When the moon goes black…
*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.
**The two awesome posters above are from a wonderful website and patient advocavy.Please visit http://www.lymestats.org
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.
Until we meet again, peace -B
Back to school time!
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
Hello to all. Summertime is here, and Janis Joplin’s rendition of “Summertime” is playing in my head. The “livin’ is easy,” no? Alas, not so much. It’s been a challenging first 2 weeks of this break to say the least. Summer began last week, (and I am a teacher 🙂 ) and I had a few days that I sincerely enjoyed. I worked one day, but then by the next day, I had so much back pain I could not get out of bed without help. The pain was on my right side and severe. Not just like a pulled muscle but achy and sharp all at the same time. So, I rested. Logically, I figured my body was just finally relaxing. I just needed to rest. Yes, right, rest would help. Also, I was able to get an appointment the next day with my LLMD just in case.
But, the pain did not improve. By Friday, the pain was almost unbearable. But no fever. My husband had to drive me to my doctor appointment. I broke down in tears several times because of the pain; it was ridiculous. You may be asking, Why didn’t she go to the ER? Well, we know with any chronic illness one doesn’t get far at the ER.
After a urine analysis and some more tears, it was determined that there were no kidney stones and no kidney infection. Whew. But I did have a possible UTI. Doc prescribed different antibiotics from the ones I already take for treating Lyme and some mega pain meds. Thank God. She told me that we would treat for 3-5 days, and then I should be good to go or at least back to Lyme Normal.
But, here I am, a week later and still having lower back pain. Not as crazy or severe as last week, but boy howdy, it’s still there. Next up then is a lower back MRI with and without contrast. This isn’t scheduled for another week. Before my diagnosis with Lyme Disease, actually 2 full years before being diagnosed, I had a spinal and brain MRI. I was having hip pain on the right side and numbness in both feet (both decent symptoms pointing to possible Lyme disease). That MRI was inconclusive for MS so the neurologist sent me on my way. If only one of the 4 doctors I saw that summer had tested me for Lyme I could have started treatment 2 years earlier and 2 years less sick. I’m not trying to be whiney, it just makes me angry sometimes.
I spent yesterday and much of today in bed. I’m struggling to be productive, to be of value but I spent and will spend most of my time online here or FB. I need distracting, and I don’t have the concentration skills for reading of any length right now. Struggling to stay positive and pain free are the real challenges at this moment.
Am I worried about the MRI? Not really, and why waste time worrying? I am hoping of course that it gives us some insight into what is going on in my lower back. I’m sure that whatever it is that it is Lyme related somehow, and I am very grateful that I now have a doctor who can and will help me and that it isn’t a waste of time and a lot of money like the last one I had in 2011. Last time I definitely got conned in that I had no idea that the Imaging office was out of network even though my neurologist had sent me specifically to that place next to the hospital where he was located! Oy. Insurance companies, but that is for another post.
I’m trying my best not to be depressed. But thoughts and lists are piling up in my brain: I’m not doing anything productive or fun. This is my summertime and the days are precious. I had to cancel a few appointments because of the pain issues. My husband has been working non-stop, and I haven’t seen him much. I haven’t been away from the house for a week, whine, whine, whine.
Anyway, thanks for listening and thank you all so much for reading. I do hope you and yours are having a good time and that you are able to enjoy the good stuff coming at you.
Gracias – B
Peace and joy to you all – B
**WARNING – THIS POST IS DEPRESSING. PLEASE DO NOT READ IF YOU ALREADY FEEL DOWN.
These past 2-3 weeks have not been good for me. I am struggling in every single area of my life: work, personal, mentally, physically. I have not been optimistic in awhile. Between attempting to cope with my cognitive issues, which have become many of late, along with the physical challenges of nausea and body pain, my personal relationships are indeed failing. I can see it happening, but I don’t know what to do to make it stop. Any of it.
I do my best at work. I know my attitude is not always optimal, but I am really trying my hardest. Communication is difficult even on a “good” day. And communication, well that’s kinda “my thing.” It’s something I take great pride in and something I have been good at my entire life. But not now. Although an overused analogy, my brain feels like swiss cheese. I can’t remember regular words such as pliers, consistency or ambiguity when I need these words. My short term memory is almost nil at times. I keep asking co-workers and my husband the same things over and over. I feel like I am slowly going insane. Not being able to remember, not being able to recall basic words while speaking, spelling words incorrectly all of the time is so very frustrating and aggravating. This proceeds to heightening my anxiety and my anger. I imagine that to some degree, this is what is is like to have the onset of Alzheimer’s.
And so, my negative persona and my overall hostility rises. I avoid conversations like the plague. I don’t want to talk because, to myself, I seem to make no sense at all. I imagine that others feel the same when I speak. I am alone. I feel so singularly alone in this.
There is no quick fix, and I get it. I have been very patient and open to any and all treatment over these past two years; I have diligently taken my meds. I do my best to keep my diet in check, I try to stay upbeat and optimistic. I am still working full-time. Yet, I still lose.
I still have the dreaded headaches every day. Joint pain. Every single day. I have made some progress with endurance but I still exhaust quickly. While, I think when in the midst of a migraine and nausea, “this is the worst!” really, the slow decay or what seems like decay of my memory and cognition is ultimately the issues that worry me the most.
For if I can’t use words correctly, beautifully, exacting, then who am I? Always one to rely on my wits and sarcasm, without these, I can’t and won’t ever find my way home, back to who I am. I know, I know. One day at a time. Like the Indigo Girls sing, “We’re sculpted from youth, the chipping away makes me weary.”
Right now, I am weary.
Peace. – B
Howdy! Hope we are all having some relief! Lately, I have developed a sincere noise sensitivity. At first I thought , oh, I can’t really hear well (although I have never had any issues with my hearing). Then, it was, oh, I am just getting old (although I really am barely middle age). And then, I finally realized that I am having some certain noise sensitivities! This is a newer symptom, and it seems to get worse as I progress in my treatment. I have read about people having both noise and light sensitivities with Lyme, but I have always been very sensitive to light and only just recently am I noticing the noise issues.
Hmm. No bueno! I don’t seem to struggle much when it is a one on one conversation but if the pitch is too high or low, watch out! My poor husband. We get up early for work, about 5:15 a.m. and there are some mornings like today, that I keep telling him to please lower his voice a tad to the point where I can’t even hear him. Then he is like WTH?!?! It’s a weird feeling when this happens. It is almost like the sound travels in my ears directly to my brain and zaps it. My thoughts start jumbling up and my head starts to hurt. Does anyone else have this experience?
Of course, it is waaaaay worse in a crowd, and by crowd, I mean like more than 4 people. Haha! No, really. In a crowd, there are just so many different noises and pitches and inflections. I try to focus on one, but I just can’t. When this happens, I get really frustrated. Some places/situations I have issues: when one person is talking to me at the speed of lightening, talking on the phone, parties, classes, stores. You name it. Pretty much anywhere there is a cacophony. It for sure makes it even more difficult to socialize…..What is “that”, you ask? 🙂
It’s been happening more and more lately so I am going to discuss it with my doctor on the 22nd. However, I am guessing there is nothing that can be done? I mean besides becoming a hermit which I have down except for this silly working thing. I am making light of all of this but it can be really irritating and depressing. Anyone else dealing with this phenomenon and if so, how do you do it without becoming the Grinch, like me?
So I’ve been quite weepy this weekend. I’m not going to say I never cry, but for the most part, this is a rare occurrence. Basically, I cried some on the way home from work on Friday, cried myself to sleep last night and then, after my husband left for work this morning, I had a mini cry session. What the heck is going on?!?!
I would blame it on my cycle, but luckily, it isn’t that time. I would blame it on what someone said, but besides my husband, I haven’t been around anyone else. Nothing happened at work to spark this; in fact, Friday was a good day teaching-wise. No event, no conversation, no outside force has caused this. Maybe it s hormones affected by the Lyme? Maybe a release of anxiety?
I don’t know, but whatever it is, it is making me feel very depressed. I can only seem to focus on the negative. I’m questioning my treatment, my sanity, my work and my relationships. Right now, I feel like the world is closing in on me. I am worried, exhausted, and stressed. Things like this are running through my head right now: Should I change my treatment? Should I try to cut down at work, somehow, someway? And if I can do this, will it make any difference at all? Or will I go another 2 years, seeing some improvement, but “not quite enough”? Can I even make it another year like this? At half capacity? Dragging myself through each day? Losing the joy for life chip by chip? As per the Indigo Girls, been feeling like these lines, ” We’re sculpted from birth/ the chipping away make me weary,/ and as for the truth/ seems like we just pick a theory.”
Struggling to stay positive, I think to myself, “so many other people out there have it worse that you!” I know this in my heart, but right now, I am being self-centered and feeling sorry for myself. I’m in a dark and lonely place right now, and I just have to own it. Embrace the feelings and move on. For today, I am in a full embrace and it’s hard to let go.
What a week!! I thought there about Tuesday and Wednesday that I wouldn’t make it, but guess what? I did! I wonder at what costs though. I say this because I have been struggling all weekend with symptoms. Most aggravating is the all over soreness and pain. Then, there are the IBS issues. And then the indigestion issues. All of this hit me on Friday at school, and it hasn’t let up. NO MERCY!
Without TMI, I just feel all over terrible. If I can get one issue to subside, another flares up. I have tried epsom salt baths, resting, pain pills, alka selzer gold, heating pads, gingerale, tea…..nothing, nada. I am pretty sure this is what is mean by herxing! I have tried taking my mind off the total uncomfortableness of being me by reading, Facebook, grading essays, playing Candy Crush, watching Netflix. Alas, I just can’t get out of myself enough to feel better.
I missed an event last night, a family event, and so that was tough. Then, today, my husband is working on his new shop area and of course, I am in no shape to help. Instead, my 60+ year old in laws are slaving out there. I feel so useless. It all hit me this morning in the shower, which was a chore in and of itself, and I just gave in and started crying. I do have meltdowns like this every so often but it’s been awhile. I do not like it when this happens because I feel so helpless. I feel like I have lost some pieces of me that I may never get back. I feel like I am at the edge of a cliff, teetering, looking into a vastness, a place where nothing changes and I just continue to struggle every day.
I know deep down that this is just a culmination of being exhausted, stressed, and depressed. I guess being aware of all of these things helps? My husband says that it is a good thing to have a meltdown every now and then, to grieve about this illness. And, for the most part, I do feel better after my little meltdowns. How do you deal with all of the stress and symptoms of Lyme disease? Any tricks you can share with us? I think I need some Kid President today.
Off to a nap. Peace – B