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?
Happy belated Martin Luther King day!
Hysteria. – http://wp.me/s3vBSR-hysteria
from I am Begging my Mother Not to Read this Blog:
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
6 Quotes To Inspire You In 2017! – http://wp.me/p752yH-1oS
and happy holidays to all!
P.S. The photo is what I wish the weather would be today and not the reality. Here this Christmas day, we have a balmy 75. It may reach 80? The air conditioner is on. But the photo is beautiful! 💕
I woke up this morning, early, and I was really excited because I didn’t have a headache! Yippee, thought I. And then I realized that I’ve had a headache for over a week now. Maybe 10 days? It subsides off and on, but I think it is the same damn headache. Maybe not, but that really doesn’t matter all that much. The pain matters more.
It may be the insane weather we are having. Last week at this time, it was 80 degrees. Then by Sunday, it was 27 degrees out. And today? A rainy and moist 75. Seriously. So, yeah, there’s that. It may be that the semester just ended and even after 16 years of teaching, it’s still pretty stressful. More stressful when chronically ill. So, there’s that too.
There have been a few days these past few weeks where I just keep taking medicine and hoping one of the many selections will just give me some relief, and periodically something has. Usually it is maybe an hour or so at a time. Then, the monster returns. It isn’t a migraine. It’s just a constant pain inside my skull.
Before Lyme disease, I rarely had headaches. The only headaches I experienced were either alcohol induced or hormonal. Indeed, I was a lucky duck. My mom has had issues with headaches her whole entire life including migraines. And my husband also has migraines periodically that lay him out for most of the day/night.
Then, in the fall of 2012, I began to have daily headaches. Not crippling, mind you, but just enough pain to not be able to ignore. Every day at work, by noon, I could feel it coming on (or maybe it never really went away). Sometimes, nausea would accompany the headache. The Daily Headache continued for months on end. Of course, there were a multitude of other symptoms going on but the headaches were something quite new and stood out more than say the fatigue or the periodic joint pain.
When I saw the Worst Infectious Disease Doctor Evah (although statistically, ID doctors are NOT LYME LITERATE) in January 2013 with a solid 25 symptoms including the onset of the new Daily Headache, he told me to drink more water (since I was hospitalized with a horrible kidney infection in 2006 I drink almost a gallon of water daily). The ID doctor dismissed every single symptom I explained to him but the bitterness of that particular doctor visit is for another time. Needless to say, almost all of my symptoms were classic LYME DISEASE symptoms and luckliy, I was diagnosed (and CDC positive) less than 6 weeks after this visit with the dismissive ID doctor. Anyhoo!
As I moved into oral antibiotic treatment, the headaches continued except at some point, I can’t pinpoint when, I began to have migraines. WTH! Migraines really suck! I now can empathize way more with my mom and my husband and others! Hours and hours of pain, nausea, ugh. For a while, and I can’t be more specific because of my short-term memory issues (LYME symptom as well), I had daily headaches and then migraines in between. Good times. I am so sorry if you suffer from headaches and/or migraines, my peoples!
When my LLMD took me off of antibiotics full-time last November 2015, I still had the headaches. And the migraines. But, slowly and surely, these daily headaches and the migraines began to let up a bit. So, for the past few months, probably since say June (again, short-term memory loss!), there’s been a reprieve from the daily headache. Since June, I’ve had maybe 3 full-blown migraines. This has been progress! I think that this progress has been the result of many things coming together at once, such as Lyme treatment (after so many years going untreated) and dietary changes.
But, since Thanksgiving, my diet has been seriously not so good. I had cut out all sugar, carbs, cut down on wheat and corn products. Oh, Thanksgiving. I mean, I haven’t gone totally CRAZY with eating sugar, etc. but I have been drinking more soda and well, I sure haven’t been grain-free. I plan on getting right back on my diet after Christmas. I can see now that it has helped me to control some symptoms and while it was a bit of an adjustment to new eating habits, it certainly is worth it.
Like I said, this headache started about a weekish ago. On my last day at work, before Winter Break, I sat in my classroom, in the dark, just trying to work through the pain (no worries, I didn’t have students LOL). Saturday was much of the same. At least this week the headache hasn’t been a full-blown migraine but still. I’ll tell you though, I most definitely appreciate the time I have without headaches now. Pre-Lyme, I never noticed how wonderful it is NOT to have a headache. Chronic Lyme disease continues to teach me lessons. Hey, just trying to stay positive! 🙂
And, here comes my little friend. Back again today. Time to rest a bit.
Toodles friends – B
Thinking about dreams we noticed that following your dreams is often praised in a one-sided manner. Basically there is nothing wrong with it except it’s quite naive. Dreams and especially grand dreams are quite often an illusion. So it’s good and healing that those dreams don’t come true. The last scene of the film “Zorbas the Greek” got us thinking when Alexis is so happy about the great crash of a dream.
Denken wir über Träume nach, fällt uns auf, dass oft einseitig das Folgen seiner Träume gepriesen wird. Das ist grundsätzlich richtig, aber naiv. Träume und speziell grandiose Träume haben häufig etwas Illusionistisches. Es ist geradezu gut und heilsam, dass diese Träume nicht Erfüllung gehen. Uns hat die Endszene des Films „Alexis Sorbas“ zu denken gegeben, in der sich Alexis über den großartigen Zusammenbruch eines Traums freut.
Picking up the pieces…
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