Category: Laura

Day 6: Dear Arthur #HAWMC

Posted on by Grayson

[In case you’re not familiar with my blog, I’ve had a rare form of juvenile arthritis since age 5. Arthur has been my nickname for him ever since the diagnosis.]

Hey Arthur,

Last time I wrote to you, it was ‘celebrating’ your birthday. I was thankful to you for the people you allowed me to meet and befriend, and proud of myself for all I’ve accomplished in spite of you. A month later, you managed to murder, with the help of idiot doctors, one of the most beautiful, kindest women I have ever had the chance to know. You robbed her of her wedding day, the love of her life, and the friends and family who loved her so.

How dare you.

How dare you take her away from us. She provided support and understanding that no one else I know can. She loved unconditionally, cared even if someone’s pain may have been lesser than her own, and was always there for each person she knew. How dare you force Matt and his sweet family to handle her death when they should be picking out flowers and a venue for the wedding.

We were in the same place in life – sick, engaged, blogging, and pondering the children issue. She was the twin I never met, in every sense. Planning a wedding together was our goal. We were going to share ideas and help each other not freak out. When I bought my dress, a time when any girl would be emotional, I cried not because of the joy of finding the dress but the sadness that I could not share that moment with her. My instinct was to send her a picture right away, but I know I can’t and it just breaks my heart. I can’t even think of getting ready for my wedding without her to talk to.

It has been four months now since you took her from us. I find myself even more than before struggling with the idea of a life after death, not because I suddenly believe in a god but because I don’t want to believe that she’s not around anymore and I don’t want to believe that I would be permanently gone from my fiance either should something happen. I’ve always thought many religions were a way to explain what we don’t understand or don’t want to think is true, and it’s very hard for me to want to go against all my reason to believe Laura is still around somewhere waiting to welcome us to a land with no pain.

Arthur, you are so lucky you’re not a real person because the hurt I want to inflict on you is indescribable. I know so many little kids with this, and I can’t help but thinking how scared I am for them now having known someone so wonderful lost because of you and idiot doctors. There are a lot of idiot doctors, especially when it comes to you.

One of the things that Laura taught me was how to come to really understand my body and not push it further into a flare-up. She encouraged me to get in the pool with my PT ladies and take back my body. Because of her, I am able to run now – not even close to a mile a day, but it’s getting there. I run because it makes me happy, because it challenges you, because she would be proud of every step.

I thought I was determined back in November to beat you, but there is no way to put into words how much fight I have in me now. You will not win. You will not take me from my family and friends. You sure as hell aren’t going to make me take anything you dish out lying down anymore. I refuse.

Day 4: Sharing Resources #HAWMC

Posted on by Grayson

One of the best resources ever for me was my dear late friend Laura at Still’s Life. Many of the pages and sites she shared got me through a lot of pain, worry, and frustration. Using her as a guide, here are some really great pages, sites, and blogs to help you cope and learn more about Still’s Disease.

There are many other resources out there to explore, but these are great places to start no matter if you, your child, or someone else dear in your life is dealing with Still’s Disease.

Day 2: The Top 5 Things to Know About Still’s Disease #HAWMC

Posted on by Grayson

The primary illness that I deal with is Still’s Disease, or Systemic Onset Juvenile Idiopathic (or Rheumatic) Arthritis. You can read about my personal story here. You can find out a little more about Still’s here, Sir George Still here, and complications associated with the disease here.

The top five things I want people to know about Still’s are:

  • It requires drugs used in chemotherapy and organ transplants, like many other forms of autoimmune arthritis
  • It causes a malar rash and high spiking fevers (high enough they can cause brain damage). The rash is exacerbated by emotions, fatigue, temperatures, manipulation (Koebner phenomenon), and disease activity. My face isn’t red because I’m fat and walking – it’s red because I’m ill.
  • There are only technically two drugs on the market FDA approved to treat this disease, and they’re usually the last in line to be used as treatments unless you find a very aggressive doctor. They also are some of the most expensive – and dangerous – drugs for autoimmune arthritis.
  • Some work with stem cells has been done with this disease. For many it did nothing. Some died in the process. Others survived and had remarkably improved disease activity, including remission.
  • It can kill. In fact, complications from this disease killed one of my greatest friends and fellow blogger, Laura from Still’s Life. She was the first person outside my family I found with this disease, and she changed my life for the better in ways I can’t even begin to put into words. She has been gone for nearly four months and I still have to stop myself from texting her about both of our upcoming wedding plans. I miss her every day.
I also live with a number of conditions related to my Still’s – asthma, psoriasis, fibromyalgia, Sjogren’s Syndrome, scoliosis, and a number of other bone deformity issues.

Book Review: The Five Gifts of Illness

Posted on by Grayson

Disclaimer: I first just want to say that this book was a good one for me to read, but it was a hard one. Many of you know Laura, at least from her blog, who died in December of sepsis treated poorly. I had no idea when I picked up this book that the author fought her own battle with sepsis, staying in the hospital for weeks while Laura was sent home after two days and subsequently died two days after that. The author, like many health activists, is very frank about the things she goes through and this event is no different. She completely describes in agonizing detail what it felt like and how her thoughts wandered and she thought she would die. I had to stop reading the book for a long while due to the shock of reading it and not being able to turn away, so for those of you not interested in that pain, skip pages 97-108 of the book. If you’d actually like to read the excerpt, please contact me and I can get it to you.

Phew.

The Five Gifts of Illness by Jill Sklar is a wonderfully truthful book about the topic not talked about often – the good things that being chronically ill can bring us. She definitely doesn’t play down the bad side of things, but notes how her own life changed when she was able to see the illness as a gift-bringer instead of a demon (all the time anyway).

The five gifts are as follows: relationships, time and being, altruism, emotions, and goals. Our illnesses give us new perspectives on these aspects of life and turn us into people who feel more, laze less, and love with our full hearts.

In the chapter on relationships, Sklar discusses how our illness improves relationships we choose to have, forces us to shelve relationships better left forgotten, and allows us to deepen our relationship with ourselves. I definitely feel as though many of the relationships that I have chosen to continue with friends are deeper than they may have been otherwise. The good ones understand that I can’t eat certain places or how my illness may force me to cancel last minute and they handle it with grace.

In ‘Time and Being’ Sklar points out that many of us have a new appreciation for time – our own time and the time of other people. I, for one, am a stickler about people being late or cancelling last minute because I feel that they don’t understand how much effort I had to put into being okay for whatever our plans are, from resting more in the week leading up to our date or whatever to altering taking medications to avoid a med hangover.

The chapter entitled ‘Altruism’ focuses on how so many chronically ill people start a blog, a website, or at the very least reach out to others via a support group. It is all with the intention of helping each other, sharing the knowledge that we have gained, and helping people get the best care possible.

The chapter on emotions discusses how we must strive to live our lives in balance. It can be very difficult to do, and may require constant re-centering for most of us, but living with our emotions in check – realizing what we should be emotional about, etc – helps to keep us healthy… well, as healthy as we can be anyway. Things like fear, sadness, and stress can weigh us down and actually make our conditions worse.

The final gift of illness is about goals and how we realize our future. We have to come to terms with the goals we can achieve but it doesn’t mean to discard goals a little more out there. Last year, I would’ve said there was no way I would be able to run again after using my cane so much in the beginning months. However, I’m running again… not that I really should I’m sure but whatever!

I won’t go over many of the other chapters leading to the gifts because we don’t want to ruin the whole book for ya! But I will say that Sklar has a very matter-of-fact way of writing that is endearing to chronically ill patients, I believe. I’d definitely recommend it for both the chronically ill person you love (especially yourself!) and the person loved by the chronically ill person?

Brain fog. Whatever. You get my point!

2012: A Year in Review

Posted on by Grayson

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.

Existential Crisis Mode: Defcon 2

Posted on by Grayson

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

In Memory of Our Sweet Laura

Posted on by Grayson

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.

Still’s Disease Community Project

Posted on by Grayson

OMG YOU GUYS I’M SO EXCITED.

Okay, maybe that was a little much 😉

But seriously, super excited.

Laura over at Still’s Life had a brilliant idea. And I’m not using the word brilliant just because she’s from the UK and I love the way that word sounds in that accent. It is actually a bloody brilliant idea.

In her latest post, Laura spent time documenting her Still’s rash and what kinds of symptoms present systemically when her rash appears. She had the wonderful idea to create a kind of Still’s Community project. If you’ve been keeping track of your rash, or you’re interested in doing so for a bit to help out the community, please contact her! I, for one, will be monitoring my symptoms a little more closely and trying to capture pictures of my rash in order to help with the project.

Why?

When I was first diagnosed waaaay back in 1995ish, there was literally nothing online about Still’s Disease. Even now, there are some support groups and some of them have pictures, but you have to dig for them. In fact, I’ve actually noticed a lot of my pictures show up if I search images for SD. Go figure 🙂

But I digress…

Imagine a family who has an ill child and they’re desperately trying to find the answer. They go online and they find a ton of pictures, complete with lists symptoms and pains that present with the rash. Imagine a child not having to wait over 6 months for a diagnosis, but instead being diagnosed early on enough that medications can give him or her hope of remission. Imagine what we could do for others who go through this pain – how we could help stop some of that pain for others. Imagine you taking part in that, and how awesome you’ll feel when you know you’ve helped people like that.

So pleeeeaaasssse, please, please consider hooking up with Laura or myself on this project so that we can help raise awareness and understanding!