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.

Sunday, September 7, 2014

30 Things About My Invisible Illness(es) You May Not Know

It's Invisible Illness Week!

1. The illnesses I live with are: systemic juvenile idiopathic arthritis (SJIA or Still's Disease), psoriasis, fibromyalgia, general anxiety disorder, depression, and patellofemoral arthralgia of both knees (yeah, the last couple are newerish)
2. I was diagnosed with it in the year: SJIA - 1994; psoriasis - 2010; fibro - 2012; GAD, depression, and the knee thing - 2014
3. But I had symptoms since: SJIA - Nov 1993; psoriasis & fibro - 1995ish?; GAD, depression, and the knee thing - who even knows, but since I was pretty young.
4. The biggest adjustment I’ve had to make is: having to look at my electronic medical record to remember everything I have!! Nah, but really the biggest thing has been to take care of myself and put other things on the back burner.
5. Most people assume: that my problems are because I'm overweight, but I'm overweight because of my problems!
6. The hardest part about mornings are: waking up. I could hit snooze forever.
7. My favorite medical TV show is: House.
8. A gadget I couldn’t live without is: I used to say my laptop, but now it's my phone. I have so many apps on there, from anxiety calming apps to snapchat and instagram to tumblr, twitter, and facebook to keep my advocacy up on the go. It also helps me connect with and talk to the most important people in my life, so that's pretty baller.
9. The hardest part about nights are: the inconsistency in my energy levels. Sometimes I get home from work just half dead and can't do much. Other days, I can't sleep because of too much energy. Other times, it's because of too much pain.
10. Each day I take 10-14 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: embrace those that have scientifically been proven to help my various conditions, but also don't follow those a lot (read: I need a massage y'all).
12. If I had to choose between an invisible illness or visible I would choose: invisible. The problem with the invisibility issue will not go away if I just had a visible disease, but only is us invisible peeps band together to raise awareness. Also, as frustrating as it is, I am privileged to not constantly be inspiration porn for people.
13. Regarding working and career: I don't even know what to say. I'm good at my job and I like it, but I don't love it. There are definitely more advocacy related fields/positions I wish I could go into. It's just a matter of getting those people to bite.
14. People would be surprised to know: that I grew up in an abusive home. Abuse is actually one of those things that's been studied and found to increase likelihood of having fibro, so it shouldn't be that surprising, but I'm nice haha.
15. The hardest thing to accept about my new reality has been: the shifting parameters. Look, I've been sick since before I had the chicken pox, so there isn't so much a new reality... but I've learned to do more self care. The frustrating thing with that is that my body's definition of okay and shitty consistently change, along with my energy and pain levels. I just wish it was more predictable.
16. Something I never thought I could do with my illness that I did was: to be otherwise healthy. I've been able to have some great role models lately, and I'm definitely working on it.
17. The commercials about my illness: are total BS. I don't go golfing. The good news is that pharma is listening to patients say that, and is trying to make changes.
18. Something I really miss doing since I was diagnosed is: coloring all day? Really though, I think one of the toughest things is not being able to go and do what I want without thinking about it.
19. It was really hard to have to give up: running. I was told by my physical therapist earlier this year that I'm not allowed to run for a while. I love the feeling of pushing myself to do more than I could before, and I'm feeling a little bummed about this. However, my knees are getting stronger and we can soon start running rehab.
20. A new hobby I have taken up since my diagnosis is: I'd like to think my music stuff is a good hobby, but I also consider my advocacy work to be a nerdy hobby.
21. If I could have one day of feeling normal again I would: use it for my wedding day, and I did. I'm so glad. If I had another one though? I'd want to go on a long hike or run or go be super active without bringing the cane just in case.
22. My illness has taught me: to fight for what I need.
23. Want to know a secret? One thing people say that gets under my skin is: when they give me advice on what herbs to try or give reiki healing a shot. Y'all, I've been sick for 21 years now. I know what works for me and what doesn't.
24. But I love it when people: do thoughtful things like ask if stairs are okay today when we're walking or when someone walks slower than the group to match my pace or when I get texts from people to check in on me while I'm flaring.
25. My favorite motto, scripture, quote that gets me through tough times is:
"When we are no longer able to change a situation - just thinking of an inevitable disease such as inoperable cancer - we are challenged to change ourselves. In accepting this challenge to suffer bravely, life has a meaning up to the last moment, and it retains this meaning literally to the end." -Victor Frankl
26. When someone is diagnosed I’d like to tell them: to do their research. Learn as much as you can as quickly as you can about your illnesses. Doctors aren't unable to make mistakes, and being an informed patient may just save your life - and it'll connect you with others.
27. Something that has surprised me about living with an illness is: how much more of a family I have in the chronic illness community than with my large extended batch of relatives. I feel there is less judgment, less frustration and agony over decisions. There's an understanding there that other people often cannot have.
28. The nicest thing someone did for me when I wasn’t feeling well was: just hold me while I cry and assure me that my feelings are valid - and that everything will work out.
29. I’m involved with Invisible Illness Week because: all my illnesses are invisible to people who don't know them. We have to raise awareness.
30. The fact that you read this list makes me feel: good. Somethings have changed since the last time I did this, both for the better and for the worse. I think it's interesting to track those changes.

Wednesday, September 3, 2014

Wedded Bliss & A Crazy 2014

I can't believe I've been married over a fortnight. It's all a little weird. Aside from feeling more comfortable in my relationship, I didn't think anything would really change. And yet, here I sit feeling like a very different me than I expected. Some of that, no doubt, comes from the fact that I spent so much time thinking about and planning this wedding that I feel a little empty now. I'm not sure what to do with myself, other than to mother our new guinea pigs Gus Gus and Jaq... which means they're kind of possibly spoiled piggies.

The wedding went so much better than I could've ever expected. There was no drama. Things did actually stay pretty close to our schedule. I got to spend time with each of the important people in my life, and those people all got to meet each other. I danced most of the night, but what can you expect when they send a DJ who could be your musical twin and teaches you how to do the dances? I got to dance with my sisters, even the ones who aren't related to me at all, and with the awesome men in my life. I also got to spend some time with some of the cool spoonies I know, for which I'll always be grateful.

One of my favorite parts was being able to dance with my dad, even for a short time. For most girls, that's a no-brainer. Personally, I wasn't sure that would ever happen. You see, up until the beginning of August I had never gotten to meet my dad, and I had only talked to him a few times. I feel like I share an awful lot with you guys, but I haven't been able to share everything lately. One of the big things I learned this year was that there was a reason my little family seemed askew, and it's definitely been a part of the lack of new posts here. I really don't want to go into too much detail, because it's hard and I'm still recognizing a lot of it, but I learned that abuse comes in many forms. Dysfunction and abuse are different. Unfortunately, most abusers do not change and we have to cut off contact to live our lives safely and happily. My dad didn't even know I existed until I was five, until this disease had hit and brought with it too many bills to handle. A custody battle ensued. They were told I was fine and happy where I was, while I was told he only wanted custody so he didn't have to pay child support. I was told growing up that the lack of insurance was why I couldn't try new things or get hurt, when dad had to keep insurance on me the whole time. I didn't see a doctor or dentist from the time I was maybe eight until I was a senior in college, due to that supposed lack of insurance, and now have spent a very large amount of time and money to try to fix those things... which I'm still working on. My dad gave us money so I could get a hot tub to do water therapy daily. The money was spent elsewhere, and that was always a dangling promise *if* I did well enough or acted nicely enough. I've already talked a little about the abuse I've gone through due to people outside of the family too, and I've realized a little more about who knew things about that and didn't do anything. I could go on, but I won't, mostly because it's hard. I don't want to be a bitter person or focus on the past, as much as it seems it would be good to get a lot of it out.

I won't lie - I'm having a hard time dealing with everything. Dealing with coming to terms with how I grew up is being very difficult, and part of me is so very angry. I feel like I'm having to discover who I really am now too, and that's not an easy thing to do when you're in the middle of living your life! It's a lot to take in a very short amount of time, especially when I'm physically feeling okay. I wish my physical pain matched my emotional turmoil. It usually does, and the fact that it really isn't is both great and unsettling since I'm so used to it.

I think one of the most comforting things to know is that I am not alone in anything I do now like I felt I was growing up. I'm so grateful to have a sister I've known since she was born, and now to add a brother and another sister onto that is amazing. I have a dad and a stepmom who are more amazing than I could've hoped for. I don't know that I could be their kid more than I am if they had raised me. I have T's family, who are so caring and so helpful. I have some of the best friends in the world, including other spoonies and the person who helped me to really open up my eyes to the abuse I've gone through and has really and truly helped me get through all this without going bonkers. And, of course, I have T too.

All these great people make up my FOC, or Family of Choice. I couldn't be happier to have them as a part of my life going forward.

Tuesday, July 15, 2014

One in a million? Try one of two-thousand.

Juvenile arthritis affects roughly 300,000 kids in the United States (or 1 in 250). Of that, 10% of kids end up with systemic. Of kids with SJIA, only 2-6% get uveitis. That makes me one of roughly 600-2000 (if I still count my 26 year-old self as a kid). That means I'm one in 42,000-125,000.

To put it into more perspective, that's about 7-20 kids in the whole state of Oregon or 10-31 in Wisconsin.

Everyone loves the thought that they're special, but damn, not like this.

Tuesday, July 8, 2014

Wedding Crunch Time!

I get married in *checks phone* 38 days (side note: HOLY CRAAAPPPP). My to do list, while shrinking, feels quite large. Stress is rising and, combined with constantly changing humidity, my body is pisssssssed right now.

I'm actually home sick today thanks to that lovely humidity. T had to wash my hair for me on Sunday because my hands were so painful to really even move. There is definitely an embarrassment that comes along with this. I know it doesn't matter to T, but it has to do both with dignity and frustration with my own body. To be honest, the fact that we're a little over a month out from the wedding and I'm feeling that poorly is frightening to me - and makes me glad I have people to do my makeup and hair for me.

I keep meaning to write more, to talk more about what's going on in my life, but wedding stuff has me busy and/or panicking soooo probably not going to happen until September. That said, I definitely will be updating the facebook page with stories I find, how I'm feeling, and perhaps even a little bit about the wedding!

I'll see y'all on the flip side of my name change!

Tuesday, June 3, 2014

A lot of changes

Fun things I've been up to:


  • Moving this week (until Monday)
  • Unpacking and getting organized (forever)
  • Skipping my Cimzia because I'm bad and didn't want to do the shot in the middle of moving so I'm on my fourth week post-shot. The med is working well for me though, so that's happy news.
  • Practicing my ukulele because I'll be performing in public for a few performances later in the month (WHAT)
  • Finalizing a bunch of the wedding planning - alterations and a hair trial at the end of the month and I still have to buy a good amount of stuff for decoration, etc. Shower and bachelorette party are coming up too!
  • Cutting toxic people out of my life. I may elaborate in the future, but I've come to realize who I want to spend spoons on and who sucks the life out of me. Life is too short, especially with limited spoons, right?
  • Starting PT again because my left knee just sucks. He's got me doing a lot to strengthen the left hip, because he thinks that is where a lot of the issue is coming from. He also thinks that my leg length discrepancy is actually caused by my scoliosis and not the other way around - laying down it's only maybe 1/8 of an inch, so that makes sense.
  • I want to revamp the site a little bit, so please feel free to share information on what would be helpful for you to have easy access to (journal articles? doctor lists? JA resources?)
All in all, I'm feeling like a chicken without a head haha. Things will improve at the very least after the move is over, and I really get down to business on the other things.

Hope you're all doing well!