Year: 2014

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

Posted on by Grayson

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.

Interview with a Pediatric Rheumatologist

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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!

Light: A Window to Pain in the Brain?

Posted on by Grayson

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.

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

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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.

Wedded Bliss & A Crazy 2014

Posted on by Grayson

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.

A lot of changes

Posted on by Grayson

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!

2014 Arthritis Advocacy Summit Recap

Posted on by Grayson

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.

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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!

WAAD Live Chat TONIGHT at 8pm CT

Posted on by Grayson

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!

A Day in the Life

Posted on by Grayson

My alarm is set to go off at 5:50, just so I can hit snooze several times. When my alarm goes off again at 6:10ish, I’m generally awake enough for the pain I’m in to really hit me. I do some stretches in my sleepy snooze state to try to loosen up. I’m finally up about 6:30. I hobble to the bathroom and play on my phone to wake up. I take my meds and do some dry shampoo (there’s no way a shower is happening in the morning during winter y’all, and sometimes this doesn’t even make it) before I head back to the bedroom to psych myself up to pick out clothes and get ready for work. I may use my biofreeze if I have particularly bothersome joint (i.e., if I had a saw, that joint would be history). I make some coffee and throw together my food for the day – some protein bars and greek yogurt and usually something else healthy and/or tasty (like some GF bread or pastries, or hummus and chips).

I head out to catch my 7:15 bus around 7:07ish or so – earlier if it’s icy or snowy, because my current apartment complex isn’t maybe the best at clearing any of that. Hooray. Our building is behind two others, and I usually go through one of the others to get to the bus stop so I’m not outside in the elements as long (read: I live in Wisconsin – ’nuff said). Since my bus starts its route at our complex, I’m able to catch one of the front disabled seats. It makes it so much easier for me to get around without having to whip out my cane and feel embarrassed.

Once I get to my stop, I have to walk a couple blocks and a few sets of stairs to make it up the hill and into my office. I’m usually in early, so I spend time with my work BFF before I’m actually scheduled to start. I usually am pretty into slurring my speech in the morning – something that much be a side effect of either having to be here or a medication, but I’m unsure what. I’m pretty tired in the morning and not necessarily here if you know what I mean. I spend most of my time on the computer, balancing our department credit cards and handling travel arrangements and all sorts of other things. When I have lulls in my day, I spend time working on our social media. Throughout the morning, I eat 50-100% of the daily value of protein.

By the time lunch rolls around, I’m pretty tired already. My biggest consolation is that for an hour I get to choose what I do, and at the end of that I have 3.5 hours until I get to go home. I write blog posts, participate in twitter chats, and just generally work on advocacy issues in addition to checking out my own social media (now that I have my wedding 85% planned anyway!!). I’ll make sure to check my calendar so I know I’m not missing any chats or things I’ve promised to be a part of. When it’s nice out, I try to go outside for a little bit of lunch, but with our lovely cold temps lately that’s not been an option really. On campus, they don’t do a great job of taking care of the sidewalks either so hooray for that. Every other Friday, we have faculty/staff meetings at lunch (which I don’t usually eat at) so I eat early or, more often, late. Lately, I’ve tried to cut back on caffeine, but I have to have some by lunch or my migraine/neck/back issues go crazy.

After lunch, I tend to sort the mail and take care of any additional packages that may have been delivered. I also start up my music if I haven’t already. It’s a huge part of what gets me though the day. We have office support staff meetings every other Monday at 2, so I’ll get ready for those when they happen. If I have any travel to arrange, I try to make sure I get it done in the morning as it’s usually less busy. I try to just kind of get random small things taken care of after lunch and save the bigger projects for the morning. Lately, at some point in the day (near lunch) I have to take a muscle relaxer. My neck/back have been huge issues lately and I’m not sure just why as of yet.

By the time 4:15 comes around, I start to put away our credit cards and keys and get ready to close up shop so I can be out of here at 4:30 and head down to the bus stop. There are more buses in the afternoon that can get me home than in the morning, but since my quitting time coincides with most people’s that also means the buses are more full. If I’m lucky (and I usually am) I can snag one of the disabled seats and not be forced to stand or crawl over someone.

By the time I get home, I’m usually fairly tired. T doesn’t get home until about half an hour later, so I’ll use the time to play video games or do Truvio surveys or watch TV or other things. I may eat a protein bar or a bowl of cereal, as I’m often pretty hungry about this time too.

I wish I could say that I was sticking to my running regime to train for my 5k, but lately I just feel so awful I spend most of the night on the couch. Recently I’ve begun to wear a pedometer and realized that I walk an awful lot more than I thought – a half mile by the time I get to my office in the morning alone! My new drug (Cimzia) is great for joint pain but I find my systemic features are more prominent than they were when I was in the grey area of no drugs. Maybe I’m just able to focus on that more as my joint issues are calming down. Who knows. Mentally, though, I’ve been able to handle paying more attention to things and have caught a number of mistakes made when I had high pain (i.e., when my Lyrica was tied up in the prior authorization game and no one was doing their job to move it forward). It’s frustrating to see this affect my job performance as well as other aspects of my life.

I’ve also been working on a number of projects lately that are keeping me pretty busy. I recently served on a JA Youth Panel for my local chapter of the Arthritis Foundation and I’ll soon be in DC for the Advocacy Summit, so I’ve been doing a lot of research and putting a lot of information together for all of these things in addition to planning my wedding. I’m not sure people understand how much effort I put into any of these things – mostly because I tend to not brag – but with the panel I spent basically November to the morning of the panel on February 22nd reading and creating lists and asking other people to share ideas and listing points to hit. I seem to be involved in a lot of these types of things, and while many may regard them as special events, they really are a part of my everyday life. Between my research and spoonie chats (every Wednesday night 9-11 ET on Twitter – use #spooniechat and follow DawnMGibson for info), there is some special thing I’m working on.

I take my bedtime cocktail of pills at 9pm so that I can hopefully be asleep by 11ish. Some nights I fall asleep before I even make it to bed and T has to get me coherent enough to get to our room. Sometimes it’s hard to find a comfortable position, especially with my neck and back issues, so falling asleep takes longer even though I’m ready to go. There are nights, though, where I can’t sleep due to pain but can’t take more pills if I want to work the next day. Being awake with nothing to do but think is very hard on chronically ill people. We think about everything we fail in and about all of our fears. We wonder if our new symptom is a side effect of a med or are we doing something wrong or do we have yet another illness. I personally think about death a lot due to having lost friends to their respective diseases. I worry about the future a lot, and it’s hard to turn that worry off. It’s hard to operate without enough energy/spoons. It’s hard to face these big issues alone – and to be in a state of mind where you seem to face them every day.

The great thing, though, is that I know the chronic illness community gets it. And that makes all the difference.

Why Do You Share About Your Illness Online?

Posted on by Grayson

This blog post is a part of a blog carnival for Restoring Quality of Life: the official blog of the Partnership for Palliative Care. You can find the call for submissions here. Also, hey, do you want some mood music? Click play below so you can listen while you read 🙂


I fell ill in 1993 when the internet was just starting to be a thing and there wasn’t really anything out there for kids or adults with rheumatic diseases. Now there are resources – but not enough and not many from the viewpoint of a sick kid growing with their disease. I thought my little family (my sister and mom also have Still’s) was an anomaly. I never knew fibromyalgia was a thing either, or that for me the onset was around the same time as the Still’s hit.

I began blogging as a way of explaining to him what my disease was like, what it could do, and what I felt like. It was a way to share things with him that, even now, can be hard to share face to face. It was a way, too, for me to explore my illness as an adult. I didn’t know many of the issues that could happen with me, and quickly learned that some of the issues I did know about were outdated. I explored medications and, finally, doctors. I’ve gone from a college sophomore in every sense of the word to an educated woman helping to educate others. All of this happened because of this blog.

When I was in college, I made it a point to not share that much about my health – our officiant for the wedding (one of my favorite college professors) had no idea until recently that I’d been sick virtually my entire life. I grew up as a child with others making fun of me for being different, and I wasn’t about to subject myself to that as an adult in a new and strange land (frozen Wisconsin). As I became more involved in health issues and activism, it became harder for me to hide my disease – I also stopped wanting to hide. I began to meet others who, like myself, have dealt with Still’s specifically or other rheumatic diseases. I began to really learn that I wasn’t alone. I had a place where I could go to ask questions of the more experienced patients and learn what was really normal for us and when it was time to go to urgent care. I’ve also played those roles for others – counselor, friend, priest, nurse, etc. I’ve helped track down resources that have saved the lives of virtual strangers, and that creates a feeling I can’t even begin to put into words. I have been saved in a similar fashion, and I can’t begin to express my gratefulness for that.

2012 was an amazing and terrible year all together. My sister had a baby in August. Along with Missy came the fears a chronically ill mother or other relative faces – will that baby be sick like me? Will I make the right choices for her? Will there be treatments that work? Will there be doctors who have a brain? I began to ramp up my advocacy to help that. I wanted there to be resources for Missy if she does get sick, and I wanted my sister to know that everything will be okay. In December, I lost one of my closest friends to an infection that should’ve been caught easily, but wasn’t as a result of gross negligence on the part of doctors. I grieve over losing Laura every day, but I also know that it brought me closer together with some amazing people – and it fueled that fighting spirit in me even more.

As a result of some of my work the past almost seven years, I’ve had the luck to experience talking to politicians – and will be going to the Arthritis Foundation’s Advocacy Summit at the end of March to do so on a larger scale. I’ve been able to help legitimately make changes that are starting to make differences in the lives of others on a larger scale. And, damn, that’s an addicting feeling.

I blog for myself, for my mental health – because it saved my life. I blog because I know it makes a difference to people. I blog because I want a little girl to know she isn’t alone – and I want to be a resource so that when she starts dating and looking at colleges, she has someone to talk to about all of that. I want her to know tips and tricks on how to look and feel more normal. I want her to know that she should be as educated as possible on her disease(s) because it might save her life. I want her to be able to talk openly with a significant other on their intimate lives and how to improve that so she avoids falling into the divorced-due-to-illness statistic. I want her to know her rights. I want politicians to know what’s happening and how they can help change things for the better. I want to raise awareness in the public over the issues we face, both as children and as adults. I feel like I could go on forever about this.

Why do you share about your illness online?