Thursday, November 20, 2014

Secrets and Society's Love of Blaming the Victim

A few people have asked about why I'm being so straight forward about regarding some of the issues I've gone through recently, so I wanted to address those.

It's a popular notion that many things are too personal to discuss. Two of the biggest categories in my opinion that are kept quiet are ongoing/chronic illnesses and abuse.

On the illness side, I talk about it because I had no one to reference growing up. If I can help just one family or one person deal with this illness, then I'll consider this blog and the crud I go through worth it. Some of my favorite people in all of time and space are those I've met because they were brave enough to discuss their illnesses. As I said in my last post, I hate this disease and the others it brought along, but I love the people I know because of it (side note: did you see the new page all about resources like other bloggers? Check it out here).

I figure I've written about my sex life. You guys know enough about me that I also feel comfortable sharing my journey coming to terms with the abusive household in which I was raised. There was a point in time where I was ashamed or confused about a lot of it. I held it in and that contributed to how ill I felt. Now that I'm getting things out in the open, I feel better physically and mentally.

I also figure that many more people grow up in abusive situations than they realize. I had inklings, but never had equated my experiences with abuse until a friend asked me questions and led me to answers. I finally have peace in my heart and my mind. If I can bring that or the feeling that you're not alone, not the messed up one, to anyone else, then I will be happy.

I think interestingly enough that these two issues I have talked about more recently both are due to society's love of blaming the victim. Those of us with invisible illnesses are often met with phrases of passive aggressive judgment on how we handle our illnesses. We're told yoga or going paleo will cure us by people with no information, no handle on what we go through. It is made to seem that we either caused our illness - like smokers getting lung cancer (which is another story, because that's not the only contributing factor) - or we don't do anything to get ourselves better. Neither of those are fair judgments to pass on people, because we have no idea what they're going through or have gone through. You see the same thing in abuse or assault situations - the girl could've said no or the kid could've told a teacher. These phrases release the real culprit of any blame, and instead turn it to the victim who internalizes this message and tries to do everything to not cause waves. You don't want to excel in school, but you also know failure isn't an option because you'll be ridiculed or worse. You do just enough to pass through things, not shining but not failing either. There are some, like me as a high schooler, who throw everything into academics or other activities as a means of escape.

I've recently been berated for sharing what's happened from a couple of people as well. It seems that secrets are treasured in 'families' and we should be quiet about things that have transpired. That kind of thinking just perpetuates abuse, and makes it okay for us to ignore. If you don't like what I have to say, then don't listen.

I refuse to stop sharing things that will help other people while helping me heal. I refuse to stop talking about self care, self love, and self worth. I refuse to keep the majority of my life a secret. I don't care if the world knows what my secrets are, because I will always continue to be true to myself and my loved ones.





Friday, November 14, 2014

Reflections on 21 Years of Illness, Part 3: Happy Birthday Arthur!

TODAY marks 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 have written 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 three in the series.

Yesterday, I logged into my facebook account and saw a post from another adult living with JA in a JA support group that's generally frequented by parents of children with JA. She discussed some of her frustrations having grown up with JA - the limitations she's always had, the things she's missed out on, the anger she feels when an older person complains about what they're suddenly unable to do now that they have RA, etc. She reflected on how she just left all the adult RA support groups, because she couldn't handle the complaints about giving up high heels and such anymore.

Last year, I was very much this young woman. This year, everything in my life has changed, and I hope it does for her as well. There is a place for anger, but there is beauty in moving past it and using it as fuel for change.

When I first got sick, things happened quickly and yet slowly at the same time - medical tests, doctor appointments, my kindergarten class sending 'get well' and 'we miss you' cards, eliminating certain foods, changing detergents and soaps, getting chicken pox on top of my itchy then-unknown rash, etc, etc, etc. Nothing helped. I was just so tired of being poked and prodded and not being a normal kid. When the misdiagnoses of leukemia was brought up, and I was given six weeks to live, I made a bucket list.

I still haven't done everything that was on it. I don't even remember what all was on there, not that it matters now. My priorities are different and I've done things I never dreamed would be possible.

When I was finally diagnosed a few months later at age 6, medical literature stated that I'd be in a wheelchair by age eight. There was other literature that stated just how difficult SJIA in particular was to treat, and that disfigurement and life threatening issues popped up for every one of the afflicted children. I had already thought I was dying, and the household I lived in sadly encouraged that because it increased both my panic and my attachment to the women I was raised by. As my eighth birthday approached, I cried myself to sleep every night thinking that I would magically wake up on April 26, 1996, unable to walk - that I would be unwrapping a wheelchair instead of Lego sets. When that didn't happen, I was not relieved. Instead, my anxiety increased, and I began to go to bed with fear in my heart. I was pulled out of school and left to school myself. I was isolated from friends and adults who could've helped see the negative issues in my household and get us help. I was refused a medication that could've gotten me into remission or my disease under control, avoiding the disfigurements my bones now have. In fact, I was refused all medical treatment period within two years. I wasn't really even allowed to learn about my disease - that was never a curiosity fostered in my home. My sister had it even worse with the things withheld from her and the issues she endured - and is still going through - because of it.

I begged to go to school every single year. Some years, it was that I 'didn't ask early enough' so there was no way I'd be able to get into a school. Others it was that I clearly was too sick to go. When I was finally allowed to go back, I was overweight, overdosing on Aleve, and incredibly socially awkward. I was picked on and bullied - even by teachers. Middle school is always hard, but damn. I'm lucky enough that I fell in with a great group of kids as friends.

In high school, things in the household got worse. Violence escalated in newer ways at home, and being there sucked. I loved learning about the different cultures and religions in the world. I loved escaping my body when I could. I had been meditating and doing yoga since I was 12, but this gave more meaning to it all. My pain escalated and I thought that I could lose weight by starving myself, and that made things a million times worse. I then threw myself into my academics, and excelled, but still felt crummy more days than not.

In college, my pain escalated with the lovely new cold of Wisconsin I was being exposed to. I tried to get help on campus, but instead of knowing how to help at all, I was told that I knew my body better than the medical professionals at the health clinic - that I was a big girl and that I should know how to take care of myself. I couldn't find any medical records to help myself. I began to blog, and I found others like me! I met amazing people over the internet, who along with my now-hubby helped push me to get care. I began medications, moved to a new city, and tried to take graduate classes while working. I was able to keep it up for a while, but not long enough. I've been removed from school for three years at the end of this semester. I miss it, but I also no longer need it for the purpose it once served - escape and a doorway to freedom.

This past year has been amazing. I've finally put names to what my sister and I both went through growing up. We're understanding it, and others are as well. Friends are asking, not to be nosy but to help and to learn - heck, a wonderful friend is how I really learned about these forms of abuse in the first place! I've cut out toxic people from my life, knowing I owe them nothing simply because of genetics. I've also welcomed people into my life who really deserved to be there all along because of genetics. I've gotten married - something that the small scared child I once was thought would never happen - and it was the best day of my entire life. Arthur stayed calm - stayed away - until everything was wrapping up. He let me have my day, and so now I am more patient with his days. That bucket list lil K made has far been dwarfed by what this year alone has brought.

A lot of feelings come up in each of the paragraphs above. I've dealt with depression issues since I was young - partly because of this disease and partly because of the family I was born into. I've dealt with a lot of anger dealing with the issues surrounding both too. Strong and negative emotions tend to affect my disease more. Stress makes it worse. Because of this disease, I have spent a long time hating my body because of what it cannot do, and hating others because of what they are able to do. I've spent most of my life being isolated, in one way or another. This blog has been, and continues to be, a way that I can open up. It has led me to meeting other sick chicks and health activism and patient advocacy. It has even led me to apply for the Stanford Medicine X conference (cross your fingers!!) and to Washington, D.C. this past March to hobnob with politicians.

I still hate this disease. I hate what it's done to this body I live in. I hate what it continues to do while only kinda under control. I hate that it often controls what I do. I hate that it makes me look like a poor job candidate or a poor worker. I hate that it's brought little buddies like fibro into the picture too. I hate what it has done to others that I know, from disfigurements to overwhelming medical debt to death. Without it, like the girl on facebook earlier, I don't know who I would be or what I would do. I wish I could change the pain levels and the lack of treatment that caused much of those.

On the other hand, I know so many people around the world that I can't imagine life without. They help push me to fight harder, to be a better person, and to change the world - but also to remember to take breaks when I need to and practice self care and self love. Like my hubby does, each of these people remind me that anything is possible when we put our minds to it.

This weekend will not be a sad one lamenting Arthur as last year's kind of was. Instead, I plan on practicing some self care and love. T and I are heading to a hockey game this afternoon, baking some treats, spending time with our guinea pigs, and finally finishing up with our wedding picture edit requests.

Tuesday, November 11, 2014

Reflections on 21 Years of Illness, Part 2: New Medications

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 two in the series, documenting the breakthroughs in rheumatology over the last 21 years.

Enbrel [TNF alpha inhibitor]:
Approved to treat RA (Nov 1998)
Polyarticular JIA (1999)

Psoriatic Arthritis (2002)
Ankylosing Spondylitis (July 2003)
Plaque psoriasis (April 2004)

Kineret:
Approved to treat RA (Nov 2001)
While not FDA approved to do so yet, this is a drug of choice for SJIA/Still's

Humira [TNF alpha inhibitor]:
Approved to treat RA (Dec 31 2002)
Psoriatic Arthritis (2005)
Crohn's Disease (2006/2007)

Orencia [T-cell inhibitor]:
Approved to treat RA (Dec 2005)

Cimzia [TNF alpha inhibitor]:
Approved to treat Crohn's (Apr 2008)
RA (May 2009)
PsA (Sept 2013)
AS (Oct 2013)


Simponi [TNF alpha inhibitor]:
Approved to treat RA, PsA, AS (Apr 2009)

Ilaris [interleukin-1 beta inhibitor]:
Approved to treat CAPS (Oct 2009)
SJIA (May 2013)

Actemra [interleukin-6 inhibitor]:
Approved to treat RA (Jan 2010)
SJIA (Apr 2011)
Polyarticular JIA (Apr 2013)
New SubQ form approved for RA (Oct 2013)

Xeljanz [JAK (Janue kinase) inhibitor]:
Approved to treat RA (Nov 2012)


As you can see, there has been a ton of improvement in medications in the last 21 years. In 1993, the go-to was methotrexate if you weren't going to go into a medical trial for one of the above medications (namely Enbrel).

With these new medications, we have a better chance of finding a medication that works for each patient. We also have more options for harder to treat patients, especially those of us with SJIA/Still's.

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.

Monday, October 27, 2014

I'm back to the old me again - or, how a medium helped me figure out my life

If you've followed me for a few years, you know that the last few have been really hard on me. At the end of 2011, I made the tough decision to stop going to graduate school because I just couldn't function well enough to go to school and work. I began to grow really bitter, sad, and angry with the world. There were multiple occasions where depression was really high just with that decision. And then in December of 2012, Laura passed away of complications relating to our disease - complications a good medical team should have seen coming and caught. Any sadness I had left turned into fear and a burning anger. That anger became directed especially at those who believe in going all natural and stopping (or not starting) treatment that is life saving. I did some really great and meaningful work as a result with different organizations, but that anger never really went away. More stressful life changes happened - some of them sucked and some of them were amazing. I've had a few breakthroughs in the last several months where I've been able to be the real me again, but they never lasted too terribly long. I always went right back to huge amounts of anger, anxiety, and overwhelming fear. There have been many nights where I've cried myself to sleep because I get stuck in a loop of what ifs and whens and thinking about what will happen in the future. In the last few weeks, it really hit me that I've become a super unhappy person.

A large part of that was explained within the last several months as I began to learn and remember more how I was raised and the things I went through or witnessed while growing up. Everything just really came to a head at once, even though it came on slowly.

On Monday of last week, I got some news that someone close to me was diagnosed with lupus. Her symptoms started about the time we connected, which made me think of Laura. I won't go into specifics because that is something I hold sacred, but she gives me signs pretty regularly that she's around in some way. In death, she connected me with some amazing friends who have continued to give me support in her absence. I've been wanting to see a medium for some time, but this experience was just too close to let pass by. Thursday afternoon, I went and saw a medium. I wasn't really sure what to expect. I'm still not sure how much of what she told me I believe. She encouraged me to incorporate some more natural aspects into my care, which I'm taking steps to do. She also told me some things about my future that have really helped to put my mind at ease, some of it coming from Laura. That alone was worth the trip to see this medium. To have some of the issues I've faced validated by another woman who grew up in a very similar home situation was just icing on the cake.

I don't know how much the steps the medium asked me to take will help me improve my health. Some of these are things that I've fought against for a long time, and others are things that I just don't know will help at all. However, I've gotten back to the point I was at several years ago, where I'm willing to try, to make the effort. I'm ready to fight this with all I've got again, instead of being as passive and go with the flow as I've been lately in my care. There wasn't a whole lot she shared with me that I hadn't heard before in some way, but this time I was open to it and ready to hear it. This is a part of a major set of lifestyle changes for me. I've made some dietary changes and started making a lot of healthier changes in general. This, of course, on top of what I've already done this year to cut out toxic and abusive people from my life. I'm looking at changing rheumatologists as I've found one here in town who knows this disease and doesn't understand why I'm on a TNF drug. She's excited to work with me, and I'm excited to get a little more focused care. I'm eager to see what will happen as a result of all of these changes.

So, say hello to the new (old) me? I'm writing more, working on more projects, and eager to get started on making these changes. I hope you'll join in on this new journey with me.

In 2012, during a really hard day for me, Laura said that that year was going to be my year as I was accomplishing a lot - writing here and there for a few different big name places, giving a speech for the Arthritis Foundation, getting engaged, etc. I honestly think she was a couple years too early. I couldn't have written my life the way that it's played out so far, and I'm ready to start the next chapter.

Wednesday, October 15, 2014

Interview with a Pediatric Rheumatologist

A while back (okay, a year), I sat down and had a phone conversation with Dr. Alexei Grom at Cincinnati Children's Hospital. For those of you who don't know the name, Dr. Grom is one of the experts on Still's and MAS in children. He also focuses on Juvenile Dermatomyositis. He was super nice, and we discussed a lot more than I'm putting here, but a good amount of it was related to my current level of care and medications, so I won't necessarily put that info here.

One of the first questions I asked was about how Dr. Grom got into pediatric rheumatology, and why he focuses on these diseases. During his fellowship training, he worked with a pediatric rheumatologist. He found the field intellectually stimulating. Then, a SJIA patient died due to MAS. He knew he wanted to help focus on why MAS occurs in SJIA so often, and wanted to work with JDM children as well. He's definitely not in it for the money!

In 2006, the rheumatology world reached a turning point as far as these diseases are concerned. New papers were released on SJIA, which brought about a new treatment algorithm. Kineret came out. Now, we have ideas and more treatments centered around interleukin inhibitors.

We discussed the question of whether remission or just getting the disease under a bit of control should be the goal, and remission is definitely what we all want. Dr. Grom believes that pediatricians need to learn more about these diseases and really think about them. Six to nine months post-onset is the golden window to starting aggressive treatment with the best chances of remission, yet we have children waiting over a year to get a diagnosis at all. It has to change.

I brought up methotrexate, which I had just failed for the second time (first go was pill form, second was injection). He doesn't favor mtx for SJIA. There is some response, but poor control for us specifically. And 10-15% of JIA kids don't respond to the medication.

I wanted to know how physicians tend to get information on pain from children, because I didn't go through that due to my issues surrounding access to care. The biggest issue docs face (and parents too sometimes) is that it's hard to gauge what normal is in children, especially in younger kids. He encourages parents to use pictures to illustrate the differences in how their child is doing.

Many parents and families that I know have wanted to know what doctors wish they did differently when it comes to appointments and disease management. He wants his patients and their families to understand the courses the disease can take - complications, morbidity, etc. He also wants us to be well versed in side effects on our treatments as well as treatment options. Compliance with medications is always preferred, but if that can't happen, note why. Is it a side effect? Does the medication wipe your kid out for a week, so you change up shot days when there are big events coming up? We should have folders or binders of this kind of information. Kids should also be learning about their disease and all this as they grow with age appropriate information.

Finally we touched on a more recent theory - that SJIA/Still's shouldn't be lumped in with the other JIA types. Studies out there are hinting that SJIA/Still's are both more related to the periodic fever group of diseases, which makes sense with the fevers we get!

It was a great discussion, and he really helped me get a hold on what is going on today from the provider standpoint with SJIA. He also helped push me to seek out some different medications and, if that doesn't work, different care... which I may be doing soon.

Thank you Dr. Grom for talking with me and for all you do for SJIA kids!

Tuesday, October 7, 2014

Light: A Window to Pain in the Brain?

I have GOT to tell you guys about this new study seeking funding... with a little back story of course!

I grew up out in Eugene, Oregon, home of the Oregon Ducks. It's a great place - very progressive and full of actual, real hippies. Side note: I'm actually super stoked to try going out there for my ten year reunion in a few years.

ANYWAY, one of my friends from high school works in the healthcare industry. She knows Doctor Omar Halawa at the Oregon Health and Science University, who just happens to be working on this fascinating new study focused on chronic pain, specifically fibromyalgia.

You can read the details above, but basically here's the lowdown: fibromyalgia patients have been found to be a lot more sensitive to light than normal peeps. This study is going to utilize results from that study to see if changes in light can affect pain centers in the brain, and they'll measure this using a fMRI (functional MRI).

This is fantastic news for anyone dealing with chronic pain, as this could have HUGE implications for us. It's also super news for us fibro patients, because the medications used to treat fibro don't work for everyone and can have some funky side effects. I just found out the med I'm on can be a depressant - they gave a girl with a history of anxiety and depression a depressant!!!

Sigh. At least it's working okay for me. I digress.

My friend got me in touch with Dr. Halawa and he was kind enough to answer some of my questions on this study:
Briefly, chronic pain is a huge stigma in our medical system and society at large. If someone gets this diagnosis they're often labeled as "weak" "narcotic seeking" "whiney". What supports this erroneous view is that our current diagnoses aren't able to "find pain". For example, if you image a patient's lower back and find nothing pathological you imply to them that the pain is "in their head". This is harmful to the patient as they start to feel that their pain is a character flaw and often become isolated/hopeless. The reality, though, is that most chronic pain conditions are a malfunction in the neurocircuitry in the brain and spinal cord that we can't see with conventional imaging.
Our hope with this study is that we will be able to detect this abnormal/sick nervous system using functional MRI and light.
These doctors actually get it, so I figure we need to do what we can to help them help us, right? There are 24 days left for Dr. Halawa and his colleagues to raise the $12k needed to complete this study. If you're in the position to donate, please do so here. If you can't, please try to share this so that others can try to help.