tick checks every time you come in from outdoors. I certainly do not want you to become a member of the chronic Lyme club.
Can you tell I’m a little MEGA stressed out about returning to work full-time on Monday? Maybe more than a little? Don’t get me wrong; I do love my job. Teaching definitely is my thingy, and I wouldn’t want to give it up for any reason. Yet, there is a big BUT. There always is, isn’t there?
Since my diagnosis in March 2013, working has been tough. That spring semester, I’m embarrassed to say, is a blur. I was extremely sick most of the fall semester 2012 then diagnosed with Chronic Fatigue Syndrome, Fibromyalgia, and Lyme disease in the spring. Immediately, my doctor put me on antibiotics and treatment began. Unfortunately, I missed many days that semester. My students were amazing as were my colleagues. I had support everywhere I turned. This made it bearable and motivated me to get to work when I could.
The thought, “I love what I do,” sustained me through many, many hours of pain, nausea, headaches, and much more. It helped me through the 2nd year post diagnosis as well. By the end of the 2nd year, I shed some of the responsibilities I had beyond teaching, being department chair, a sponsor for a club on campus. Letting these things go was so, so very difficult. I felt like I was losing parts of myself that I might never regain. I almost felt at times that I was giving into the illnesses by cutting back on things I just couldn’t do anymore. For awhile, I felt “less than.” It messed with me psychologically and sometimes, it still does. However, it was for the greater good.
Yes, I am glad that I passed the torch to others who can and will do an exceedingly good job. So this 3rd year of post diagnosis found me (and finds me this fall) in a less demanding position with more time to accomplish much needed tasks at work rather than bringing everything home. Strangely though, this past year (school year 2015-2016) almost seemed the hardest one of the past 2.5 years. I’m still trying to figure out the Why it feels like it was such a challenge. Granted, some symptoms have improved. This past year, I didn’t miss as many days and at least 3 of those days were doctor appointments. So, what is the problem? Why am I so dang worried about this new year starting up??
My room awaits….
The main thing I am most worried about is the ability to continue my work. I am down to a very limited amount of paid sick days now; I do not have long term disabilty (although added this August, the wait time is 12 months for any claim). Some money is saved for emergencies but not enough (I never think it is enough!). I hear you, my friend, you’re telling me to take one day at a time, and I agree 110%. I so completely agree. And yet.
While I say that my main concern is whether I will be able to continue to work, yes, while that is the big picture, more disconcerting is worrying about how I will feel each day. Last spring was really hard. I wouldn’t have made it through without my BFF/teaching buddy, for reals. She was/is my angel, and I never worried about when I might be out because we shared everything. But my angel has retired. I am freakishly happy for her, but I’m not sure how I will make it without my little buddy cheering me on every day.
In January 2016, I had a cold that turned into bronchitis. Then, I went through a severe fatigue cycle, which lasted several months. And to top it off, I missed a week of school in May due to a terrible rash I developed on the left side of my face, my left hand, and right arm. In between all of this, I saw my regular doctor here in town 4 times, a rheumatoligist 2 times, and my out of town doctor once. Oh, right, and I was trying (key word is “trying”) to teach, 5 classes, every day. It got so bad that I would go to work, barely make it through the day (God forbid there was anything scheduled for after school), come home, feed the puppies, throw in some laundry, and then go to bed. Sometimes, the thought of sorting the mail or taking a shower made me cry. No joke.
Most of April and May were this way. Weekends? No, I could not do anything on the weekends. If I wasn’t trying to catch up on grading, then I was mostly in bed resting or dealing with a migraine and nausea. Both total killers and kill joys. The only function I attended in the spring of this year was a dinner with friends and a graduation party. I missed out on many events, a baptism, birthday celebrations, a theater show, baby showers. My life literally passed me by. And I am afraid of going back to that level of non-functioning.
Just a little TLC needed to make this feel like Home…
Well, there it is, boiled right down to the syrup: FEAR. Fear of ending up at that place where all I can kind of manage to do is work. I felt so disconnected from myself and from others when I reached that bottom line, you know, the one below the E? I know that sometimes, we have to go through the motions so to speak but doing that every single day for months? It’s a dream killer, my people.
A.Big.Fat.Dream.Killer. Just barely surviving hour to hour takes the fun out of any and everything. It takes the joy rogh out of talking and bonding with students, chatting with colleagues, planning lessons, etc. I don’t want to go back to that type of physical and emotional state. Did I make it last year? I did. But I honestly didn’t realize how much it took out of me and how much of life I missed every day because I was again, just on the edge of survival.
Maybe you are in a similar situation? Or maybe you need to do a reboot on how to juggle your chronic illness and work? I HEAR YOU! I have to get my head right before Monday.
Here’s my plan of attack, and maybe these can help you too. We (yes, plural pronoun!) NEED TO:
Pace ourselves – uhm, yeah, THIS! And it is #1 for a reason.
Stay on our special diets! For me this is – No sugar, no gluten, no processed carbs, no soda, AND mucho water! When I am feeling tired and stressed, I have a strong voice telling me to eat sugar or drink caffeine. Just say NO.
Try out 2-3 yoga poses at lunch or during a break every day. Just taking a few minutes to stretch can feel rejuvenating.
Shoot for a 5 minute meditation session every day. I mean worst case, I will do my best to squeeze in 3 minutes. Yes, it sounds goofy and yes, it will be a real challenge for me but I keep hearing great things about doing this. I’m going to use the Insight Timer app for Android. It’s free and has some great sessions to choose from.
Try and do something fun/social once a month. This one will be extra HARD!! It’s not that I don’t want to do things; I am sure you are the same, but like me, I am sure you also experience so many times where you are sick and so fatigued to the point you just can’t do anything but rest and/or sleep. Let’s try to do this one and without feeling guilty if we just can’t sometimes.
**Good point. We will revisit these in a month’s time to see how “WE” are doing!!**
What else can I/we incorporate in the day to day to relieve tension and frustration? Any suggestions or wisdom you can share with me?? Any self care I/we can use to keep it together (like everything together)? Really, I appreciate any feedback, suggestions, advice!
On that note, I take leave of you for now. Have a great evening. Here at our Casa, we are going to watch some of The Good Wife and chill in the A/C! Blessings to one and all – B
Views here are mine and mine alone. Education, written words, social justice, and food are my passions in life, all essential forms of nourishment. ~Robin
