Okay, first of all, a very specific search appeared on my radar yesterday: “Indian sites for compression hose fetish.” Hats off to your freak flag flying proudly, whomever you are. Also, hats off to wanting your objects of desire not to have to suffer from varicose veins. I’m sorry that my mention is probably repeatedly bringing you back to my blog; I wish you luck.
Second, I got a diagnosis.
I’m going to start where I think I should, and that is May of 2009. I was living with the very controlling and very violent Drummer #2 in a beautiful 3 bedroom/2 bath on a man-made lake. My friend who is a CPA and has taken care of my taxes for 16 years as of this year flew down from Cincinnati. Drummer #2 was on the verge of nearly smashing my head with a drinking glass, but I didn’t know it. He made me feel like absolute dirt because my friend was visiting, so much that the friend had to stay at a hotel rather than in the spacious home we occupied.
My friend rented a car so that we could run around the state of Arizona, and most importantly to the Grand Canyon. We hiked down into part of the canyon; it was not easy for me because I had already had fibromyalgia since I reached adulthood, but I did my best to keep up. I was so happy that my friend had made it down to visit, even though the nastiness of Drummer #2 put a damper on things. Drummer #2 didn’t accompany us and that was absolutely fine with me. I wanted to be able to relax. My friend flew home and life went back to walking on eggshells to try to not make Drummer #2 angry – which proved impossible. The week after that trip was when everything went down with the asshole and I moved out in a hurry.
Fast forward to October of 2009: I went to the emergency room because I developed a stiff neck and excruciating pain. Every time I moved my neck I cried. I didn’t sleep for four days and was starting to hallucinate. The ER doctor had no explanation for me because I didn’t have any other symptoms like a sore throat or a fever. He sent me on my way with muscle relaxants. The pain didn’t abate for a full week.
Around the same time, the naturopath I was seeing started documenting new symptoms for me, mainly that I had a constant rocking feeling, and I was always nauseated. We tried different remedies including Dramamine, but nothing even made a dent.
Have you thought up a diagnosis yet? Just wait.
In July 2010, I developed crushing fatigue. I drove over to San Diego mid-month to spend time with a man from Germany who made yearly trips to Comic-Con, the big one. I struggled to walk a few blocks between my hotel and nearby restaurants. He was used to walking up to ten miles a day; I felt a bit ashamed because I felt as if I embodied the lazy American stereotype. I was also plagued by deep bouts of vertigo to the point where I nearly fell down an entire outdoor cement staircase.
During the last week of the semester at school in July, I had to drop out and not take any finals. Fatigue and vertigo ruled my life. My parents were concerned because I spoke like a zombie, no intonation – very unusual considering I was a theater major in school. My speech was slurred, the top portion of my face became paralyzed, and my head began to nod uncontrollably. Because my body was under so much stress, my cortisol levels shot up to ten times the normal amount.
Have you guessed it yet?
In July of 2011, I finally started getting relief from the pressure in my head because a neurosurgeon installed a shunt. However, I had a total of 10 shunt surgeries in 46 months because my body fights them, clogs them, breaks them, strangles them. I have had horrible abdominal pain since July 11, 2011, because that is the first day a drainage catheter began living within my peritoneum and my small and large intestine, and there is a war being waged 24/7.
46 doctors and two states later, a naturopath in Saint Paul suggested I get some blood tests for Lyme disease. I ended up having to pay full price for them up front because they were not covered by insurance/medical assistance. I will admit that I didn’t think I had Lyme but I just wanted to rule it out like I had done with everything else up to that point. Two of the tests had inconclusive results; the third one lit up like a motherfucking Christmas tree.
I have late stage aka chronic Lyme, and have had it for nearly seven years. It wasn’t on anyone’s radar. Why should it be? I didn’t have a bull’s eye rash. I lived in Arizona, a state with a very small tick population compared to other states. The CDC has very strict guidelines about what can be reported for Lyme and I may not fit their parameters; however, I am still going to contact the state health board and let them know I was infected while I was a resident in the state. I think that only 8 cases have been reported to the CDC for Arizona. I don’t even know if they will take my data because I was diagnosed based on antibodies specific to bacterial exposure, and they only want tests showing the bacteria, which may not be detectable because of the time that has passed.
I know that most of the doctor visits and labs are not covered by insurance, so I will truly be destitute in short order. They are not covered because insurance companies and even the government get bucky about late stage/chronic Lyme, sometimes refusing to acknowledge it exists. There are now temporary laws in place in Minnesota that allow physicians to prescribe antibiotics far longer than they have before, for years instead of months, and the law is set to expire in 2019. I feel like my diagnosis is sitting on the cusp of being dismissed and being accepted. I don’t know how they will deny that my facial paralysis ties into the positive results on the blood work, but I’m sure they’ll find a way to tell me I just need counseling. It wouldn’t be the first time I heard that.
I don’t know what will be irreversible with the neurological problems when treatment starts. I think the facial palsy and ptosis may go away. I think the tremors will take years to adios if they stop at all. The left side of my body has lost some sensation. For example, when I am descending stairs, I have no concept of the pressure my foot exerts on the steps (and vice versa) and so must go very slow. I have been doing exercises to counteract the bed rest and try to gain some of the muscle I have lost, but I always feel like my nerves are disconnected on my left side, and I tire much more easily when I work on that side. I’m also having some cognitive difficulty including word recall. As I type, I fight to spell words correctly – I have developed some weird form of dyslexia. If you knew how particular I am about spelling, you would be as alarmed as I am. Sometimes it takes me a dozen tries to write single words correctly that would have been a breeze previously. Ultimately there is a 50/50 chance that treatment will work, and it may take years to get any positive results.
Besides notifying the board of health in Arizona and Minnesota, I have decided to write letters to my team of doctors in Arizona to let them know about the diagnosis. I am not trying not to think in terms of, “Oh, if only someone would have tested for Lyme, I wouldn’t have had to have 10 brain surgeries.” Honestly, the disease has really fucked up my body, and it’s possible I would have needed the surgeries even with the right diagnosis.
If my symptoms do abate, I’m going to have a serious conversation with some neurosurgeons about removing the current shunt. It has adhered to my chest and the abdominal pain is still constant, and I just think I would have an easier time without it. However, that also leaves me more vulnerable to CSF leaks – and I don’t ever, ever want that pain again.
Lastly, I don’t know if this is a “rare” disease. The data is poor. On a survey of health, chronic Lyme rated the worst for quality of life as outlined in this article – worse even than congestive heart failure, multiple sclerosis, fibromyalgia, diabetes and depression. In other words, I truly won the shit cookie.
11 thoughts on “What I Know, What I Don’t Know”
Wow, it’s incredible how much we still don’t know, despite all our “advancements” in medicine. *sigh* At least you know now. Keep on keeping on, friend!
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Thank you! Yes, it’s crazy to me that there are so many companies and agencies that deny Lyme exists in its entirety. Onward, ho! (BTW, I’m the “ho” in that statement. 🙂 )
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oh fuck…not fucking lyme. Damn girl, im sorry to hear its that, but also kind of glad in a way that you FINALLY know what the fuck is going on. I have seen ALOT in the media lately about Lyme as quite a lot of celebrities have it…Yolanda Foster off Housewives of Beverly Hills, posts a lot on her instagram about her struggle with it, and i think a few of her kids have been infected by it too, Avril Lavigne has it, one of the Olsen twins..its definately getting some attention which could be positive for sufferers hopefully. I hope you are in that 50% that responds to treatment xoxox
Thank you. I’m still having a hard time with the diagnosis. When I was living in AZ, everyone was like, “WTF is wrong with you?” When I’m here in MN, where even two of my uncles now have chronic Lyme, the reaction is more like, “Well, duh, of course you have it.” I hope that since even famous people are stepping forward that the CDC will revamp their testing and diagnosing guidelines. Oh, and “The Punk Singer” – Jesus, I never anticipated being in the same boat as Kathleen Hanna. I feel like I should write her a love letter.
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Getting a diagnosis is like a double edged sword sometimes. I really hope you can get the right treatment and respect you deserve. How are your uncles??? Hang in there mate..omg i was thinking about the punk singer when i read you had lyme..you should write to her!!! Xo
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I already hit her up on Twitter and sent her a link to this piece! 🙂 The Punk Singer 4-Ever!!! One uncle seems to be coping pretty well and the other seems to be doing not so well. I haven’t seen them in person for years, only heard through my mom or aunts for the most part. I did help my uncle with some phone calls and research when he had a recurrence of symptoms in July. I sent him an email with the news. Thanks for all of your good juju, blog sister. ❤
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Omg awesome, i hope she replies!!!!!!!! That would be like super exciting !!!! Thats good one of your uncles is doing well…lets hope you follow that road and not the other. The body has an amazing ability to heal itself..given the right circumstances of course…your poor body, fuck its been through the ringer mate. Hang in there buddy, youre awesome xoxoxoxox
wishing you well. it’s good that you know what you have, and are actively taking steps to get better.
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How you stay so hilarious is the real mystery here. Glad you found some answers. Once we get things settled down over here I’m going to do some pieces on geriatric care in America. They won’t be funny though.
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It is pretty difficult to find humor in how we treat the elderly here. I mean, I could tell you some funny stories starring my 103-year-old grandpa, but nothing funny about his care. Oh, and the few times my dad’s mom “broke out” of the nursing home with her friend, and they bellied up to a bar and paid for their beers with pennies they won playing poker at the nursing home? Funny. Death from neglect or willfully ignoring medical directives? Not funny.