Sunday, November 9, 2014

Reflections on 21 Years of Illness, Part 1

This coming Friday will mark 21 years of living with this disease for me. It's not necessarily a day I want to celebrate, but it is also a day that I cannot let go by unmarked. I hope to write a few different blog posts this week reflecting on the live I've lived so far, the lessons learned, and the amazing steps that have been made in chronic illness and rheumatology care since 1993. This is part one in that series, about the random things that have happened since I fell ill. For the sake of limiting my political views from coming in here, I'll stop at 2007, when I began blogging and dating my hubby. Personal events will be bolded.


  • 1993
    • I fall ill (Nov 14)
    • NAFTA agreement (Nov 21)
    • Toni Morrison won a Nobel Peace Prize for literature (Nov 30)
  • 1994
    • Nancy Kerrigan attacked (Jan 13)
    • Four convicted in World Trade Center bombing (Mar 4)
    • Hutus in Rwanda began their genocide against the Tutsis (Apr 6)
    • South Africa held first interracial election and elect Nelson Mandela (Apr 29)
    • OJ Simpson arrested in connection with the murders of Nicole Brown and Ron Goldman (June 18)
    • I am finally given a real diagnosis that fits (summer)
    • MLB players went on strike (Aug 13), which caused owners to end the season and cancel the World Series (Sept 14)
    • After a month or so of first grade, I am pulled out and homeschooled (Nov)
  • 1995
    • My sister Kelsey also falls ill (last year or this year? I can't remember but she was 2 or 3), presenting the same symptoms as me. She is diagnosed by the family we were raised in and receives no medical treatment. I quickly am relieved of my access to medical care as well as the home we grew up in becomes increasingly abusive. The homeschooling we were both to receive turns into us trying to teach ourselves very quickly as the adults decide it isn't their problem to teach us.
    • MLB strike ended (Apr 2)
    • Appeals court upheld a woman's plea to enter the Citadel military academy (Apr 13)
    • Oklahoma City bombing (Apr 19)
    • Israelis and Palestinians agree to transfer the West Bank to Palestinian control (Sept 24)
    • Ceasefire reached in Bosnia (Oct 5)
    • Yitzhak Rabin killed (Nov 4)
  • 1996
    • FBI arrested suspect in Unabomber case (Apr 3)
    • Ella Fitzgerald died (June 15)
    • TWA Boeing 747, Flight 800, crashed (July 17)
    • Bomb set off at the Summer Olympic Games in Altanta, GA (July 25)
    • Madeline Albright becomes first female Secretary of State in the United States (Dec 5)
  • 1997
    • Hale Bopp comet proximity to Earth (Mar 22) inspired Heaven's Gate cult group to commit suicide, bodies found (Mar 26)
    • US spacecraft began survey of Mars (July 4)
    • Princess Diana killed in car crash (Aug 31)
    • Mother Teresa died (Sept 5)
    • Rituximab (Rituxin) approved by the FDA for use in non-Hodgkin's Lymphoma (Nov 26). It would later be used for RA and other rheumatic diseases as well.
  • 1998
    • President Clinton accused in sex scandal (Jan 21)
    • FDA approved Viagra (Mar 27)
    • Good Friday accord reached in Northern Ireland (Apr 10)
    • Infliximab (Remicade) is FDA approved for treatment of Crohn's disease (Aug 24). It will later be used to treat rheumatic diseases.
    • Matthew Shepard beaten to death for sexual orientation in Laramie, Wyoming (Oct 6)
    • Enbrel approved by the FDA for use in Rheumatoid Arthritis (Nov)
    • My brother Matt was born (Nov 20)
  • 1999
    • NBA ends labor dispute (Jan 6)
    • First nonstop balloon flight around the world completed (Mar 20)
    • Joe Dimaggio died (Mar 8)
    • NATO began airstrikes on Serbia (Mar 24)
    • Dr. Jack Kevorkian convicted of second-degree murder in assisted suicide/death with dignity case (Mar 26)
    • Columbine massacre (Apr 20)
    • First woman graduates from the Citadel (May 8)
    • US women's soccer team beats China for World Cup win (July 10)
    • JFK Jr died (July 16)
    • World population reached 6 billion (Oct 11)
    • Tobacco companies admit smoking is dangerous (Oct 13)
    • Elian Gonzalez debate starts (Nov 25)
  • 2000
    • Y2K Scare  (basically all year longggg)
    • Hilary Clinton enters senate race in New York (Feb 6)
    • The IRA missed their disarmament deadline, so Britain came back in to rule Northern Ireland (Feb 11)
    • Vermont approves same sex unions (Apr 25)
    • August Pinochet lost immunity granted by Chile, which leads to a trial for years of torture and abuse while he was dictator (May 24)
    • Israeli troops withdraw from Lebanon (May 24)
    • Britain leaves Northern Ireland again (June 4)
    • Yugoslavia overthrew government and president Milosevic (Oct 5)
    • USS Cole explosion (Oct 12)
  • 2001
    • George W. Bush sworn in as president (Jan 20)
    • Bush abandoned Kyoto Protocol (on global warming), pissing off like everybody (Mar 30)
    • Former Yugoslavian president Milosevic delivered to The Hague for his war crimes trial (June 29)
    • After years of begging, I am allowed to go back to public school (Sept 10 is my first day of 8th grade)
    • Terrorist attacks on the United States hit the Pentagon and take down the towers of the World Trade Center, while another plane reportedly headed for the White House crashed into an open field in Pennsylvania after passengers acted to stop the plan (Sept 11)
    • My immune system figures out how to get sick quick, and I'm home with the flu for a few days (Sept 12)
    • Anthrax letters find their way to several government agencies, killing a dozen people (Oct 5 and on)
    • Bombing campaign against Afghanistan began (Oct 7)
    • IRA finally began disarming (Oct 29)
  • 2002
    • The Euro began to be used in European Union countries (Jan 2)
    • East Timor becomes a new nation (May 20)
    • US Catholic bishops finally institute a zero tolerance policy of child abuse after several high profile cases come to light (June 14)
    • I start high school (Sept)
    • Vatican calls for softening of the above zero tolerance policy (Oct 18)
    • DC sniper attacks (Oct 2-24)
    • EPA relaxed Clean Air Act (Nov 22)
    • Department of Homeland Security created (Nov 25)
    • Humira approved by the FDA for use in RA, JIA, PsA, AS, Crohn's disease, ulcerative colitis, and plaque psoriasis (Dec 31)
  • 2003 
    • North Korea withdraws from nonproliferation treaty (Jan 10)
    • Space shuttle Colombia exploded (Feb 1)
    • Tons of demonstrations around the world pleading with US Government to leave Iraq alone (Feb 15) and then everyone in the UN tells the US to not invade Iraq (Feb 24)
    • We invade Iraq anyway (Mar 19)
    • First Palestinian prime minister sworn in (Apr 29)
    • Massachusetts Supreme Court ruled in favor of gay marriage (Nov 18)
    • Sadaam Hussein captured (Dec 19)
  • 2004
    • Enron CFO admits being bad (Jan 13)
    • Al-Qaeda terrorist attacks in Spain  (Mar 11)
    • Abu Gharib scandal photos released (Apr 30)
    • Chechen terrorists take over school, killing 340 in total (Sept 1-3)
    • Christmas tsunami caused by a 9.3 magnitude earthquake kills an estimated 225,000 (Dec 26)
  • 2005
    • Mahmoud Abbas wins presidency of the Palestinian Authority (Jan 9)
    • Saudi men are allowed to vote in municipal elections (Feb 10)
    • Pope John Paul II died (Apr 2)
    • Benedict XVI becomes the Pope (Apr 24)
    • Mahmoud Ahmadinejad wins Iranian presidential election (June 24)
    • Sandra Day O'Connor retires from the US Supreme Court (July 1)
    • London hit by terrorist attacks (July 7)
    • Central American Free Trade Agreement (CAFTA) signed (Aug 2)
    • Hurricane Katrina hits the Gulf Coast killing more than 1000 people and leaving many more homeless (Aug 25-30)
    • Angela Merkel becomes Germany's first female chancellor (Oct  10)
  • 2006
    • John Boehner is elected House Majority leader and most likely to be orange (Feb 2)
    • I graduated from high school with honors and a full International Baccalaureate diploma (June)
    • We move to Wisconsin (Aug) and I get my first job at the end of the month and start college with Sophomore standing (Sept)
    • My sister Ella was born
    • South African parliament votes to legalize same sex marriage (Nov 14)
    • Gerald Ford dies at age 93 (Dec 26)
  • 2007
    • Virginia Tech massacre (Apr 16)
    • The transition of Northern Ireland to self-rule takes final steps (May 8)
    • After several months of fighting and other issues, Palestinian president Abbas dismantles much of the government and declares a state of emergency (June 14)
    • Bush vetoes a bill that would've eased restrictions on stem cell research (June 20)
    • A bridge in Minnesota collapses while full of cars, killing 13 (Aug 1)
    • I start dating Theron (Sept 19 + 20)
In the last seven years, several new treatments for rheumatic diseases have come out from Ilaris to Actemra to Orencia and more. Several of those are FDA approved to treat SJIA specifically. We've also discovered that aggressive treatment within the first 6-9 months of diagnosis yields the best chances for remission.

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