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.” **
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!
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!
Lately, I have been feeling like I haven’t been hitting the mark. What is the mark, you ask? Just feeling like everything is balanced. Right now, I don’t feel balanced in my work nor in my personal life. The scale has been unavoidably tipped, and all of my time seems spent on How I Feel. I am diligently working towards getting this scale balanced again, but now, throwing work back into the mix, it feels like an impossible mark to hit. While my job is rewarding in so many ways, it also drains every ounce of physical and mental energy I can muster each day. By the time I make it home, I feel wasted and withered, no matter how easy or how difficult the day has been. I can’t seem to change these dynamics, which is so frustrating!
After years of fatigue and physical pain, I still haven’t figured out how to squirrel away any energy for myself and my personal life while I am working. I wish I had like a bank where I could deposit blocks of energy, then withdraw as needed! How awesome would that be! When I feel this way, Guilt stealthily creeps in, the guilt involved with not feeling like a productive partner in my marriage, like an active participant in social events with friends, like an emotional engaged human. I know guilt is self-imposed and controllable, but it is my go to feeling when I am worn out and stressed. No bueno. Trying to play psychological games with myself, every time I feel “guilt”, I am working to replace it with feeling “Grateful” instead. Am I hitting the mark? Who knows.
Yesterday, I started feeling Guilty for not immediately reading a student’s novel she wanted to share with me. I asked her to email it to me for future reading. Realizing the Guilt was moving in quickly, I endeavored on removing the Guilt and replacing it with the Gratitude that this person is willing to share a piece of herself with me. I will read the novel, and I will give feedback. I just couldn’t manage it during my lunch break yesterday. It’s all good.
Do you feel Guilt? Do you feel like you are hitting the Mark?
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 strategically 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.
Hi out there! I wrestled with writing two paragraphs about how work is going and then, bam, they were gone. Since I cant muster anymore energy, it will have to wait. Maybe the disappearing text is reflective of my segue back into work? LOL
More to come on how work is going. Right now my Lyme brain cannot do anymore, so I bid you all a goodnight. Peace, my peeps – B
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??
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.
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
“Bus is coming, it’s time to leave
the summer’s gone, and so are we…”
“Let’s go shut it down in New Orleans…”
“Miami” – Counting Crows
It’s hard to say goodbye to the extensive time off I’ve had these past 2 months. When I first started teaching, I worked every summer, as well as an extra job on weekends or in the evenings to catch up and pay the bills leftover from divorce. Summers and evenings during the school year were spent slinging coffee, teaching, or both. But for the past few years, and especially now that I’m dealing with Lyme, summers are truly “time off.”
Since we are heading back sooner than soon to teach the young minds of America, my brain is shifting into overdrive. I’m thinking about overhauling one of the courses I teach. Without boring you too much with the details, the overarching theme is the American Dream. It’s a great theme. BUT, I’m seriously wanting to spice it up a bit. We’ll see.
Anyway, I would like to be able to share some of my ideas and get some feedback from you periodically. So, I am creating a new category for these posts. What might these posts entail?
1. Cool stuff related to the content that may come in handy for me later on ( and Lyme is sincerely stunting my short term memory right now)…
2. Ideas for teaching visual rhetoric and argument. I need to
do way more of this with my students.
3. Just writings, songs, authors, art, whatever related to the content I teach, and things I like and love. Like Henry David Thoreau. Or Ralph Waldo Emerson. Or….
4. Lessons I find that are awesome and that I can modify – maybe – to use in my classes (with permission of creators, of course).
5. Ideas for integrating yoga poses. This one is a stretch (and yes, pun intended!) But, I’ve read some research that using yoga with students can be a positive! More info needed along with a lot of consideration for logistics, student participation, etc. This may not be something I can really do this year.
I just wanted to give you a head’s up that I will be doing these posts randomly so you aren’t like, Say What? Yes, I will continue to blog mostly about my journey with Lyme.
With this American Dream stuff though, I will need some help. So get your brains in gear, too!
Hoping your evening is going well. Here’s some Counting Crows for your segue into sleepy time. Peace -b
What brought all of this on, this visit to Meltdown City? Although I didn’t share it with you (yet), about a month ago, while I was still in school (working) I had a terrible Rash (in fact, it does deserve a capital “R”) on the left side of my face, on my left had, a few spots on both of my lower arms, and inside of my thighs. It came on suddenly. It took a over week, a trip to Urgent Care, 2 trips to my LLMD and a week out of work, along with several medications, to get rid of it. The reason I haven’t posted about this incident is – don’t laugh – is that it was pretty traumatic overall. I promise to tell the drama soon. Anyway, it finally went away, but there was no consensus as to what was the cause (except it was not parasitic).
It went away, school came to a close, my step-daughter graduated (happy dance!), summer started, on and on. Early in June, my doctor put me on this cool supplement called ATP Fuel for my low energy, and I have really been seeing some brain improvement function from it which was a real lift-me-up these past few weeks. Now, I am not saying I am “cured.” Not by any means, but I am certainly feeling like I had managed to get over a significant hump since severe fatigue has been one of my most loyal companions over these past few years!
Let’s just get downright crazy and say that mentally, I’ve had the best 2-3 weeks that I have had since before being diagnosed with Lyme in March 2013. It has sincerely been that big of a deal at, least to me. This past Wednesday, I had an itch near my left eye. Bug bite. That then spread all around my left eye, down along my jawline, and under my chin.Pretty much the same area that the Rash showed up a month ago. It was basically a battle to get into my LLMD. I do not have dermatologist, but I did call around, and I was able to get an appointment for Tuesday. However, knowing how horrible this Rash became last time (the top of my left-hand is scarred now), I saw my LLMD yesterday afternoon. To say this appointment sucked is an understatement. She put me on several medications, anti-viral, steroids, anti-itch pills, and said I must be getting into something and that it will clear up.
I asked, what if is doesn’t clear up? Answer, go to a dermatologist. When I asked if I should come back in for her to check me as well, she said no.It will clear up by Monday. Huh? I asked how will we know what is causing the Rash, and what if it comes back (you know, since this is 2 time in 4 weeks), and she basically said it may never come back. Well, yes. That is one way of looking at it. And while that in fact is true….I HAVE LYME DISEASE! It has taken over my immune system, MY BODY! I’ve had weird rashes in the past, I get cold sores a lot, I have chronic EBV. SO LIKE FOR REALS, LADY. Saying that it might never return is like laughing a the Gods. I don’t like this plan.
My left eye was almost swollen shut this morning, and the rash had spread to the other side of my nose and there was more on my left cheek. My mom picked up my meds for me, and I got started right away. Everything just closed in on me today. Not from this damn stupid rash, really. I’m just tired. I swing from one health crisis to another with barely any time in between to just feel like I have JUST Lyme. I’m not even in school right now, surrounded by close to 4, 000 people a day. Yet, I have a recurring Rash that my LLMD doesn’t really think is an issue. So yeah, the Meltdown City. In the shower. Me, myself, and I.
I think at the crux of all of this is the truth I am beginning to realize, or maybe now I am closer to accepting, is that the LLMD that has helped me thus far, is not going to be the doctor to take me into remission. Not from where I am right now, and not with how I am being treated (protocol). There are no other LLMDs here in the HOUSTON area. Seriously. It is too risky for doctors to advertise that they treat Lyme disease and many don’t. They do not have the first clue about Lyme disease. Truth. So, I continue to periodically request an LLMD list from the Texas Lyme Disease Association hoping that maybe a new name has been listed. And that the doctor listed takes insurance. Most do not.
This causes a whole other wave of worry to hit. Going to a doctor who does not take insurance means lots of money out of pocket. Depending on the doctor, it could run $700-$1500 per visit, not including meds, supplements, etc. LLMD doctors usually do not take insurance because they do not want to be beholden nor required to treat Lyme only by the approved and antiquated guidelines of the USA set by the Infectious Disease Society of America (IDSA). Many doctors across the US have been stripped of their license to practice for not following these corrupt guidelines. Of course though, insurance companies use these IDSA guidelines as standards for care and so even if one is LUCKY enough to find an LLMD who takes insurance, some things are not covered at all because the treatment doesn’t fall within the -again- corrupted and antiquated guidelines.
But I have an LLMD that takes insurance and here close enough to where I live. I thought I was so lucky! And yes, she saved my life. I need more now though. My visits with her consist of about 10 minutes time. I list out everything, she focuses on the most detrimental at the time, reviews my blood work from the last visit, usually 3 months ago, and based on that she tells me where we are going, and sends me for blood work – labs we will review 3 months from now. WTH. There is no talking about nor treating any lingering symptoms, talking about detox, diet, anything really at all else about this complex stuff happening to me. Co-infections being addressed? Not at all.
Finding someone new that I have to pay out of pocket, that is probably 3-5 hours away, is just freaking me out a bit. On top of all of that, I am worried about how much more I can work. I’ve pushed through and I want to work, but this past year has been extremely tough. I’ve been sick with other things more than not, and I am wondering, maybe I need to give my immune system more time to heal before I mix it up in the petri dish of high school. And since my LLMD only spends 10 minutes with me, I try to bring this up, but again, she also works crisis to crisis and that is just not cutting it anymore. Then, if I can’t work, how do I go see a doctor who doesn’t take insurance? How does all of this get managed when my eye is almost swollen shut, and I want to itch off the left side of my face?
Oiy. I just do not know. I’m trying to wrap my head around everything right now. I may have to visit Meltdown City a few more times before I get it all figured out.
I hope you and yours have a safe and wonderful 4th. Namaste, my peoples. – Belle
P.S. Maybe read some Declaration of Independence, eat a burger, drink a brew and maybe read a little taste of where I was last 4th of July– Fire in the Hole
The Deafening Silence Returns: Lyme and AIDS.
Do you have any other examples of how AIDS and Lyme disease are similar as epidemics? Or different?
Since I have some time to do more research right now and the motivation to do so, I have been digging into the aspects of the Lyme controversy in our country (USA). I have been seeing many posts and articles recently that in some way or another compare Lyme disease and its prevalence to that of several aspects of AIDS epidemic here in the USA. As a young 10-20 year old growing up throughout these crisis years, the epidemic was not only the insanely tragic, it was a completely mishandled disease from the start, and ignored way too long by the science and medical fields, think CDC, think Infectious Disease Society of America, think NIH, and on and on, thus costing thousands upon thousands of lives. I just wasn’t so sure that comparing these 2 epidemics would work logically.
But what are some reasons I thought this analogy wouldn’t work? Well, Lyme doesn’t necessarily work as quickly in killing the body as AIDS has and still does (although now we have many ways to treat this infection so there are less deaths, thank goodness). Lyme is a different animal in that respect. The dead bodies of Lyme victims are not necessarily piling up on anyone’s doorstep. We don’t see Lyme disease in the news every day like we did with AIDS. Also, I felt that somehow by comparing the two infectious diseases that I was somehow trying to diminish the horrendous impact that AIDS made on people and their families, and especially on the gay community. I have no idea why I felt this way. I just did. Actually researching though has led me to a new conclusion.
In fact, Yes, the Lyme epidemic is in many ways VERY similar to the AIDS epidemic.
Let’s roll it back a few years, I mean DECADES.
“Besides Acquired Immunodeficiency Syndrome (AIDS), Lyme disease is now the most important “new” disease facing us today.”
Let that just simmer for a moment. “Most important.”
The above quote is taken from an unclassified scientific report conducted by our military. The report is titled, TICKS AND TICKBORNE DISEASES AFFECTING MILITARY PERSONNEL. Written in September 1989, this report is ” Approved for public release; distribution is unlimited. Conducted by Jerome Goddard, Ph.D. Medical Entomology Section, Epidemiology Division, USAF School of Aerospace Medicine, Human Systems Division (AFSC) Brooks Air Force Base, Texas 78235-5301.
Again, this extensive report was written in 1989 after extensive research. By our military. Here we are, almost 30 years later, and let me impress upon you, dear reader, there has been MINUSCULE, almost NIL, progress in researching and understanding of this disease, accurate testing and diagnosis of this disease, and in the treatment of this disease.
In 2013, the CDC reported findings from 2 separate entities that there are approximately 300,000 + new cases of Lyme disease every year. Please find those reports here: http://www.cdc.gov/lyme/stats/humancases.html. The CDC states that it receives about 30,000 cases of Lyme a year (this number is very low as these are only cases reported that meet the almost impossible requirements to identify Lyme set by IDSA.) The other reports the CDC lists on its page are both positive tested Lyme cases and clinical diagnosed Lyme cases, thus the 300,000+.
As Lyme sufferers, like our fellow AIDS victims, we are:
And yet. Here it is 2016. Absolutely nothing has changed. Just like AIDS sufferers, Lyme patients are shunned by doctors who have no experience with Lyme at all, or who rely strictly on the CDC testing criteria and the IDSA treatment guidelines. Even after all of these years, IDSA has yet change any of its treatment guidelines since 2006 when it published its dictated, repressive, and self-serving protocols. We are not treated well nor correctly by the medical field. I myself have been to several doctors who did not believe me nor my symptoms and just blew me off. We are labeled as hypochondriacs and/or attention seekers by both the medical community and our families and friends. Not being believed about a sickness that is so REAL is devastating both physically and emotionally.
Similar to AIDS patients in the early 80s and into the 90s, Lyme victims are not receiving the needed treatment to assist them in healing. Since there is so little being invested in Lyme research and understanding, patients must go to extreme lengths to find a doctor who will take them on and treat them as needed according to many skeletal, neuro, cardiac, and on and on manifestations of this disease. Lyme Literate doctors or LLMDs, do not take health insurance because of the possible legal implications. There have been many doctors brought before state medical boards and stripped of their medical licenses because the doctor had not followed the strict IDSA treatment. So our treatment, if we can even be diagnosed correctly, is extremely limited. Many of us seek our doctors in other states and in other countries.
Like many of those ill with AIDS, we are denied at every turn while trying to get diagnosed and treated promptly (this can happen via better testing and meticulous review and understanding of clinical symptoms). We are told that our symptoms are psychosomatic, all in our head, and we are brushed off or completely misdiagnosed with an autoimmune disease of which Lyme can and is in many, many cases, the root cause, such as Lupus, Rheumatoid Arthritis, MS, ALS, Fibromyalgia, or Chronic Fatigue just to name a few. We are denied coverage by health insurances due the published treatment guidelines from IDSA a DECADE ago. We are denied the opportunity to keep our jobs, our families, and our dignity.
4. (we are) DYING.
But, people might say, well, we never really hear of anyone dying due to Lyme disease whereas throughout the 80s there were reports every single day about AIDS causalities. This is true. First and foremost, I will say again, all aspects of Lyme are being silenced on every front, from politicians to medical practitioners, from health insurers to the media outlets. But the biggest reason we do not hear about Death by Lyme is because an exorbitant amount of Lyme disease sufferers take their own lives. We take our desperate matters into our own hands. Suicide among Lyme victims is in itself an epidemic. Much of what we know about this is anecdotal, again, due to lack of funding and research. For more information, this is a great start“Lyme Disease and Suicide, an Ignored Problem.”
These are just a few things that Lyme disease and its victims has in common with AIDS and its victims. And to refer back to the quote at the beginning, we’ve known for over 30 years that Lyme disease is an EPIDEMIC.
Is Lyme an epidemic? Yes, it is and we’ve known this for over 30 years! Unfortunately, it is a silent one that leaves us rotting from the inside out, slowly but surely. Hopefully, like the AIDS community, the Lyme community can continue becoming a formidable movement, one that will hopefully save lives now and in the future!
Do you have any other examples of how these 2 diseases are similar? Or different? Could or should we possibly as a community learn from the AIDS epidemic and how it was forged into a massive movement? Just having all kinds of thoughts on this topic. Please leave a comment below. Thanks for reading. Peace – Belle
I was really hoping these last few weeks of school would go very smoothly. I’d made it this far, limping metaphorically, but since spring break, I wasn’t doing too horribly. My protocol since March this year has been herbals only, and so the hope is that my body in conjunction with the herbals can combat the Lyme and send it packing. Yes. I completely understand that after taking a multitude of antibiotics for over 30 months including IV abx is hard on the system. Yes. I understand that my gut flora is messed up. Yes. I know it will take awhile to get my system back on track. Yes, yes, yes. Got it.
Knowing now what I know about Lyme disease and the various ways to treat it, would I go back and do the same thing? Most likely. When I was first and finally diagnosed with Lyme disease, I was severely ill. Not only had I had Lyme for who knows how long active in my system, I also had a viral overload. Several viruses that we normally have once and then build an immunity to had reactivated in my system thanks to the bacterial infection. So, yes. I think treating with antibiotics was the best choice starting out. It took almost 9 months to truly see any difference in what I was experiencing. I didn’t herx either for about the first 9 months. I was one sick puppy.
Very rarely do I forget that I am still dealing with Lyme. It won’t let me forget. If it isn’t one thing, like severe fatigue, then it is another, like nausea and migraines. The symptoms seem to come and go with no rhyme or reason although the headaches seem to stay my constant companion. When my LLMD first started treating me in 2013, she said that “we want to progressively get to a point where you have more good days than bad.” Sounded like a great plan to me. And sometimes, that is the case for a few weeks at a time.
Recently though, I have had a string of pretty rough days in a row. As soon as I can, I will post about what is going on. Right now, I am just trying to put my nose to the grindstone and get through it. Consequences of this situation right now are that I cannot work, so I have been out this week. Of course, I am grateful that I have so much support at my work and people who understand, but I feel bad that my students miss out. But if it had to happen, this really is the better time of year since we are getting close to finals and summer break. It’s been an emotional rollercoaster for a couple of weeks, and I am really ready to get better and get back to work.
So for those of you with Lyme disease out there or a chronic illness, do you also experience a fluctuation in symptoms? Are they triggered by anything that you can pinpoint?