I'm starting this thread because it can be difficult to get a diagnosis, and treatment can be complicated. Many believe that Lyme goes away within 6-8 weeks of treatment, and if not, then you're mentally ill. I'm going to collect my own writings over the years and share some here, and also post articles, useful information and new thoughts and experiences as they come. Feel free to ask questions or share your own.
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This is an old post from 2014, where I attempted to explain how my experience with Lyme ties into my views on government and politics.
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I do think that people tend to take liberties for granted in the USA. Our version of poverty is much better off and has more opportunity than the poor in other nations.. etc.
That being said - it is getting harder and harder to move up. Health care issues are serious - my medicines, even with insurance, cost more than I could possibly make while being sick. To use myself as an example here - the government decided it doesn't believe that my illness is chronic. Any doctor who treats Chronic Lyme can and will be sued by insurance companies for "overtreating" even though the patients report getting better. They lose their license sometimes. Obamacare won't help because the illness isn't validated, so it won't be covered. The doctors then must charge absurd fees, because they need to hire a team of lawyers to protect them from being sued for treating an illness properly. I have to see these doctors, or I will die. I need to take copious amounts of medication to survive, despite being extremely health conscious, diet conscious, diligent etc. So I have to be able to afford their fees, and they have to be able to afford lawyer fees.. and the fees just add up, ad nauseum. And the government spends its money trying to prove this doesn't exist, instead of researching it and helping the problem.
Prior to illness I was a straight A student and professional singer aiming for Broadway at age 16, already working professionally and recording original songs in NYC. The illness stripped my voice and left me speaking in a whisper. For a couple years I could not walk easily, and for a few months I couldn't move at all - 105 fevers, couldn't swallow or make a fist or turn over in bed, didn't know my name. I would deteriorate to this state quickly if I were not taking very expensive medications.
Even on medications, I cannot work 9-5 hours. I have tremendous difficulty with sleep. I could do great work at home - as proven in college, when I went to a top school and continued getting straight As despite having to have nurses give me IV treatments in my dorm room every day, and other great inconveniences and difficulties. I was allowed to extend deadlines on tests, but never did, no matter how sick or how terrible my relapse, because I knew I would not get breaks in the real world and I wanted to keep up with the others in my class regardless.
So you see - its not that I'm lazy or lack spirit. There is more than enough proof of this. I produced and recorded my own album in my late 20s, singing through my whisper. I organized and ran a band and an apartment where I had rooms built. My apartment was a sanctuary for others who were desperate or abused, at times. I was known as a leader among many people, and I chased my dreams full force, until I got sick again. Then I had to retreat and live near my parents again. But even then, I could not hold a 9-5. I tried twice and got fired both times because waking up at teh same time every day is impossible in my condition, with my sleep issues. I would end up with fevers, and unable to concentrate. So I have to have an adaptive schedule. I worked freelance to pay my bills, as an artist, which is great but it's very hard to make contacts and maintain them with no voice, and having to meet people in quiet places in a city makes it difficult. Beyond that nobody will hire me with no voice. I waitressed at one place, and the customers didn't like me because they thought I was sick and it would be contagious and get on their food. That place was dingy and the only one which would hire me, and men tried to grab me all the time and the management did nothing so I had to quit. No other place with class will hire someone with no voice. So I am stuck making my own business, but sometimes being unable to run it due to high fevers, confusion, joint pain, severe insomnia, and other types of relapse.
Clearly I'm not subjected to "minimum wage" since I can't even work 9-5. I cannot get disability, because the government doesn't believe my illness exists. I cannot get welfare aid because my parents (who are well past retirement age and still working their asses off for this reason despite illnesses of their own) are struggling to help me out. I am basically strapped, if they are unable to do this, and that time approaches faster and faster.
In the meantime, minimum wage would not make a dent in my expenses. My whole family agrees that my time is better spent writing my book and songs, and hoping for a breakthrough. It's not impossible - I've had top writing agencies interested in me, etc, so this is not some far-fetched pipe dream, but it is still difficult. I'm plugging along. And of course I write for passion too - I wrote my first 400 page book around age 12. So this is a passion, but with illness it's not so easy to always be awake and alert enough to do a good job. My medical routine is complex and long every day, my diet is specific. My lifestyle has little time to get anything done and also survive. But I try. I'm creative, great student, hard working and ambitious, but strapped by illness and the system.
The sad truth is, my parents are paying tremendously high taxes to take care of the poor & illnesses of others... but my own isnt recognized. That's not fair, either. If they could keep a higher percentage of their money, they could work less and cover my illness with more ease. This is wearing them down. Forcing them to pay sky-high taxes and not allowing them access to what they need for their own family, is punishing two hard-working people who have made a very honest living helping others... punishing their own offspring for an illness that isn't their fault.. and rewarding people who aren't working. Some people are genuinely strapped, but some sit on their ass and pop out kid after kid. Not all people on welfare are like this, of course, but let's be realistic, there are a lot of people who take advantage of the system and use the money to buy drugs! We don't even drug test people on welfare? Sick. This destroys incentive. The harder you work, the more money you make; the more gets taken away and redistributed. And it destroys incentive to start at the bottom and work your way up, because you make more money and have more time to yourself if you simply go on welfare.
Let's suppose I didn't have parents. I would be stuck with whatever welfare or disability could cover - which wouldn't include the medicines I actually need, since the government doesn't believe in it. So is it really a good idea to have the government dictating who is and isn't sick instead of doctors? Seven times more people die from Lyme every year in the USA than AIDS, and twice as many are diagnosed with Lyme every year than breast cancer. If the government would invest some money into research and allow people to get the treatment they need early, most of these people would not NEED long-term medication and could return to the work force. Those who need sustained medications - if they're not blocked by bullshit like their doctors being sued and thus charging unaffordable fees - would still have a better chance of being functional.
I am an example of this. I was treated with the wrong medications and told I did not have Lyme. I was told I was crazy for even suggesting it, and accused of inventing my symptoms, wanting to be sick to get attention. My mother was accused of being a crazy overbearing stage mom and simultaneously wanting her daughter to be sick. Both me and my mother were tested for sanity (she is a mental health professional, so this is especially strange). We were both sane, based on any and all data, but all doctors we consulted continued insisting that Lyme was impossible. It was important to rule out Lyme because the doctors wanted to give me steroids for my early symptoms. Steroids brings out Lyme in spades and once you take them, you are unlikely to ever get better. Within two weeks I couldn't walk or move and had 104 fevers and severe arthritis, and I was told I was imagining it and faking it because I was protesting my early career and my "stage mom." Finally, my mother managed to find a Lyme doctor at an outlandish price far away - and took me and saved my life at the last minute. This is why I must take 50 medications per day, to this day (though about 35 of them are vitamins, I need them or I get bad symptoms). And my health still isn't good. Had the system simply diagnosed me in the first place, then I would not have lost my voice, could have returned to school & continued on to my Broadway and musical career, and continued donating to causes like womens' rights, gay rights and funds for the poor like I used to when I was being paid good money to sing at 15. I would have contributed to Lyme research, too. If you think I am exaggerating about being told I'm crazy, watch this trailer. This movie & general Lyme awareness was not around in 1996 when I got sick, so I had it even worse - but even with this awareness, people still go through this all the time.
This is a very complicated issue. I don't have any answers. I am still trying to make my way, one day at a time. I am thankful to live in America though, because most other countries don't have affordable private doctors or private insurance, and most don't have ANY Lyme doctors. I know this for a fact because people from many countries come to my doctors if they are rich enough to get over here. There is Lyme there, but it isnt recognized. Many people die from Lyme in USA and overseas, but overseas, your average middle class or poor person would not have a chance at acquiring care for it, and would most certainly die. There are suicides because of this.
I don't love the idea of big government, socialization of everything. I do think medical care should be available for the poor - and I will never change my mind on that - but I would have preferred strengthening Medicare, Medicaid... strengthening the bottom.. rather than shredding the top. I would have preferred if Obama was honest when he said "You can keep your current insurance" - which I knew even then, wasn't true, because I actually bothered to read the bill, since it affects me so much. I would prefer if there were programs available to help people like me find work and make it, and tax money went more toward that than piling on more and more welfare. I understand that children deserve welfare if their parents aren't working, I'm not cruel, and I'm not implying it should be taken away completely, but I just think the focus is on the wrong things in order for the economy to improve. I'm not working in government and I don't have answers, but I'm just sharing my experience from various angles.
Simply put, I'm not a fan of big government because the bigger it gets, the less we can trust them, and the more they are lobbying, licking corporate assholes, etc. If I could trust the government to be good and genuine, it would be different, but this has never happened for any sustained period of time anywhere. So while I do think its necessary to have options for the poor, I also am not a fan of excruciatingly high taxes and punishing the middle class. Some would argue that only the rich are being taxed, but the cutoff point that is considered "rich" is right at the point when someone would have enough to invest in starting a small business. But now, that money is being taken away, so these people cannot start or sustain a small business, and all the power stays in big businesses. Basically, all this does, is prevent small businesses from opening and prevent the lower middle class from moving up. It widens the gap between poor and rich. This is not an adequate solution in my eyes.-
Also - Due to Obamacare mandates, I lost my insurance which covered a good portion of my Lyme expenses because they could not afford to stay open. I got a new one, which also closed due to mandates. After that, the third one cut my medicines one at a time. I made some phone calls demanding to speak to higher-ups etc... and got my answer... "State mandates" (aka Obamacare mandates). Needless to say, this played some part in why my health has deteriorated since 2012, getting worse and worse.
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I just saw this article which inspired me to start this thread.
https://www.birmingham.ac.uk/news/la...2h2BunaDDJdM60
Finally, it has been proven scientifically that brain-fog and inflammation (illness) are related. If only people would listen to Lyme patients, this would have been known already.
No, really - I am glad there is scientific documentation to back this up, so others may have diagnoses that help them speak with teachers & bosses, so they might get through demands of their jobs, school etc. I personally don't want to be 'excused' or be 'allowed' to lag behind, but it's better if I can tell my boss "I have serious brain fog today... it's a physical diagnosis, not me complaining. I'd like to have a task that is more repetitive so I don't have to figure things out."
This is very good news for Lyme patients. Maybe the science can lead to figuring out how to prevent this....Comment
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