Tag: challenges

Doggies, The Present

River Staycation

We decided to do an overnight trip to a major river about 3 hours from home this past week. My husband loves a particular spot, and the river is spring fed so it is nice and cold. Temperatures here are now are hitting 95-100 degrees with a heat index of 105+. It’s really hard to find fun things to do that do not require you to be outside between say 9 a.m. until 9 p.m.! Fer reals. I just can’t do the heat at all.

We also decided to take one of our several dogs, Newton, as he has made a trip to Colorado (17 hours in a car) and did very well. He is also very well tempered and loves to socialize. We weren’t sure how he would do in the hotel, but we figured worst case, we could make the trip home that night if needed.

Needless to say – he had a blast! He met all kinds of new people and other dogs. He swam a bunch. He had many adventures! Staying in the hotel went well. He barked just a few times but nothing major. He passed out and slept all through the night. We will definitely be doing this again!

As for me, I did pretty well, too! I’m pretty rested up from not working, and the river has great places that are shaded so I didn’t overheat. My fatigue has lessened over the past month or so and I was able to keep up. Overall, we had a wonderful time. It was great to be outside and to enjoy being active!

Hoping your summer days are joyful – b

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chronic illness, Coping, memories, The Present

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

Daily Grind

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

new normal, The Present

My Life is Fleeting One

Hello people, it’s been a long while. And as we all say, so much has happened and yet nothing at all has happened. First, maybe, is that indeed, I have made it to Thanksgiving break at work. This is a huge hurdle for me, and I am very grateful to have cleared it, circa 2015, with all limbs intact. There were about 3 weeks there in late September that I honestly thought I would not be able to make it, and I would have to take a medical leave; I was really worried that I was getting worse. Then, things turned around, albeit slowly. I’ve finally come to terms with the fact that living with a chronic disease, things can change on a dime and they do. Although I am not a fan of this at all, accepting this as a reality has been somewhat helpful along my journey into the unknown.

Seeing another doctor has also happened. We made a 3-4 hour trip from home to the new doctor’s office a few weeks ago. The visit was a long one in which I talked too much, my husband reported to me afterwards, and we left with a few bottles of tinctures. Personally, I like this doctor, the approach to treating Lyme through more integrated and functional medicine, the way the doctor listened and validated mine and my husband’s experiences over the past 2 and a half years of treatment. I have stopped the abx and switched over to the herbal drops. The goal is to get to 25 drops 2 times daily. Right now, I’m struggling with 5 drops 2 times a day. I can do 4 and make it alright. But the past couple of days when I tried to get to the level 5, by about 4 p.m. I am herxing big time. I also have detox drops for the herxing, and I have added those as needed, but wow, there is s distinct difference, at least for my body, between the 4 – 5 drops. We are working on it. 🙂

I hope everyone has a wonderful Thanksgiving! This break I’ve been able to do a few things I normally can’t / don’t do while working such as, and don’t laugh: grocery shopping, house cleaning, pie baking, dinner out, laundry – lots! While most of these things are not huge in any way, I have just not had the energy to do them much while working. And I actually did some simple Christmas decorating! It really has been pretty awesome getting to do these things without feeling so fatigued and overwhelmed. While several of these afternoons and evenings I have been in bed with nausea and headaches, I still feel like I’ve had some of the best days I’ve had in a very long time. I know I have pushed myself a little much, and I’ve eaten several slices of pie, pumpkin and apple, so my sugar intake is in the red, but it’s all been worth it! I feel like I have been partying it up, people!

Best wishes to you and to yours, -B

First Aid Kit

P.S. The above band is worth checking out. This song, “Fleeting One” is stuck in my head. Enjoy!

new normal

The Livin’ Ain’t Easy

Hello to all. Summertime is here, and Janis Joplin’s rendition of “Summertime” is playing in my head. The “livin’ is easy,” no? Alas, not so much. It’s been a challenging first 2 weeks of this break to say the least. Summer began last week, (and I am a teacher 🙂 ) and I had a few days that I sincerely enjoyed. I worked one day, but then by the next day, I had so much back pain I could not get out of bed without help. The pain was on my right side and severe. Not just like a pulled muscle but achy and sharp all at the same time. So, I rested. Logically, I figured my body was just finally relaxing. I just needed to rest. Yes, right, rest would help. Also, I was able to get an appointment the next day with my LLMD just in case.

But, the pain did not improve. By Friday, the pain was almost unbearable. But no fever. My husband had to drive me to my doctor appointment. I broke down in tears several times because of the pain; it was ridiculous. You may be asking, Why didn’t she go to the ER? Well, we know with any chronic illness one doesn’t get far at the ER.

After a urine analysis and some more tears, it was determined that there were no kidney stones and no kidney infection. Whew. But I did have a possible UTI. Doc prescribed different antibiotics from the ones I already take for treating Lyme and some mega pain meds. Thank God. She told me that we would treat for 3-5 days, and then I should be good to go or at least back to Lyme Normal.

But, here I am, a week later and still having lower back pain. Not as crazy or severe as last week, but boy howdy, it’s still there. Next up then is a lower back MRI with and without contrast. This isn’t scheduled for another week. Before my diagnosis with Lyme Disease, actually 2 full years before being diagnosed, I had a spinal and brain MRI. I was having hip pain on the right side and numbness in both feet (both decent symptoms pointing to possible Lyme disease). That MRI was inconclusive for MS so the neurologist sent me on my way. If only one of the  4 doctors I saw that summer had tested me for Lyme I could have started treatment 2 years earlier and 2 years less sick. I’m not trying to be whiney, it just makes me angry sometimes.

I spent yesterday and much of today in bed. I’m struggling to be productive, to be of value but I spent and will spend most of my time online here or FB. I need distracting, and I don’t have the concentration skills for reading of any length right now. Struggling to stay positive and pain free are the real challenges at this moment.

Am I worried about the MRI? Not really, and why waste time worrying? I am hoping of course that it gives us some insight into what is going on in my lower back. I’m sure that whatever it is that it is Lyme related somehow, and I am very grateful that I now have a doctor who can and will help me and that it isn’t a waste of time and a lot of money like the last one I had in 2011. Last time I definitely got conned in that I had no idea that the Imaging office was out of network even though my neurologist had sent me specifically to that place next to the hospital where he was located! Oy. Insurance companies, but that is for another post.

image

I’m trying my best not to be depressed. But thoughts and lists are piling up in my brain:  I’m not doing anything productive or fun. This is my summertime and the days are precious. I had to cancel a few appointments because of the pain issues. My husband has been working non-stop, and I haven’t seen him much. I haven’t been away from the house for a week, whine, whine, whine.

Anyway, thanks for listening and thank you all so much for reading. I do hope you and yours are having a good time and that you are able to enjoy the good stuff coming at you.
Gracias – B

Peace and joy to you all – B