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.

Friday, November 30, 2012

Day 30: I am awesome! #NHBPM

Write about why you're awesome.

I'm not even kidding you that was one of the prompts for today. I only have one thing to say.






Thursday, November 29, 2012

Day 29: Goals for 2013 #NHBPM

"If I could accomplish anything/one thing in 2013 it would be..."

FUCKING GET BETTER.

Oh? We don't have a cure yet? Ummmmmmmm....
...
..
.

Well then. I guess I actually have to think here. I have several goals so I'll just list them all.

I want to lose weight - not for anyone else but myself. I want to really feel as beautiful as I'll look in August 2014 :)

Also, I want to find a dress for my wedding - one that I fall in love with instantly and looks great on me and is priced nice.

I want to find a medication that actually works for me and will keep working. And I really really want to do it without Arava or MTX or going back to 'roids.

I want to not feel like my life is drained because I'm so damn tired or like I have to have a caffeine damn IV to be awake. I'm always so exhausted, thinking of it itself is exhausting. Yeesh.

I want to be able to be active again - to work out, to hike, to play with my niece - all without needing days off to recover. I want parts of the old me back - the one that was excited about exploring instead of tired at just the thought.

Fuck, that is a lot of big goal type stuff right there. Bring it on 2013!

Wednesday, November 28, 2012

Day 28: Why I'm thankful for Arthur #NHBPM

Write about the unexpected blessings of your health condition - or how being a patient has changed you.

There are an awful lot of people who take things for granted - being able to breathe well, go for a morning jog, or even do something so simple as walk to the bathroom. Running has been out of the question for a long time for me and that's fine, but the other two are things that everyone has to be able to do. In the time since I began blogging, I have gone from someone with few rough days to someone with few awesome days. It has been an incredibly difficult and demeaning journey. There have been so many times where I was ready to throw in the towel, to quit and just resign to being a lonely cripple.

But I have been blessed with a great many things. I have a support system that once was only my family - which isn't so helpful when they blame being a bitch or having a panic attack for my actions instead of actually *gasp* being sick. Today it has grown and includes people that I have not met and some that I will probably never meet as well as a number of people that I have met in person only due to our shared experiences with illness. Many people I have talked to see a drop off in friends - but most of the friends that I have made seem to support my fight for awareness and offer help when I might need it. That alone makes me feel incredibly lucky.

And then there's the fiance. In all honesty, I figured that my illness would keep me from finding him. Even past experiences on dates had seemingly proven that to me. And yet, I sense that my illness is part of why he loves me - the fight I put up, the things I stand up for, the effort I put into things. That all goes into making me who I am and without it I may not have found this one person that I care about so deeply. I also wouldn't know his family, who supports and helps me so much.

I am blessed to have one of the finest doctors in my city and probably the entire state of Wisconsin and along with her comes an amazing nurse practitioner who fully embraces me for who I am and seemingly cares for me more as a friend than a straight up patient. They in turn have led me to some great doctors, a therapist,  and physical therapists who really do a lot to help support and help me mentally and medically.

I have learned a great many things about toxicity in my life that I am working to rid myself of. There are certain groups, friends, and individuals that cause so much drama and emotional distress that it greatly affects my ability to handles my illness - and can even make my illness that much worse. It is a tough process to go through as it can pull heartstrings but it is something I have to do for my emotional and physical health. Without being ill, I'm not sure I would be going through that.

Being a patient has taught me that doctors are people and are not perfect knowledge filled robots. They also may not listen a lot sometimes so you may have to nag. I have learned that enough nagging will move things along. I have also learned that you really have to get input from patients themselves sometimes since docs don't always know side effects of meds or issues associated with an illness.

Most of all, I have learned that being a patient is a pain in the ass but if I can use my experiences to help others I am more than happy to go through awkward times to make it so.

Monday, November 26, 2012

Day 26: I'm a #rheum pimp #NHBPM

But only for my friends! Today, I wanted to take time to share with you my favorite blogs, facebook pages, and twitter-ers regarding juvenile arthritis, Still's, and the #rheum or chronically ill community in general.

Laura is an amazing resource for information regarding Still's and she has done a lot to help me on my journey. She recently got engaged as well and we are both at very similar points in our lives. It is really great to have someone so supportive and understanding as she is. You can follow her blog here, Twitter here, and facebook here.

Mia is the cutest toddler I know and she has been dealing with Still's for too long. Good news is that she just came off of steroids too!

Parker has been dealing with his Still's for coming up on three years now. It has been really neat to watch him grow up though obviously I wish it was under better circumstances.

Natalie hasn't blogged in quite a while but she's pretty active on Twitter. She is an OT living with Still's, anemia, and fatigue - which is nice to see! I feel like if I lived in the UK, she would be the OT I'd want because she would now how these things affect our bodies.

Trish over at PhyzzEzee was diagnosed with Still's in 1949 and still continues fighting it today. She is a great resource for information and you can follow her on Twitter here.

Sally over at King Arthur & the Creaky Knits of the Round Table has Still's and plays the ukulele too! She also knits if you couldn't tell. You can follow her on Twitter here.

Emily over at Chronic Curve is a college student on Remicade for her Still's. You can follow her on Twitter here.

My friend Joanne made an awareness video a few months ago and is now blogging! She's about the same age as me and I think it's incredibly important that young adult chronicle their battle with rheumatic diseases. There just isn't enough information out there on young adults with RA. You can follow her on Twitter here.

Speaking of, Joesph is in a similar situation. His RA battle has included being diagnosed with Raynaud's as well. He's from across the pond so it has also been interesting watching him handle the NHS. You can follow him on Twitter here.

A to the A over at Wanton or Wonton is engaged like me and trying to navigate the addition of lupus to her numerous health issues including RA.

My friend over at Secret Raindrops is amazing. She has recently gone through a divorce and is working on the boundaries of still living in the same household (Hurricane Sandy put a squash on her moving plans) and dealing with her ex's family - all of whom doubt how serious her RA is. She is one of the strongest people I know. You can follow her on Twitter here.

My friend Stacey is likewise amazing. Not only does she deal with multiple illnesses including RA and fibro, her sweet daughter Jordan has shown symptoms of JRA since age 2. They are some of the first friends I made when I did finally reach out into the RA/JRA community and they have become dear friends. They live near where the JA conference will be held this next summer and I'm hoping we can all make a trip out to Disneyland. You can follow Stacey on Twitter here and Jordan's Pink Angels here.

Emily over at Mama Sick chronicles how difficult it is to be chronically ill when you have no insurance and no money :(  You can follow her on Twitter here.

Britt over at The Hurt Blogger recently got a gig writing for Creaky Joints! How cool! In the last year, she has done a lot to further understanding of patients with rheumatic diseases including speaking at the Med-X conference. You can follow her on Twitter here and facebook here.

Here is a list of great people to follow on Twitter:

  • Sarah is on Humira and plays college softball. She's pretty cool.
  • Kary lives in the UK with RA...
  • So does Katrina...
  • And Barb who also blogs at Walking in My Shadow
  • Heather is the first Twitter friend I met in real life and she's like a sister to me. And she knows just about everything about getting a 504 plan for kids set up!
  • Dawn is a gluten free, paleo chick with spondylitis who loves baseball and the Detroit Tigers. We totally have a lot in common.
  • Sporks is a RA fighter who loves NPR, video games, and cooking. She also shares the most hilarious things I've ever seen.
Here is a list of awesome people and groups on facebook:
If you made it to the end of this post, you deserve a damn treat! There are just so many resources out there available to us and so many dealing with illnesses that, even if they're not exactly what we face, know how we feel - the loneliness, helplessness, and prednisone munchies. I could have included so many more people here than I even did but had to restrain myself so if you're disappointed you aren't on here don't be sad!

Sunday, November 25, 2012

Day 25: Patient advocacy, always evolving #NHBPM

How have your goals as a patient/advocate/person evolved?

Yesh, loaded question alert!

Since I started really taking charge of my health, I have turned from being someone uneducated about my illness and medications into someone that has failed medications and changed doctors numerous times. I have gone from being someone who would sigh and toss fundraising pamphlets from the Arthritis Foundation in the trash to someone who participates in walks and has even spoken at an AF event.

At first, it was about me and my pains - frustration that no one knew what I went through and trying to find a way to share that with others. Now it's about the kids I know with any kinds of arthritis - it's about making sure people know about Jordan's infusions or Parker's hospitalizations or Mia's final dose of prednisone. I grew up in a world where the kids I was actually able to interact with made fun of me for my weight or because I was a 'nerd' or 'weird.' These kids deserve more, they deserve better.

I've also learned I'm not alone in many ways. Obviously, I'm not alone in my specific disease (hooray?). I'm not alone in being quirky or being looked down on for it. But I'm also not alone in the fight to raise awareness and to help others, especially the kids - that, to me, is worth everything.

These kids - they're worth everything:

Parker being an awesome M&M (read more here)

Mia is so freaking cute it's unbelievable (read more here)

There are other kids that could be mentioned and the list could go on for a while. Parker and Mia both have systemic JIA/Still's and Jordan has another kind of JIA and also uveitis (which is finally cleared up for now after like 6 years! YES!). When I think about fighting for awareness and change now, I think of these sweet kids - their hospitalizations, shots, infusions, surgeries, and more. Who could ask for better reasons to fight?

Saturday, November 24, 2012

Darth-ritis

Earlier today, I was working on some future blog posts and the fiance turned to me and said that he sometimes sees me as Yoda helping people fight 'the Darthritis.'

Badass, I am

At first I just thought it was hilarious and I was also pretty disappointed that other people hadn't thought that up yet. Seriously.

Your lack of ingenuity is disturbing.

But then I actually started thinking about it. If you haven't seen Star Wars (seriously, how are you alive at this point?), note that the rest of this contains spoilers.

Okay, so we all know that Luke goes through a lot of film roll thinking that Vader is an outside being unrelated to him - only to find that it is a part of him gone horribly wrong.

It's pretty horrible.

It's not unlike how people believe they have a cancer or mono or some other ailment until they find out they have a malfunctioning immune system... which leads me to my next point.

The white blood cells control immune response and are the weapons used against invading viruses and bacteria... like the Stormtroopers fight the rebels!

We heard you guys had some in-vaders.

The Millennium Falcon could be likened to the meds we take - their release mechanisms and effects on our bodies.

Every Luke needs a Yoda to sift through the information, to mentor us and to show us the ways of the rheumy force. Anyone could be your Yoda - your awesome doctor or nurse, your cousin, or a stranger you never even met. Together with their support/training and the support of your fellow 'rebels' I have no doubt that someday our bodies will decide to help us knock the evil Emperor Palpatine into the never ending tunnel of despair.

Do it man!

Now that I've stretched this comparison probably as far as it should go, I leave you with my arch nemesis - Darth Ritis.


Day 24: The Holy Grail of Spoons #NHBPM

If I had unlimited spoons... Man. I tell ya what, right now I could use a few of those days. I'd love to pre-register for the unlimited spoons days - like my wedding and honeymoon please? Pretty please?

I would love to use unlimited spoons for a Hawaiian vacation. I'd love to go snorkeling, to wander around volcanoes, to hike, to run along the beach. Damn.

If I could wake up tomorrow and be just fine with my spoons from now on, I would start running again. I would get better at swimming and swim the days I don't run. I'd take on another job or go back to school and finish my masters. I'd for sure be down for babies, for babysitting, for play dates and all the Disney theme parks.

It's amazing how much the lack of spoons really influences how much I do versus pain. Running would hurt sure, but with the spoons to recover it'd be worth it. Same with swimming. The kids? Maybe not as much.

There are so many limitations placed on our lives because of our illnesses. It's disgusting :(

Friday, November 23, 2012

Day 23: Hey doc, listen up! #NHBPM

I get to give doctors advice today! Well, I guess only on here. The thought counts right?

The rheumatologist I had at this time last year was horrible. He didn't tell me that he thought I might have fibromyalgia nor did he try to treat me for it at all. He didn't listen to the side effects I was having with MTX or with Humira and totally just didn't listen to me in general - I have about 20 mistakes in my medical record that I have had to clear up with my new docs due to his inattention... like that I had no pain for a decade - um, WHAT?

I also have had issues with my primary care twice now with medications not being prescribed correctly or being prescribed something I'm allergic to. Hello!

There is so much pain that we patients go through. The last thing we need is to go through medication issues or deal with inattention that causes us problems. So here are some things that our docs can do to fix these problems!


  • Listen! Please! We listen to you and try medications we aren't sure about and other treatments we have doubts about because you say and think that they may be beneficial. The least you can do is treat us the same.
  • Contact us back! A lot of us have problems even getting up the courage to call when we have an issue because somehow we feel like we failed a medication or a taper or a treatment. We have probably waited too long in any case to get your input on something and so you just need to remember that!
  • Figure out who we are. One of the reasons why I love my rheumy office is that I feel like every time I go, my NP really listens and asks questions that aren't just health related. She pays attention and knows how outside stress affects my health. She also celebrates my happy things with me too :)  At my appt with her a few weeks ago, she finally learned about me getting engaged and she was incredibly ecstatic - and went so far as to write it down including our picked date. I'm rambling maybe? The point is, when you know the things we do and love you will know what treatments will work the best and what things might negatively affect our health the most.
  • This probably goes with the last point, but be our friends. It is much easier to share problems with someone you feel really cares about you and not just treating an illness because it is their job than it is to share with a cold stranger.
So docs, nurses, and future docs take note! We see you so much you're practically family anyway, so might as well get used to it and listen like it :)

Thursday, November 22, 2012

Day 22: Danka #NHBPM

Today, I am supposed to write a post for the things I am thankful for. I think we need some bullet points.
  • After a year of dealing with a crappy rheumy, I was able to find one that not only listens to me but works with me instead of just for me.
    • Her nurse practitioner is the bomb dot com and has even called me on personal time to check on me.
  • My niece is gorgeous and healthy. The gorgeous part may be kind of duh but there are unattractive babies out there.
  • I'm engaged! To the love of my life! And he's pretty awesome at being supportive too. Also, super super handsome :)
  • Working like ten hours today! I'm only thankful because it's holiday pay so instead of getting paid for ten hours, I get paid for 20! YES! That's like $200!
  • Jenna Marbles.
  • FMLA
  • PTO
  • My new neck physical therapist and her buddy, the water exercise lady
  • Enbrel has really done a lot to help me. The real test will be this winter as that's when Humira really stopped working.
  • For my health. I know it sounds really weird because it isn't so great. But I haven't been in the hospital ever because of Arthur (though I know times I probably should have) and I still responding somewhat to drugs and, unlike some friends, I'm not having to think about stem cell therapy.
  • You! You read my blog, you comment, you reach out to me to share your stories. It has made a huge difference in my life, knowing that I wasn't alone in this.
Happy turkey day!

Wednesday, November 21, 2012

Day 21: Insane in the membrane #NHBPM

Today, I get to write about mental health... which is something that I struggle with definitely.

Most families are dysfunctional and mine even more so. There is a lot of undiagnosed and untreated mental illness floating around I think and that's not so fun.

Understandably, growing up with a chronic illness tends to warp minds a bit. I recently read a book about fibromyalgia and found this quote that, I think, describes very accurately children dealing with chronic illness of any kinds:
Claudia Marek, author of The First Year - Fibromyalgia, interviewed a group of children and was amazed to discover 50 percent of her interviewees thought everyone they knew had pain but that other children were simply braver and better at coping with it than they were. Consequently, they were unwilling to verbalize their distress to others. In fact, for many children with FM, the pain they experience is "normal" to them. Since they have not experienced life without the disorder, they cannot distinguish their symptoms as unusual. (14)
See what I mean? I always talk about how thankful I am to have been ill from such a young age, but it's not like it's a picnic either. I very much thought that pain was normal and that everyone else just did better with it - even when I knew that wasn't the case, that is how it always felt to me. And it has always been tremendously difficult to explain what is going on with my body, even when I know the technical terms. Hooray for not being crazy!

Even so, there are enormous feelings of inadequacy, of horrible loneliness, of impending doom at the things I know could be just around the corner for me. I have a lot of frustrations and questions - Why do I have this? Why won't it go away? How much worse will it get? How much longer do I have before it gets to the point where I can't do anything anymore? When will I have to apply for SSI? Who will stick around to watch me get worse? The list goes on and on.

Basically, the soundtrack to Rent is constantly playing in my head.



Understandably, a lot of people dealing with chronic illness deal with depression. Much of it is due to fearing the future and missing the past you, the person who was 'whole' and could do things. Children with Still's have a higher incidence of depression than children with other arthritis types because it is so hard on the body and the mind.

Thinking about it, I probably have been dealing with depression since about 6 or 7. I didn't know how to put it into words, but between Still's and sexual abuse I had a lot going on. From how everyone treated me being so sick, I figured I would die pretty much being a young kid and that was always tough. Even now, I sit here at 24 years old looking at my engagement ring with a mixture of joy and sorrow - part of me still feels that somehow, for some reason, I won't make it to that day.

The first time I thought about committing suicide I was probably 8. And it constantly popped up throughout the rest of my life to today... not today literally but figuratively. And a lot of people don't get why for some reason.

In the June or July of this year, I had my first appointment ever with a therapist. He listens mostly, but is trying to help me sort out all of my anger and my frustrations. Obviously as you can see, there is a lot going on.

It is incredibly important to make a mental health professional a part of your medical team. Even if you don't see that person very often, having someone to talk to that isn't a part of a situation - and that you know isn't going to gossip about it to the rest of your family or friends or tell the person your frustrations deal with about it - well, that's pretty priceless in my book.

Monday, November 19, 2012

Day 19: Traveling with Arthur #NHBPM

The holidays are upon us. It means long car rides, overnights in strange places, and spending all damn day cooking and cleaning and dealing with annoying people. Just hang in there - there's only like a month of this! Here are some tips, tricks, and ideas I have for getting through this stressful time.

  • The most important thing to do when traveling with a chronic illness is to not underestimate your illness or overestimate your abilities. Don't be pessimistic here, but just realistic - imagine what you'll need on the worst day and you'll be prepared for anything.
  • If you're traveling abroad for the holidays, make sure to have extra days of medication on hand in case the weather turns to crap.
  • Always make sure you have your necessary meds (NSAIDs, pain relievers, muscle relaxers, etc) where you can easily get to them in case you desperately need them. It might be a good idea to not leave them on the third floor of your great aunt Lisa's townhouse.
  • If you don't have a medical alert/ID bracelet, make sure to keep a list of your meds, allergies & reactions, emergency contacts, and doctor information handy. I have a list in my phone and a simple written list in my wallet. Make sure that the people you are with know where these things are in case of emergency.
  • If you have a disabled parking hanger, make sure to research the rules for use in the state(s) you're visiting for the holidays. Not every state has the same rules regarding parking meters and more with the hanger.
  • If you have food allergies, make sure people know it for their holiday cooking ideas. Don't put yourself in a place to have an allergic reaction if the decision comes down to eating questionable food - but make sure that your loved ones know it has nothing to do with them.
    • And if you're not visiting family, make sure to plan out restaurants where you can safely eat along your routes.
  • If you're staying at a hotel, make sure to ask if they have an elevator. If not, try to get the first floor.
  • If you're driving a long distance, make you can take little rest breaks to stop and stretch - and if you drive like me and the fiance do, these are great spots to switch drivers. Also, pillows are great in this situation.
  • Plot things out ahead of time and make sure to have alternative activities. If you like hiking, make sure you can have a more sedentary activity just in case your body decides hiking is a no-go.
  • Communicate with your traveling partners how you are feeling so that everyone is on the same page. I have been saved numerous times from the fiance noticing something I was in denial about during travels.
  • Have a mobility aid to back you up! I took a cane on our big vacation this year and ended up not needing it at all. Having it there though took a lot off my mind.
  • For heaven's sakes, NAP! Don't fight the fatigue all the time and make sure that you can do some of your planned activities on different days if need be.
  • If you're flying, don't be afraid to ask for a wheelchair. It'll make boarding go faster and people are very willing to help.
  • Plan snack breaks to keep your energy up. Cashews, while fattening, are great for this.
  • Make hand sanitizer your friend!
  • Let anyone who will be coming for thanksgiving or other holidays know how dangerous it is for you to even get a cold and ask them to stay home if they don't feel well.
If you have any more tips to share, please do so in the comments!

Happy travels!

Sunday, November 18, 2012

Day 18: The bedside manner police #NHBPM

Today's prompt is "I want to change THIS about healthcare."

There are so many things I wish I could change about healthcare. Golly. The biggest issue - and I think we can agree on this - is dealing with doctors who either don't listen, don't believe certain conditions are real, or who don't think you know enough about your own condition because you didn't go to medical school.

Unfortunately, right now there is little you can do when you encounter these kinds of docs other than to leave them behind in the dust. Some of us go to free clinics or are a part of programs that won't allow us to switch doctors. For this bunch, I feel saddest of all. There is really nothing to do aside from perhaps report the doctor to some kind of board or website and hope that it gets investigated.

In a perfect world though, we would be empowered patients and be able to do something!

Imagine a world where, when you get a craptastic doctor or nurse, you could compile all the information from your meetings and submit them to a kind of bedside manner and reeducation police. This way doctors would be reprimanded and reeducated if needed when they step out of bounds, don't listen to your complaints and troubles, or decide you have a fake disease.

The police would be made up of a combination of patients and medical professionals who, able to see both sides of the situation, are better equipped to pinpoint the problems and get the situation under control.

Wouldn't it be nice to be a part of a world where you could stop feeling helpless about your crappy docs and really do something?

Saturday, November 17, 2012

Day 17: Health playlist #NHBPM

Today, I was charged with putting together a health playlist. I have taken to YouTube to do so, since it's accessible to most and easy to share with you guys! You can either follow this link to start listening or I think just watch below? Warning though - there are about 100 songs so maybe just click the link!

Thursday, November 15, 2012

Day 15: Medical companies should use social media #NHBPM

There has been a lot of talk lately in the social media world about the frustrations surrounding the fact that a lot of medical companies aren't really on social media. From one perspective, it does make sense. Having some site where people can have unmonitored interaction or to lambaste you freely could leave the potential for a lot of problems.

From the position of us patients though, it really would do a lot of good.

One of the best things about having an online community with people who have taken similar meds or gone through negative reactions is that you can get advice on how to handle issues that arise from meds to exercises to many other things. Wouldn't it be nice to be able to contact the manufacturers of a medication when you have an issue?

Many companies have ways to contact them, like a support line. The problem with that is that, even with registered nurses answering the phone, they all just tell you still to contact your doctor. Obviously, there are reasons for that and it's understandable but it seems that there is really no recourse, no way to contact the company back to let them know what the real issue was - if it really was the med or an interaction or something else. With social media, that could be somewhat fixed.

Facebook pages allow you to review companies and their products as well as just popping in to say hi or whatever. Couldn't there be a similar form to fill out for negative medication reactions? That way others can see and know about the possibilities - and how to handle that situation - and the company could be made aware of it too.

In this day and age, social media is so key to many businesses. It is the main 'word of mouth' now and companies need to get with the times. I think each company needs a dedicated social media person to handle these issues and best think on how to respond, to record issues, and to follow up with clients. It won't take away me going to my friends first/concurrently but it will alert companies to issues they may otherwise not know - and that information could help doctors figure out why people all the sudden start back spasms the same time as starting a new drug or other reactions. It could really change lives.

Wednesday, November 14, 2012

Happy birthday Arthur!

Dear Arthur,

Can your birthday really be happy?

19 years ago today, you gave me my first sick day. You popped up with rash, with fatigue, with swelling. I didn't even know it was you at first. You're good at disguises. I thought you were someone else, someone acutely frightening but no less scary in reality than you.

Over the last 19 years, you have made me miss numerous things from most of elementary school due to having to be homeschooled to stopping grad school early to my niece's blessing... though to be fair, I'm not sure if that was you or Phoebe Fibro. I'm pretty sure you invited her though and you're responsible for your house guests.

You have caused me immense pain that I can't even explain. You've attacked my eyes, my lungs, my heart. You've forced me to buy a cane and to have more ace bandages than a middle school nurse's office. I don't wear shoes that support my feet well often, because you swell up and make it impossible. I fall asleep at random times. I have gained weight because of being on steroids for two years and not really being able to work out because, again, of you. I've gone severely depressed and contemplated suicide from a very young age because I knew the things you would do, you could do to my body. You have forced me to stop eating due to tummy pains, to limit what food I can eat, and to altogether literally get sick all over like you did Monday. You make me writhe in pain, not be able to sleep, and wish that I was anyone else but me.

But you know what Arthur?

Despite all the things you have done to me, I graduated high school with honors and with an international baccalaureate degree. I started college as a sophomore and there I met the love of my life. I went from being afraid to go and be a part of the world to late night visits to diners with friends, hiking, and going on vacations hundreds and thousands of miles away. I have learned to live in spite of you, to prove a point to you that you seem too daft to get - you are Arthur. You are a part of my body, but you are NOT a part of me. You will NEVER be. I refuse to let you limit me more than you clearly have the power to. I will not live my life focusing on the things you are capable of, because life is both too short and too long to live like that. I refuse to do that, to put my future husband or my sister or my niece through that. I will take care of myself, but I will not allow you to run my life.

So happy birthday you bastard.


PS: If I had a dick, this is where I'd tell you to suck it.

-K-dubs

Day 14: D'oh #NHBPM

Today, I'm kind of building off a few prompts and sharing the issues that I have had in some support groups that have either led me to leave them or to correct serious misinformations.

For me, the best way to deal with any negative feedback or incorrect information is to be incredibly educated about your illness - know the stats, symptoms, medications, etc.

It's a very interesting to study. For the most part, I think that we all expect people who are outsiders to not understand our illness or to be promoting misconceptions or miracle cures. Sadly, I think the majority of wrong information actually comes from us ourselves.

In the last few months, I have left a lot of support groups because there is A) a ton of freaking drama and I just can't handle it, and B) a lot of idiots. The two may be related.

There are a lot of people joining support groups lately to spout junk about natural remedies, cures, and lies they sell themselves to deal with their disease. The latest one I ran into was a guy assuring someone that she would totally go through remission and shouldn't really worry about her Still's right now.

Um, what?

Turns out, a lot of doctors apparently are skewing the facts (or are complete idiots which totally would not surprise me) and telling people that Still's is a one time thing for the majority of people and that, given that, they will be able to return to their normal lives soon.

Again, what?

It would be so easy to get very defensive and just go off about how I have been sick for 19 years (pretty much exactly today actually - more on this later), how I've done a million things from juicing to natural remedies to more and it never did anything, and how despite a trillion prayers, blessings, copper bracelets and more I still am ill.

Oh, it is soooo easy.

But the right way to approach it is with information. Only 20% of all Still's patients experience any kind of remission. Of that, the majority is short lasting and when the disease does pick back up it is often worse. That's not according to me - that's according to the Arthritis Foundation and an article written for them about Still's by the foremost SD doctor, Dr. Cush.

By having that knowledge, I was able to give an explanation why someone was giving misinformation and it was appreciated by many - both those who did know this and were drafting probably their own angry responses, and those who didn't and really wanted to know their odds of remission.

We have to be real with each other. Lies and misinformation only separate us and make the case of why we need to raise awareness somehow seem less.

Tuesday, November 13, 2012

Day 13: The Secret Garden #NHBPM

Today's prompt is to share my favorite book and talk about how it ties into my health or my life. My favorite book does both.

My great grandma had MS for many many years. For most of the time I can remember her, she was in a motor scooter - which definitely frustrated her but she turned it into a plus by doing fun things like pretending we were racing cars in my backyard with me and my sister.

One of my only real memories of her before the scooter became a permanent fixture in her life was a visit to the movie theater to see The Secret Garden. The story - whether it be book or movie - always reminds me of her, her tenacity in the face of her illness. It also reminds me of how dangerous it can be to only focus on being sick and that I need to remember to - wait for it - stop and smell the flowers.

The story focuses around a little British girl, Mary, who lived with her parents in India. Her parents were very wealthy and so Mary was raised mostly by servants until the day cholera hit their home. Mary's parents and many of the servants died. She then has to move back to England to live with her uncle, whom she has never met and is kind of a dick who travels like constantly.

He's a dick cause his wife died and he decided to hide everything they enjoyed together because it was too painful for him. Eventually, Mary finds out about two of these hidden things - the garden her uncle and dead aunt tended together and their son whom everyone says is very ill. His father has not really ever spent time with him, most likely because of how similar he looks to his mother. The child is 'so sick' that he doesn't see anyone but his nurses and his uncle, a doctor. The child is convinced that he will die he is so ill.

Mary is eventually able to bring the garden back to life and, due to the son's somewhat princely stature, he is able to get outside and help tend the garden. Being out and about in the end eventually helps him to feel much better. The uncle/father is led to the garden and, despite the fact that he should be pissed beyond all belief, he is pleased - both to see his son well and the garden beautiful again.

You should really find the movie, if only to see Maggie Smith be a hard ass as the main caretaker of the children and the house. She's like 80 times as badass as in the book but I just assume that's what Maggie brings to every character.

Monday, November 12, 2012

Sleep Studies Suck

And it's not just cause of alliteration.

I toss and turn like a banshee in the night and I like to be on my side - both things that are made much more difficult when you're attached to 36 wires.

But I'm getting ahead of myself.

I got to the sleep study and waited for about 10 minutes for a sleep tech to take me and the other two gals back to the orientation room. We heard a dude talk about the dangers of sleep apnea and what a sleep test was like and then we were taken back to our individual rooms. My favorite part of it all?

A guy in a hospital bed!


There was a House marathon! And I also had a spinning chair!

They should have known better!

But looking at the shit I was about to be attached to wasn't very exciting.

Those are hanging off my head??

My lab tech came in and glued the metal probes to my head and also attached other sensors to my face, chest, and legs. Then the trick was getting comfortable in bed with all that on...

That never happened. My neck wasn't being able to get enough support because of the pillow situation with all those sensors. I also wasn't able to really get on my side once I had gotten my fill of House. Sleeping in a bed with crap support wasn't so fun either. Needless to say, Friday was not a good neck or back day at all.

I do not have sleep apnea, but they did observe something else called alpha intrusion. Basically, this means that my brain was sending waking waves during stage 4 or REM sleep. While they weren't always intense enough to wake me, they were intense every time to bump me out of REM. This means that I was not getting enough restful sleep - which explains why I slept for 2 hours when I got home... after spending half an hour in the shower and using half a bottle of conditioner to get all that goo out of my hair.

Submit this baby to Playboy!

This alpha intrusion is very common in people with pain and chronic illness. It's a very interesting thing to learn about, as it isn't anything I had ever heard before. I wonder how many of us deal with that?

Day 12: Wiiiiii #NHBPM

Today I get to tell you about my favorite health related game. It would be really easy to say it's Pandemic 2 but I'll try to take it seriously.

I don't use it as often as I should, but I freaking love my Wii Fit.

FEEL THE BURN

Not only are there "normal" workouts like yoga or strengthening exercises like pictured above, but there are all sorts of games and tasks you can do like skateboarding or segwaying (I'm not kidding) or even extreme hula hooping. The things are usually pretty easy to do, even if you are having a tougher day. Clearly some of them - like free running - aren't maybe the best for us. But rhythmic kung fu totally makes up for that.

It's like I'm back in high school!

One of the things I like the most about it is that there is a focus more on how strengthening your body and working on your posture and balance helps to make you healthy. Sure, they do also focus on weight and BMI but that isn't the main focus. With a gigantic BMI I can totally appreciate that.

It was worth the extra money for the board and game to me - despite the fact that I barely use it. I also barely use our gym membership that costs us 60 bucks a month. Having the Wii Fit allows me the ability to not feel like I need to leave the house to try to workout - which is important since sometimes I want to workout but leaving the house or driving isn't necessarily the best or easiest thing for me to do.