#HAWMC Day 1: Health Time Capsule


April is Health Activist Writer’s Month – a month dedicated to celebrating health writers and bloggers. We host the Health Activist Writer’s Month Challenge (#HAWMC), an online writing workshop: 30 posts in 30 days. Focus on being creative when communicating about health topics! Learn more: http://blog What’s in it? What would people think of it when they found it? wegohealth.com/tag/hawmc-2012/

Today’s prompt: Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112.

My time capable would include a letter to future generations about living with rheumatoid arthritis and the fears that I have and that I am sure many others have as well.

Dear future health activists:

I am hoping that by 2112 there will be a cure for all autoimmune diseases so if that is the case, it is important that people 100 years into the future understand what living with rheumatoid arthritis is like in 2012. My grandfather was diagnosed with rheumatoid arthritis in the late 1960s at a time when biologic agents and disease modifying drugs did not exist. This meant that RA patients did not live normal lives and had no options to prevent and/or slow down the progression of the disease. I consider that generation of RA patients to be heroes who paved the way for future generations afflicted with RA.

Being a parent with RA, I know the limitations that this disease poses. At the same token, I am relieved that I am the one with RA and not my loved ones, especially my children. I always worry that I pass this disease on because RA is in my genetic line. In fact, genetics plays a role in the development of the disease. RA caused my maternal grandfather so much pain and suffering and eventually took his life and as a result, I am afraid to pass this disease on to my children.

I hope that in 100 years that the genetic trigger of all autoimmune diseases is discovered along with some kind of method to shut that trigger down. See, I can deal with all the other triggers that are not in my control but knowing that I can pass this disease on scares me.

I have learned to overcome the limitations that RA poses on my life. However, I am not sure that I can watch a child or grandchild struggle with the same obstacles and limitations. I pray that by the time 2112 comes that no one has to wonder about remission, about a cure, or even about prevention. I pray that science and medicine have evolved as they have in the last 40 years because I cannot imagine my grandfather watching me struggle in the manner that he did. I am glad that he is able to look down and see the positive affect that biologic agents and disease modifying drugs have had on my life. Without them, I would have suffered in the same fate that he did. Additionally, I want to be able to look at my children and grandchildren and know that their fate was much better than mine was.

It’s not too late to get a friend to join us! It’s easy to catch up and jump in – so if you know someone who may want to join us (or if someone asks you as they read your posts) – the more the merrier. Just have your friend or community member sign up here: http://info.wegohealth.com/HAWMC2012/ and we’ll send him/her all 30 prompts!

The Health Activist Writer’s Month Challenge 2012


Health Activists are incredible communicators, always sharing great info, ideas, and support for their online community.  It’s time to get extra creative! April is our Health Activist Writer’s Month and brings the official Health Activist Writer’s Month Challenge (#HAWMC).  

We’ve prepared 30 health-related prompts that will help you get creative on your blog, facebook page, or health community all month long.  Take the challenge and do a post a day for all 30 days of April!

Sign up now and we’ll send you all 30 prompts before April starts so you can start your planning (and writing!) early.  We’ll also send you 30 images you can use on your blog to show your readers that you’re participating in #HAWMC.

#NHBPM Day 30 Play that horn


 

Today’s Prompt (and the final prompt for November): Play that horn. Want to hear a secret? You’re awesome. (It’s actually not even really a secret.) This is going to be hard for you, O Modest One, but you gotta give yourself props today. Write three things you love about yourself – things you’re great at – or just want to share. Don’t you dare signpost or undercut those self-compliments!

 I have never been really good at complimenting myself or tooting my own here so this one will be a challenge. But here goes:

I am smart.

Despite my fear of failure and being my biggest critic, I know that I am smart.  I have an amazing ability to learn, reason, and understand.  Here’s the thing, I am not just intelligent in an educational sense. I also have a great mental ability to see facts, meanings, relationships and truths that others don’t see. That was something I realized about myself even as a child. It is also one of the main reasons I am strong.  My strength comes from the ability to be able to see things that others don’t see and to find resources and information in a way that others can’t.  If I wasn’t intelligent, I am not sure that I would be strong.  I often joke and say that both these things are a gift and a curse.

I am strong.

Sometimes, I even amaze myself with how strong I am.  So many people don’t understand why I am this way but I have enough people in my life that respect me for this. I emailed a dear friend of mine yesterday who is currently dealing with some tough stuff because her adult son has gotten himself in trouble yet again. My words to her were this:

For as long as we have known each other, we have shared all of the stuff that we can’t share with anyone else.  We have helped each other get through some really tough stuff and we have gotten through it all.  I realized that the reason we are tough is because we are tough together.  We are not like those women that cry during tough times or that fall apart or do crazy stuff to ease the hurt.  We are the kind of women that continue to stand strong during the worst storms and while sometimes, while I wish I was able to fall apart like everyone else, I am glad that I am not alone in my strength.  I am here for you and I will help you to stay strong – like you have always done for me.  

After I typed those words, I realized that my strength and hers were unique. While weakness is not a bad thing, for me it is not something that is even possible.  For a long time, I thought that there was something wrong with me because I was strong especially in situations where I should I have fallen apart, but I have since realized this was how I deal with bad situations.  I dive myself right into to the problem to find a resolution because this is how I cope and we all have our own ways of coping.  Being strong is how I cope.  

I am a good mother.

For a long time, I doubted my ability to be a good parent because I was a working mom.  Then, RA and fibromyalgia came into my life and I realized how my strength and my intelligence played a big role in my parenting. I learned the hard way how to prioritize and what was most important in my life. I thought in the beginning that I could still do everything I did before RA and fibro and while it took some time, I learned to accommodate my health into my life while still putting my children first.  Of all the things I know I am good at, I am great at being a mom. In my case, it involves a lot of juggling but my kids are my priority above everything else.

My kids are reminder that everything is possible. I remember a year after my diagnosis my eldest son told me that he wanted to be important just like me.  When I asked what he meant, he told me that I help so many people and he admired me for that. That conversation is one I take with me every day since. Even when I feel physically and emotionally drained by my health; I know that my children need me to set an example for them. I want them to see that success is possible despite obstacles.  My example is evident in my children because I see how independent, strong and empathic they are since chronic illness being a part of our lives.  I know that they get this by watching me and all it takes is a smile, a giggle or that bright look on their faces at the end of the day that means that they are so glad to see me to remind me how blessed I am and what a good parent I am.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

# NHBPM Day 29: Greeting Post Card


 

Today’s prompt: Greeting card post! The greeting card industry is all about writing generally universal feelings in a presentable way that you can use to express yourself when you just can’t think of the words to say. Write a greeting card for someone in your community to help them express themselves about a new diagnosis, treatment, or experience.

I will make this post short and sweet.  I pulled the quote from my Dear 18 year old me post.

Photo front of card.

 

Note inside.

Sorry about the new RA diagnosis.  The first year will be a tough one as your learn all about RA but know this. Despite everything, you will learn that you are smarter than you think, braver than you know and stronger than you ever thought possible.  Life will test you and you will rise to every challenge.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#NHBPM Day 28: RA, It’s Not Just Arthritis


 

Today’s Prompt: Say WHAT?! What’s the most ridiculous thing you’ve heard about health or your condition. Was there any context? What did you think at the time you heard it – and what do you think of it now?

When rheumatoid arthritis came into my life, I eventually got tired of  hearing that it was “just” arthritis.  Here I was struggling with this new diagnosis and I was in a lot of pain because I had not yet found a treatment plan that worked for me, and what I was going through was being minimized as “just” arthritis.  I would hear things such as “we get arthritis as we get older,” and “well let’s face it, you are getting older.”  Seriously, I was 32 when I was diagnosed.  If I was 50, those words would have made sense to me but in my early 30s, they made very little senseHearing “it’s just arthritis” didn’t really help and even osteoarthritis can be pretty painful so to that something is “just” simple doesn’t minimize what the sufferer is going though. Even so, arthritis from age and wear is tear is osteoarthritis and it is definitely not “just” arthritis.  Further, it is much different than RA which is an autoimmune disease.  Not to downplay lupus, but if I told people I had lupus, I would most likely get more sympathy. However, RA was “just” arthritis.  

I would find myself repeatedly explaining that the immune system of someone with RA is fighting its own tissues as if they were foreign bodies invading.  This response attacks the joints and soft tissue around the joints and causes inflammation.  If that inflammation is left untreated or if resistant to treatment leads to joint destruction and disability.  Lifestyle changes such as weight loss and healthy eating help but they are just one small step in being the disease at bay.  Further, RA doesn’t just affect joints. It affects tendons, ligaments, lungs, chest, organs and eyes.  There are also other symptoms that RA patients have such as fevers and debilitating fatigue. Further, RA doesn’t just affect one or two joints.  It hits both sides of the body and often nearly every joint so it doesn’t even matter if the joint is weight bearing.

While we are on the subject of the notion that RA is just arthritis, there are other misconceptions that people have that lead them to the conclusion that RA is just arthritis.   As I noted before, all joints are affected so while losing weight and/or exercising can help weight bearing joints, it does nothing for non-weight bearing joints such as hands and wrists.  Also, exercise can be hard for RA patients when they in a flare and for some RA patients, the flares never end.  So, for those who have this notion that all an RA patient has to do is lose weight or exercise to feel better, imagine exercising with knives poking at every joint while you did it.

Here is another one on the list of “it’s just arthritis.” Only old people get RA because for some reason we assume that the two conditions are the same and since osteoarthritis generally affects the older population, someone my age cannot possibly have RA. Most RA patients are diagnosed between ages 30 and 50. Children can also be diagnosed with RA and most autoimmune diseases are most common in women but men are also affected.  There were people in my life that looked at me like I was insane when I was diagnosed and basically assumed I was making it up because apparently only “old people” get arthritis.

Have you even been to a new doctor or to urgent care or the ER and you tell them you have RA and they say, “your joints are not deformed” or something along those lines?  Even people in the medical profession who are not rheumatologists don’t understand RA.  They have this notion that people with RA are really sick people. I guess that beats the notion from the outside world.  (I think.) The thing is that most RA patients don’t even look like RA patients (if there is a way that RA patients should look).  RA isn’t always something you can see either.  You can see inflammation and maybe you can’t.  RA patients don’t want to be sick and we try really hard to keep our lives as normal as possible.  At night, when I lay down to go to bed, you don’t see how much a struggle that is because every joint in my body is screaming out with pain.  In the morning, it can be hard to get out of bed because of the pain and stiffness.  During the day, I struggle with joint pain and other symptoms including that weird low grade fever.  See, these are things that no one sees so to think that RA patients look different, they really don’t. The difference is that we struggle daily to feel normal and to be part of a normal world.

Last, a lot of the people that actually accept that you have RA don’t actually see you as normal.  In fact, they think that there is no real hope for those of us with RA.  For me, it has been well over three years since my diagnosis and while I am not pain free, I am in a much better place than I was that first year, pain wise, symptom wise, and even emotionally and mentally. Treatment for RA is better than it has ever been but a lot of the drugs used to treat are pretty strong.  I take Humira, Sulfasalazine, and Methotrexate.  Humira is a pretty strong drug that suppresses your immune system which means it makes it pretty vulnerable to infection.  Methotrexate is a chemotherapy drug but RA patients take a much smaller dose than do cancer patients. It is pretty effective in relieving joint inflammation and pain, slowing the disease down and preventing disability by delaying joint destruction.  Like Humira, it makes your body susceptible to bacterial infections so you have to be your own watchdog/advocate by paying close attention to when symptoms of infection start. Studies indicate that sulfasalazine is a pretty effective drug for relieving the symptoms and slowing the progression of RA. Combination treatment with RA medications is the new norm for treating RA patients.

Every day, doctors learn more about RA and autoimmune diseases.  Also, new treatments are popping up every day and these medications continue to help people living with RA to have normal lives. I know that there is hope despite RA and the years have taught me quite well that RA isn’t “just” arthritis.  That statement no longer bothers me and I no longer feel to need to have to explain my disease to anyone.  RA is a part of my life but it no longer dictates it.  

#NHBPM Day 23 Update on Life


Today’s Prompt. Health Activist Choice. Write about whatever you want!

I missed yesterday’s prompt because after sitting down on multiple occasions to describe something peaceful, I realized it wasn’t happening.  Without going into any detail, I am dealing with some personal stuff right now and I am having a hard time finding peace.  I wish I could find peace but it is not happening and right now, I am not really sure what peace feels like.  I just want peace of mind and it is not possible right now.

My family was at a different place this time last year.  Thanksgiving last year was the beginning of a very difficult journey for my family and I hate this is our memory of Thanksgiving from this point forward.  My sisters and I are planning on making this a wonderful time for Mom considering where she was last year while we were trying to enjoy our Thanksgiving meal. Despite everything we have lost, I am still very thankful for what we have. I am thankful that I have seen my mother happy for the first time a long time.  The first I saw her laugh in over a year was a few weeks ago.  However, I still see sadness inside of her that I wish I could somehow take away from her.

She came back from her Hajj (religious pilgrimage) about a week ago. This was her second Hajj and she did it in honor of my late father and my late brother. She is definitely happier than she has been a long time and I am so very thankful for that. I am thankful for so much and I think that sometimes I have to remind myself to be thankful because the chaos in my life seems to triumph over everything else.  

Sometimes, I feel like moving forward is a betrayal but I remind myself that my brother would want us to move forward. I think about him every day and I hate that he is gone.  I guess that I never will really accept the fact he is gone but that is probably a good thing.  I want to remember that he was here and tomorrow we will visit his grave and let him know that he is not forgotten, missed, and still so very loved. The fact is no matter how long it has been, I still feel sadness inside me that I cannot get rid of. I still feel pain, numbness, and emptiness like it was yesterday that we lost him. 

Anyway, Thanksgiving is at my mom’s tomorrow and my siblings and I are planning on making it special for her. I have also been busy with a new RA website launched by Alliance Health called Rheumatoid Connect. I am glad that they asked me to advocate for that site in addition to the two others I already advocate for.   I love advocating and I hope in the future I will be able to combine advocacy with my legal career.  I hope everyone has a great Thanksgiving filled with many blessings, much happiness and good health.

#NHBPM Day 21 Ekphrasis


Today’s Prompt: Ekphrasis post. Ekphrasis (writing about another art form) – Find a Flickr Image in Creative Commons that inspires you in some way (positively or negatively) and free write about it. Give yourself exactly 15 minutes to write without stopping. Don’t think! Brave bonus: Publish to your blog without editing! (You can include a disclaimer)

  

The photo I picked is a fall one.  Yesterday was a lovely fall day in northeast Ohio.  Aside of from the often chilly weather, fall is my favorite time of the year.  The days are cooler, leaves have changed color and everyone is preparing for wintertime.  I think that these clear brisk days are absolutely magical.  You can hear birds heading south and see animals preparing for winter.   You can buy pumpkin creations, apple cider, and canned fruits and vegetable on the side of the road.  School has started and there is this feeling of “new” in the air.  Autumn is a beautiful and kind necessity to the world and that is why it is one of my favorite seasons.

There is a harmony in autumn, and a luster in its sky,
Which through the summer is not heard or seen,
As if it could not be, as if it had not been!
Percy Bysshe Shelley