Doc Talk v. 3

Update, my pretties! 

Today, I had my 6 week follow-up with my doctor. Six weeks ago, after the 3rd CDC positive Lyme test in the 4 years I’ve been treating (not a new infection), my doctor put me back on antibiotics. I had been off of ABX for about 18 months. 

My doctor wanted to try Rifampin. It is an older Tuberculosis medication but supposedly, some patients who have been sick with Lyme for a long time and who continue to have bands show on bloodwork are finding this medication is helpful, particularly in treating persister bacteria. I figured “Why Not?” Let’s give it a go.

So here I am six weeks later. The fatigue is definitely better but it’s still there. I have some short bursts of energy (or energy for me at least!) periodically. At least the fatigue is not as ridiculous as when I had to take medical leave from work in March. Oh, Snap! I don’t think I mentioned that before – time for a post about THAT and soon. But otherwise, I don’t feel much different than I did 6 weeks ago.

migraine

Luckily, I’ve had no issues with this particular medication. I’m just trying to take probiotics religiously!! Since my doctor takes insurance, I literally see her for about 8-10 minutes per visit and today was no exception. In fact, today, I think we had a whole 5 minutes together. Insane.

Yes, there are other doctors I could possibly see. However, in Texas, the options for docotrs who know and BELIEVE in Lyme disease are very, very few and far between. Yes, I’ve had some more wise and more dedicated Lyme patients tell me to “Go out of state” and/or “do experimental treatments.” (Uhm, yes, there is a saracstic tone in the last sentence). While I sincerley wish I could do and try EVERYTHING to try and get better, the reality is that I don’t have the money for all of that. Not even close. I’m just doing the best I can with what I got.

Conclusion of said visit? Keep taking the Rifampin. Check on Lyme and the fatigue through blood work (results in 5-7 days). Revisit in 2 months. Like I said, short, short visit.

I will see my other out-of-town doctor mid-May. She is no longer taking insurance so I’ve been saving up my shekels so I can at least have an hour with her. This will run $299+. This will not include any extras. I would love to do a Vitamin C IV ($175) and a Glutithione IV ($175+) but that isn’t going to happen. Honestly though, I am looking forward to spending a whole hour with my doctor. An hour! That’s more that I spend with my doctor here in town in a year. No lies, people. 

Lyme disease, once chronic as it is for me now, it a very difficult and complex beast to tame and treat. I know that seeing a doctor for 5-10 minutes every 3 months isn’t working anymore and probably hasn’t for awhile. I’m really counting on this May visit with my other doctor to be awesome. I’ll keep you in the loop!

Hoping all is well in your world. I’m going to do my best to post more frequently. Let’s just say that March was a real *biatch and leave it at that.

Peace – b

Begin Again

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. 

Starting the year off right.
Source: http://www.pixabay.com

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

Hitting the Mark

Make it happen!
Make it happen!
Lately, I have been feeling like I haven’t been hitting the mark. What is the mark, you ask? Just feeling like everything is balanced. Right now, I don’t feel balanced in my work nor in my personal life. The scale has been unavoidably tipped, and all of my time seems spent on How I Feel. I am diligently working towards getting this scale balanced again, but now, throwing work back into the mix, it feels like an impossible mark to hit. While my job is rewarding in so many ways, it also drains every ounce of physical and mental energy I can muster each day. By the time I make it home, I feel wasted and withered, no matter how easy or how difficult the day has been. I can’t seem to change these dynamics, which is so frustrating!

After years of fatigue and physical pain, I still haven’t figured out how to squirrel away any energy for myself and my personal life while I am working. I wish I had like a bank where I could deposit blocks of energy, then withdraw as needed! How awesome would that be! When I feel this way, Guilt stealthily creeps in, the guilt involved with not feeling like a productive partner in my marriage, like an active participant in social events with friends, like an emotional engaged human. I know guilt is self-imposed and controllable, but it is my go to feeling when I am worn out and stressed. No bueno. Trying to play psychological games with myself, every time I feel “guilt”, I am working to replace it with feeling “Grateful” instead.  Am I hitting the mark? Who knows. 

Yesterday, I started feeling Guilty for not immediately reading a student’s novel she wanted to share with me. I asked her to email it to me for future reading. Realizing the Guilt was moving in quickly, I endeavored on removing the Guilt and replacing it with the Gratitude that this person is willing to share a piece of herself with me. I will read the novel, and I will give feedback. I just couldn’t manage it during my lunch break yesterday. It’s all good. 

Do you feel Guilt? Do you feel like you are hitting the Mark? 

Peace -B

Don’t Dream It’s Over

Good Monday morning, my people. What a most glorious weather weekend! Finally, we here in the bowels of Texas have had some fantastical temperatures. Way better than the 90+ temps from last weekend. I was able to get out and enjoy some of this myself. Awesome!

So I am at the gas station on Friday afternoon and I hear this song “Don’t Dream It’s Over” by Crowded House blasting through the outside stereo system (I mean, who in their right mind can pump gas without a soundtrack?) except, unfortunately, in our skewed one dimensional universe, it isn’t Crowded House I hear singing this melody. Actually, I’m not even sure who it is, but it freaks me out all the same. I mean, this song isn’t THAT old and someone has already remade it? And the remake isn’t even a good one. Seriously? Can we not come up with any new ideas, songs, writing, etc. that isn’t just a remake of the old? I know, I know. Most likely, my aggravation is just a sign of my aging.

But the song takes me back to when it was first released in 1986. Ok, ok, that was 30 solid years ago, but it certainly doesn’t excuse the horrible remake of the Original. Yes, I was in high school, a sophomore or junior, and it was a song that was popular and played on the radio incessently.  This was BL, Before Lyme, and I was into so much, and I had the energy to do pretty much whatever I set my mind to! In high school, I was a member of the school paper so I went to all kinds of high school sporting events (my entry level postion was a sports writer – too funny), and then I worked my way up to editor my senior year. As most teenage kids, I was very social. My circle of friends was far and wide. At 16, in Kansas, I could drive already and so, this made getting together with friends way easier than not. 

All that energy! If only I could have bottled some up and saved it for a rainy day or a rainy year! My world is so limited now that I am dealing with a chronic illness. Hey now, I am not trying to be depressing nor morose, it’s just the hard truth right now. I am sure if you are dealing with a chronic illness also that you “get it.”  There’s no one to blame and no one at fault about this situation. It just IS.

At this point, in the throes of severe fatigue, I work and I rest. These are pretty much the only 2 things I can manage at present. Sometimes, I move out of my body for a few seconds and view myself as an outsider. And when I do this, it feels so weird. How can I be so tired and fatigued all of the time? How do other people manage to work and be social? How does anyone have the gumption to get up early on a Saturday, take care of children, go to events, and other things? All in one day???  

But then, of course, I remember these are all things I used to do as well, without a thought about how I might be able to juggle all kinds of things going on each and every day. 

I guess I am living in an alternative universe for now. A universe where fatigue rules, and Miley Cyrus sings, “Don’t Dream It’s Over.”  Hopefully, here soon, I’ll be back in the real world where I’ll “Get to know the feeling of liberation and relief.” Until then, my pretties, take it easy and enjoy the REAL SONG: 

 

Peace – B    #LivingwithLyme

Blogger of the Week

I’ve been fortunate enough to be a part an organization, Chronic Illness Bloggers, for the past 4 months. This has been an absolute great experience. Please help spread the word about my blog in hopes that it helps people protect and promote solid information in regards to Lyme disease. Also, please follow the link below to get to my featured profile and to The Chronic Illness Bloggers Network. 

As always, I am ever so grateful and humbled by your support -Belle
http://chronicillnessbloggernths. s.com/2016/08/29/blogger-week-belle-read-lyme/

How Can I Become a Better Lyme Advocate?

Hola, peoples. Summer break is in full swing, and I am very glad to report that I have “survived” another school year. BTW, surviving is only related to my health and by no means implies that I do not love my work because, I do love my work! Yes, there were many, many bumps in the road health-wise, but with tons of support from family, friends, and my colleagues and students, I have made it to a 4th summer break post-Lyme diagnosis! Woo hoo!

Just a few weeks ago, I finally found the time and the wherewithal  to submit an official complaint to the state medical board about the infectious disease doctor who saw me in January 2013. This doctor was completely terrible. I debated whether or not to file a complaint, I am not one to rock the boat, but after many in my Lyme support group continued to discuss the importance of bringing the issues with Lyme, the diagnosis, the care needed, to the state medical board, I decided that I needed to do so. Sending to him was the last resort of my GP who had been trying to treat me for 3 years of unexplained symptoms. While I am quite positive that my complaint will not even warrant an “investigation,” I am told that at the very least, it gets recorded, thus, it can be helpful in the long run for the continued fight for awareness of Lyme disease.

As advocates, we have to start somewhere. I debated about submitting a complaint. But, several of the members of the group are also very active in attending the state medical board meetings, in particular to communicate about Lyme disease and lack of diagnosis and treatment options during the open forum portion of the meetings. Right now, I am unable to attend for a variety of reasons, but I really do hope that some day soon, I can be a much more active participant in pushing for much more Lyme Disease Awareness in Texas.

Too many people are being lost to the monster that is Lyme.

Update: TMB reviewed my complaint and sent me a letter stating that my complaint did not “warrant an investigation” because the infectious disease doctor was following guidelines (looking for the bull’s eye rash – only found in 30-50% of patients). I did not have the rash. I just had new daily headaches, lower back pain, nausea, severe fatigue, joint pain, cognitive issues and severe neck pain. And, I had had these symptoms for over 3 years off and on and that is exactly why my GP sent me to and ID doctor. She was stumped and had tested me for as many other things as she could to rule out other diseases. The ID doctor told me to drink more water and carry my purse on the opposite side. THIS DOCTOR DID NOT HELP ME AT ALL. He sent me back to my GP. 

Less than 50% Lyme sufferers have a bull's eye rash
Source: http://www.lymestats.org

I guess I am a lucky one of the up to 50% that do not present with a rash that the Lyme infection was caught. Otherwise, where would I be? Way worse, and literally dying to find the correct diagnosis. 

Although I had already started this blog before I took the step to submit the complaint, I do feel like I have taken the first step in the right direction – the direction of real Advocacy.

Where is the CDC??
Source: http://www.lymestats.org

There are SO many of us not getting diagnosed correctly, SO many of us who end up with Chronic Lyme, SO many of us not receiving treatment. It is wrong, and it is time for me to SPEAK UP MUCH LOUDER!!

I want to send out a huge thank you to LymeStats for permission to use its AWESOME informative posters!! Visit the website today if you can!!

Do you do any advocacy work?  I would love to hear about it!  I hope you and your people are having a wonderful weekend. Please make sure to do tick checks. Be safe – Belle

Stop Making Plans

So here we are, a Thursday afternoon. Another day of rain. Another day of school closure. Yes, you are correct. We live in the Houston area. Our little own piece of paradise or the “mud pit” as my HB calls it is located outside of the metro area and just west enough to avoid the horrible and devastating flooding that has been happening.

With all of that in mind, my own small world is truly not of any concern nor should it be.

And yet, I will share. Yesterday, one of my friends, let’s refer to her as WF, texted and invited us to meet her and her husband for dinner. My HB was gone to get groceries and run errands so we instead decided this evening would work better. OK. Cool.

Except that, and I know this very well, often, because of my symptoms, we have to cancel plans. My friends know this as well. The day started with my stomach in turmoil. Headache. It rained for several hours this morning. Joy. I took anti-nausea meds and lay back down for a few hours. Back up about 2 p.m. I went outside with the dogs and got a bit of fresh air. Back inside to do laundry, mopping, and such well, you know, “mud pit.” I consumed a few crackers with almond butter. Then, the nausea returned. The bandage is to take the meds…and I have been doing this now for a few months. Instead, I drank some alka-selzer gold – no aspirin – which can help a bit.

Still no relief. The only way to describe what it is like to a non-lymie is it feels like the flu. Headache accompanied by a nauseated tummy with a possible side of indigestion. Lots of fun. A perfect situation to go out to eat at a restaurant. Yeah, not so much.

The conclusion? We had to cancel. My HB kept asking me if I just wanted to go and have drinks, if I wanted to go without him. I know he meant well, but feeling bad is feeling bad. In fact, he’s cooking up some vegetables right now and the smell is making me nauseated. Please don’t tell him.

Anyway, to make this long story longer, when I told my HB that I was feeling yucky and that I couldn’t make it, he said, “Really, you just shouldn’t make any plans. You always cancel.”  Wow. OK. Yes, there is a lot of truth in this statement. And honestly  recognizing that truth is what grabbed and twisted my heart. I could only reply, “You are right.”

Still. While I do know that breaking plans is disappointing not just for me but for everyone involved, I just shouldn’t do it at all? Then what? I can barely keep up socially at all with my friends and family. I miss more functions than I can attend, that’s for sure. But, I don’t know. Anyway, I’m back in bed now, trying desperately not to be bummed out about it all but it’s pretty much not working.

I short change everyone in my life. I realize that yes, I am sick, but disappointing so many other people surely has taken its toll on me as a person. I feel less than. Not all of the time but definitely right now. My friends were gracious as always about our cancellation. But for me? My heart still feels twisted up.

Be good and safe, my people. -B