More Autoimmune Disease Blogs and Resources

RA Guy Community News

A new list of wonderful blogs written by strong individuals living with rheumatoid arthritis, psoriatic arthritis, psoriasis, ankylosing spondylitis, and multiple sclerosis.

It’s Just a Bad Day, Not a Bad Life!
Don’t ever let a bad day make you feel like you have a bad life! In order to get the good, we must take the bad as well!
http://www.itsjustabadday.com/

Seeing Pspots
So, I’ve had psoriasis for over a year now. For some reason it seems to pop up more in the spring/summer time than in the fall/winter months (don’t ask me why, it’s usually the opposite for most people). Anyway, it started on my face this time which is the FIRST TIME it’s ever been on my face. I suppose it was bound to happen at some point. It’s hard to have psoriasis pop up on places that are hard to hide (likkeeeeee my face, unless I wear a mask or stocking over it but I don’t plan on robbing a bank anytime soon). My advice? Just FACE it!
https://seeingpspots.com/

Chronically Kristin
Inner musings of a chronic illness fighter determined to win.
https://kristinmariecoppens.com/

Lupus Chick
Funny. Raw. Informative. These ladies “get it.” Whether you are in bed with a flare, trying to learn more about Lupus, or just need a laugh with girlfriends who understand, we believe you will find it here on our award-winning blog.
http://www.lupuschick.com/

And Then You’re At Jax
Always looking for fun in the rheum.
http://atjax.net/

The Itch to Beat Psoriasis
Living with a chronic illness like psoriasis takes courage. I learned that lesson as a child with psoriasis. The world is a big place for a 9-year-old. That’s when I started using phototherapy to treat psoriasis. The closest phototherapy light box at the time happened to be about 30 minutes away at the medical center in Oakland, California. My mom, who didn’t drive on the freeway at the time, overcame her fears to take me to light treatments three times a week.
http://www.everydayhealth.com/columns/howard-chang-the-itch-to-beat-psoriasis/

Life According to Kenz
Since 2011, this blog and I have come a long way. There have been mountains to climb and storms to weather but I have never been more sure of my purpose or faith in this life and in something so much more magnificent following it. My sole hope is that as you read, you would feel encouraged and know that you are not alone no matter what battle you are facing.
http://www.lifeaccordingtokenzblog.com/

RA Diabetes
If you have Arthritis, Diabetes or both this site is for you. This site explores the issues of living with two autoimmune diseases, Rheumatoid Arthritis and Type 1 Diabetes. I am Rick Phillips and I live with these diseases. This site is about the humor and struggles of living with these chronic diseases. I have had type 1 diabetes for over 40 years and rheumatoid arthritis for over 15 years. I have been married to Sheryl since 1977; we have two wonderful sons and three of the coolest grandchildren anyone could ever ask for. Along the way Sheryl and I have learned to have a great life, good laughter and a way to keep our fears in check.
http://www.radiabetes.com/

City Girl Flare
A day in the life of a city girl living with psoriatic arthritis.
http://www.citygirlflare.com/

Autoimmune Mess
I love drinking coffee and reading dusty old books that I collect from antique and thrift shops. I also manage to live well with a complicated chronic invisible illness. I share my experiences as an Autoimmune Mess in order to help others along their journey through autoimmunity. It’s a hot mess chronic life!
https://autoimmunemess.com/

Overcoming Psoriasis
My name is Todd Bello and I was diagnosed with psoriasis at the age of 28. Unfortunately psoriasis is a chronic autoimmune disease and there is no cure. I had a small red spot on my scalp that wouldn’t go away. I was very concerned. Since then I did a lot of research. I’ve tried so many treatments. Been in four double-blind studies. Light therapy, the Dead Sea, Skin Cap, Acupuncture, Herbal remedies, Dr. Pagano, Tanning, Raptiva, Embrel, Engineered Tuberculosis Injections, Gluten-Free, Diets, Topicals, Exercise, Hot Yoga, Healing Masses, Steam Baths, Sulfur Baths, Epsom Salt, Spring Water, Florida Natural Spring Soaks, Steam Rooms, Saunas, Tanning Booth, Chiropractic Adjustments, High Colonics, Dovonex, Talconex, Sulfasalazine, Coal Tar, Florida Sun, Aleve, Cortisone Injections etc..I turned 50 this year and I’m still determined to find a cure.
https://overcomingpsoriasis.com/

Life With Multiple Sclerosis
An opinionated look at the daily challenges of MS.
http://www.everydayhealth.com/columns/trevis-gleason-life-with-multiple-sclerosis/

If you write a blog that you would like to be considered for inclusion in an upcoming blog list, please email me at rheumatoidarthritisguy[at]gmail[dot]com.

Different Worlds

RA Guy Adventures of RA Guy

I live in two different worlds.

I go from the rigid grid of avenues and streets in Manhattan, to the steep sinuous roads that carve through the valleys of a dense metropolitan area up in the Andes Mountains of South America. I go from sea level to miles up in the sky, where the air is thin. I go from rectilinear, modern sykscrapers, to rough, jagged mountainscapes. I go from a land of rush and constant over-work, to a place of laid-backness and slow living. I go from having to plan social outings weeks in advance, to being able to call up a friend and say, hey let’s meet for coffee in an hour! I go from summer to winter, and from winter back to summer, all in the very same day.

Many things remain constant, however, no matter where I am…

Every morning is a lottery.

Some days I can move, and other days I can’t.

When I can move, I start off my day slowly. I play with my dogs. I draw open the curtains. I pull the broom out from the kitchen corner, and sweep the hardwood floors. I don’t see these as chores, or as tasks that “have” to be done. I see them as a way to slowly stretch, and warm up, my body.

I notice the subtle difference in ambient air temperature. I appreciate the constantly-changing angle of the sunlight that floods the house. I listen to the chirping of a hummingbird in the garden…and, if I pay careful attention, I feel the buzzing of its wings.

On the days I can’t move, I relax, and enjoy the warmth of my bed and the multiple layers of blankets that cover me. I listen to music. I think. Most importantly, I don’t stress out. There is nothing that needed to be done in the next couple of hours that can’t be done later, I remind myself.

I connect with the overwhelming pain in my hands, a pain that feels like each and every bone has been broken. Even though it feels like I will never be able to move again, I know I will. I drift back to sleep. I dream.

Someone very close to me was diagnosed with a chronic, autoimmune disease this past year. I can see this person trying to hide her struggle; I don’t know if she’s trying to hide it from herself, or from the rest of the world. Having been in that very same place for so many years, I know exactly what she is going through. I know she has some unfathomable hurdles coming up in her future, but I also know that she is and will continue to be okay.

I don’t call her “hiding” out, nor do I cast undue attention on what she is facing. I do check in on her regularly, and let her go through what she has to go through.

While all of us who live with these types of disease stand to learn a lot from others who are going through the same thing, the most important steps forward are usually of a very personal, individual nature.

We can’t do it alone, yet we have to do it on our own. (Just one of the many paradoxes that becomes a daily reality when our bodies no longer move on command, and when our minds race in the confusion of knowing, yet not knowing, what is going on…)

I don’t deny my pain, but I do build a mental block. Something…anything…to give myself a respite from the emergency alerts that my body continually sends to my brain. I take a deep breath, and start my day all over again. I feel the crunching of my joints, and the instability of my limbs. I slowly let the pain filter through, past the numbness. I connect with it.

I no longer label my day a “bad” one, because the pain “is still there.” I broke that chain of thought many years ago, and I am all the better for having done so.

This is my body.

This is my life.

I refuse to stop moving. I know that if I stop moving, even if for just a few days, the delicate balance inside that I spend so much time and effort maintaining will go out of whack.

And when it does eventually go out of whack, as it always does, I take a deep breath, I smile, and I say: let’s do this (find that balance) again.

I’m always just a few steps ahead of the pain and inflammation. This thought used to stress me out, knowing that this marathon never ends. I have since gotten used to it, though, and tell myself that all will be well.

And I no longer feel like I’m kidding myself, as I once did in the past.

Everything is indeed okay.

All is well.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Easier Said Than Done

RA Guy Adventures of RA Guy

A few years ago, I made a very concerted and intentional effort to change the focus of each and every new day. Instead of focusing on my pain and limitations, I would instead focus on what I *could* do.

I would focus on life.

As I adopted this new way of living—a way that has and continues to serve me quite well—I found myself emotionally unprepared for many of the reactions and comments that I received.

“Stop showing off,” or “you make me feel inadequate.”

“You’ve forgotten what it’s like to have RA”, or “I doubt you ever really had RA in the first place.”

“It’s irresponsible for you to talk about your decision to get off all medications,” or “you *can’t* get better…the only thing that keeps me going is knowing that I’m not as bad off as you are.”

I hold no anger or resentment to people who sent me such messages; in fact, my feelings are the exact opposite: I wish everyone well. And I hope that anyone who feels stuck behind this disease finds his or her way forward.

I *know* how hard it is to live with this disease, and I know just how completely overwhelming the pain and depression can be. I also know what it’s like to, on multiple occasions, have decided that it was time to end things, once and for all.

People often tell me that much of what I talk about nowadays is easier said than done, to which I would say: abso-effin-lutely. Finding a way to live well with this disease isn’t easy. But it IS possible.

And that is the thought that we always need to hold on to, no matter how rough things get.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

RA Guy Community News