Sunday, December 30, 2012

2012: A Year in Review

2012 was an... interesting year for me. It's not like it was horrible - and yet there were definitely times it was. It has been a tough year.

In January, I officiated a wedding between two good friends. It was wonderful to be a part of their special day. I always knew they would end up together. I also had a good ophthalmology appointment, thankfully, after dealing with some more uveitis off and on in the end of 2011. I also started MTX injections to see if I could handle them better than the pills to help boost Humira. It seemed like it was okay, until the back spasms that still plague me today started and the MTX had too much of an affect on my energy levels and my body function. I was coming to terms with the fact that this semester would be my last in graduate school, as my illness was worsening enough to cause too many problems.

In February, I learned that I was on the verge of getting fired because of misunderstanding poorly explained attendance policy information at work. I brought a note from my rheumatologist about the flare up nature of my disease and stated that I shouldn't be in as much trouble as I was because I wasn't missing days to go dick around or go to concerts - I was missing days with illness. I got to play the waiting game. I also saw a PT a number of times for my left knee and back.

With March came the JAM walk in Minneapolis at the Mall of America. We took a long weekend and drove up there, enjoying experiencing the shopping and food nearby. I also had been taking Arava instead of the MTX - but even with that, Humira was definitely not working.

By April, I had run out of my free shipments of Humira from Abbott anyway and it was as good a time as any to make an appt with my rheumy about switching to Enbrel. Even though we decided on switching in April, it would be May before I could start it. I set up a new GP since having one at the university I was no longer attending wasn't helping anything. I also got to see one of our favorite musicians, Eric Hutchinson, right before my birthday.

May brought with it another arthritis walk, where my sweet boyfriend got an 'arthritis hero' sign for me. Doing the whole walk was really tough, as my hips were definitely not excited about a 5k. I had a bone density test, which came back perfectly normal. I participated in the first ever World Autoimmune Arthritis Day (WAAD) by preparing a number of documents and a presentation on living life to the fullest with autoimmune arthritis. The same weekend that was going on, the fiance and I got to go try out for Jeopardy. I have literally been training for that since I was very little and it was great great fun to be a part of it. I had to stop Enbrel after my first injection for about a month due to a sinus infection that got so bad as to swell my entire face. At the end of the month, my rheumy's NP cleared me for Enbrel again and I got to spend some time with a few friends in town running a marathon... which turned into a half instead because of the horrible hot spell we were having.

By June, dealing with the mental issues of having an illness caught up with me. Though I wasn't suicidal by any means, I was having thoughts that scared me and I had my first appt with my therapist. The Enbrel was working well enough that we decided I should try it without the Arava as it was upsetting my stomach. The boyfriend and I also went on a wonderful vacation, seeing some sights associated with the Civil War and Abe Lincoln, taking in a Cincinnati Reds game, and meeting one of the best spoonie friends I have ever had. I was able to do so much more physically than I thought I would because of the Enbrel. I also had some dental work done.

As a result of that dental work and taking antibiotics as a precaution, July saw me dealing with C-diff - an infection that is one of the leading killers in hospitals every single year. I dealt with it for 11 days before seeking treatment, thinking it was just salmonella or food poisoning. I am very lucky I got better and didn't have to face hospitalization. I did drag the boyfriend to Urgent Care on his birthday though, and scared the crap out of him when the nurses came to get him to bring him back to the exam room where I was getting my first IV of fluids due to terrible dehydration. This meant another month with no Enbrel. I got to see Dave Matthews Band, one of my favorites since I was little. I could've done without the copious amounts of drugs being done around us but it was neat nonetheless. I went with my sister to her last prenatal visit, and tried to talk to my GP about pain meds. He sent me home with ten pills total. UGH. But I also got  a nice haircut and color, and saw the new Batman movie all by myself.

August started off with a bang. On the 1st, I was lucky enough to get to be around for the birth of my niece Marissa Mae. I got to spend time with my best friend when she came along with the boyfriend and I to the Irish Fest Arthritis Walk in Milwaukee. I wasn't able to walk all of it and almost had to break out the cane to retrace my steps. It was a tough tough day. The next day though, I got to see my idol Hugh Laurie in concert playing the blues. It was one of the most amazing things I have been able to do. I cried out of happiness and being moved by his music. We finished the month off with a Milwaukee Brewers game and spending some time with the boyfriend's dad.

And then came September. We started the month off with a friend's wedding and then having to miss Marissa's blessing because of horrible fibro and rheum pain. It was a horrible day pain wise, but even worse knowing that my family maybe didn't understand and thought I was an atheist freaking out about going inside a Mormon church again. We went to a Juvenile Arthritis Family Network meeting, along with Megan and Mia and Megan's sister who deals with AS. It was wonderful to get to meet them after talking so much with them since June when Megan found this lovely blog. I had an appt with my rheumy's NP, only to get diagnosed with fibromyalgia on top of my Still's. On the 20th, the boyfriend and I had our 5 year anniversary and headed out to Dubuque to celebrate for the weekend, where he proposed :)

In October, I got to spend some time with my best friend and now maid of honor. I was also finally granted FMLA at my job which has made things a lot easier. I babysat Marissa for a while so my sister and her hubby could go out on a date for their one year anniversary, and we found out Marissa likes ukulele music.

November was a hellish month though. I had four appts between the 8th and 9th, one of which was a sleep study. I had to stop Enbrel AGAIN (seriously??) because of an issue with my throat and all doctors involved not wanting to see that end up as an infection. I gave a speech at an Arthritis Foundation fundraiser and got a hug from a Heisman Trophy winner. I also celebrated the 19 year birthday of my Still's on the 14th and we made a cake. In two years, I am having a 21st birthday party all over again I swear. I also started seeing 2 PTs for my neck/spine, one being pool based therapy.

December has been an incredibly tough month. Cold weather always makes Arthur an ass, and it is definitely doing so now. I'm mid flare as I type this even. And what's worse for sure is losing someone that I was so close to, that always had ideas and advice and help even if she was going through worse. Losing Laura has made the rheum community come together in a way I have never seen before. She was truly an angel and I am grateful that she isn't hurting anymore, but I am so sad not only for myself and our other friends but for her fiance and families. As so many others have put it, her death makes me feel numb and I know that I am having a hard time dealing with it. There is a void left by her absence that will never be filled.

While I was lucky enough to go through some amazing once-in-a-lifetime kinds of things this year, I am ready for it to be over and to start anew. Dear 2013, bring a bunch of kick ass things like 2012 had but can you leave the crappy parts behind? I could really really use a break.

Wednesday, December 19, 2012

Activism vs Idiocy

It is the holidays and it is time to be nice to each other and forgive each others' faults and all that good stuff right?

Ehhh...

Obviously the last couple of weeks have been hard on the rheum community after losing Laura. It has been a huge blow and a wake up call to a few of us as well. We are all at different stages of grief in dealing with her death and it is a constant process. Lately I have been in the anger stage. Forgive the following rant.

Sunday afternoon a company that I follow shared one of Laura's blog posts she had recently written about growing up with arthritis. I went ahead and shared the news about her passing and they responded in a very kind way, sending condolences to those of us who knew her.

What happened next took me back.

A so-called JA advocate used that platform to pimp out her own page without so much as even acknowledging Laura:
What a great idea. I am working to create awareness for JA at (group name withheld) on Facebook. Come join me.8
Why the 8? I have no idea. In my mind that was neither the time or place to share her page, to really in reality do shameless promotion of her own project.

Understandably I was a bit miffed at that and contacted this person. In condensed form, I essentially talked about how I was not sure if this was as a result of not really seeing the fact that she had died or just not caring to acknowledge it. I then went on for a bit about how it seems like once JA kids grow up, this person seems to stop caring about what they go through which seems to hinder the cause in my mind. I talked about how Laura was such a great JA advocate and that this self promotion disguised as advocacy was bothersome.

The following is her response:

Kristen,
I am so sad about this. First I have RA, have almost died from complications twice so I understand the seriousness of this disease. I am so sorry about your friend. This is NOT my reply, this is some automated or something. I personally try to answer each and every post. I donor self promote. My one and only goal is to help. I understand your anger, this post makes me angry. I apologize for the pain it has caused you. I work to help any and all with arthritis. The only reason I started the kids page was because people don't know kids get arthritis.
I am so sorry for your loss.

Clearly there is a misunderstanding in what I sent since she believes that I must have posted on her page. And automated something? The comment was sent from her cell phone. Are you kidding me?

I have a lot of issues with how this person handles things and I have for several months now. Many of us in the arthritis community felt that she would really help us when she isn't doing anything of real meaning or changing anything in reality.

First off, she refuses to show any negativity as she refers to it - apparently this means that we can show cute pictures of kids but we don't show any pictures of infusions, children in the hospital or in bed or doing their shots, or rashes or deformities. Apparently we are supposed to practice advocacy for children with JA but without showing any of what they go through... How the fuck does that make sense? The average person doesn't know what an enbrel pen or a 4 hour infusion look or feel like. They don't know what it's like to have more pills in your body than food many times and they definitely have no idea what it's like to endure hours and hours of pain doctors refuse to treat because they believe it is all in your head. They've never been called crazy, been accused of lying about their chronic condition, or been told to try all these natural treatments which for the majority of people in the world do jack shit.

She's constantly telling people to read her latest book, and for a while went on several shows to promote her book - JA was an afterthought in most of these interviews.

This same person blasted a facebook page (clearly created by kids trying to get Justin's attention) because she had the nativity to believe that it was somehow actually related to Justin Bieber (despite it clearly not being) and posted on it several times trying to get him to do a song or something to raise awareness about JA. The young girls (with JA mind you) felt very attacked and a parent had to come out and tell people to stop acting in such a foolish way towards these kids. This person is constantly reaching out to celebrities trying to get them to be spokespeople and at the same time ignoring those like Teri Hatcher who are noted for the amazing things that they do for the JA community. Heck, Vanessa Hudgens was just at a fundraiser for JA.

But why do we need a spokesperson anyway? Doesn't it seem that we know what we go through more? Why depend on other when we can get things done through grassroots organizing??

This person also used to have a career in fashion and has written many articles on how to be fashionable with RA. One such article included a bit about how when you are not feeling well due to RA you should get ready and go to the store to buy new lipstick because IT WILL HELP YOU FEEL BETTER.

WHAT?!

When my face is swollen like a sumo wrestler or I can barely walk to the bathroom, going to the store to get makeup is not a priority - and it definitely isn't going to make me feel any better.

I figured what the fuck, I'll just bring up (most of) these issues and see what she says. Her response:
I am sorry you think so poorly of my work. You seem to think that I am all about promoting myself. That is the exact opposite. I am not going to address all of your issues with me because there are so many that it seems you don't understand what I am trying to achieve. Talking about arthritis has damaged my tv career which I knew it would. But my passion is the kids. I refuse to be negative. Hope kept me going with RA and that is what I offer for many. I am sorry you don't agree. I understand it is impossible to please everyone but the good feedback and the hope from my sm friends tells me that it's working for the kids. That makes me so happy. Kids deserve a childhood.
Kids deserve a childhood - they do. She seems to have forgotten my background, like she does with just about everyone she speaks to. I reminded her what I have gone through being ill for 19 years and that I know better than her definitely what issues face these kids - what they worry about, how tough fitting in gets, dealing with assholes docs, etc, etc. I brought up that I never have been able to pursue teaching, the career I studied for and am now $80,000 in debt over because Arthur forced me to quit graduate school. I work a dead end job and most likely will until I can't work anymore.

Through all of this, she still never gave me a real answer on what I had messaged her in the first place about. She has gone on to write petty indirect things about how it is so sad when people use their energy for being mean and hurtful. Honey, you're 50+ and worked in show biz. I think you can handle it. And I think you could at least give me an honest answer about still refusing to acknowledge really the Laura situation or what happened there. I'll be waiting when you figure out a lie good enough to believe.

Here's the deal with all this - many of us in the arthritis community specifically focusing most of our time on juvenile arthritis thought this person was going to be our Moses. We thought she would lead us out of the desert and into the promised land where Dr Oz, Oprah, Dr Phil, Anderson, Ellen, and other people would help the public understand juvenile arthritis and in doing so all kinds of arthritis. We thought that she would change everything as she had basically promised us to do. Instead, we are left with a woman who constantly uses the status quo to 'raise awareness' and take in the benefits from emotionally worn out parents.

More people in the world need to act like Teri Hatcher. She gives money and hosts fundraisers to raise awareness of arthritis especially in children. She doesn't care that the whole world doesn't know she does it - she does it because it is the right thing to do and it helps. I don't do what I do to get recognition for it. I do what I do because it is important and I very much wish that someone back in 1993 had something like this to help me and my family to deal with this condition that my sister and I live with every day. I do it to connect with families like the Stacey's and Mia's and with wonderful people who have been another family to me like Heather and Sari and more. There are so many wonderful people that I have met and we have all had such an amazing impact on each other. I am so grateful to be able to have these people in my life and for us all to be working together to raise awareness. It may be a slower process than we'd like but we are doing something that actually impacts the world - and that's more than I can say for a lot of people.

Friday, December 14, 2012

Existential Crisis Mode: Defcon 2

I'm not an expert on grieving. The only deaths I've had to deal with are my great great grandma (I was like 4 maybe & didn't remember her), my great grandma (who I seem to miss more as my illness grows stronger), a friend I knew in high school (I had one class and did a play with her), and numerous animals.

My great grandma's death was really the most rough. The worst parts about that was really seeing her in the nursing home beforehand with her unable to speak (they broke her vocal cords during intubation after a stroke brought on by MS) and then the open casket at the funeral. There was the lifeless body of one of my favorite people in the world. My little sister and I couldn't stand to look at the casket.

My high school friend threw me for a loop because had I not run an errand at lunch instead of after school I could have been with her. It was the first real taste of mortality for me and it sparked my investigation of religions and beliefs that turned into a bachelor's degree eight years later.

Not that death ever comes at a great time for anyone, but Laura's death struck at an awkward time in my life. At 24, this is my first semester not being in school as my illness worsening has forced me to choose between schooling and work. I'm still dealing with ongoing depression that I hide from a lot of people, especially those who physically see me. The last two weeks, especially, has been odd for me.

Every so often I go into what I lovingly refer to as my existential crisis mode. I start thinking about death, what happens when we die, and the ramifications of trying to mash together logic and the things I very much hope are real. I have panic attacks because of it. It especially got worse over the weekend when that emotional pain rendered itself physical thanks to my fibro. I even talked with Laura about how badly my back was doing in the last tweets between us (of course now I'm mad at myself for complaining to her).

On Monday, my stepdad had open heart surgery - a 6 way bypass surgery. Mind you there are only 6 tubes running into the heart. They effectively stop your heart and run you on a machine while they take veins from your leg and use them for the bypass. He has horrible diabetes which has resulted in numerous toe amputations and surgeries. Between the actual surgery itself and his poor broken body trying to heal, I've understandably been worried. I wanted to go see him today, but I'm guessing he doesn't need exposure to my cold right now.

So understandably I thought my worries were due to his condition and surgery. I was very anxious all day Monday checking my phone at work. Suddenly I had a calm rush over me and I immediately thought something went wrong in surgery, but he came through fine and I attributed it to caffeine or my crazy body or whatnot.

Tuesday morning, I found out Laura had died the day before and I just lost it. I have lost a few acquaintances in the rheum community understandably but never someone so close, never my sweet friend. I stayed home from work and just cried off and on all day. I ended up being the informer, telling our online friends about what was going on and trying to use my connections and friendships to learn more about the circumstances surrounding her death. It's been tough to be that person and yet also rewarding. I took it upon myself to take up that role. I needed to have others grieving with me because otherwise I just don't know how I could handle it.

I never met her in person but I imagine Laura to have been that kind of person that lit up a room when she entered it, because she certainly did it online. She was always personable, caring, sweet and funny. I think everyone who had the great opportunity to call her their friend knows what a special relationship we each had with her. Anyone like that would be hard to lose from your life, but to notice that she and I have the same illness and how much that played a factor into her death... it can be scary. I don't think of it that way as much because she had such a big personality that even if you didn't share her illness or a deep friendship you have to be grieving.

Thursday at work I was about to lose it thinking about Laura and suddenly that same calm feeling rushed over me and it hit me that she was trying to comfort me.

I don't know what I believe about what happens when we die or any of that, but I know that for me I need that to not be the end. I need to believe that Laura and my great grandma are around me and helping get through things. It doesn't make me any less afraid to die knowing they're around somehow - I'm horribly frightened of it. Dealing with your mortality as a person with a chronic illness I think dictates a fear or a worsening condition and of losing the battle - especially with a partner that you don't want to be without. But I know that even though it is hard right now I have them around to guide me a little bit. Maybe that's enough.

I searched the interwebs for some quotes dealing with grieving and thought I'd just post some below.


You can shed tears that she is gone, or you can smile because she has lived. You can close your eyes and pray that she'll come back, or you can open your eyes and see all she's left. Your heart can be empty because you can't see her, or you can be full of the love you shared. You can turn your back on tomorrow and live yesterday, or you can be happy for tomorrow because of yesterday. You can remember her only that she is gone, or you can cherish her memory and let it live on. You can cry and close your mind, be empty and turn your back. Or you can do what she'd want: smile, open your eyes, love and go on.
-David Harkins
“Perhaps they are not stars, but rather openings in heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy.”
-Eskimo Proverb 
They that love beyond the world cannot be separated by it. Death cannot kill what never dies.
-William Penn  
When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.
-Kahlil Gibran 
Unable are the loved to die. For love is immortality.
-Emily Dickinson 
Death is nothing at all. I have only slipped away to the next room. I am I and you are you. Whatever we were to each other, That, we still are. Call me by my old familiar name. Speak to me in the easy way which you always used. Put no difference into your tone. Wear no forced air of solemnity or sorrow. Laugh as we always laughed at the little jokes we enjoyed together. Play, smile, think of me. Pray for me. Let my name be ever the household word that it always was. Let it be spoken without effect. Without the trace of a shadow on it. Life means all that it ever meant. It is the same that it ever was. There is absolute unbroken continuity. Why should I be out of mind because I am out of sight? I am but waiting for you. For an interval. Somewhere. Very near. Just around the corner. All is well.
-Henry Scott Holland 
Goodbyes are not forever. Goodbyes are not the end. They simply mean I'll miss you Until we meet again!
- Author Unknown
Love is stronger than death even though it can't stop death from happening, but no matter how hard death tries it can't separate people from love. It can't take away our memories either. In the end, life is stronger than death.
- Author Unknown 
May the road rise up to meet you, May the wind be ever at your back. May the sun shine warm upon your face and the rain fall softly on your fields. And until we meet again, May God hold you in the hollow of his hand.
- Irish Blessing 
I am not gone I remain here beside you Just in a different form Look for me in your heart And there you will find me in our love which forever lives on In those moments when you feel alone Look for me in your thoughts And there you will find me in sweet memories that burn strong Every time a tear Forms in your beautiful eyes Look up to the heavens And there you will see me Smiling down from God's glorious skies
-Injete Chesoni

Tuesday, December 11, 2012

In Memory of Our Sweet Laura

I have been staring at this blank screen all day, unable to find the words to talk about this wonderful human being. There just aren't enough words to talk about how amazing she was, how much she will be missed, and how much of a void is left for those who knew her. For those of you who didn't get the chance to know her, I am sincerely sorry.

I first met Laura a few years ago, a bit into my blogging adventure. She was really the first girl with Still's that I got to know outside my family, and definitely the first blogger. As I went through pains that I have never shared with anyone else, she comforted me - and it didn't matter how badly she was doing either. She didn't care about herself gaining attention - she cared about supporting her friends. Even as she was so ill after being released from the hospital Saturday, she was talking to me about my back spasms and how to help them not be so bad.

Even in her final tweets, while she was describing how much pain she was in, she never really complained. In all the time I've known her, she never was one to do that. Her fiance Matt told a mutual friend that she fought hard until the end. She always one to give it her all, such a wonderful fighter. I can't even begin to imagine the hell that he is going through right now.

I was so looking forward to planning our weddings together and sharing sweet special moments like that with her. I feel so selfish for missing her, for crying over her all day today. I should be so happy for her and the fact that she's no longer in pain. I just can't feel happy for her knowing that she had so much more to do here, so much more life to live. She was only 30, but I feel that even if she had lived until she was 100 it wouldn't have been long enough.

We have set up a memorial page for her with donations going to Arthritis Research UK, an organization she had recently starting doing a lot of work with. I'm waiting to hear back on an address to send cards for her family but in order to protect their privacy I will probably ask for them to all be sent to me and I can ship them across the pond. If you're interested, please contact me.

This song always makes me cry, but it reminds me so much of Laura. She pushed me to be a better person, to take better care of myself, and to remember the toll that being sick takes on my fiance. I will miss her greatly.

Monday, December 10, 2012

My Caffeine Problem

My name is Kirsten and I have a caffeine problem.

Seriously.

After multiple meetings with my neck PT and her partner in crime aka the pool lady, it has become apparent that I have a caffeine problem. I have been chided. It has been recommended that I try tea but the ones I have gotten either smell/taste like rotted plants or contain things I am allergic to. It's incredibly frustrating.

It seems to me right now that I am stuck between a rock and a hard place. My fatigue has been bad enough for years that I just have kept taking in caffeine. I didn't have a choice really - going to school and working, both full-time, requires a certain amount of being awake. Even then, I would fall asleep in classes or nearly do so at work.

I still feel as though I haven't really a choice here. I have to work full-time to pay all my grossly expensive medical bills, buy meds, pay rent, and eventually have a wedding. As it is, sometimes I am living paycheck to paycheck because of the hours missed due to the pains and limitations that pop up with this damn illness.

Even with the caffeine, I sometimes fall asleep at work. I can fall asleep standing, trying to dance around, sitting, and just about every other way to be captioning phone calls. Heck, I can fall asleep just about anytime other than when I actually crawl into bed it seems - even in the bathroom. I've brought this up to my GP and he responded that I should just continue to imbibe these caffinated drinks until my arthritis is under control...

He's a good doc but I don't gather he knows as much about my illness as he possibly should. I have never really had it under control. Heck, I have a friend facing a bone marrow transplant because of the same inability to get this under control. She doesn't know how I can work and make all of these appointments and do everything like I do. Sometimes I don't know either!

I sense a med change in my future, whether good or bad. Will I get to the point that I can be actually awake during the hours I'm required to be? I really don't know.

For now I think we are at the point where I'm going to have to transition from fancy coffees to regular-ish coffee and possibly think about the notion of caffeine pills. No one I've talked to about this seems to think it is a good idea. However, 90% of my meds cause drowsiness on top of my fatigue. I can't function without these meds. I have terrible insomnia (painsomnia!) at nights and even have a condition where waking brain waves interrupt my REM sleep. It's all fine and well for everyone to tell me to stop taking in caffeine/soda/coffee/etc when they don't have to see what happens on days where I can't exactly function due to any of a myriad of things. It's all great to talk about working out up to 4 days a week and asking me to do exercises 4-6 times a day when you don't know just how much energy it takes to just put away the dishes or laundry or shampoo my hair.

People mean well with their recommendations but it gets really difficult trying to actually carry them out. I have to work to see docs and PTs so they can tell me to not take in this or that which will limit my time to work and then my insurance disappears and I can't see any docs anymore.

Sigh.

I did my enbrel shot last night and so I've been achy and angry all day. I thought the Batman shirt would help, but apparently not when you combine it with grumpy pants.

Monday, December 3, 2012

Arthur, the emotional vampire

There are days where I can barely move, where I have to change my plans because of Arthur. Many days grocery shopping I have to lean on the cart for support. Those days are tough and it takes a lot to get through them but it is doable.

The worst of it though are the days where the emotional toll of living with Arthur gets to be too much. It's more debilitating than the physical effects of this disease. I can get help with the physical - the fiance can do xyz for me when I am unable. But I can't get him to quell the negative thoughts that I constantly have. No one can listen to my thoughts for me and no one else can bear that load.

I always talk about how lucky I am to have gotten ill when I was so young that I don't remember 'normal' but that also means that all of these negative thoughts have plagued me for far longer than they should. An 8 year old shouldn't be so depressed and overwhelmed with pain that they don't want to be alive. I know that others have it worse, but it is so hard to deal with.

Thanks to Arthur, I have always been a fighter. It has been something that served me well my entire life. But there is a point where you get tired of fighting your way through everything. I don;t want to fight to make it through a work day or a special event or just to be able to breathe. I just want to be able to rest without worrying about what comes next, without thinking about how painful it is going to be when I get up or go to work or to therapy.

I need to take a break from Arthur, a vacation from my illness. Too bad he follows me no matter what.

Saturday, December 1, 2012

Still's Onset Stories

I thought it might be a nice addition to the blog to start collecting some of the onset and road to diagnosis stories from people so that others can read and possibly gain some great information from them. This will end up being its own 'page' on the blog in the pages bit just above here and I will be adding stories to it as they come as well as posting them on the main blog page.

I encourage you all, if you feel comfortable enough, to share your stories with me so that others can benefit from reading them. You can email them to me at kirsten -at- notstandingstillsdisease -dot- com (you have to write things this way or often spam emails get sent - silly spammers!).

Today, I am very honored to share with you all the story of the president of the International Still's Disease Foundation, Melly.



Melly's diagnosis of AOSD came at age 19 and as of 2012 at age 54 she is in remission. The rest of her story will be in her words.

I was born in 1958 and was very healthy as a child except for over-active lymph glands in my neck when very young and I developed an allergy to the sun around age 10.

In 1977, I had sudden symptoms of pneumonia one day but without clear evidence I was told. A bit later, I had an inflammation episode at an old injury site in my foot that was diagnosed as bursitis. Into the next year I started having symptoms of the flu with swollen glands, muscle pain, and painful joints. All of this came and went as the months went on into summer. When my knees swelled the size of softballs and I could not lift my head from the pillow without assistance I went to a general doctor and was told to go home and stay in bed until I was better. I was having high fevers a couple of times a day spiking to 105 degrees and averaging 102/103 degrees. They always happened at the same time in the afternoon and at night. I also started getting a rash on my back that was itching when hot. The doctor finally referred me to an internist.

I had lost a totaly of 28 pounds in just 6 months and had an enlarged spleen. The internist said it could be several things but I was very ill and needed to be admitted to the hospital that day. By the third week in the hospital, none of the tests had come up with a diagnosis for my illness. I was severely anemic and it was discussed I may need transfusions. I weighed 107 pounds at the time and I am 5'11'' tall. I couldn't walk but had a therapist come in daily to keep my joints mobile. A rheumatologist was called in and I was told my diagnosis was Adult Onset Juvenile Rheumatoid Arthritis. I remember he was so kind to reassure me they were not labeling me a juvenile. A few years later I saw it listed as Still's Disease on my charts. I still have the same rheumatologist today and will always feel that he and the doctors I had saved my life.

Over the years, I met only two people that knew what Still's was. In 2001, I got my first computer and the first thing I searched was Still's Disease. It came up with the Yahoo support group that is sponsored by the International Still's Disease Foundation. I sat and cried because of all the years of my loneliness. Then here was a group of others that had what I did and would understand my life.

Still's brought with it not only illness but loneliness. A silent loneliness of pain and years of summoning inner strength to carry on living. Mostly I didn't think I would be a good enough mother with this life of sickness. My daughter was 2, and I was a single mother, when diagnosed. There were many times of silent depression. Somehow I was able to reach out and tell those closest how I felt and I got help to carry on. There were better days to come. They didn't come quickly or easily but they did and I will never forget that. I started seeing a therapist for bio-feedback pain management and then continued through the years for sessions to help with the adjustment of living life with disabilities.

Part of my doctors' care was making sure I got physical therapy, occupational therapy, and anything else to keep the arthritis from crippling me. I had several doctors for the related conditions that occur with Still's and they always worked together sharing information. My doctors also stressed the importance of rest and quiet with this disease and I learned how much it meant as time passed. I learned quickly different things made me worse or helped. When I got upset emotionally, my fever would spike. If I overdid too much, I would have increased inflammation in my joints and have to slow down. But if I didn't move or do isometric exercises, my joints often froze and I wasn't able to move them at all. Sometimes I couldn't even feed myself. If I made plans for vacations or activities, I had to plan ahead or tell others I might not be able to keep them. These are just a few of the things I learned as I was able to function again.

The first few years I was the sickest. There were medications to be tried for months at a time and failed. By the second or third year, I was slowly able to get off the prednisone as a new drug at that time was introduced. It worked and slowly my disease started taking a course of remission and continued as they years passed.

When I felt better physically with less fevers and joint swelling, I started doing things I had [done] before I was sick. I went back to playing hard impact sports and dancing. It didn't take long before my hips were deteriorated. I had no idea this could happen. I spent the next 4 years continuing physical therapy. I needed to use a cane and platform crutches to walk. The last two years I waited for UCLA medical center to get approval to start using newly developed hip implants. I was 26 at the time. Since then I have also had my right knee replaced. I share this because I never knew how aggressive the arthritis could be after/while being on steroids and having joints drained with injections. The medical term is AVN.

I am fortunate to have been in remission for years now. I have symptoms from the arthritis but the systemic activity of Still's is dormant. Life has been one of adjustments; sometimes hourly, usually daily and definitely yearly, but that isn't much different than anyone else's. When I look forward, it is with hope that others won't ever know the feelings of loneliness I knew and hopes that, with time and research, theses stories will become a thing of the past.

My heart holds strength for all those that live with Still's to keep fighting!

Melly.