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Category: health activist writer’s month challenge
Day 9: Caregiving #HAWMC
Today’s post centers on tips and advice to the caregivers out there. Over the past few years, I have posted several things focusing on caregivers that I felt needed reposting. Take a look!
- A review of Partners in Healing: Simple Ways to Offer Support, Comfort, and Care to a Loved One Facing Illness by William Collinge, PhD.
- An interview with Carla Jones, author of Death by Rheumatoid Arthritis
- A review of After the Diagnosis: Transcending Chronic Illness by Dr Julian Seifter & his wife Betsy
- A study showing that partners of those with RA and like diseases suffer as much emotionally as the patient themselves
- A post from last year’s HAWMC focusing on my support system
- Two posts on sex and chronic illnesses:
- Only a minority of those with RA studied in long-term relationships report impact on the intimate aspect of their lives
- A very in-depth post on sex in my relationship, with tips and links for further research
- An interview with my fiance about the difficulties of being in a sometimes caregiver role, and tips/advice for others doing the same
I hope that this lovely collection of links can help to add to the knowledge that you, as a caregiver, are not alone – and that relationships can survive and even thrive through these chronic illnesses. It took living my own life to realize that, as bad of a third wheel as Arthur can be, he can’t ever severe the relationship I have with my fiance. I refuse to be another one in a long line of statistics proving that love loses in the chronic illness game. But that takes understanding the difficulties that come along with A) dating me and B) dating Arthur – realizing that it is just as hard for my fiance to live with Arthur as it is for me, and maybe even emotionally more difficult because he knows there is nothing he can do to fix this for me.
Just as a final remark to all my fellow spoonies – please remember that you’re not angry with your significant other, but with your illness. It makes a huge difference when you stop taking out your anger on the people who are there to support you.
Day 8: Arthur the Animal #HAWMC
Today’s prompt is a little tricky for me. I’ve been asked to write about what animal my disease would be if it was one. The thing is, though, that I love animals and I can find reasons for their actions so to compare any animal to Arthur is just insane.
If Arthur was any kind of animal, he would clearly be a human. He responds to the same situation differently always. When he doesn’t agree with what you’re doing, he will let you know immediately. He attacks no matter the situation, no matter how I feel or how much I try to be normal or healthier. He discriminates against me with the fire of the Westboro Baptist Church and doesn’t care to hear any rationale or to be reasoned with.
There is no animal so ruthless in nature that attacks without any provocation like Arthur, and no animal deserves to be compared to this being that can so willingly destroy and take lives. Animals are so much kinder in their killings than Arthur and the rest of humanity.
Day 7: Sensationalization of Illness #HAWMC
To be honest, there have been too many sensational cures going around in our lovely media lately that I don’t want to add to it or promote it. I will say that Dr Oz is one HUGE part of what I’m talking about, showing sensationalized “cures” for JIA without showing the medications individuals were on, or how it could be far more likely that an individual was misdiagnosed and that the treatment for one thing “cured” them of the incorrect illness.
I’m tired of being told to eat rum-soaked raisins. I’m tired of people telling me to avoid 8 different food groups. I’m tired of having all of these idiots think ‘arthritis’ is all aches and pains, and not see the chemotherapy, stem cell treatment, failed meds, and friends we lose because as a society we fail to see the value in researching new treatments and cures for autoimmune diseases.
Laura died because doctors – at a hospital she frequented – didn’t know how to handle someone with an autoimmune disease and practically non-existent immune system due to the treatments. Forgive me if I don’t want to lend credence to the idiots who don’t understand that these diseases are deadly.
Day 6: Dear Arthur #HAWMC
[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 5: What I want to be when I grow up #HAWMC
If there were no limitations to what I could do with my activism, what would I do?
The fiance and I had a conversation at one point where he said that he wanted a good enough job with the right kind of pay that I didn’t feel like I had to work.
Holy crap, I marrying that awesome man. Sorry, still a little surreal to me.
He said that he wished I could have my activism and my blogging as my job… if I wanted of course. And to be honest, this is totally what I would want.
If money was no object right now, taking care of myself and being an activist for others would be my job. If my health situation was no object either, I’d love to be a yoga instructor but that’s not happening anytime soon!
All I’ve wanted to do with my life is to help people. Who could ask for a better job than that?
Day 4: Sharing Resources #HAWMC
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.
- Arthritis Research UK
- A rundown of Adult Onset Still’s (AOSD)
- Arthritis Care (UK)
- Children’s Chronic Arthritis Association (UK)
- Glossary of terms associated with Still’s
- A case study on AOSD
- National Rheumatoid Arthritis Society (UK)
- International Still’s Disease Foundation
- The Spoon Theory
- Confused about Still’s Disease?
- Rundown of Still’s as Laura experienced it
- A Life Reinvented
- Amelia June’s Battle with JIA
- IAAM: The International Autoimmune Arthritis Movement
- JIA Mom’s Blog
- Juvenile Arthritis Association
- Parker’s Purple Playa Power Pounding JA
- RA Guy
- The Kid With Arthritis
- Chronic Curve
- The Blue Ribbon Project
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
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.
Day 1: Why I Participate #HAWMC
This is the third year of the Wego Health’s HAWMC, or health activist writers month challenge. Last year was the first year I participated, but only because during the inaugural year being a full-time employee (basically running a hotel) and going to school full-time was a little much on its own – add in being sick and having to write a post every day and I was ready for a nap just thinking about it! But I definitely thought it was a cool idea and I’m glad I could participate last year.
I find often when blogging that I hit a really good or really bad health streak and so I avoid writing for a while. Currently, I’m in a good streak, being able to run (granted, a quarter of a mile a day or even a half!) again and planning my wedding for next summer. Oh busy busy wedding planning! I find HAWMC gives me a reason to come back and really focus on writing again. It doesn’t help that it ends right as May begins, bringing with it a walk for the Arthritis Foundation, World Autoimmune Arthritis Day, and National Arthritis Awareness Month! It’s a busy time for health activists and HAWMC helps me get in the right frame of mind.
As such, welcome to a month of actual posts every day! Thanks Wego Health!