It’s taken me a long time to write this post. I wanted to wait until a medical professional told me it was true, and even then it’s taken a while to put my head together enough to talk about it. In short: I have Lyme disease.
One of the very first blogs I started to follow 2 years ago when I was just a wee one in the blogosphere was A Opinionated Man by Jason. He continues to inspire and support the blogging community constantly. You need to go and check out his blog! It is great! Recently, he graciously allowed me to do a post about my ideas about home for his July Project H.
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.
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.
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
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.
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.
Happy Friday, my peoples. Soak up some LuAnn. She is known for bringing a smile to those she meets! -B
For the past 3 years, I have been chronically ill. I don’t like it. I don’t embrace it. I don’t want to “make the best of it.” Am I angry? Hell’s yes. Do I focus on the negative a little too much? Damn straight. Can I move past the negative to bathe in the positive? Not today, my friend, not today.
Many of the tools out there available for us to use as support for dealing with chronic illness (or anything else!) are based on positivity. And these tools are wonderful most of the time. But sometimes, I don’t want to be positive. I don’t want to learn positive mantras. I don’t want to hear how much I can “learn” from dealing with a chronic illness. I don’t want to be grateful for every single thing. Every single day. I don’t want to be “grateful” for contracting my illness because it’s brought me to a better understanding of myself. Tuck Fhat!
Now, I am not dismissing the power of positivity and the role it plays in our making the best of the cards we’ve been dealt. But sometimes, I am just plain old pissed off. Aren’t you? YES, all of the affirmative mantras help. Meditation helps. Quiet helps. But the frustration can build up, even when we are “dealing” appropriately with it day to day. Am I right? Do you feel anger sometimes?
Where does your frustration come from? Me, I get angry when I wait 4 months to see my doctor, and she spends 10 minutes with me. I get discouraged when I have symptoms that I thought were gone for good. I get exasperated when my memory fails me and my brain doesn’t work right. I get outraged by the lack of medical research and treatment options for Lyme. And I get enraged when Chronic Lyme disease is dismissed by the medical community and by the public at large.
Sometimes, it really does feel good to be MAD. To be infuriated. To be beside yourself and livid. Does it change anything? Not at all. But for me, it solidifies my strength, my willingness to do battle daily, my resolve to overcome.
Do you feel this way sometimes? Please tell me you do.
Later, my peoples. If you need to punch something, feel free. -B
Our trip to Colorado Springs in July of 2012. We went hiking in Garden of the Gods, and I took this photo with my little cell phone. While the quality is lacking, Pikes Peak is still as breathtaking now as the first day I laid eyes on it.