Thursday, June 30, 2011

Time to kick it new school!

My primary reason for starting this blog (beyond my personal journey,) is to bring awareness to the African American community about health and wellness. Personally, I know there's a ton to why don't we learn together!

I'm from a small town in Virginia; many people from the South (or natives of the South,) still depend on tried and true remedies to get through illnesses so we don't miss work and/or won't have a hospital bill hanging over our heads (with or without insurance coverage.)

I've heard some crazy, yet effective remedies: for babies- black shoelace loosely around the neck and potatoes slices in a diaper for fever, cod liver oil, horseradish, sage, saltwater, lemons for stomach issues, urine for acne...well you get the point.
These remedies were great substitutes for medical treatment; due to slavery and the Jim Crow era, African Americans couldn't make it to the doctor or couldn't be seen by a doctor.

Fast forward to the present: African Americans still face a problem with visiting the doctor for regular check ups and preventive care. Personally, I would say lack of healthcare for us is an epidemic.

Thankfully, others have taken action to address the issue:

USA Today posted an article addressing the health gap among African Americans, stating the Federal Government will assist with programs targeted to low income families and the uninsured. Radio personality Tom Joyner has also been a strong advocate for health and wellness; his movement "Take A Loved One to the Doctor" has helped redefine how the African American community participates in their own health.

African American celebrities Toni Braxton, Missy Elliot, Patti LaBelle, Seal, and the late Michael Jackson along with others addressed their issues with autoimmune diseases showing people of color their disease doesn't define them.

These are just examples of the strides being taken in our communities so we can live longer (and better!)

So, what's the lesson? It's pretty obvious this week...African-Americans (actually, all of us) must take the steps to be proactive in our wellness! We can't be ashamed or full of pride when it comes to being around for our family; a doctors visit is less expensive than a funeral.

Friday, June 24, 2011

The Identity Crisis

A few of us "spoonies" put our spin on a recent article published in The New York Times ('You Look Great' and Other Lies' by Bruce Feiler)

I think all of us were drawn to this piece for various reasons; the people I interact with were bright, outgoing, strong-minded people prior to their illness and remain stong in the midst of their illness. (Some people would say I'm stubborn in lieu of strong minded, but I digress.)

Learning to mange life with a chronic illness has been challenging; learning to adjust to this new "broken down body" has left me in an identity crisis: people tell me, "Well, you look good..." but I know I don't look the same, I don't feel the same, and sometimes, I don't act the same.
Things that used to take a few minutes now take a little longer: using different make-up tricks so I don't look like a zombie, putting more thought and consideration into where I'm going, what time I go, and what I'm doing so I can wear the proper clothing or bring a change of clothes...most likely my infamous track suit! 

And of course, the mental prep:

"You have to go _______ and you'll be there _______ (minutes, hours, days.)"
"You may run into ______, she knows you don't feel well/he doesn't know about your illness. Brace yourself for questions or looks of pity/ be ready to brave a smile and pleasant conversation, positioning yourself so you look comfortable."
"Don't forget to eat and take your meds and bring some type of pain reliever, just in case."
.....and so on

So when people say, "You look good", they're truly seeing the end of a long production!

I have semi-jokingly said I'd like a new, nausea free, pain free, "Beyonce'-like" body (hey, if I'm going to get three wishes, I gotta make them count!!!) To be honest, this new body/identity I have is a challenge of strength, patience, courage, wellness, and inner peace. So I'll accept this new identity, flaws and all.

Lesson: I gotta work with what I have! (Can I still get Beyonce's body?!)

Friday, June 10, 2011

Makes Me Wanna Holla!

Me: "I have Rheumatoid Arthritis..." (mentioning other conditions, depending on who I talk to.)  

Others: 'Well, have you changed your diet?' 'Aren't you too young for that?!' 'I thought that was an old person disease.' 'You should lose a few pounds and you'll feel so much better.'

Me: *looking at people that are healthy and haven't a clue* Ummhumm. *smile and nod* 

(Needless to say, I was very frustrated!)

Prior to mentioning my illness to my family and friends, I was lost in a sea of outdated information; searching for information pertaining to African Americans and RA/autoimmune diseases concluded with two words: let down. The latest research was from 2008 and it spoke of the hopelessness a small group of people have.

I also made the mistake of looking for 'famous people with RA': Lucille Ball, Kathleen Turner, and a French painter (who had his first flare in the 1800's) I couldn't find anyone that looked like me.*sigh*

So now I was walking into the trenches (talking to my loved ones) with very little armor (info or insight.) *double sigh* 

Back to the stereotypical replies: If it was only a case of weight and diet, how do healthy people end up having autoimmune diseases?! If it's a matter of age, how come most autoimmune diseases develop at the ages of 20-40 (in some people, even younger.)
RA, Lupus, Graves Disease, Sjogren's Syndrome, and the hundreds of other auto immune diseases don't attack one group, race or gender. The definition of autoimmune: "abnormal functioning of the immune system that causes your immune system to produce antibodies against your own tissues." (aka, one's body is attacking itself.) I'm not implying diet doesn't play a role in cause or wellness, I just know personally too many people grab what they think is the obvious, trying to find a solution for us, rather than talking to us and understanding.

To those living with any of these illnesses, I am preaching to the choir. To the family and friends of those who aren't quite sure what we're going through, take a little time to do research and ask questions. I know for myself I'm more receptive to someone that has understanding of my conditions.

Lesson 2: I have to take the good with the bad (even the misunderstood.)


Wednesday, June 8, 2011

After You've Done All You Can...

Truth: The last few weeks have been rough! The isolation (aka cabin fever) is hitting me harder than before on top of this, I have to get more test done...a lot is up in the air.
Sitting here, I began to think of one of my favorite encouraging/inspirational songs:

"What do you do
when you've done all you can
And it seems like it's never enough?
And what do you say
when your friends turn away,
you're all alone?
Tell me, what do you give
When you've given your all,
and seems like
you can't make it through?" 

The lyrics are from a song 'Stand' by Pastor Donnie McClurkin, a man that gives a rather powerful testimony through his music.

The lyrics following this say to me, 'You have the faith to see this situation through, you have to trust that God will make you see the positive, just stand.' 
 (view the song here...)
Living with any kind of aliment is enough to bring us down, but we must stay encouraged!