I AM MAD!
I AM GOING TO DO SOMETHING ABOUT IT!
ac·tiv·ist [ak-tuh-vist]
noun
1.
an especially active, vigorous advocate of a cause, especially a political cause.
adjective
2.
of or pertaining to activism or activists: an activist organization for environmental concern.
3.
advocating or opposing a cause or issue vigorously, especially a political cause: Activist opponents of the president picketed the White House
I carry many titles, wife, mother, daughter, sister, aunt, martial artists, instructor, educator, friend, christian. I am adding a new title to my list: ACTIVIST
I am disgusted with the ignorance over a disease that can be so damaging! I'm angered that so little attention is being payed to an epidemic that borderlines being a pandemic! I'm shocked that so many are allowed to suffer silently. I'm saddened that those who are sick are invalidated, being given labels like, hypochondriac, mental, crazy, lazy, attention seeker.....
It isn't ok that those who are sick with Lyme often hide their diagnosis from friends and family due to the negative stigma associated with it.
It isn't ok that those who DO share it with their family and friends find themselves rejected, judged, and ignored.
It isn't ok that thousands of the sickest among us are denied treatment because insurance companies won't pay for it and they can't afford it.
It isn't ok that those who are sick find themselves in financial ruin.
It isn't ok that so many who are sick find themselves alone with their illness.
It isn't ok that much of this could be prevented with better diagnostic tools and early intervention!
I'm having a good health day today. It has been a few weeks of not feeling well due to my lack of ability to afford my medication. Thankfully, family came forward and helped us pay for a few weeks of my medicine and I'm starting to feel better again. It goes to show how much I need this medication to recover!
I'm blessed, I consider my Lyme Literate Doctor (LLMD) to be one of the best out there. Unfortunately, there are many doctors who are LLMD's but they don't have the knowledge needed to treat chronic lyme successfully. This isn't a judgment, I'm thankful for anyone who is trying to educate themselves and help those that nobody else will. I am calling attention to this, because it is a symptom of one of the many issues involved with the lyme controversy. Those who don't consider long term antibiotics helpful, often point to the patients who have been on antibiotics for years without improvement, and even worse, they have damage from the antibiotics they were taking. I'd like to turn this around, I see it as a problem due to lack of education, research, and resources. I applaud any doctor, who is trying their best to help those of us who are sick when nobody else will. If you are a doctor who is in this only for the money or you don't keep up with current research, well, I don't respect that.
Anyway, I am increasingly frustrated with the fact that I know what treatment is working for me and the only thing between me and getting well is a whole heck of a lot of money. NOT FAIR!
I can accept that my lyme diagnosis was missed, because I contracted it back in the 80's when little was known about it. My dad thinks I probably got infected during one of our fishing trips in the White Mountains of New Hampshire. He said you could fill a cup with all the ticks you pick off yourself when there. Anyway, excuse my Lyme induced ADHD....back to my point.....
I am appalled by the lack of seriousness given to people with an obvious new lyme infection. How lucky would I have been to have known I had lyme as soon as I got it! There is no need for anyone, who shows the doctor a bullseye rash, not to have a heavy dose of antibiotics. I'm not a medical professioal, BUT if you give strep throat ten days of antibiotics, why can't lyme also get the same treatment?
There are so many reasons for us lymies to be ACTING UP! In fact, if you are reading this and you don't have lyme, you also should be angry! What if you get infected in the future? It is VERY probable! Our situation can just as easily be your situation! At the very least, as a tax payer you should be mad! Think of all the people who are disabled, unable to work, needing government assistance, all because they have chronic lyme disease. These are people who WANT to work and be an active part of their community!
Here is what is most frustrating: those of us who want change bad enough to become activists are also to sick to be very active! We are able to do very little in standing up for ourselves, we are the most motivated, but can't do a lot! HELP US! PLEASE!
Back in the 80's individuals with AID's had a lot of the same issues we with lyme have today. Now, although I don't agree with everything the group that called themselves "ACT UP" did, I do agree with the idea of demanding to be heard and doing what needs to be done to stop injustice.
Here are a few of the things they did:
- Demonstrated on Wall Street and Broadway to demand greater access to experimental AIDS drugs.
- The day before the demonstration, the organizer wrote an op/ed piece explaining the issues ACT UP were concerned about.
- Act Up members chained themselves to the VIP balcony at the New York Stock Exchange to protest the high cost of the only approved Aids medication
- They shut down the FDA for a day, it was the largest protest since Vietnam
- On April 15th they protested at the NY post office to catch the attention of all the last minute tax filers
- Women targeted the CDC for it's narrow definition AIDs/HIV
- Day Of Desperation: 3 Act Up members entered the CBS Evening News yelling, "Aids in news, Fight Aids not Arabs" (I love this one, if you can't get the media to pay attention to you....well you just bring your issue straight to them!)
We could now easily exchange the word AIDS for LYME. It is the exact same problem with a different name. I hate to be the one to break the news to you, but LYME is a cousin to syphilis. Lyme is a blood born pathogen. Lyme can be passed from mother to fetus during pregnancy and from mother to baby during breast feeding. There are multiple study's that have been done showing the high probability that Lyme can be transmitted during sexual intercourse.
So, I am upset I have been sick for so long and have judged myself for being lazy or a wimp. I'm upset that the doctors who I went to for help were ignorant concerning all the obvious symptoms I had for lyme. I'm upset that finding a lyme litterate doctor is so difficult. I'm upset that I gave lyme to my children. I'm upset that I have a medicine that is working for me, but it's to expensive!
I'm ready to ACT UP!
Check it out and see what events are happening this important weekend in your area!
Join us in making this year the year of change!
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