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!

Wednesday, May 21, 2014

2014 Arthritis Advocacy Summit Recap

I've really fallen quite behind again in posting things, but the craziness has (kinda?) died down a little bit. Count on some more regular postings soon :)

For weeks, I had been on edge. I had neither traveled on my own before nor been to DC. As someone living with a type of autoimmune arthritis, this frightened me to no end. I knew that I would be around others advocating for the same causes, but would I be able to do all this running around? Would I be able to complete my tasks for each day, and still have enough spoons to participate in dinner or other activities? I was concerned, and questioning my ability to go and do these things. In the end, I ended up going - and I can’t even express how glad I am that I was able to go.

When I arrived on Monday, my first order of business after checking in was to attend a lecture on arthritis research given by Dr. John O’Shea of NIAMS. He discussed a lot, but focused on the advances in technology and how they make all the difference. He also spoke about the JAK inhibitors, like Xeljanz, that he has helped to develop through his research. It was an amazing way to start out the summit. I would be lying if I said I didn’t get teary-eyed during his lecture or the Q&A portion towards the end. These new treatments mean that we can help to treat those for whom other drugs didn’t work. It means that we have new avenues to explore, new weapons to launch and to research in the future. It also means that, hopefully, the number of people I know of every year who die from complications related to their arthritis will go down.

Later in the evening, we had our orientation meetings. As a first-timer, I sat in on the beginner’s section, where Laurie Markle and Michelle Guadalupe walked us through the issues, how to talk to politicians, and more. As an Arthritis Ambassador, it was great to get to learn more about these integral staff members of the foundation and to get to meet them, as I often hear their voices on calls or receive emails from them. It was also a little bittersweet, as Laurie moved to Zambia Thursday after the summit wrapped up. She has done a lot to help push a number of bills through through her work both with the summit and the ambassador program.

I was able to meet up with another person dealing with Still’s for dinner. It was great to be able to really connect after spending much time discussing the issues we face together. It added another layer to the idea of this summit - that I’m not alone, and I’m not the only one who will fight with everything I have to get us to a cure.

There was also a teen meet and greet that I was pretty tempted to crash to be honest. Growing up with this disease is isolating and it’s fantastic when you can be around younger people who share your pains as well as your zeal for advocacy. I figured in the end, though, that this 20-something should probably get some rest.

Tuesday was a very long day for us, jam packed schedule-wise. We hit breakfast bright and early with our state coordinators and others before moving into another room to hear from our new CEO and president Ann M. Palmer. It was refreshing to hear from her, and to see her interact with others during some of the downtime. Dan McGowan, chair of the Board of Directors, introduced her and started off the summit right by stating that the advocates were the “special forces of the arthritis population.” We heard from Congressman David B. McKinley (R-WV), who was given the 2013 Congressional Advocacy Leadership Award for his dedication to our causes. It was inspiring to listen to his views on helping others, especially as he talked about his personal struggles with hearing issues and how he wasn’t here to make a career in politics but to institute change. At one point, he stated “Many of you out there can’t vote for me, but I can vote for you.” It was enough to leave this gal teary-eyed.

We also were able to hear a lot from Christopher Kush, who is the MPP of Soapbox Consulting, on how to better get our messages more clearly to our representatives. He brought in several people to represent the asks we were going to discuss, including Beth - a young girl living with the same disease I face and also dealing with access to treatment issues.

Since my state had a small delegation, we separated for lunch and met up to catch our bus up to the senate meetings later in the day. We met with legislative assistants for Wisconsin’s senators, then headed back to the hotel. At this point in the day, my body was tired, so having a few moments to slather my joints in BioFreeze and take a bath was great.

At dinner, we celebrated several activists working hard for change as well as the most involved in the Arthritis Ambassador program. We then heard from Brian Teacher, 1980 Australian Open Singles Champion. After some networking, I went upstairs to get packed and rest up for Wednesday.

We met early for a boxed breakfast before our first meeting over at the House offices at 9:30 and did our drop offs - where we ran into this amazing setting for a picture.

Our next appointment was at 1 and some of the members of my delegation had to leave due to travel schedules. In between my meetings, I explored the surrounding area, taking in the Supreme Court and the grounds of the Capitol. I was hoping I might get to snag a picture of my Joey B, but alas all I saw in the immediate area were guys and gals with big big guns.



For my meeting at 1, I met with the representative for my district, Mark Pocan. We met in September to discuss HR 1827, and he became a cosponsor of that, and HR 460, shortly thereafter. I’m incredibly grateful for the support that he and his predecessor (now-Senator Tammy Baldwin) continue to give the Arthritis Foundation.

I took some time to visit the Folger Shakespeare Library, which was fantastic. Coming back, I had an awfully hard time catching a cab, so I walked from the Capitol Building to the Washington Monument - a whopping 16 blocks!! I was definitely sore! I caught the metro (which I love btw) to a friend's house, and it was really great spending time with her.

All in all, during the three days I was at the summit I walked about 30 miles - 12 alone on Wednesday. I met with two representatives and the legislative assistants to our two senators. I met up with and ran into friends and others I admire, and met new people with whom I hope to keep in touch. I learned more about innovative research and more about how each state is affected by this umbrella of diseases. I laughed and cried listening to these stories, to stories that are similar to mine. I’ve known for some time that I am not alone in what I live with, but to truly interact with people on this level really hammered it home for me. I learned more about myself through these interactions, traveling alone, and visiting awe-inspiring sites. Perhaps most importantly, this trip cemented what I’ve known all my life. It also gave me a sense of self - I know now that I can be self-sufficient in a way that I've not really experienced on a big scale before. Honestly, and this might make me sound full of myself, I walked away being proud that I was able to do so much.

I grew up with dreams of working at the UN and solving the world peace issue, only to have those unfortunately crushed due to my worsening condition forcing me to drop out of graduate school. For a long time, I was depressed. My whole life I focused on this career that was now out of reach. When I joined the Arthritis Ambassador program, I thought that it would help heal some of that pain by giving me a little piece of that dream. This summit allowed me to both experience even more of that dream, and really lit a fire in my soul to step up and truly be an ambassador. It has given me more contacts, more stories to share, more people to lean on and ask for help.

Want to see more pics? Click here!

Monday, May 19, 2014

WAAD Live Chat TONIGHT at 8pm CT

Hey gang!

Sorry I've been a little MIA lately. I've got a lot going on (that I'll go into more later, I promise!!).

I just wanted to drop a line and say that TONIGHT I'm doing a live chat/hangout for World Autoimmune Arthritis Day. It's $7 to get access, but there are a ton of resources there from booths (think companies like Creaky Joints, the Arthritis Foundation, AARDA, Wego Health and others around the world) to pamphlet-type deals to blog posts and more! There are a ton of live chats coming up in the next 40-something hours, and while I may be biased (since a lot of them are friends and awesome people) I think it's a great source of information.

My chat tonight is from 8-9pm CT. I'll be answering questions about everything, from sex to growing up with JA to advocacy and more, in the Meet & Greet Booth in Exhibition Hall 3.

Please check out this schedule for more people, but definitely make sure to check out the chats from Rochelle Lentini, Julie Cerrone, and Dawn Gibson just to name a few.

Hope to see you tonight!