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.
*I wrote this back in July 2015. But all is still relevant, if not more so. When there are over 300,000+ new cases of Lyme a year across our nation, why aren’t the CDC and IDSA doing so much more for the population at large? And why aren’t these organizations being held more accountable for their actions or lack of actions. #LYMELIESCOSTLIVES
Hi out there! Today I listened to the Diane Rehm show and if you caught it as well, it was a program about Lyme disease. Honestly, it didn’t shed any light on the disease for me personally and yet again, some of the guests continued to perpetuate some of the Lyme disease myths floating around. Now granted, I am not a scientist, I am not a researcher, and I am not a doctor. But I am one of the many suffering from this disease so I have read as much information as I can get my hands on about Lyme and I will continue to do so. At this point in my game of Lyme, I feel like I know enough to make fairly decent decisions regarding my own care.
Listening to the program and reading comments on Rehm’s FB page really struck a chord with me in that there are so many people out there suffering from the elusive Lyme bacteria, Borrelia burgdorferi (B. burgdorferi). And so many of us are not even close to getting the help we need. The medical community is at odds as to what to call the condition where patients suffer symptoms of Lyme after treatment; it is also at odds with whether the bacteria is actually present after treatment or not. On the show, Dr. John Aucott from Johns Hopkins Bayview Medical Center basically agree that yes, in rare cases, patients still suffer from symptoms after treatment but he would not call it Chronic Lyme. He sidestepped this so many times…well anyway. Instead, he made it clear that if, and only rarely, patients have lingering issues, it is due to an immune response but not due to persistent bacterial infection. He stated this as a fact when in reality, this has not been proven as not true in a human subject.
But how do we even know or how can we even begin to dismiss the idea that this bacteria, one of the most, if not the most, complex and intelligent bacteria we know of, cannot persist? Just because we do not have the means or the way to find out should not lead then to dismissal. I think back to things in the past that were dismissed and then later, after the technology and testing and imaging came to pass, after the WAY to see something became clear, we changed our minds because we actually had the TOOLS to figure it out? Now I am not necessarily trying to make direct analogies here but think about this: women used to be treated as mentally ill if they suffered certain symptoms after delivering a child. Ever read “The Yellow Wallpaper” by Charlotte Perkins Gillman? But then as years went on and doctors focused and researched, this “condition” turned out to be a physical one and not merely a “mental” condition we now call postpartum depression. The same comparison be said about depression in general. We didn’t know what it was, we know now, we know it can be hereditary….and on and on.
I just cannot then figure out why the medical community, in this country for sure, is so fixated on sticking to standards set by IDSA, the Infectious Disease Society of America, in 2006. Like many of us, I wonder why more money has not been put into finding out so much more about a disease that is now affecting 300,000 plus here in the states? I just cannot wrap my head around it!
I know I live in a bubble, don’t get me wrong. I have yet to have anyone in my life doubt that I am still suffering from something, no matter what the terminology. Not everyone has that kind of support system. Why don’t more medical and science professionals care about Lyme? Or why are they staying away from researching Lyme? Let’s just say that the radio show today did not answer any questions for me. In fact, it only made me think about more questions I have about Lyme disease! On that note, dearies, I must take leave of you.
**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.
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