I have been ill for six years, disabled for two, and have only now finally received a diagnosis. The path to that diagnosis has been a constant battle with the health care system in the US, its reluctance to treat those who don’t have financial resources to bleed, and its reluctance to acknowledge that my illness is real and debilitating. No other country in the Western world would have forced me to go through all this hell. In no other Western country would I have had to research my own illness, research to find a doctor competent to diagnose and treat that illness, and then pay out of pocket to see that doctor and receive the medical care I so desperately need.
I have advanced lyme disease. As a result of that illness I have fatigue and malaise, anxiety, depression, constipation, sleep disturbance, night sweats, joint pain, generalized pain, neuropathy, sensory disorder, polydipsia, polyuria, muscle spasm, memory disturbance, visual disturbance, cognitive problems, adrenial insufficience, paraestherias, dysautonomia, itching, and flushing. While the progression of the disease was rather slow the first four years, two years ago the increase in symptoms became like a slippery slope, and the past nine months have seemed like a head-over-heels tumble, with a whole new set of symptoms popping up every month or two and adding to my misery and further reducing my ability to function in any way, shape, or form.
If you are interested in reading about lyme disease, the signs and symptoms, stages and treatment, I recommend starting with ILADS ( http://www.ilads.org/ ). I grew up in an area with lyme disease, was warned that it was “bad” (seriously, I was never told more than that), and was told specifically that if I got a tick bite, I should watch for the “bulls-eye rash”. I was shown photos and told the rash would be pale white with a bright red ring, and swelling was never mentioned. After hiking at Lake Bariessa in 2007, I had a swollen bite come up on my leg, bright pink, with a red ring. I never saw a tick, and am prone to swollen allergic reactions to bug bites, so the thought of lyme never entered my mind. I only remember it because it stayed for about 3-4 weeks before finally going away. I didn’t have health insurance at the time, but even if I had, I must admit I probably would not have seen the doctor for a swollen bug bite.
There is only one real treatment for advanced lyme, and that is intravenous antibiotics for as many months as it takes to kill the infection. There are a couple reasons for the IV antibiotics. The bacteria mostly sits in parts of the body with very poor circulation, like that hip that’s been bugging me for five years, and the nervous system, so oral antibiotics are unlikely to reach the actual infection in appreciable quantities. It also cysts up in a very similar manner to tuberculosis, so you have to keep the body inundated until they’re all dead. Once the disease has progressed to the point I have it, oral antibiotics will completely destroy the digestive system long before the lyme is dead. That means once I start treatment, I can expect to be on intravenous antibiotics continually for 6-18 months, at a monthly out-of-pocket expense of $2500-$3500. That officially makes paying for the treatment the most difficult part of the entire process. I’m not in the least bit concerned about the negative effects of the antibiotic treatment itself, as they are all minor compared to the realities of living with my illness unchecked.
Before I can start the IV antibiotic treatment, I need to make sure the money will be there for as long as I need to be on the antibiotics, and I need to get my digestive system functioning again. This is no small feat, as my digestive system is a complete and total wreck. I also need to reduce as much strain as possible on my adrenal gland, which is having a very hard time coping with the illness. I’m not on any prescription medicines, but I am starting on about a dozen different over the counter medications and pharmaceutical-grade supplements. Over the next couple weeks I will be adding them one at a time until I am taking all of them every day, and hopefully the result will be some regularity to my bowels in the relatively near future. The expected monthly cost of the supplements and medications, doctor visits, blood tests, and travel expenses is about $1000.
I’m also starting on a special amylose free diet to help with the gut and my adrenal gland. Basically, I must avoid cow dairy (although goat and sheep is fine – yay!), gluten, sugars, soy products, and processed foods as much as possible. I also need to try and eat small meals and snack frequently to help moderate my sugar levels. It’s basically like being both diabetic and gluten intolerant at the same time, with some dairy restrictions thrown in for spice. That might sound awful, but if you think about it in a positive way, it’s also very similar to the “Caveman Diet”, and is also extremely similar to the kinds of food Diana and I eat anyway when she is sticking to her weight loss diet. I just have to avoid a couple of things she doesn’t, and I don’t have to worry about fat intake beyond my own desire to not balloon in weight from lack of activity. As it is, I’ve put on about ten pounds in the past two months and very few of my clothes are fitting.
I need to take some blood tests in the next month, but the next big step I will be taking is related to the fatigue and malaise diagnosis. I will be going to the Workwell Foundation in Ripon, CA, where I can be objectively, quantitatively tested for Chronic Fatigue Syndrome. This should provide the undeniable proof that I am disabled and unable to work, and I can begin the process of getting on disability so I have some sort of income coming in. As an added bonus it means I will be visiting Cali, so hopefully I’ll be able to see some of my friends in the Sacramento area.
As a result of my illness I am shutting down for business. I kept trying for as long as I could manage it, but I am tired of disappointing my customers and myself. I just can’t do it, no matter how hard I try, and it’s just adding to my stress. Last year I only managed to make one corset and one vest. That’s it. And it wasn’t for lack of desire. As for my artwork, on top of the exhaustion I now have mild seizures and tremors every day, which is in no way helpful for the precise kind of art I like doing. From a business standpoint, most months I don’t make money, so there’s not enough income to warrant the stress.
I do have a few open projects which are partially or completely paid for, so I will be talking to those customers directly about how I will be proceeding. It may take me a while longer, but I do want to finish them. There are also a couple prospective projects I had been discussing with people, which will probably not happen.
On the bright side, if I don’t have the looming stress of customer orders I’m not getting to, I am hopeful that when I have the energy and inclination I’ll be better able to work on personal projects and tutorials. I miss writing tutorials, and I have a lot of material just waiting to be written up. I also have a lot of art projects bouncing around in my head waiting for the opportunity to be made real. I was in business because I love sewing and art and wanted to be able to do them all the time, so I’m not going to stop just because I’m not able to do what is required for a functioning business.
It’s going to be difficult, it’s going to take a long time, and it’s going to be expensive, but I am tremendously relieved to have a diagnosis and a plan of action. It’s very likely that some of the symptoms will never go away, that the damage caused by my illness is permanent, but I can live with that. I want to stop the tumble down the slope, and reclaim as much of my life as possible.
If you have any questions, I will do my best to answer them. I’m not concerned about medical privacy, so you may get more information than you actually wanted. You have been warned. ;)