I have a note about 25 random things about me.. which was written in 2009.
I just read it tonight and thought – wow some things have changed. Well not changed, but it is amazing how when you get very sick (for a long, long time) your priorities shift. The little things that I longed for – such as a Dyson vacuum cleaner – of course, I would love to have that.. but, now I just long for good health. Or a revised IDSA guideline for lyme disease!
I don’t need “things”. I am a clean freak however so a Dyson is not completely a wasted thought. But you know what I mean? My lyme friends will understand (and those who have been chronically ill with any horrible illness) I probably would be happier receiving a bottle of VSL#3 probiotics rather than a Dyson today.
Being sick for over a year (I know this is like nothing for many lymies!!) is exhausting but I know I am progressing. I am probably one of the few that had a CDC positive blood test after 4 tries. It was the luck of the draw – that day the lab took my blood, the damn spirochetes happening to be partying in the bloodstream as well. Some of their friends might have been in the tissue or brain too, but that doesn’t matter. As long as they are in the blood and the antibodies were there, it would show up on the protein bands.
Well, that led me to find a Lyme Literate MD thanks to my friend Heather Askeland, who helped me with various lyme websites. If it weren’t for her, I would probably be stuck with some Infectious Disease doctor at MGH or something.. because I would not have known better. She is my angel and she also needs the health gods to heal her lyme and co. Also Annie Giddings (who Heather referred me to) was extremely helpful with answering my frantic questions about who to see in MA! But I have to hug Marlena Chow for putting me in touch with Heather via Facebook when I was freaking out about my positive lyme test and posted on my wall needing a qualified doctor because she was friends with her on FB and the three of us went to the same college but I wasn’t “friends” with Heather on FB at that point. Maybe I need to thank Facebook?? lol.
I hadn’t watched the movie “Under Our Skin” when I was diagnosed so I was clueless of the battle I was about to fight but maybe that was a good thing (at that time) to just be more blind to all the knowledge I was about to gain because it is just too overwhelming! But the online lyme support groups have really helped me get through this first year of treatment. Sometimes you have to vent and they are there to listen to you. NOBODY REALLY understands what you are going through unless YOU have suffered lyme as well. And if you look at my pictures, I look just fine. Perfectly “normal”. What does a sick person look like anyway? Unless they are in a wheelchair or with an oxygen tank, do you think they are less sick? I know many lyme sufferers on Facebook who look perfectly “fine” but I know inside they are experiencing migranes (not just for a day or two, more like weeks), neuropathy, brain fog, stabbing pain, heart pain, air hunger, dizziness, weakness, word confusion, MAJOR FATIGUE, joint pain everywhere, nausea, the list goes on. Yes, so it’s very deceiving, yes we know, we are trying to trick you to thinking we are so healthy, but just don’t say, oh but you don’t look sick. Because nothing can be worse than saying you don’t look sick when you feel like death. Ok? Luckily I have not had that kind of comment too often. But I know that happens probably everyday to someone who is very sick and that is just not acceptable.
Never take your health and immune system for granted! Also, never just trust your mainstream doctor. Why do they not do much preventative care? Sometimes you will have an underlying problem but not enough to have persistent symptoms to go to the doctor. Or you will get sick SOOO badly with sinus infections for weeks, bronchitis for weeks, then pneumonia but then it will pass. Or get an ovarian cyst that ruptures and you think you died 100 x over.. but then it passes. Or you get endometriosis then laparoscopy surgery to remove the cysts and then put up with ongoing pain. Yeah, all those things happened to me but I just shoved it off because nobody can connect the dots, especially when one invovles the reproductive system vs the ear nose throat dept, vs chest. It’s too complicated for one doctor to put them all together. It can just be an isolated situation, they will say. Why is my immune system so crappy? I don’t know, just take more Sudafed, they say.
Ok.. until one day BOOM your eye feels like it is being stabbed multiple times, but only the left eye! But for everyday in the morning! So you go to an eye doctor, who says it is just dry eyes. So she puts you on Restasis. Woah, did you know that is a cyclosporin? An immuno-suppressant which is so not want you want for lyme. Also contains mold, I think. Anyway I took that dutifully everyday 2 x a day for months.. then BOOM, one day your knees and ankles are totally swollen as if you are 9 months pregnant (well I don’t know what that is like, exactly, I am just guessing that happens around 9 months). Then a week later you can’t move your joints, your neck is so stiff you can’t turn your head. Then your arm goes numb. Then you get dizzy then you keep falling to the left then you start calling the stove something else. Anyway, it is just a whirwind of new symptoms. So when did this all start? Did it start when you got mono in college? or when you had tonsillectory surgery right after college? What really triggers the human body’s immune to just fall apart? A stupid tick bite that happened who knows when? It is aggravating, and I will never know when I contracted lyme disease. All I know is that I do have band #23 positive which is lyme specific. And detoxing toxins is not something my body does easily. Thanks to the dreaded genotype. Yes, I might have to move out of my home if we find high levels of mold because that is holding me back from gaining my health back. We shall see.
Before I was diagnosed with chronic lyme disease, I was living carefree.. living life like anybody should. Going to work, going to the gym, going out to dinners with friends, nights out drinking sometimes, going on vacation.. blah blah blah. As much as that life was fine, and I was being a nice person, etc.. I think it was an empty life. I was sheltered from reality of the sadness many people encounter. Maybe none of my friends had issues – maybe we were all living in a bubble. Or I was just so out of touch with reality, and shame on me! Now most of my friends have moved on and are having babies. I am slightly jealous because I “can’t” have babies now – they would transmit lyme too easily – I could just take amoxicillin to prevent, but the lyme is too active still (per my LLMD). But I have focus my energy on healing. It would not be fair to a newborn child so I choose not to do that right now.
But I don’t think I can ever go back to just living life going through the motions without really thinking just about myself. What is the purpose of your life, just earning an income and feeding your family. That is fine and completely acceptable. But for me, I want to do MORE in my life. Since my day job is not exactly life changing (like performing music was my dream but slashed due to tonsillectomy not agreeing with playing the clarinet), I have to do something more!
Now that I have gone through this horrific nightmare, it is kind of a twisted blessing in that it has opened my eyes from direct experience, that I need to spread awareness of the horrible situation involving the CDC and Infectious Disease Society of America, in how they are literally ruining millions of people’s lives. It makes me sick to know there are so many people dying from this illness of chronic lyme disease, which is often complicated with co-infections such as Bartonella, Babesia, Ehrlichia, RMSF, etc etc. It make me sick to know people have been misdiagnosed for decades with Chronic Fatigue Syndrom, RA, MS, ALS, Lupus, and more.. and those diagnoses don’t have a cure and the medications for those diseases often would actually harm a lyme disease patient. It makes me sick that due to these misdiagnoses, thousands and thousands have DIED. Some have died even with the lyme diagnosis too. Of course, who does an autopsy, but I guarantee if you did a test, you would find Borrellia Burgdorferi bacteria in their brain. Anyway, I am ranting. I have to help and become a voice for those who need to be heard. I have to get healthy too, but I am not disabled, bedridden, so I have to help them out.
If you read this, know that someone you know probably has lyme disease (because it is everywhere, not just the East Coast!!) and is either misdiagnosed or on this marathon hunt for a diagnosis, hopping from doctor to doctor, wasting precious time to treat this disease. Tick tick tick.. time is truly of essence.. Never underestimate the damage of a little tick bite that is often missed because there is no rash, no visible tick because they are so tiny and sometimes in the scalp. Know that the current blood tests through mainstream doctors ordered through Quest is highly unreliable, especially the ELISA test. IgeneX labs is the only reliable one in Palo Alto, CA but you need an open-minded doctor who will be willing to authorize this test. You need to find a lyme literate MD to treat effectively – and they are hard to see right away due to their overwhelming patient intake. Why? Because there are too few of them and too many patients – this is an epidemic! Yet the IDSA can’t even discuss lyme disease on their agenda during their Annual meeting. They would rather talk about swine flu or bed bugs. Meanwhile people’s quality of lives are diminishing day by day.
I still want to be able to go running and hang out with friends and have a drink, of course. I will do that someday sooner than later. I don’t want to say my life can never go back to how it was because of lyme disease. But it certainly has changed my priorities and perspective. Even when I am 100% (and you know I will be 10% – it is just not an option to think otherwise!!), I have a purpose in life now to help others with something that has directly impacted me. If I can help one person find a way through this disease, it will make me happy. And I would like to somehow raise funds for more lyme disease research.
There is no easy cure for chronic lyme disease. It takes patience and LOTS of money, which who has that? But it also takes persistence from the patient to be their own advocate. Question the doctor (even a LLMD) if they are not listening to your needs and truly getting you better. As sick as you may be, you have to still do your own research and document symptoms so that your doctor can better treat you. It takes so much work and organization, which is really tough when you have neurological issues from lyme. But most importantly, it takes a positive attitude to get you through each tough day. Laughter is a great distraction!