Wednesday, February 27, 2013

Happy birthday Sir George!

Sir George Frederic Still was born on February 27th, 1868. If you haven't guessed by now, Still's disease is named after him. He also did a lot of work with ADD and meningitis.

Helping children: like a sir

There is much to know about this man, and to know the full story you can pop in on my sources here and here. This is going to be the short-ish version.

In 1894, Sir Still went to work at the Hospital for Sick Children and began to study a form of arthritis occurring in children similar to adult RA but with new specifics like organ involvement. He wrote a thesis on this new juvenile arthritis in 1897, becoming a savior in my eyes. His hard work eventually earned him a sweet permanent position as the first ever Professor of Children's Diseases at King's College Hospital.

He did a ton of work with diseases in children, but never really wrote about the disease that bears his name after that thesis. Dude had all sorts of honors though, from serving as princess Elizabeth's doctor to being knighted to writing textbooks and all sorts of appointments.

Without George Still, I have no idea where I would be right now. This man was incredibly brilliant and knew he had to study this childhood onset arthritic disease more closely. Because of his research, I am alive today really. This disease is so rare that it's often mistaken for things like leukemia and fifth's disease.

With only a few minutes left in your birthday George, I thank you so much for everything you did for all these children. And I toast you with my Enbrel shot!

Saturday, February 23, 2013

Does being chronically ill literally make you stupid?

I was just reading a bunch of books on chronic illness as you may see from the reviews in some of the more recent posts. In one of the books, The Pain Chronicles by Melanie Thernstrom, I read a disturbing fact about how the grey matter in our brains deteriorates the longer we are in pain.

Um, what the fuck?

I also read, though, about how a person with a bad hip had regenerated grey matter once the hip was replaced and the pain stopped.

Obviously, this is something that has been bugging me. Not only is this especially disturbing for those living with chronic illnesses in general, but I believe it's especially disturbing for those of us who fell ill as young children. I was starting to really worry about how this wasn't really a known fact, even in the chronic illness community, until one of my favorite bloggers Andrew Sullivan mentioned some interesting findings about T cells and brain function earlier this week (if you want to read the full study Sullivan refers to, click here, though be warned it's a lot of terminology or you can click here for an interview with the dude in charge of the study).

Perhaps one of the most intriguing things about the study is that it specifically showed the involvement of IL-4 producing T cells in cognitive abilities - the T cells help improve our cognitive abilities while the absence of those cells protecting the brain allows inflammation which inhibits our thought processes! And all this time we thought brain fog was one of those side effects of chronic illnesses that were just not explainable!

For a lot of people with rheumatic diseases, the causes of their inflammation aren't known but are treated with medications we probably all know by now - actemra, kineret, ciclosporin, enbrel, humira, etc, etc, etc. Enbrel and humira are in the class of drugs that affect tumor necrosis factor alpha, believing that is the cause of the out of control inflammation. And it works for people.

The first three I mentioned - actemra, kineret, and ciclosporin - work on cytokines (cell signaling proteins that play a result in the inflammatory response in our bodies) that are known as interleukins. Actemra works on IL-6; kineret works on IL-1; and ciclosporin works on IL-2. Interleukins are another believed cause of the over-inflammatory responses in chronic illness and all three work remarkably better in people with Still's disease, whether they're young or old.

In the study, interleukin 4 is in high volume in the brain when we are well, attributing to better learning and memory skills. When we are ill, IL-4 levels are low. The thought is that IL-4 is the specific group of cytokines that tells T-cells to protect the brain from any toxins secreted, but after an injury those T-cells have to go off to fight the infection - those of us with chronic illnesses of the autoimmune kind don't have injuries/infections/etc all the time, but our illnesses fight our own bodies like an infection or an injury. Essentially, this creates issues with our brains where we are literally stupid for periods of time - like a flare up or period of higher disease activity.

Brain fog being something people can't understand is becoming a thing of the past it seems. Yay!

PS it took me like four days to write this post. Thanks T-cells!

Thursday, February 14, 2013

Happy Valentine's Day

Hooray for candy and card companies creating holidays to earn more money!! Whether you celebrate it or, like me, you don't, I hope you have a great day!

If you haven't see, the rash pictures are up on their own section of the blog here.

This weekend, I'll be heading off to try on wedding dresses with my mama, my sister, my sister-in-law-to-be,  my maid of honor, and my baby niece. If you're interested in how that all goes, be sure to hop over to my wedding blog, A Very Spoonie Wedding.

Monday, February 11, 2013

Book Review: The Pain Chronicles

The Pain Chronicles: Cures, myths, mysteries, prayers, diaries, brain scans, healing, and the science of suffering by Melanie Thernstrom is by far one of the best books I think I've ever read on the subject of chronic pain.

Unlike many who write about pain from an academic perspective, Thernstrom knows what she's talking about. This book is a mix of academia, folklore and myth, doctor's opinions, patients' struggles, and her own journey through our broken medical system. She uses her struggle to go on this journey of discovery and research with us, describing what it is like for those who may not know along the way:

To be in physical pain is to find yourself in a different realm - a state of being unlike any other, a magic mountain as far removed from the familiar world as a dreamscape. Usually, pain subsides; one wakes from it as from a nightmare, trying to forget it as quickly as possible. But what of pain that persists? The longer it endures, the more excruciating the exile becomes. Will you ever go home? you begin to wonder, home to your normal body, thoughts, life? (pg 5)

Thernstrom experienced a sudden onset of pain that went by for years without treatment. Eventually she would be diagnosed with an arthritic condition, causing terrible pain in her cervical spine and arms. She normally writes about death, non-fiction mystery type books. And yet, there is something so fascinating to her about the pain she experiences. She investigates cutting edge technologies and has written a few books and many articles on chronic pain, narcotic pain relievers, and more.

She goes through many studies, discussing the crack down and alienation of hundreds of patients who need narcotic medications, the apathy patients view treating their pain with, and even how pain affects genders, ages, and ethnic groups differently. She also discusses the effects of chronic pain on other parts of the body, including the fact that gray matter disappears more quickly in people dealing with chronic pain and so you actually do get more stupid the longer you're ill... and then sites a study on hip replacements showing how the gray matter comes back once the pain is taken care of! Where are the articles on that to cheer us up on tough days? (For an update on studies regarding this, check out this post)

She spends time with patients and doctors dealing with chronic pain, noting how chronic pain alters ourselves and turns us into essentially three people - "a feared-for self, an actual self, and a hoped for self" that must be cared for by our health care professionals (212). This may help to quell the fears for some of us that we have a tiny case of multiple personality issues. In reality, this may help us. Think of a time where you were scared about a treatment and yet moved forward because the hope you had overshadowed the fears. I for one appreciate my three selves.

I seriously wish I could just email everyone PDFs of the book, but that's not possible nor is it fair to Thernstrom's writing abilities! I feel as though I'm not saying enough, and yet to say more would be too much. This book is amazing and has helped me to understand a lot of the processes that go on in our bodies even more than I thought I did - and that's saying something!

Sunday, February 10, 2013

Book Review: The Five Gifts of Illness

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!

Monday, February 4, 2013

In Laura's Honor: A Rash Collection

The last week, I have thought so much about Laura. I've spoken to several of her friends and to her fiance's mother as well. They are working hard to raise awareness and keep her fighting spirit alive. It all just makes me think more of how I can continue to do that as well.

One thing Laura really wanted to work on was to collect pictures of the infamous Still's rash to have as a reference for parents and patients looking for an answer and to know that they are not alone. We had talked about getting rash pictures about a year ago now, so I have so many of my own.

Laura did so much to inspire, support, and help us all through hard times. Now that she is gone we too must pick up where she left off and continue to help each other and the patients yet to come.

I need your help.

I want to collect rash pictures and feature them on a new page on this site in Laura's memory. I need pictures other than mine to make this happen - your pictures, the pictures from your sick brother or baby girl. Spread the word to others you know facing Still's so that we can try to create a database of the different ways this rash can look and how it can manifest.

You can email pictures or video (or whatever!) to Kirsten@notstandingstillsdisease.com.

Sunday, February 3, 2013

Welcome to February!

Sorry I've been quiet lately! I've been busy doing great things!

I've been picking up the pace of my pool PT, working out at the gym more, and had my nose stuck in several books I hope to be reviewing soon.

I even ran half a mile the other night. It was the most amazing feeling I've had in a really really long time. I've actually been hitting the gym and/or the pool every day the last few days and it's really helping me improve things. My spine PT lady was so happy with the progress I've made she is having me go through the gym at the PT center to see what exercises she approves of me doing at this point in combination with the pool... I don't think running is one of them though! I'll be posting some of my exercises along with example pictures soon.

Along with the book reviews and exercise, I hope to also be doing some posts to raise awareness and collect some information. I may even be throwing out a call for stories to go into a book!

*gasp!*

I will be posting more this month - it's a goal - so keep your eyes peeled :)