Doc Talk – v.1

Doctor pow-wows – Making progress?

**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.

Do you know someone with Lyme disease yet? You will and soon.
Check out: http://danielcameronmd.com/understand-lyme-disease/

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. 

Happy Sunday. Namaste. -B

5 Proactive Ways (maybe) to Balance Work and Lyme

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??

Trying to find a balance
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:

  1. Pace ourselves – uhm, yeah, THIS! And it is #1 for a reason. 

  2. 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.

  3. Try out 2-3 yoga poses at lunch or during a break every day. Just taking a few minutes to stretch can feel rejuvenating.

  4. 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.

  5. 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

The Dog Days of Summer -Meet LuAnn

Time to meet The Hound

Well not yet, really. But, since I have been off of work, I have been spending a lot of time with my dogs. And they are awesome-sauce. I hesitate to tell you how many we have. First, understand that all but one is a stray that either showed up at our house or that we picked up on the side of the road. Also, each one was checked for a microchip. Several of them we tried to get homes for but most people only want a puppy and not an older dog. It’s tough out there people!

And for all of the complaining and yawing my husband does about the dogs, he is worse than I am about picking up animals! Mostly, he comes home with birds, a crow, a screech owl, a Rosetta Spoonbill, etc. The owl was just stunned and flew off into the night. The other ones we have taken to the Texas Wildlife Rehabilitation Center here in Houston. It is a great organization. But it isn’t for dogs nor cats.

Have we tried shelters? Of course, but most will not take a dog if you call up and ask them to. I guess you have to drive up and drop the dog at the door? I mean we’ve tried them all at some point, SPCA, CAP, Humane Society. Anyhoo.

So to lighten things up around this joint, I thought I would begin introducing you to some of our besties. While they don’t have anything to do with my health issues, in a way, they really do. They keep me company when I am stuck in bed with migraines and nausea. They give me a reason to get up in the morning and to stay on a schedule (you know, feeding schedule!), they make me laugh out loud with their antics sometimes. They help to keep me grounded and they keep me from being too self-centered all of the time.

So first up will be the more famous of our hounds, the lovely LuAnn. You can find her on FB as #Luannticcs. LuAnn hails from the side of the road between East Hungerford, Texas and nowhere. I was on my way to pick up my nephew for a holiday visit December 2012. It was in fact the coldest weather we have had in years. As I was driving, I saw a reddish spot on the left side of the road. It looked like a puppy. I swung around and threw my hazard lights on. She was skin and bones and she growled a little at me from the bank of dead weeds she was trying to hide in. I coaxed her and got hands on her. She was so full of fleas, it gave life to the cliche “her skin was crawling.” It was insane. She was literally starving so we drove through McDonald’s for a sausage/egg biscuit. She swallowed it in 2 bites. Then, she drank almost every drop of the water I had with me.

Poor puppy!
Day 1 with LuAnn

She slept the whole way to the destination and then back to the house again, almost a 4 hour trip. We got her washed up and fed and well, the rest is history. LuAnn is almost 4 years old and a healthy if not overweight 70 pound hound. Now LuAnn has some issues to say the least. For the first maybe 4-5 months, she was a chewing machine. We normally have a doggie door we keep open at all times for the crew. But that came to a halt for awhile when we first got LuAnn. She ruined several good pairs of my husband’s shoes and a few of my books. There were also several pillows, sheets, and blankets involved. She finally just stopped, Thank GOD!

Now you may ask, why is she FB famous? She is goofy as hell. And when I say goofy, I mean goooooofy!! So needless to say, we have some great snapshots of her, well, being Goofy! LuAnn is also afraid of the riding mower, although she will chase it around the yard. She also will bite at the weedeater. She does not like when I sweep the floor or when I vacuum. She took over one side of the couch. While she has somewhat of a sweet disposition, it also seems like she has a loose screw. She is not the brightest bulb in the pack if you know what I mean.

Dog Days
Pretty cute here!

 

Happy Friday, my peoples. Soak up some LuAnn. She is known for bringing a smile to those she meets! -B

 

Hanging around with the Hound!
70 pounds of PURE Love!

Meltdown City, Next Stop!

How do you cope with meltdowns?

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? 

erupting-volcano-night-17297748Oiy. 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

 

Be Good to YOU

What are some ways you treat yourself well? In what ways are you kind to yourself? Please add your ideas to the comments below. 🙂

 

So we’ve (as in my husband and I – we are both teachers) been on summer break almost a month now. It has been pure heaven. What have I been doing? Producing? Well absolutely nothing, my dear friends. I’ve had some doctor appointments, dentist, eye doc, you know, just those things that have been impossible for me to manage while working because of the massive fatigue.

But otherwise? I have nothing to show. And how do I feel about this? Delightful!! Fantastic! Superb! It is down right, totally fine. I used to feel guilty about not doing anything, or not being productive every minute of the day. I was always busy. Now, at the time, I enjoyed being active, working, exercising, socializing, and such. But Lyme disease changed all of that.

Over the years (even before I knew I was ill), I’ve struggled with a lot of guilt and angst about not doing enough (these are, of course, self imposed standards of “enough”). I would push myself, as I always have, to make “things happen,” to “get er done” as we say in Texas. While resting, I would stress out about the things I had (self imposed!) to accomplish that I hadn’t completed. Then came along nausea, headaches, joint, pain, severe fatigue. Well, all of this made for a witch’s brew of toil and trouble!

Now, I admit, it has taken time to make this change and there are still times when I click into that previous me mode, and I take it to the limit. It’s usually not a good thing though and if I can catch myself before that manic phase kicks in, well everything is better overall. 

Looking back over my 15 years in education (I worked 10 years outside of education so I most definitely appreciate the time off), I realize that I have worked almost every summer for the first 10 years. First, out of necessity, and then, for the extra money and experiences. These past 3 summers of Lyme have been about treating and resting. Actually, the first summer after being diagnosed I taught a 3 week class. What was I thinking? At the time, I thought, oh good, extra money and this Lyme thing will probably be done by the end of this summer after treating for about 4 months at that point. HA HA!!! That was BEYOND wishful thinking for reals!

Anyway, I know this post is kinda all over the place, but I guess one point I am trying to make is Take it Easy. Don’t Kill Yourself trying to do everything you did before. Your body has to heal. You beating yourself up about it is certainly NOT GOING TO HELP your recovery process. Believe me, I learned this the hard way. 

keep-calm-and-be-good-to-yourself
Source: http://www.Keepcalm-o-matic.co.uk

 

 

What are some ways you treat yourself well? In what ways are you kind to yourself? Please add your ideas to the comments below. 🙂

Remember Please:

BE GOOD TO YOU!

Peace – B

How Are Lyme Disease and AIDS Alike?

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.

skulls-1433178__180

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:

1. Ostracised.

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.

2. Untreated.

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.

3. Denied

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.

This is what happens when facing a silent epidemic
Source: http://www.lifeofpix.com

 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

 

 

 

Chronic Illness Bloggers Network

I am so excited to announce that I have joined the Chronic Illness Bloggers network. You can find  it at Chronic Illness Bloggers as well as on its FB page Chronic Illness Bloggers Facebook Page.

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The network’s purpose:

“Chronic Illness Bloggers is a network for those who blog about chronic illness. All chronic illnesses are welcome here and we aim to create a supportive community for bloggers, where we can share ideas, blogging tips and brand collaborations. For businesses, we aim to provide a means for you to reach your target audience, gain exposure, and grow your reach.”

This wonderful opportunity comes to me through you, my dear readers, and supporters. I thank you for your visits, your engagement, and your overall support. THANK YOU!!

xxoo – Belle

 

 

 

3 Tips for Responding to “How are you doing?”

Do you have any tricks or tips to add to enhancing communication with others? If so, please leave a COMMENT! 🙂

As a recently inducted member of the Chronic Illness Club (CIC, if you will), I joined several online support groups. And now, 3+ years later, I see many posts about this topic. Many times, as Chronic Illness People, we struggle with how to respond when someone asks us how we are doing. Why do we struggle? Because all of the time, most of the time, there is some pain or symptom(s) we are dealing with at the moment. So when we are asked this question, we feel trapped. We debate on what we should say: Should I say “I’m fine” even though I really am not? Should I say “I’m good” and hope that next time, if I say I am not so good since chronic illness symptoms wax and wane constantly, the other person will understand? For those who have never had nor been around someone with a chronic illness, it sincerely can be a difficult thing to understand completely.

If you have a chronic illness, then quite possibly I am preaching to the choir about the misunderstanding part. And many times, as members of the CIC, this is where we can severely get bogged down in these encounters with our unrealistic expectations, our over-analysis, and our misconception that there is a lack of empathy from others. Yes, there are times we will have encounters where the other person does not meet our minimal expectations,where this other person does not empathize at all. But I hope I can convince you that these negative encounters are or will be guaranteed to be few and far between after you check out my tried and true tips! So without further ado…..

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Source: http://www.pixabay.com

3 Tips for Responding to “How Are You Doing?” :

1.  “I’m OK, how are you doing?”

While this may seem like  is an obvious one, let’s explore the root of why we may not want or don’t use this response more often and why we often are frustrated after we have the interaction. As CIC members, sometimes, we feel guilty merely stating “I’m OK” because in truth, we aren’t. Many times we are dealing with invisible symptoms, ones that can be very painful and/or ones that make us feel terrible inside such as headaches and nausea. Somehow, we feel that if we do not respond with the absolute truth that we are lying. On the other hand, sometimes we use this response but we really mean, “I feel like CRAP!” and when the other party doesn’t read our mind, we get frustrated, angry, and hurt. We think that the other just doesn’t care about us because he/she didn’t “get” that we merely stated the pat answer but expected a much different response. I know I have done this many times as I have tried to navigate chronic illness and communication. It’s tough. But, none of us are mind readers. If you want someone to know anything, you must tell them in concise words. That’s just how it works.

2. “I had a rough day yesterday, but I’m doing a little         better today.”

With this response, perhaps it will feel a bit more authentic and truthful. We have days, hours, minutes, where we have relief, and we can enjoy ourselves. But those moments can change on a dime as we well know. One of the hardest things, I think, for others not in the CIC to understand is how quickly symptoms can change. It was a challenge for me when I first became ill to get the hang of this game! One minute I can be decent. I can hold a conversation with absolutely no problem. Yet, not 5-20 minutes later, I am suffering severe nausea, and I am experiencing word-loss. This occurrence is hard enough for those of us experiencing this to discern, let alone someone who had no idea how this works. Personally, I like this response or a modification of it because I’ve found that people can understand it and relate to it on some level. Another version of this might be “I had a great day yesterday, but today is tough.” Most people get this kind of a statement.

3. “I’m really not doing too well today, but thank you for asking.”

This may result in the other person not knowing how to reply, but in my limited experience, people get this one as well. While you are not explaining the sordid details of why you are not feeling well (you can save that for your BFF who REALLY gets it), you are telling the person, hey I’m not doing too hot. Also, you are acknowledging his or her effort and thoughtfulness to check in on you. Look, bottom line is that if every interaction with us becomes a negative or an uncomfortable one for the other party, it probably won’t happen much, if at all after awhile. This is just human nature. We move towards positive interactions and away from negative ones. Granted, sometimes this can trigger more questions, but maybe that is a good thing! It can open the door for us to have a candid conversation about our illness. This can also lead to more positive interactions, as well as more understanding and empathy.

Regardless of how we respond to the question above, in the end, it isn’t the other person’s responsibility to make us feel a certain way, nor his or her obligation to “guess”  what we mean. I know, I know. Psycho babble. But it is to our advantage if we can make these interactions more positive and less stressful for ourselves. All in all, others are sincerely trying to be kind and caring. While this isn’t as easily done with us, it can work. These small and yet important connections with others can be spirit lifting. It can help of feel connected to something bigger than ourselves. It can help us feel less isolated and less misunderstood. 

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Source: http://www.pixabay.com

Do you have any tricks or tips to add to enhancing communication with others? If so, please leave a COMMENT! I would love to hear about other techniques. 

On a final note, I am on summer break from teaching high school. I just had a colleague text me, “Just checking on you and your health. I hope hope you have been able to relax!” I am replying with, “Yes, indeed! Summer break is so wonderful. I can rest whenever I please. Thank you for thinking of me. How are you doing?” 

This completely made my day. Wishing you a both a painless and joyful day. -Belle

 

Just ACT Normal

Lyme and its many facets…

So for about the past monthish, I’ve been struggling with both fatigue and a weird rash that popped up on my face and arms. Let’s just say it wasn’t fun. But, I’m back on track, the rash is gone, the fatigue hangs in, and we are moving forward into our last week of school.

Being chronically ill with Lyme disease or chronically ill with any other disease means figuring out what one and do and not do on any given day. And while working full-time, my routine is basically, go to work, come home eat and rest. Weekends are for resting. This spring, I have missed several functions due to feeling terrible. You know, like baby showers, dinners, birthday celebrations, hanging out with friends and family. Looking back on this past spring, I think I have  been at a real function maybe 3 times? Now, don’t get me wrong, I am in no way a social butterfly. But still. I definitely try not to feel guilty when I have to cancel, and I try to be good to myself, especially when I feel depressed about having such a restricted lifestyle.

While honesty is the best policy, sometimes it just works better to try and put on the Normal Act. Recently, I was able to attend a celebration. Overall, it was really nice. I also was able to see friends and family that I haven’t seen in quite awhile, so that made it even more awesome. Here’s the thing though, it wore me out. When I get into situations like these (and again, it isn’t very often), I do feel stressed out. Sometimes just talking can be an absolute chore and/or nightmare. And while yes, I am a teacher, and I have to talk a lot in my position, well, it’s hard to explain, but it is different. Worst case, as a teacher, I can wing it because I have experience. Yes, I do have conversations with my students as well, but most of the time his happens, it is usually just one on one without a ton of extra stimulus. It is easier to “act” normal and to be in control of the situation. Not so much at a party.

Sometimes, in a social situation like a party, or something involving many people, I really do my best to “act” normal, to put on the public mask. But it is damn hard. It takes a lot of work. The noise level, the meeting of people, the small talk, the picture taking. Wow. It just overwhelms me. I guess this is due to the neuropyschiatric symptoms of Lyme. One of my strategies to dealing with this kind of thing is I try to switch to auto-pilot. I try not to think too hard. I try to speak in simple sentences. Really, not speaking is the best.While at said party, I forgot someone’s name that I have known for quite a long time, I switched up words, I forgot words. And as my body and brain became more tired, the worse it became.

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However, people can be so very kind. They want to talk to me about how I am doing, how is the treatment, am I making progress, etc. I do indeed appreciate it all. But it can cause a bit of anxiety for me as well. I think it is my cognitive wires getting crossed. So some things that came at me the other day: Have you tried ***treatment?, You look great, you must be feeling better!, Mental health is 50% of overall health, and more. Of course, I want to engage in conversation, I want to interact with others. Yet, this alone takes so much energy. It all just wore me out.

 

On a positive note though, like I said the party was fun, and I was able to rest all day yesterday. I hope you all are enjoying this Memorial Day.

Namaste – Belle

An Award! Oh My!

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I would like to sincerely thank Lexi over at Fluff and Co for nominating me for the Blogger Recognition Award. This recognition has made my month of March, well, even my year, so far! I’m just so excited! Thank you, Lexi! Please check out Lexi’s blog where she writes about food, beauty, fun, you name it!

Simple rules to follow:

  • Select 15 other blogs you want to give the award to. You cannot nominate yourself or the person who has nominated you.
  • Give a brief story of how your blog got started.
  • Give a piece or two of advice to new bloggers.
  • Thank whoever nominated you, and provide a link to their blog.
  • Make sure to also attach the award itself! Comment on each blog and let them know you’ve nominated them. Provide a link to the award post you created.

How Read Between the Lyme got started?

For the past 3 years, I have been learning how to live with a chronic illness. Chronic Lyme disease is misunderstood and there is little information (and a lot of misinformation) out there. I decided to share my experience via blogging mostly for selfish reasons: to connect with others, to put a voice to some of the struggles I am dealing with, and to help educate others about this disease. It has proven to be a wonderful and inspiring adventure!

Advice to new bloggers:

Keep at it. Enjoy. One step at a time.  🙂

 

My fabulous nominees are:

No Passing Fancy

itsgoodtobecrazysometimes

Looking for the Light Blog

Two Rooms Plus Utilities

Dr. Gulara Vincent

The Chronicles of Chronic Illness

Just Plain Ol’ Vic

Jenny Lives Blog

The After Prison Show

Indisposed and Undiagnosed

EllenBest24

Hughcurtler

Element

Flowing Through the Fight

Daisy in the Willows

I hope you can find a few minutes to check out these awesome people and their blogs. Happy  Easter, peeps. xxoo-B