While you and I have had a long, steady and committed relationship, it hasn’t always been a bed full of roses. However, I would like to begin by celebrating what has worked for us. First, thank you for delivering me into this world safe and sound, and making sure my mom had a speedy recovery. Also, thank you for doing this for my two younger brothers as well. You had a good heart at the beginning.
Your diligence and kindness did help me through my teenage years; I wasn’t sick very often so there wasn’t much of a strain on our relationship. Things were simple then, and we had a strong bond. I knew I could count on you if anything minor would happen like a broken arm or leg (don’t all kids long for a cast?) Check-ups went well with no major injuries or illnesses, well except for a severe case of mono and strep in my mid-20s.
We coasted along you and I, only periodically needing to reassess our relationship, always determining that we were continually committed to one another. But then things started to become tenuous. In 2009, I began suffering from fatigue and malaise. At first, you told me that I was having another episode of mono. I believed you. I rested, and I got better. Yet, this cyclical issue continued for 3 years. The answer for my sickness was always the same: mono – again. By 2011, you diagnosed me with Hashimoto’s. Ok, I thought. All relationships go through periods of growth and change. Compliantly, I added thyroid medication to my routine and assumed that I finally understood what was happening to me. But our relationship continued to be rocky.
Alas, Western Medicine, you deluded me. By the fall of 2012, I had already experienced 4 relapses of mono or Epstein Barr Virus and the fatigue was getting worse and lasting longer. I began having daily headaches and joint pain. The lower back pain and the neck pain were the worst. I began having trouble getting through a day at work. I saw 7-8 doctors of yours who all professed a specialty. I put my faith in these doctors. Batteries of tests were run. And yet, every result came back negative. How could you fail me this way?
You took away years of my life! If only I were diagnosed in 2009 with Lyme disease (which I tested 100% CDC positive for in March 2013), maybe, just maybe, I would not now have chronic Lyme, Chronic Fatigue Syndrome, and chronic EBV along with a few other choice conditions. If only you would have seen me as a person, as a person dealing with REAL symptoms, as a whole person rather than just parts, maybe we could have stayed together and worked things out.
But you pushed me aside for bigger and better things, for easier diagnoses and for illnesses detected and treated in the 8-10 minutes you are able to give each of your patients. You told me that my symptoms weren’t real, that my daily headaches were caused by dehydration, that my neck pain was from carrying my purse on the same side all of the time. You told me that chronic EBV doesn’t exist. You did MRIs and told me that there was no reason for the neuropathy in my feet. I was sent on my way at every turn without answers and most of all, without any support.
It was because of my own perseverance and my own belief that indeed there was something wrong I was able to get a correct diagnosis finally. That all of the symptoms I was experiencing were in fact REAL. And just because you couldn’t figure out what was going on didn’t mean it wasn’t happening to me. But even after my Lyme diagnosis, I stuck with you, scared to go on without you and your “modern ways.” I subjected myself to the self-doubt, to the scrutiny of a multitude of Western Medicine doctors, including my Endocrinologist who, when I told her about the Lyme, repeated my Lyme diagnosis in disbelief and disdain.
Even after all of this time, you are able to deny me the care of another. For more holistic and natural approaches, I can’t use my health insurance. You dictate that Lyme disease be treated with only 3-4 weeks of antibiotics and that is only if one of your doctors knows even a smidge about Lyme (and most know nothing).
It is time to let me go. I need to move on, and I need the opportunity and the freedom to explore other relationships. I deserve the best possible care for the chronic conditions I am experiencing right now. I need to be believed and not neglected because I don’t fit into the role of the good patient you want me to be. So, from here on out, we part ways.
While I wish you the best, my main hope is that you can someday soon expand your horizons and build better and more positive relationships in the future.
What a month! Spring is starting to show up here and we are so very ready for it. I’m dreaming of a small container garden and getting the landlord here to spruce up this yard of ours (he’s also a landscaper.) This time last year I had roses on my bush, it’s definitely a delayed spring!
Well, on to the topic of fighting this Lyme disease.
Migraine app notes – I’ve had 7 attacks, lasting in average of 72 hours. So, while they’ve absolutely been lasting longer, I’ve had 6 attack-free days. Which I believe is a record! I’ve been getting an average of 7 hrs of sleep each night – this doesn’t typically account for the getting up a few times and tossing and turning. I’ve taken 38 Clonidine. They happen 80% of the time between 12pm and 12am (ha! so helpful,that). Average level is 7.9. Top three auras/prodrome…
I have 2 Lyme doctors now: one in town and one out of town. The doctor here is the one who tested me and diagnosed Lyme disease about 4 years ago. I have been in treatment since. I see my doctor in town about every 3 months.
I began seeing my out of town doctor (OT) a little over a year ago. Selecting this doctor was based on the fact that the office accepts insurance and also based on recommendations from a Facebook Lyme group I frequent. Getting to these appointments involve a 3+ hour drive one way and a stayover if at all possible. This doctor likes to see me every 4 months.
However, my OT doctor will not be accepting insurance anymore at the beginning of March. Visit costs will start at $300 and up. My insurance will not reimburse me at all for these visits. So, now what? Treatment with this doctor has entailed using herbal drops and supplements. Treatment has also focused on a more holistic approach at least for me since now I am on the chronic stage of this disease. Visits last usually a solid 30 minutes. OT doctor has caught more issues with my thyroid and added medication that seems to be helping with energy levels. OT doctor’s approach is multi-system, an approach I think is in my best interest.
My doctor in town (let’s go with IT from here) continues to accept insurance. And while I have much respect for my IT doctor, the past few years, I have made little progress in my recovery with this doctor. Appointments require my taking a day off of work (it takes a good 90 minutes to just get to the office). I no longer have any sick days which means I am docked pay. I used up all of my extensive bank in the past 4 years. Then, I may get 8-10 minutes with the doctor, or, like this last time, with the PA. Now, don’t get me wrong; the PA is very sweet but not on top of what is going on with my treatment. Yes. I have a file about 8-10 inches thick, but again, they spend a like 8-10 minutes total on a visit with a patient.
I hate to complain. I know that I am really LUCKY, not only to have insurance, but to have a doctor closer to me who takes insurance. But then again, if I am not really making any progress……I just don’t know. I want more from my IT doctor, more information, a more detailed treatment plan, more time with the doctor at my appointments. Yet, this is not going to happen.
Staying with the OT doctor is going to be pretty costly. None of the herbal drops nor supplements are covered by insurance (the additional thyroid med is not that is it). I’ve managed to pay for these in the past but if now there is another $300+ per visit…you get the picture. Of course, bottom line is improving my health.
I have one more appointment with OT doctor before the change to no insurance so I am hoping I can get some more solid information from OT about possible costs, etc. if I continue to be a patient. I want to stay in treatment with OT. We’ll see.
At this point in the game, my case of Lyme is chronic. There is no way around it. Of course if I had my choice with no worries about money (as if any of us have this option!), I would want to see Dr. Horowitz and/or Dr. Jemsek in D.C. For either doctors (if I could even get in – some wait 1-2 years for appointment) it would then cost thousands for treatment. It is criminal that Lyme patients do not get the needed nor correct care in this country.
On that note, friends, I am off. Time for a nap. Best to you and yours – B
Over the summer, I’ve felt like my cognitive issues or the neuro Lyme, have improved. In June, my LLMD here in town (I have another doc out of town) started me on a supplement, ATP Fuel. Since being diagnosed with Lyme disease in March 2013, severe fatigue has been one of my major, and quite consistent soul crusher, er, I mean symptom.
It’s continued to be a lingering symptom. Now, when I say fatigue, or severe fatigue, I don’t mean “tired.” There is a chasm of difference, one I never understood anywhere near well enough BLD ( Before Lyme Disease).
You know what makes me “tired”? Staying up too late, doing too many activities, physically or mentally exerting myself ( this excludes Pokemon Go).
But fatigue? A whole other ball game, my friends. Being “tired” means you need sleep so you sleep and wah lah! You wake up feeling like a million bucks! You are King of the World!
But with fatigue not so much. Instead, waking up is a never-ending continuation of the fatigue you’ve been feeling for the last 3, 6, 9 months, or even years. It’s like a prison sentence that you don’t even have enough gumption to get angry about. It’s like being in a cave without light. I could go on but basically FATIGUE is not being “tired.” Fatigue sucks the f-ing life force from your body. And the most depressing thing about chronic fatigue (well, there really is a list of things), is not knowing when or IF it will end. No matter how much rest and how little of everything else, that’s always the question. Will it Ever End?
I’ve written about fatigue before HERE and HERE. Hopefully, these posts can give you an inkling of the severity of the fatigue many Lyme patients as well as many chronic illness patients experience.
Today, we’ve learned that Paul Ryan, the leader of the Republican Party in the United States of America, where I live and work, has stated his party’s intentions to defund Planned Parenthood.
With that in mind, I thought I would share some brief history.
In 1800, the average birth rate for the American woman was seven children. We don’t know the precise statistics for infant or mother’s mortality rates because we weren’t tracking them yet, but they weren’t good: a century later, in 1900, eight hundred and fifty women died for every 100,000 live births. (By then, we were better versed in basic hygiene). This is the century that anesthesia was finally introduced to the birthing process, despite objections from the clergy, who claimed that labor pains were the will of God. Pads were made of wood pulp, and tampons had yet to be invented. Despite the clitoris being known to medical researchers and scientists since 1559, this was the period in which its existence vanished from anatomy and medical textbooks, not to reappear for almost two hundred years. Women were believed to be weak, prone to bouts of “hysteria”: a catch-all diagnosis that hid the real culprits. What we then considered “female hysteria,” we now would consider cancer, flu, viruses, depression, anxiety, mental health issues, or almost any other disease. Hysterectomies were performed at staggering rates on mentally ill women, as it was believed that removal of the female organs would restore sanity…..
First, HAPPY NEW YEAR! We’re having a very lazy day here at the RBTL casa. I hope you and yours are doing well. 2017 has arrived!
I found the below post in my drafts; I have no idea why I didn’t publish when I composed it but, hey, Lyme Brain here so cut me some slack. Anyway, it actually seems appropriate for today, on our new, shiny bling bling, January 1, 2017. And BTW, I still most definitely recommend the movie Begin Again.
A date aroundish August 22, 2016:
First, have you seen this movie, Begin Again? It’s one of those you pick up thinking, eh, it might be OK. I’m not usually a big fan of Kiera Knightley but I am a huge fan of Mark Ruffalo. Anyhoo,this movie is great!! Check it out if you have some time. You won’t be disappointed. Promise.
So, I’m back at work, but without students. As teachers, we have 2 weeks of professional development before students are back. For the past 15 years, usually this is only a week but our school calander for 2016-2017 has changed and so, this is happening.
So far, it’s been great! It’s always nice to see everyone after an extended break and to also see friends from other schools. My favorite interaction so far has been seeing my very awesome and wonderful first team leader. This lady. She amazes me with her skills and kindness.I love to see her because it brings back those sweet memories of when I began my teaching career 15 years ago. And while I’m sure she is at a point she can retire, she told me that she has no plans of doing such because she loves her work. She LOVES her job. Now if that isn’t inspiration, I don’t know what is.
Teaching has brought so many gifts to me it’s hard to count them all. I was, shall we say a little late to the game, in that I worked outside of education until I was about 30. Honestly, I’m glad I waited and did some things not related to education. Those other skills, customer service, managerial, have served me very well as a teacher. And it’s always a nice comparison to have when the going gets tough.
Anyway, as a teacher, I always feel like it’s the New Year right about now and for our profession, it is. We prep, we make resolutions and goals, we plan. And we get to do this with a group of people who are all on the same page. The energy and the collaboration going on is pretty amazing.
Are we idealistic? Yes.
Are we filled with eternal hope? Always. Our students deserve it. We deserve it.
P.S. I wish you all an amazing 2017. Let our shared journey around the sun Begin Again. Throwing lots of love out to you and into the world – B
Changing our world begins with us. And for us to change our world,we need to change our words. Our words can reach places we can't reach and that's why we have impact words blog. To reach out to people and change their world through our words. We reach out and touch lives.