Tuesday, September 1, 2015

Terminology Tuesday: spinal stenosis


Spinal stenosis sounds super painful.

It's basically where the open spaces in the spinal canal start narrowing causing lots of pain. This usually happens in the neck (cervical) or in the lower back (lumbar).

In addition to the pain in the area of the stenosis, it can cause tingling or weakness or numbness in the extremities, balance problems, cramping, stiffness, and even paralysis!

A lot of different issues/diseases can cause stenosis from herniated disks to tumors to osteoarthritis, and autoimmune arthritis damage.

Older people tend to be affected more, but that all depends on many factors.

Treatment can include PT, injections, and surgery.


Sunday, August 30, 2015

Self-care Sundays: being honest with yourself


When I started kineret at the end of July, I hoped that it would be my miracle drug. After all, it was why I changed insurance so I could change my rheumatologist.

So far so good. My sed rate went from being consistently above 30 to SIX in A MONTH.

NBD (no actually it's a huge deal and I cried for an hour in my office and called to share with my sister as if I'd found out I was pregnant).

I knew that I was having problems, but I guess I never really stopped to examine what exactly was going on with myself.

Over the last two weeks, though, I've legitimately cried over my body functioning well.

I have toes like look like real toes instead of baby hippos!

I have ankles instead of cankles!


I WORE WEDGES FOR A WHOLE DAY AND DIDN'T DIE.

I can open the piggies' water bottles without a grippy and crawl around on the floor with them more. I can open cereal packages, including the plastic! I can walk a lot without wanting to die. My brain is functioning with minimal (if any) brain fog - and that's with less caffeine than usual! I'm not freezing all the time!

I'm accomplishing things that I want to do and suggesting better things for improvement at work!

These are all things I haven't seen or experienced in a long time... I don't think I've seen my toes look normal in 22 years.

After the second week and a little into the third, the injection site reactions seem to have stopped. I've been icing before and after the injection, and sticking to my stomach because everywhere else sucks.

The only drawback is that the medication seems to be having more of a waking effect on me, so that combined with the extra energy means I've been having a harder time sleeping than I'd like.

It's interesting though. I've always considered myself to not be as bad off as others, but I'm starting to think that was a coping mechanism. Whether that's good or bad I'm not sure. I wish that I was able to be a little more honest with myself without the improvement - not that I'd trade it! It's just hard to know how badly I've been doing in the past now.


What are some ways you have found to be more honest with yourself?

I'm so glad that I'm doing better before my trip to Stanford. I hope that you'll join me on my MedX journey Sept 24-27! I'll be live tweeting the whole time so hit me up@kirstie_schultz, catch the live streams at the Medicine X website, and join in the conversations using the tag #MedX.


Friday, August 28, 2015

Get Freaky Friday: giving 'the out'


Since I'm writing about sex and relationships over at CreakyJoints (new post goes up today!) let's add its own day here!

I was recently reading a story about a couple where the man was diagnosed with Amyotrophic Lateral Sclerosis (ALS) shortly after they had started dating. After getting diagnosed and receiving the prognosis, he his then-girlfriend an out with no questions asked. She didn't take it.

It made me think back to the Juvenile Arthritis conference earlier this year. During the young adult session on relationships, many in the room with partners had revealed they had done the same thing.

It's an incredibly sad and depressing testament to how often relationships break up due to illness that this becomes a common occurrence. The part of me that is involved in advocacy and rights knows that we are humans, just as deserving of love as anyone else. We can't put ourselves down like this.

And yet, I so get it.

Look at how little we were!
When T and I met, I was upfront with him right away that I had 'this arthritis thing' which was incredibly naive. I didn't know much about my disease despite how long I had been ill. I don't ever recall a specific time where I gave him an out. There were a few, sure, questioning why in the world he'd want to marry someone that he will probably outlive and such. Most of the time I think it was more to hear him reassure me that this was the life he knew he was getting into and that we would figure things out.

The big questions like that really came after he proposed and after Laura passed away. I worried that he, like Laura's honey, would have to deal with a complicated family and cancelling wedding plans on top of me dying.

That doesn't mean that there weren't times I considered leaving him for his sake. He's so smart and handsome and, god, he's funny. I was afraid that my broken mind and body weren't worthy of him, and I spent a lot of nights crying myself to sleep while trying to figure out what to do.


In talking with a few other close activists, I was reminded how unfair it is for me to assume what he's feeling or going through. In truth, I think I was more frustrated with having to ask him for help than he was for getting asked. All of the things that I thought were annoying to him weren't even a blip on his radar... Here I was trying to figure out how to be the most fair to him without even asking for his input!

I wonder if the others in that JA conference session assumed like I had.


Thursday, August 27, 2015

Therapeutic Thursday: being grateful for pain


Normally we associate this handsome devil with political satire or hilarious comments. You may even associate him with just cracking up.


He has been through an incredible amount of pain though. His father and two of his brothers died in a plane crash when he was just 10, leaving him and his remaining eight siblings with his mother. The family moved and Stephen found himself very isolated and so got into geeky things like Lord of the Rings and such. Due to a surgery he is deaf in one ear, which sidelined his hopes of studying marine biology. He went to college to study philosophy and quickly changed to be a theater major. He wound up working for Second City and a handful of shows now leading up to his Late Show hosting gig. His mother died a couple of years ago, which was very hard on him.

Despite everything he's been through, Colbert is an amazing guy. It's true that we don't always get to see the real him, but so much of his compassion and love for others shines through in what he does. He's big into charities and helping children especially. He just donated a ton of money to help South Carolina public schools.

He has this great quote that I think really sums up everything I know about him... and having a crush on him, I know more than I probably should... *shifty eyes*

"Don't be bitter. Everybody suffers. If you can accept your suffering then you will understand other people better. Be grateful for pain. Love life."
-Stephen Colbert

It's an interesting concept for those of us in chronic pain right? With my PTSD and the like, I can be grateful because they allow me to be on guard and keep me away from toxic people. But how do you do that when you're body has gone awry?

I wish I could explain it. Personally I find myself more grateful for my pain now. The biggest part of that is, I think, my compassion practice and meditation. Treating myself with the same compassion I might show my sister when she's in pain has led to me loving myself more, which in turn has led me to loving the broken shitty body I live in. It's not my knee's fault that it hurts. It's not my immune system's fault that it doesn't work right. Something happened to cause that.

Not everyone can define their cause. I'm lucky that the abuse I witnessed has helped me to remember much more details than others... and yet it's possible that this abuse caused this illness. It's hard to say for sure, but I believe it did.

What parts of pain will you be grateful for today?


Speaking of pain, want to hear how others cope? Join me on my MedX journey Sept 24-27! I'll be live tweeting the whole time so hit me up@kirstie_schultz, catch the live streams at the Medicine X website, and join in the conversations using the tag #MedX.


Tuesday, August 25, 2015

Terminology Tuesday: morbidity and comorbidity vs mortality


When I started to really do research into my disease several years ago, I came across the term 'morbidity.' It's a bit of a shocking word, or at least was to me, due to how often it was associated with mortality. I thought for sure that morbidity meant something terrible.

Then I saw comorbidity and freaked out more.

Morbidity really just means the state of being ill due to disease. It can be used to describe a population ("SJIA patients have a higher rate of morbidity and mortality when compared to normal children their age") or to one person alone ("Kirsten's morbidity rose throughout college, finally coming to a head her senior year").

Comorbidity is where two or more illnesses that can cause morbidity exist, like how those with rheumatic diseases often also have fibromyalgia.

Most of us know what mortality means... It is being mortal, being able to die or be killed.


In studies on many rheumatic diseases, morbidity and mortality are often listed together. This can be a way to generalize that the population with a certain disease like SJIA tend to have higher rates of death or disability from their disease or related complications.

Want to learn more medical terms? Join me on my MedX journey Sept 24-27! I'll be live tweeting the whole time so hit me up@kirstie_schultz, catch the live streams at the Medicine X website, and join in the conversations using the tag #MedX.


Monday, August 24, 2015

Dear Anakinra/Kineret, I love you

I did labs this morning and was a little afraid that my blood tests wouldn't reflect how well I've been feeling...


But my sed rate IS FREAKING SIX.

It went from 40 to 6!

WTF.

I switched rheumatologists so that I could get on kineret. I knew that, eventually, this drug would be my goal. It has helped SO MANY people with SJIA and periodic fever syndrome and other autoinflammatory diseases.

I switched rheumatologists because my old one didn't want to use this drug. The injection site reactions were too big of a problem and it didn't help other patients they'd had on it - other patients who weren't SJIA or autoinflammatory btw. They were treating me as if I had a different JIA type.

If it was just between oligo and polyarticular, that would be one thing. The same drugs for the most part are used. Systemic is a different beast. MTX doesn't generally work for us and the TNF drugs only buy time.


I did see minor improvements when I was on Humira & Enbrel, but they both quickly quit working. The same with Cimzia. You can kind of see that here. The dip at the end of June 2012 was when I was on Enbrel and Arava, which I had to stop due to liver damage... and that's where we see the elevation in late 2012.


I had a rough go with some dinosaur bites injection site reactions during the second and third weeks of the injections, but they have cleared up amazingly quickly!

This is all so surreal. I cried for a good while the other night because I noticed, while fidgeting with my toes, that they were so malleable. Turns out they weren't swollen for the first time in 22 years! They were normal toes!

NORMAL

I had a similar moment with my ankle on the same foot.

And I even wore wedges the other day - five years to the day that I got my handicapped placard and said I give up (not that getting a placard means that - I literally put "I give up Arthur. You win." on facebook).

My new rheumatologist is amazing. I love her so much, not just for this but for really being a partner in my care and a friend.

I can't help but wonder though how many more drugs I would've failed with my old rheumy before they considered this. I wonder why I wasn't being treated with the right drugs. I wonder if it would be wrong (I know it would) to send them a message about how much better I'm doing now.


I'm so glad I stood up for myself. I'm so glad I had other ePatients telling me to be my own advocate. I'm so glad I had support to make all the changes I've made in my life in the last two years. I believe all these changes have gotten me to this moment - so close to giving Arthur the KO.

I'm going to go back to crying in my office.

Kineret.
Anakinra.
Lovely little daily shot.
I fucking love you.
Please stay working.
Get me into remission.
Make me better.



The 2015 Juvenile Arthritis Conference


It seems like every conference or gathering I go to brings me new ideas and thoughts to raise more awareness of arthritis. The JA conference was no different.

Check in at the hotel was just a little bit busy, but that's bound to happen when you have 1700+ people! 1100 of us were first-timers which is a big part of why they have the conference set up this way for next year...


How exciting is that?!

My first order of business was to run down and snag my swag bag before heading over to the young adult opening session.

Jenn Z and Jen H are amazing!
The opening night dinner was the next event, and the last that I went to for the night even though there was a young adult networking session.

The opening dinner was great with plenty of gluten free foods. We heard from AF CEO Ann Palmer, JA conference chair for the year and SJIA mom Rochelle Lentini, and others. Probably my most favorite part of the night was when Ana VillafaƱe talked and performed for us.


One of the things that I loved about the whole conference was how much more of a focus on SJIA there seemed to be compared to past events. SJIA is rare, so I get that many may not feel it as prudent to discuss, but it was great. I say this because Ana has SJIA. Despite her illness issues, she's debuting on BROADWAY in November in On Your Feet, a musical about Gloria Estefan and her family.


Instead of hitting the YA networking session, T and I hit the pool - something that surprisingly we hadn't done all trip yet! It was a wonderful way to rest.

The next day started at nine with a panel of amazing people - Ana, Todd Peck (NASCAR driver), and juvenile/adult rheumatologist Dr. Sandra Pagnussat.


All three of these amazing people have fought hard to become who they are today. They each went through difficult periods in their lives and how they made it through.

One of the nice things about being in the YA category is that I could attend the sessions meant for parents and caregivers... even though they couldn't attend our sessions. For the next few sessions of the day, I was able to pop out and enjoy some SJIA and very science driven sessions.


The first session I attended was on diseases like SJIA that are autoinflammatory in nature instead of autoimmune. Perhaps the biggest thing I learned in this session was that adolescent boys are more likely to have one SJIA flare and be done with it. If you have five years or more of active disease, it's likely you will deal with it the rest of your life. The good thing, though, is that less than 50% of cases have severe or life-threatening complications... how sad is that what slightly less than half is good news?

Dr. Elder also talked a bit about Macrophage Activation Syndrome, or MAS, and how it often isn't recognized right away due to the many diseases it mimics like hepatitis. It's estimated that about 10% of SJIA patients will have overt MAS but that 30-40% will have symptoms of MAS without it being full blown. She explained the difference between autoinflammatory and autoimmune, which I hope to cover in a later post.

Interleukin (IL) 1 Beta, which Ilaris and Kineret treat, is responsible for many of the systemic features including rash. It's also the major cytokine responsible for septic shock, which is what Kineret was first developed to treat but it failed to do so. IL-6 is responsible for maintaining many of the arthritic features including later osteoporosis and growth retardation. IL-18 is responsible for MAS and can possibly be used as a biomarker for SJIA in the future.

Something interesting that I found was that, in theory, you're not supposed to consider a diagnosis of SJIA if the patient or his/her immediate family members have psoriasis. This is supposed to be consider Psoriatic Arthritis. I was a little shocked honestly, as I have psoriasis and SJIA, but Dr. Elder explained that there are outliers and both can exist in one patient. It's just more rare because of the autoinflammatory and autoimmune differences. You don't often see a person who has issues in both their innate and adaptive immune systems.


Novartis, the company that makes Ilaris, was kind enough to host a SJIA lunch Friday. I ended up at a table with the Sloan family and the Burgos family... whose little guy kept flirting with me throughout the rest of the conference.

I've developed baby fever Rafael!

I also was able to meet Leah Bush and Amanda Hendrix, two SJIA moms that I just LOVE. Honestly they're a big part of why I blog and it was so nice to be able to give them some hugs and say hey.

The lunch itself was great. They displayed some amazing pictures from the Picture Your Best Day with SJIA project and talked about the new Know SJIA website as a joint venture between Novartis and the Arthritis Foundation. The website has some great resources including this handy SJIA symptom tracker.


The next parental session I crashed was Genetics 101 with Dr. Troy Torgerson from Seattle. It was more focused on the autoimmune side than the autoinflammatory side, but was very interesting. One of my favorite quotes from this presentation was "we're all mutants." There was something so comforting in knowing all of our DNA is messed up in different ways, and to have a pediatric rheumatologist who is also an immunologist kind of say that this doesn't make us that different.

With me being a big of a science nerd, I LOVED this presentation. It was nice that I knew about some of it beforehand because it helped me to grasp some of the other issues he discussed.


The next session was led by Shelly Baer, Robert Hernandez, and Kevin Purcell (founder of Arthritis Introspective) on self-esteem and body image - "I'm sexy and YOU know it!" It, like many of the other YA sessions, was really a forum to bring up issues we had. It was interesting sitting in there and really realizing how far I have come in the last two years on self love and self care. I had multiple things I liked about myself and others were struggling to find just one.

It both made me proud of myself and show compassion towards others. It's so hard to live with this disease as a young person, dealing with societal ideals of beauty when we can't meet them.

That night the young adults hung out by the pool and took some selfies!


And I actually wore my two piece in front of other people! AND GOT COMPLIMENTED!


It's been a while.


The next morning started off with an awards session, followed by a conversation on the new partnership between the AF and CARRA (the childhood arthritis and rheumatology research alliance).


I was starting to feel a little beat so I had to take up a lot of room.


The cool thing about CARRA is that it started out as a group of pediatric rheumatologists and researchers coming together to see what they could do to help these sick kiddos. We have all these great drugs, but more are coming down the pipeline. The registry that CARRA has developed can help to track information better and utilize patient information, deidentified of course, to bring more change for the better.

It's an amazing way to promote patient engagement in research, which is something we all should be interested in.


The most moving part of the morning opener was when Vincent Del Gaizo got up to speak about his involvement with CARRA as a parent of a SJIA patient. He discussed his son's difficult case and the changes in how well he's doing now.


The next awesome presentation was about relationships. We heard from Dr. P (from the opening YA panel), Jeremy and Renee Forsyth, and George and Joy Ross. We heard about their stories and then it, again, turned into a very open panel. We discussed topics like disclosure, where I brought up telling T on my first date and how he's always seen it as a part of me, communication, and recommitting to each other daily.


During our lunch break, I stopped by the Novartis table to ask about Ilaris and the different patient assistance programs available. Apparently they will even help you fight to get the drug put on your insurance company's formulary! How cool is that?

T and I enjoyed some food truck goodies and I headed off to the next session on transition.


I was a little disappointed in that I heard there were supposed to be several people on this panel, but at the end we only had two - Catherine Miney and Janet Hess, PhD, MPHS, CHES. Janet helped to standardize the transition to adulthood across the state of Florida, which I'm sure wasn't easy to do!

It was a very open discussion, and I wound up contributing to a lot of the answers with new ideas on how to handle what some of these amazing people were dealing with.

After sharing information on some of the apps I enjoy like Arthritis Power, I headed up to my room. There was another session to go but I was just wiped out and I needed to rest. Theron and I took a short nap and then went out for some late night barbecue before working on packing up.

In the morning we stopped by the walk & jungle bell run expo, where we ran into some of my favorite people like Tory who runs Mariah's Movers. Then I ran into AF CEO Ann Palmer...


I bugged her for a minute to thank her for the change she's brought to the organization because, honestly, this was a lot better than I thought it would be. Apparently she's heard of me? Yikes!

We headed over to the hope tree next...


where we saw some of the cutest hopes...


 and I put up my own.


I snagged a picture with Ana and will hopefully be interviewing her soon!


The YA program did their wrap up.


And then we heard from Joy Ross at the general closing.


They announced my friend Colleen Ryan as the next conference host and that we'd have TWO to look forward to!

BTW definitely hitting up SD at least.
The conference itself was so amazing. There were so many different sessions to chose from. The hotel was perfect, though sometimes the signage could've been better. The food was great and gluten free friendly. The people I met were amazing and the changes on the way will make the AF into what I've felt I wanted it to be, at least for the young adults - a way to shape us into advocacy leaders, a way to get us more involved, and a way to shine despite our illnesses.


My time in Florida was already amazing, from meeting my friend Emily to finally going to Harry Potter world to enjoyed feeding giraffes at Busch Gardens to sitting on the beach and relaxing. I didn't have time to hit up Disney, but that just means I'll be back Florida. You better be ready for me!

There are SO many more recaps out there, including the official AF ones. You can also snag presentations and materials from the conference here.

Wanna see me live-tweet at a conference? You can! Join me on my MedX journey Sept 24-27! I'll be live tweeting the whole time so hit me up@kirstie_schultz, catch the live streams at the Medicine X website, and join in the conversations using the tag #MedX.