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.