JAFN & Meeting Mia

Posted on by Grayson
Today I had the wonderful ability to meet up with two other families and another young adult affected by juvenile arthritis. I met Nathan, a 10-year-old with uveitis, as well as Stephanie, a young woman about my age who was lucky enough to be working the JA Conference in St Louis this year.

We all shared stories about our experiences with JA and offered each other advice. It was a small group, but I think that helped for us to really spend time together. It was one of the most wonderful experiences I’ve ever had. When I was diagnosed, the internet was pretty new and to be able to connect with kids who I can identify with was really cool.

The other family I was lucky to meet was one that I’ve gotten to know better over the summer. Mia is a sweet little girl, a toddler, who has been dealing with Still’s for so much of her life. She is so cute, holy cow. Mia brought her mommy Megan and her auntie – who has AS – along for the ride too.

I have met a few other people from my blog in person, but not many. And no one that I have met has systemic/Still’s – or has been this young.

She is so cute, ohmigosh

The five of us (I brought the boyfriend along too) went out to lunch and had a really nice time. I think it was great for all of us. Megan’s sister and I were able to talk about dealing with changes as adults and the difficulties there, while Megan and I were able to talk about Mia’s rashes and fevers. And I think Mia just loved making faces at me 🙂

I cannot wait to be even more of a part in the lives of Megan, Mia, and their family. I think it will be a good thing Mia and myself. I will be able to watch the disease from a more outside perspective, which will be interesting. And maybe I can be kind of a mentor and help her through the tougher times (that I just really hope she doesn’t even get to face and I can be just a fun friend).

This all just helps to hammer home for me the importance of the raising awareness and keeping up the search for a cure. She is so young and full of life. I want her to be able to accomplish all of her dreams and not feel held back by her illness. On a related note, I’m applying for a job with the Arthritis Foundation that I found out about this morning. Ohh yeah!

Thank you Megan and Mia for coming down and visiting with us! If you want to learn more about their story, please check out their blog here.

#Rheum Blues

Posted on by Grayson

Oy.

The last month being back on Enbrel is tricky for me. I have torn feelings for sure. I mean, my swelling has gone down and this is clearly awesome. I enjoy being able to move joints. But I’m still in a huge amount of pain.

I have an appointment on Monday afternoon with my rheumy’s nurse practitioner to evaluate if this pain is a flare up of my Still’s or if it is instead myofascial pain or fibromyalgia or something else.

First off, I’ve had Still’s for 19 years (well, in a month) and I have never had a flare up without intense swelling. I just haven’t. And right now, I’m not experiencing that at all… with the exception of my bum left knee which, let’s face it, swells no matter what I do.

But now I’m torn. Is this just fibro? Is is MS and I just don’t want to know so I ignore the signs? Is it something worse? Am I turning into an elephant?

UGH.

I try to act like I’m okay and just push through like I’ve always done, but Sunday was the last straw… because I missed Missy’s blessing.

I knew when I woke up that the day was going to be trouble but not wanting to disappoint family or incur the fire of a thousand suns, I got dressed up anyway. I also really wanted to be there. I love this kid.

While we were at the church and waiting for family, my body started getting worse and worse. My fatigue kept dragging me between the living world and purgatory and I was in so much pain. It was all over. My hands were the worst but my hips, my neck, my ankles – everything ached. I just couldn’t do it. It took a lot of coaxing and reassurance from the boyfriend before I felt okay to say that I needed to go home. Even then, on the ride home I was so mad at myself. I kept going between sleeping and crying the hardest I have done in a long, long time. And the day was just so shitty. Wah.

My illness and I have grown up together. We give nods to each other when the other is in control, letting us know that we are around still and not to get too comfy. I have always pushed myself to keep going – run that last mile, climb that last step, dance that last dance. Stopping grad school was hard enough, but it was a sacrifice I was willing to make to stay sane and healthier. I thought that it would really help.

But I just keep getting sicker. And now it’s starting to negatively impact the role that I will have in my niece’s life. I want so much to be there for her – to help provide some things she might not get otherwise like auntie dates to go see new movies or stopping for ice cream on the way home without telling mommy (tee hee). I want to push her to excel, to show her that no matter what she can do anything and nothing can hold her back. I want to be a role model for her.

But how can I do that if I’m not there because I’m held back by this illness? How can we stop for ice cream if I can’t drive anymore cause it hurts too much?

I’m so tired of fighting myself all the time. My body just needs to figure its shit out already for cricket’s sake. But it won’t and I know that. It’s just hard to let other people see how bad things are getting for me. I don’t want to be the center of attention and I shouldn’t be. That’s not my life and I don’t want it to be. I want to just be treated like a normal person.

I can’t just be in constant pain anymore. I can’t take it. I need a break.

On a related note: half of one of my nine remaining oxy-whatevers plus an extra dose of etodolac on a full stomach makes me not throw up and also helped me to forget about pain for a while tonight. It was still there sure, but I didn’t notice as much and I so needed that break.

Also, had a kick-ass appt with my OT today on my hands. My hands are covered in bright blue kinesio tape! And she might even use me as a case study presentation thingy. Sweeeet.

Happy Birthday Lucy!

Posted on by Grayson

Lucille Ball was born today, August 6th, in the year 1911 – making today what would have been her 101st birthday. After her father’s death, she and her brother went to live with their grandparents. From a young age, she loved the theater. She and her grandfather would go to shows together. Eventually she decided to break into the business and attended drama school like a boss.

She adopted a stage name – Diane Belmont – and got parts in a few Broadway plays as a member of the chorus in addition to modeling for Hattie Carnegie. It seemed like Lucy was beginning to really make a break into the business. But her life was about to change forever.

While getting fitted for an outfit to model at Hattie’s shop, Lucy began to experience a horrible burning pain in her legs. Shortly afterwards, she was in bed for several days with symptoms akin to pneumonia or a bad case of the flu. Her doctor sent her to an orthopedic clinic where rheumatoid arthritis became a part of her life.

At the request of the orthopedic doctor she saw, Lucy began treatment with what she called some kind of horse serum. Once her money ran out, she went to live with her mother and stepfather, who decided he needed to lecture her on taking care of herself. Clearly the stigma that chronically ill people did something to bring on their illness is nothing new.

Her mother, however, was more supportive. She spent hours and hours trying to console Lucy, from cheering her up to trying to rub away the aches in Lucy’s legs. Over time, Lucy’s pain subsided enough that she could try to stand. Not only was she weak, but Lucy’s RA had already caused a deformity – her left leg was now shorter than the right and turned sideways. In order to try to correct it, she began to wear weights in her shoes – something she continued to do for years.

In all, Lucy’s horrid onset episode of RA lasted for two years. She had to learn how to walk all over again. There was no returning back to the days of being a chorus girl. Instead, Lucy returned to modeling for Hattie and was able to even become a Chesterfield cigarette girl like a boss. She decided that Hollywood would be the next step.

Lucy had parts in many movies during the 1930s, earning her acting street cred through walk-ons in productions from the Marx Brothers to the Three Stooges. In 1940, she met Desi Arnaz in the movie “Too Many Girls.” Their relationship had some rocky points and eventually ended in divorce, but Lucy and Desi were always close. After all, he helped make a lot of the business decisions that ended up making her a household name.

Together, Lucy and Desi built an empire in the television world breaking all kinds of records and being the first to do many things – including talking about pregnancy on television. She became the first woman to run a television production company after her split from Desi.

Growing up, I had no clue about Lucy’s RA – heck, I didn’t even know up until the last few years. Through my sleepless nights dealing with this itchy Still’s rash and pain that wouldn’t stop, I loved watching Nick at Nite and the wonderful old shows on it as a distraction. My favorite were Get Smart, Bewitched, and I Love Lucy. Humor is one of the best ways of dealing with pain for me, and Lucy was a part of that for me.

Going back and watching the show now, I’m amazed. During production of the show, they specifically wrote it to try to avoid making Lucy stand or walk too much – especially avoiding camera angles that might show her difficulty with walking or cause her more pain. It’s amazing to watch how they worked it all. She was so funny and so brilliant despite the fact that she dealt with so much pain. To say that she is an inspiration to me would be possibly the biggest understatement ever. She is so much more than just a funny face or a famous redhead. Her perseverance and tenacity serve as a guide for me in how to live my life. I only wish that she hadn’t died on my first birthday so that I could have met her and spoken to her about her journey.

Here are some of my favorite pictures of the gorgeous Lucy. The ones where she is blonde are from around the time her RA hit or just before.

 

So you have a dragon: living with Still’s Disease

Posted on by Grayson

Hooray for dragons!

Dragons are elusive creatures, but when you find one you have to really put your all into the fight. It’s no wonder why Still’s Disease is also referred to as ‘the dragon.’

As of 2023, Still’s Disease is one label that covers what was formerly known as systemic-onset juvenile idiopathic arthritis (SJIA) and adult-onset Still’s Disease (AOSD).

I live with SJIA and have since mid-November 1993. Honestly, I barely remember what it was like to be ‘normal’ but I consider this a gift. I’ve watched so many people be completely blindsided by a diagnosis later on in life after they’ve established running or weight lifting as their favorite activity. Watching them struggle with learning their new limits just breaks my heart. I didn’t have to go through that falling ill at 5 years old – I learned my limits while I learned how to do normal things. My limitations, for the most part, are about what they have always been. I am very lucky.

So what is Still’s anyway?

SD is a form of autoinflammatory arthritis that is named after a pediatrician, Sir George Frederic Still. His doctoral thesis was actually about Still’s, and he was the first to describe the phenomenon. He noted that the children afflicted with the disease not only presented with arthritis but also high-grade fevers and a funky rash. Over the years, people starting also noticing these symptoms in adults, thus ‘creating’ Adult-Onset Still’s Disease (AOSD) as a classification.

About 95% of children with this condition present with the rash but only 85% of adults do. The rash can itch, or it can just be there. It also seems to present more with the fevers, though the rash can be brought about manually – by clothes, rubbing against things, and even hot temperatures and water (i.e., showers).

This wasn’t post shower, but you get the idea.
 
In addition to these symptoms, those afflicted with Still’s also face more organ involvement, particularly those involved in the lymph system like the spleen and tonsils. Children with SD also face a much higher rate of disability and disfigurement due to the severity of the disease. However, unlike other forms of JIA, Still’s affects all genders equally and actually has a lower chance of causing uveitis (about 1%). Still’s makes up about 10% of the 300,000 children with JIA.
What do you mean by autoinflammatory arthritis?
In most forms of arthritis, the primary cause of the illness is a malfunction of the immune system. The body controls this system via the lymphatic system which circulates lymph fluid throughout the body similarly to how the circulatory system pumps blood. Instead of using arteries, the lymph system uses lymph nodes and trunks.
If you have ever gotten a nasty cut or scrape, you have seen your lymph system work in producing scabs. Essentially, the lymph system cleans up the body. At lymph nodes, lymph fluid is filtered and cleaned before it is returned to the bloodstream. Nodes are also responsible for the production of lymphocytes which attack toxins and viruses in the body once they reach the nodes. The thymus, located above the heart, also helps in the production of certain lymphocytes known as T cells. The spleen also helps in the function of the lymph system, filtering blood similarly to how nodes handle lymph fluid.
In a regularly functioning body, all these pieces of the lymph system help to protect one from illness, infection, and some tiny foreign objects. However, in a body with a malfunctioning immune system, immune response is – as you might expect – crappy to say the least.

Instead of filtering and removing toxins, the system instead can introduce even more crap at any given point into the system. Think of it like a combination garbage and milkman but very confused. He should have called into work. Instead of leaving healthy milk and removing garbage, this dude gets all turned around. He misses stops, drops off garbage instead of picking it up, and steals all the milk. Here’s the best part – since the lymph system involves bone marrow, blood, lymph fluid, and more, there is no point of refuge from this guy. No spots are left untouched.

Your body keeps getting these messages that something is wrong, and sends T cells and white blood cells out to protect and serve. They’re on like super-secret protection status, like a super protective parent. Anything that a normal person might do – like running for example – is seen as a huge problem. Your immune system says “Whoaaa, hold up there! We got an invasion on our hands!” and calls for reinforcements to protect your knee… but then they get there with all the troops and the only thing there to attack is the knee itself. Swelling leads to immobility of the knee, which can be painful because then you rest the knee not realizing that the knee is a self-lubricating joint – resting too much then makes it hurt more.

Voila, welcome to joint damage!

Treating this disease

It all sounds kind of easy to explain, but the problem in finding the best, most effective treatment lies in what causes the immune system to freak out. And this brings us the different classes of drugs we have to treat different kinds of arthritis, from TNF alpha inhibitors to interleukin inhibitors to chemotherapy medications.

Mmm bio-hazards.

As of 2020, there are a few medications approved to treat these conditions. There was only one medication actually approved by the FDA to treat Still’s as of 2012 – tocilizumab or Actemra. It is an IL-6 inhibitor given by infusion usually about once a month. Thankfully, there are a few other options. Canakinumab (or Ilaris) is a newer medication that targets the IL-1 beta protein. It’s usually given by injection once a month or so. Anakinra (or Kineret), another IL-1 inhibitor, is given by daily injection.

Some people respond well to other arthritis medications such as Enbrel, Humira, Methotrexate, and others. That’s especially true in combination with one of the above medications.

Some very very lucky people get to experience remission with Still’s. However, the only statistic I have found – specifically for AOSD – isn’t very comforting. Only about 20% are expected to reach remission. Even then, once you get there, you might not keep that for very long.

There are a number of theories for how to make a ‘cure’ for autoimmune arthritis diseases, probably the most common one involves the use of stem cell therapy. There have been a couple of small studies done with stem cells in other countries, obviously, due to odd feelings about these cells in the US. A large percentage of people experienced a flare-up and worse disease from the process while a slightly smaller number did achieve eased disease activity – for how long is yet to be seen. A very small portion… died. The process is very involved and difficult for the body to go through.

While I maintain hope that stem cells may hold the answer to kicking this disease’s butt, the odds are just not in our favor right now.

Living with this

I’m not going to sugar coat it and say that living with Still’s is easy or awesome because it is entirely too far from the truth. With the right mix of medications, physical therapy, and a great support system, living with this condition can be manageable.

In 2015, I started Kineret. As of the end of 2023, I’m still on it. It’s done wonders to help control the symptoms I experience. In fact, it’s done so well that I sometimes miss my SJIA symptoms. That’s a head game I never thought I’d play.

The best advice I could give someone with this condition would be to value yourself. It is so so easy with how society treats disabled people for us to devalue ourselves. Ableism is a vital thing to learn about and unpack.

Learn as much as you can about this condition. Figure out what you need and want out of life. Then try to think about how to make that happen. I play hockey and perform burlesque now, two things I never thought would be possible.

July is Juvenile Arthritis Awareness Month!

Posted on by Grayson

Ahh, I have had a lot of craziness going on you guys! I’m so busy this summer. It’s great, but it also means my fatigue monster is super strong so I’ve been letting things slip over here. I’m sorry 🙁

But hey! July, huh? Did you know it’s juvenile arthritis awareness month? Well, you do now!

At 24 years of age, I know I’m not a juvenile anymore… at least physically 😉 That still doesn’t change the fact that I have a form of juvenile arthritis. So understandably, this is something that I really support. The word arthritis entered my life before I even had a chance to learn names of bones or even my colors in Japanese. It is very tough to grow up with one of these illnesses and not know how to explain how it feels to others. I still find myself running into this problem, often making up ridiculous (though accurate) descriptions like how it feels sometimes that my bones are filled with gel they use to make ice packs instead and it can’t decide if it wants to be a hot pack or an ice pack. I know how it is to get teased through school, to be bullied because you are different and physically otherwise capable. And I know what it’s like to transition into the grown up world – finding your own healthcare, navigating employment options and collegiate activities. It sucks. But you know what? The other kids that I know that grow up with these diseases too… well, they’re the toughest bunch of kids I know.

The rest of this month, I have some great things to share with you guys. All that time on hiatus hasn’t been exactly spent not thinking of you 🙂  Coming up, I want to focus on children dealing with juvenile arthritis – posts on dealing with schooling, with bullies, etc. But I mostly want to focus on the awkward transitiony stages – transitioning from child care to adult care, navigating insurance on your own, explaining your illness to jobs and professors, etc. I’ll also be posting tips on how to do every day things easier, like dry shampooing instead of hopping in the shower on high disease activity days. And I’m even working on a video! Or maybe a few. Whoa!

For now, I’d like to share some great books and further sources of information on arthritis in case you are interested. These might not just be juvenile centered, but I have found them to be helpful for me.

  • A Primer on Rheumatic Diseases by the Arthritis Foundation – This book covers essentially every disease in the rheumatology field as you might expect. It has some great information on Still’s diseases as well as other forms of arthritis that I didn’t even know but that made so much sense. Very very helpful, but keep a dictionary handy. Plus, um, did you see you can buy it for like a cent used? Seriously, get it.
  • A book on anatomy – Just find a generic classroom copy, preferably one that focuses on the whole body and not just the skeleton. Did you know that your tonsils are a part of your lymph system? I didn’t until I did my anatomy research and now I know why I get sore throats!
  • Out of Joint – This book is about the journey of a young mother who falls ill with rheumatoid arthritis. Her story is not only comforting for its honesty and truth but also inspiring for her strength and character.
  • Partners in Healing – This book can be very helpful for those who need care as much as care givers. It offers care givers a unique peek into our minds though, and helps them to understand what they can and cannot do in order to help us on our journey with chronic illness.
  • This website has a few documents on making the transition from a child to an adult when it comes to healthcare.
I’m going to try to keep things more generic this month instead of focusing so much on Still’s just in light of JA awareness but I will probably have a post specific on Still’s research I’ve done and a comparison between AOSD and SOJRA.

Oh vacation, I miss you!

Posted on by Grayson

We got home Sunday night from our vacation a little before 7 pm. And we managed to get everything unpacked in record time! It is really nice to be home, but I have to say that I miss being on vacation already. Monday was kind of a lazy day. We hit up the zoo and saw their new tapir and the baby harbor seal! It’s kind of my favorite place. But I had to go back to work today, boooo. And between tomorrow and Friday night, I get to work 30 hours! But it’s okay because I asked for the extra hours. That way, I only use about a week’s worth of paid time off.

Oh my gosh though, so much to tell about my vacation!

So we headed out of Wisconsin Friday morning the 15th and made it all the way to Hudson Ohio. It was a long drive, but that was our plan and we had a hot tub in our room because I thought I might need it. I didn’t need it as bad as I thought I might but it was comfy anyhow 🙂

Saturday the 16th, we met one of my awesome friends Heather and her hubby for coffee/breakfast. We spent like 2 hours talking and I feel like we could have talked the whole day away. It was awesome. But alas! We had Gettysburg to get to! We stopped at Montezuma’s for dinner and by the way, if you are ever in the Gettysburg area you have to go there. It’s like a requirement that I am making for you right now. Why? Because they had amazing food! No alcohol, but that’s okay. They legitimately had the best enchiladas verdes I have ever had – and I know my delicious Mexican food. I have so many craving for it now 🙁

We pretty much spent the next two days climbing around the Gettysburg battlefield. It was amazing to see how much of it has remained the same, thanks to being a park. Seeing where so many, including brothers from the boyfriend’s family, fought and died (including one of those brothers) was really solemn and yet super cool. Sunday night we went on a ghost tour and I got some good pictures of orbs. The boyfriend keeps picking on me about them though 😉

Monday night we ended up in part of West Virginia after leaving Gettysburg. I also hit up my Enbrel that night, which was good because I was worried my gigantic lunchbox cooler wasn’t keeping it cold enough. The next day? I had no side effects. It was awesome. Tuesday, we hit both Antietam and Harpers Ferry. Antietam gave me some creepy vibes to be honest, but what can you expect from the nation’s bloodiest day in history right? We didn’t stay long at Harpers Ferry, but that had a lot to do with the fact that it was about 90 with crazy high humidity. We headed back to the hotel, definitely showered, and called it an early night.

Wednesday, we did something super awesome (yeah I know the whole vacation is super awesome – sssh 😉 ) – we drove through the Shenandoah Valley. There were kind of a lot of bugs so being outside and still wasn’t a fun option, but driving with the windows down up and down the mountains was so cool. We ended up in Charleston, WV, that night where I was supposed to meet up with a friend but I got hit by the fatigue bug and lazed around most of the night.

Thursday we went to The Wilds, an amazing safari park in Ohio. They had rhino babies! They are the only place in the world with fourth generation rhinos. They are working on great conservation efforts, including introducing species into the wild after they have disappeared. Our guide was pretty cool and I got some awesome pictures. We drove a little more and spent the night in Columbus.

Friday, we headed on up to Dayton where we hit up the Wright-Patterson Air Force Base. Yours truly got to hang out on Kennedy’s Air Force One… well, and Eisenhower’s and FDR’s and Truman’s! And we got to see a bunch of experimental aircraft in addition to a B2 bomber and space things! Then we drove off to Cincinnati, where we stayed in a fancy hotel and caught a Reds/Twins game… well, most of it. We left early and then by the time we got back to the hotel I had swollen fingers that I could barely bend 🙁

And that’s after showering and getting them a little less swollen. Wah, wah.

Since we were right across the river, we drove into Kentucky just to say we did Saturday. We hit up a great deli with gluten-free bread and an awesome gluten-free bakery. Then we made a lot of headway on driving, making it all the way to Springfield, Illinois! And then I got a fever and rash all over! Hooray!

My armpit is actually tan because I suck at putting sunscreen on my armpits apparently.

Sunday morning, we visited the only home Lincoln ever owned and the Capital building where he worked – and where his body was displayed on its way to Oak Ridge Cemetery where his tomb is located… and where we stopped next. And then we made it home, to sweet sweet Madison.
It’s nice to be back and to sleep in my bed with more clothing options and a fridge for my Enbrel. But I love going and doing cool things and I miss that sense of just do whatever we feel like. At least now with my schedule change at work, I will be home more in the evenings and the boyfriend and I can do more together like make dinner. Mmm dinner.
So that was my vacation! It was awesome and I was silly to be so apprehensive about it as I was before we left. I can’t wait until our next super awesome adventure!

More Scribbles

Posted on by Grayson

I wake up to the sound of the deadbolt turning. All at once I’m comforted and oddly upset. It’s 630AM. On a normal day, I’d be hitting the snooze on the alarm that isn’t set right now so I could eventually get up and take him to work. But today is Saturday. We are both off from work, but he is gone spending time with his dad. They don’t do it often, so I’m glad he is going. And yet, I hate when he is gone.

I can’t go back to sleep. There are storms raging outside, the booms lighten the otherwise gloomy sky. It keeps raining. It feels like home.

I decide it’s time. I change and tie my keys into the thumb-hole on my running shirt. This is crazy, I shouldn’t be doing this. Not only because of the storm, but because of my health and the lack of him being around. I could get hurt and no one would know or know how to help me. I tie my shoes in stages – tight, tighter, tightest. It’s still raining outside, but only light mists fall now.

I run between bus stops, then walk. I run downhill and pick up speed. I walk now, watching the lightening dance in the sky. It’s so beautiful. I should be afraid of it, but I’m not.

___

I get on the treadmill, my familiar foe. I walk slowly, my joints gently releasing what feels like creaks but make no sound. I increase speed. I set the timer to count up, marking my time as an accomplishment instead of a fraction of a suggested time.

Five minutes.

I increase the speed to a job. Suddenly, it’s like I never stopped running. 30 second, 60, 75. I have to stop – not because I can’t breathe or because I’m going to fall, but because my thighs have found each other unpleasant company. If I had pants, I could have gone longer.

I really miss running. It’s like being alive. Nothing else makes me feel that way.

Pages from my notebook

Posted on by Grayson

There are some things that I don’t even share with you guys. Weird, right? I share pretty much everything with you. So then I thought maybe I should share what I don’t share and turn it into what I do share.

Oy, I’m dizzy from that sentence. Here are some random scribblings from my notebook:

I am not my flesh and bones. They fight themselves. I do not have to fight myself and make it worse.

There is a civil war going on in my body. Humira was winning for a while, but began to fight a losing battle. Time for Enbrel reinforcements! Abraham Lincoln said that a house divided cannot stand. Some days, I hardly can. Like Lincoln, I will not give up the fight.

I am not my illness. It does not define me… But if I have no memory of a me without illness, then who am I?

Why do I get to suffer? Why does it always last? Will I ever get better? What is ‘better’ for me anyway?

It is so hard to be patient – with the situation, medications, myself. I virtually always had this. Why can’t I get used to it? Why can’t I accept it as my life? Why can’t I just be patient instead of a patient?

I do not push myself when I should, and I push too much when I shouldn’t. Work on this.

Forgive yourself. It is not your fault. Illness isn’t caused by anything you did and in no way did you deserve it. You were five. About the only bad thing you did was blame Kelsey for things you did so you wouldn’t get in trouble… Although, that was pretty horrible. Talk to her more.

I fear my condition getting worse. I’m afraid that I will begin to lose the control I do have. I am terrified of needing ‘help’ – assistance devices, help getting dressed, help showering or bathrooming. Definitely most afraid of the last one.

I feel scared about losing my will to fight for myself and having to ‘give in.’ I have come close so many times. What will be the last straw?

I fear being alone because my illness becomes too taxing on myself and others. I’m afraid of dying along and not cared for in a horrible nursing home like my great grandma Kay [who died of complications from MS]. She deserved better, and I deserve better. I don’t ever want to be in a nursing home, no matter what else happens. I miss her so much. I wish I could have gotten to know her as an adult. On the other hand, she’s not hurting anymore, not confined to a go-cart. Jeez, I’m jealous.

My illness does not define me. But it does though. It is why I do what I do. Without it, how would I have turned out? I probably would have ended up playing softball and doing track, going to Harvard like in my dreams, and studying law or medicine. Instead, I’m here. I’m on this cold call floor captioning calls for the deaf and hard of hearing. I live in a great city with good insurance now. I have a wonderful boyfriend and amazing friends I probably never would have met. So… maybe it’s worth the pain?

Normalcy.
There is no normal anymore, just different circumstances surrounding what used to be the nuclear family. Why do we try so hard, then, to be normal?
‘Normal’ is a house with a two-car garage and a pool. It is marriage and 2.5 kids and a dog. It is certainly not arthritis, not steroids, not weekly injections to alter my DNA.
The only normal thing about me is that I have all the parts, all the building blocks that make up a woman. Why do I try and want so hard to fit in when I was born to stand out?
Because ‘normal’ – as hard as it might be to achieve – has got to be easier than this… right?

It’s a Miracle!

Posted on by Grayson

Oh Enbrel, you make me have amazing dreams… and delusions of grandeur that I’m okay with having.

Wednesday, I had my appt with the NP at my rheumy’s office to clear me for Enbrel again after my debacle with my not-so-lovely sinus infection. And I had an amazing time. It’s not just because I love the office and everyone there, or because the NP is super sweet to me.

It’s because I had no swelling anywhere.

Let me say that again.

After 18 and a half years of swelling just about every day, I HAD NO SWELLING ANYWHERE.

Right? The fuck?

I was on the verge of tears in the office and everyone could tell. I just kept saying “okay, this is really weird” and “no, um, actually that doesn’t hurt at all.” My sed rate was 18, 18! My labs were all within normal ranges too.

I would seriously be lying if I didn’t tell you that I cried in the car before I drove home. This couldn’t have come at a better time. Mentally the last little while I have been… fragile is maybe too nice of a word. I have been crying myself to sleep, crying at work, pretty much just crying. I thought maybe it was the combination of reading The Time Traveler’s Wife and letting myself have my semi-annual full-on period. But I think it was a little more than that. I didn’t bring it up with the NP but I did indicate it on my pre-appt worksheet so there’s that at least.

In my last post, I mentioned that I had been able to run and hit the gym. Grand total in the last week – about 4 minutes of running, a good amount of fast walking, and two trips to the gym. And despite bits of chocolate sneaking into my diet, I have been pretty good at sticking to paleo foods. Last night I turned down pizza from my favorite GF pizza place right down the road for a salad. This is huge. Pizza is my favorite! But this also may have something to do with the fact that last Saturday I had a nasty migraine and threw up their pizza… which tasted the same coming up. That was weird.

So anyway! Enbrel and I got busy with each other last night. I’m glad to have him back in my life. We kicked Arava out of our med bed. Three’s a crowd, right? I needed this good news so much. I felt like I have been trying so hard and getting nowhere, on a gigantic treadmill from the ‘fuck you’ company. Now I feel like I’m getting somewhere, somewhere awesome.

In two weeks, the boyfriend and I will be off on our vacation to trek Civil War history – Gettysburg, Antietam, Harper’s Ferry, and the Shenandoah Valley! Needless to say, this Enbrel and happy news will (I hope!) make this trip easier than my mind keeps thinking it will be. My meds and my House MD cane will be trekking around in history mud. I’m pretty excited!

Lost

Posted on by Grayson

It’s how I feel. I should have been graduating with my master’s this year. In reality, that wouldn’t have happened cause I didn’t have enough Arabic under my belt and it would’ve taken 4, but most people get those done in 2 years. I should have graduated, should have gotten a kick ass job. Instead, I play games on my computer when I’m not at work and not playing ukulele. Instead, I research and read medical shit like my malfunctioning brain will find a cure that experts have missed, hoping against all odds that I’ll magically find a cure for all this shit that is arthritis.

If I was okay with all this, it’d sound a lot like a John Lennon song. I thought I was okay with it, I really did. I mean, I just tried out to be on Jeopardy. Clearly I’m smart… but I feel like I’m not using my smartness and it’s starting to fade away, never to be heard from in short bursts again. It’s been like this since I came back from Chicago. Yay, I can recite meaningless trivia. But what am I actually doing?

Other people my age (and younger, oh heavens) are well on their way to career-dom, to further schooling, to a big house with a 2-car garage, 2.5 kids, a pool and a dog. And I… I’m just sitting here half-assedly watching a baseball game and commenting on the newly changed facial hair of one of my favorite players. Is this how it’s going to be forever? Am I going to feel like I do nothing ad infinitum? If so, shouldn’t I be happy with that? I’ve pushed and pushed myself so hard for so long, shouldn’t I feel like I need a break? Like I deserve one? Should I be like Ron Livingston in Office Space and just not give a fuck anymore?

I just dunno.

I know I do things. Clearly, I do things. Every weekend this month has been full of doing things, of WAAD and Chicago, of walking for arthritis and hitting up the Enbrel pusher, of vomiting from migraines and seeing friends. I pre-write blog posts and don’t post them. I should be raising more money, raising more awareness, doing something more meaningful and helpful for the population at large.

In happier news, I went running twice this weekend. The bursts didn’t last long, but I did it. I ran. And I didn’t feel like death afterwards. Yesterday I ran for over a minute straight and could have kept going if it were not for my damn chubby thighs meeting each other unpleasantly. Maybe working out more can make its way into my busy schedule of the House MD game on facebook and ukulele chords. Maybe then I can feel a little more like I’m doing something.

I probably won’t though. Sigh.

Someone, anyone – light a fire under my ass and get me going?