July 22,2013 -Two weeks into treatment.
The dust is beginning to settle over here in AZ. We have established a working routine that accommodates for two enemas, one freshly squeezed vegetable juice, two apple/carrot juices, and one orange juice, all organic. I have also figured out how to gag down all 55 supplements in the AM without throwing up in my organic oatmeal with a maximum of two teaspoons of organic honey. Throw in a shot of greens supplement that tastes like drinking dirty grass. And a protein shake (twice a day) that Stephanie says tastes like a “poop sandwich.”
Lunch and dinner consist of “Hippocrates Soup” which is more organic veggies and potatoes soaked and mushed in water so that it is easy on my digestive system. Occasionally I have had a Chipotle taco, but mostly salad has become my new best friend. Monday-Friday I’m at the clinic getting treatments from my “tree of life” IV pole. I anticipated having time to catch up on reading and blogging but the reality has been that I’m struggling throughout the day to not vomit in my lunch box.
I’m still in my wheelchair but I was able to walk around for an hour or so this weekend. I go about as fast as a turtle but it has been interesting to be around all of the other Lyme’s patients at the clinic. They have the same mannerisms as I do. We can been fine one minute, and then as we are sitting there, you can watch them go downhill and begin to lose their train of thought, not be able to hold up the weight of their own head, and ultimately end up having tremors, or curling into a ball in utter fatigue. And then within minutes they can recover and be back in the conversation.
It has been interesting to watch people’s hands curl (like someone with Parkinson’s) just like mine does and watch people feeling poor shuffle their feet on a bad day and then be able to walk more normally on a good day??? I am in far less pain than I have been in for as long as I can remember. I’m also sleeping for the first time in 6 or 7 years, it feels amazing. I’m still too weak to do almost anything for myself, but for the next few weeks I don’t have to!
I just recently got my internet set up and received my computer in the mail. Began feeling comfortable with the daily regiment, wrote everything down in a three ring binder so that the recipes and how-two’s could get passed along from one caregiver to the next. And then I woke up last Thursday and I was still in AZ. And I began to wonder how I ended up here?
Until a few weeks ago I was still trying to convince my Doctor’s that something besides fibromyalgia was going on, which was comical because I was in a wheelchair and having convulsions. But everyone here has years of misdiagnosis. Unfortunately, you can’t diagnosis or test for things that you aren’t looking for. I believe that this practice will change, it must. There is a horrid wave of Lyme’s disease and Post Lyme’s Disease Lyme’s is rolling over the US as we speak.
According to the CDC… “Lyme disease is the most commonly reported vectorborne illness in the United States–in 2011″, it was the 6th most common Nationally Notifiable disease.
When treated promptly and accurately it can often be treated effectively. However, every patient at this clinic has seen 10-70 Doctor’s all over the country. At the mention of Lyme’s, people are told it doesn’t exist, it couldn’t cause these issues, they have anxiety, and are refused treatment or escorted out the door, no joking. As with AIDS in the early 80’s it presents with various and complicated symptoms that are easily masked by other disorders.
Historically, there is always resistance on the cusp of a breakthrough. Sadly the price is being paid by the very people who are struggling to live. Families who are not only dealing with a chronically ill member, but are also having to fight for care available only in a few states. Physicians who take the risk and treat patients with longer term antibiotics (as seen on Under our Skin) risk losing their medical licenses.
Several patients at the clinic have lost their Doctor’s because of fines associated with treating Lyme’s patients. Supposedly the Mayo clinic in AZ just started diagnosing “Chronic-Lyme’s Disease” which is a big step in acknowledging what patients have been saying for years. You all can form your own opinions on the matter. Let’s just say I would much prefer to have been diagnosed with something that wasn’t involved in a political controversy, but for whatever reason here I am.
My own experiences with telling Doctor’s I had a bull’s eye rash that had never been treated, we were waiting for test results, laid out meticulous records showing 260 of the 280 symptoms associated with late stage Lyme’s, had video of my convulsions, and was then told that Lyme’s doesn’t exist in NM, therefore it couldn’t be Lyme’s. Many times I had wished it was cancer, because the people I knew who had cancer, went through treatment, recovered after a few months and were leading far better lives than I was.
Meanwhile I was losing my ability to walk, had been denied disability, and still had no clue what was going on. Cancer seemed like a much better option, sure some people pass away, but either way I was better off than trying to live life with one foot in the grave. I’m not exaggerating, it has really been that bad over the last 2 years, plus I had 5 fairly miserable years before that. As I began to lose cognitive function this spring, I knew I didn’t have much time left to figure it out.
I’m so thankful for my friend Emily introducing me to the Dr. who figured it out and started the ball rolling. I was also blessed my medical professionals in my life who encouraged me to advocate for myself and learn how to fire Doctors who were not interested in being on “my team.” It was at that point that I was slapped in the face with the harsh reality of the Lyme’s controversy in the medical community.
I was deep in conversation with the spouse of a patient at the clinic when I asked him how it had affected their family. “Well the same way it affects any family with a chronic-illness, it takes it’s toll.” I’m not sure what else he said because it was the first time it had dawned on me that “we” were one of those families. I had dealt with my chronic pain and fatigue for years; managed my care, and tried desperately to maintain as much of a normal life as possible for my kiddos.
But as his words sank in it just clicked that I’m not normal, having to rest endlessly with my feet up so that the pain subsides isn’t normal. Having to attend 2 or 3 appointments a week isn’t normal. Never sleeping, isn’t normal. Living with unrelenting pain year after year isn’t normal. I knew something was wrong, that is why 6 years ago after yet another disappointing appointment and I wanted to quit seeing ALL Dr.s. I made a choice to continue going in every 3 months and having them draw my blood in the desperate hopes that something would turn up.
But my life now has a new chapter. You know, those markers in your life where things change and a new chapter in your life begins to unfold on the pages in front of you. And my chapter is being written in AZ, far from my sweet kids, my sweet husband and my new single story house. Even though my Lyme’s story has been unfolding over the last 17 years, this seems to have happened really fast?
I think I’ve done pretty well, trying to keep up with my kids in spite of what is going on my entire adult life. It is nice to know I’m not just fragile, but that there has been something very wrong during my pregnancies, adoption and both auto accidents. But I’m also sure that there will be a grieving process associated with the new found insight that “I’m one of those sick people.”
Lyme’s is forever, you learn to manage the symptoms but it will always be a part of my life and our family. I absolutely believe that God causes all things to work together for good of those who are called according to his purposes. It doesn’t mean that those things are fun, or pain free or that I will not fight every single day to put this entire thing behind me. But it does give me a hope that many people don’t have. I know God will use this atrocious experience, my suffering, the financial loss, and my many tears to help someone, somewhere.
And for that I can give thanks. People have said that since we adopted kids that we didn’t deserve for this to happen. Well that isn’t reality, good things happen to bad people and bad things happen to good people. No amount of good works will get anyone into heaven, nor will it shield you from the realities of bacterial infections, robberies, bankruptcies, or job losses. Adoption is a noble venture, but my hope comes only from my trust in Jesus and his death upon the cross to cover my sins, nothing else.
These days I still feel like the “Walking Dead” but at least I’m not having tremors anymore. And for the first time in years my treatments are actually targeting the problem instead of just treating the symptoms, and for that I will take the nausea. Aaron is bringing the kids over here soon and I can’t wait to see them. Please send me some fun mail. I need “happy” things to look at…
~Sarah