Not 'Good-Bye', just...'See You Later'

With growth comes change, understanding and transformation.

When I made the decision to discuss my journey with auto-immune disease, I followed the blue print: try to "create a brand", tweet, FB, blog, advocate for your cause, etc. I see now this is not the best practice for me, I don't want to generalize my self to just speaking out for "my cause", like I see others doing.

The discussion goes beyond my ups & downs, and certain aspects of "Spoonie Chic" haven't been beneficial to the positive energy required to make a difference...I can't find the balance with 'Spoonie Chic' so she is leaving the scene.

I'm making some revisions to my platform, which involves saying good-bye to this format of blogging as well (we all have gifts, and this matter of blogging isn't right for me...ha!) I also had to make some changes to my FB/Twitter accounts and I will send out notices of the change if you wish to continue with me on this journey (and I really hope you will!)


I've learned a lot about who I am and who I want to be as an auto-immune advocate, as a mother and as a person during this process and for that, I am thankful.

Hey, a butterfly isn't a butterfly until it comes out of the cocoon: so this is me, breaking free from the conformity of being an advocate!  

I can't thank you guys enough for your support and love as I tried to make an imprint in this manner, but you will see me around...no worries.



I'll have some colorful wings on so you can see me!

Much love and many blessings as we continue on this journey called life.

formally known as, SpoonieChic

xoxo

Enjoy The Cobbler!

A few weeks ago, I lost my Aunt...she passed away peacefully in her sleep. The last couple of weeks were draining on our family; finally, we are getting back to normal.

This little pearl came about in that week of coming together and reflecting on life:

About two weeks before my Aunt A. passed, she visited her sister (Aunt B.) for a week or so: from what I hear, they really enjoyed themselves. Aunt A. had been ill for a while, so this was a needed break from the norm...my Aunts went to the movies, had a mani/pedi and just relaxed (WHY didn't I go on this trip?!)

As my family came together preparing to say good-bye, Aunt B. fixed a nice size blueberry cobbler (she is the chef of the family, weather she likes it or not!) As my mother and two Aunts ate the cobbler, Aunt B. said "I fixed this cobbler when Aunt A. came to visit me...I had one serving, she ate the rest. She [Aunt A.] said it was so good she couldn't help it!" Aunt B. said she would fix her another cobbler when she visited again; sadly that didn't happen.

Thankfully, we all saw the positive in this: Aunt A. really enjoyed herself in her last weeks of life...(think of part one of "Eat, Pray, Love")

So, what's the lesson in this story: we (I) need to learn how to take a huge slice out of life and enjoy! Whatever your "cobbler" is...skydiving, traveling, or just enjoying yourself without worry or regret...do it!



Rest peacefully, Auntie!

SC

My "30 Things"

I was hesitant about participating in #iiwk2011 because of the "misdiagnosis", but I still have things to share, so here we go: 



1. The illness I live with is: lyme disease/ fibro (to be continued, I'm sure.)


2. I was diagnosed with it in the year: lyme: late March 2010 fibro: March 2011


3. But I had symptoms since:March 2010


4. The biggest adjustment I’ve had to make is: learning how to slow down!


5. Most people assume: I feel fine because I look "okay". or I'm being evil because I'm not as open about my pain as they would like me to be.


6. The hardest part about mornings are: Dealing with the lack of sleep from the night before.


7. My favorite medical TV show is: House


8. A gadget I couldn’t live without is: My Blackberry and laptop


9. The hardest part about nights are: trying to sleep (due to pain and insomnia.)


10. Each day I take __ pills & vitamins. <---still searching for the right one(s)


11. Regarding alternative treatments I haven't found anything useful, yet.


12. If I had to choose between an invisible illness or visible I would choose: invisible (or none!)


13. Regarding working and career: None existent right now (due to lay-off and illness)


14. People would be surprised to know how I play down my pain, agony (not being dramatic at all.)


15. The hardest thing to accept about my new reality has been: Nothing is the same: body, hair, skin. Loss of "social 
life"


16. Something I never thought I could do with my illness that I did was: Stay positive (even if I loose that battle some days.)


17. The commercials about my illness are SO misleading (for fibro, I'm yet to see an ad for lyme.) Everyone can't afford 
those meds, but people think we can and as soon as we take it, all is well. Yeah we have good days, but it's an uphill battle.


18. Something I really miss doing since I was diagnosed is: Singing


19. It was really hard to have to give up but my voice hasn't been the same for almost a year now.


20. A new hobby I have taken up since my diagnosis is: blogging


21. If I could have one day of feeling normal again I would: take my son on a trip (he has to deal with so much!)


22. My illness has taught me to appreciate life and look for the positive in all situations.


23. Want to know a secret? One thing people say that gets under my skin is 'Well, you look good.' or ;'You lost some 
weight, huh?'


24. But I love it when people don't pester me/ give me my space.


25. My favorite motto, scripture, quote that gets me through tough times is: Galatians 6:9 "And let us not be weary in 
well doing: for in due season we shall reap, if we faint not."


26. When someone is diagnosed I’d like to tell them it's ok to be frustrated and you may have to cry sometimes, but find 
a way to use your voice to help others! Reach out to people that "get it."


27. Something that has surprised me about living with an illness is: Some days, I'm stronger than I think (mentally.) 


28. The nicest thing someone did for me when I wasn’t feeling well was: My son gives me hugs when I feel real bad and prays for me.


29. I’m involved with Invisible Illness Week because people need to understand invisible illnesses affect everyone: big, small, short, tall. No one should be judged.


30. The fact that you read this list makes me feel encouraged. We are not alone in this battle! God bless! xoxo

Pulling from DEEP Within...

"I ask not for a lighter burden, but for broader shoulders."


This was one of the first quotes I clung to when I first made the choice to speak up about my illness: I knew it was going to take a lot of  God's guidance, faith, and guts.


I have reached many cross roads over the last year: raising my son, getting laid off, loosing insurance, my condition getting worse, finding "the right doctor", trying to uncover the best pain management, looking for work, applying for this and that while keeping a smile on my face and saying "I'm okay."


This week posed a new set of issues (mind you, it's only Tuesday!) Monday, learned that my diagnosis was incorrect in so many words the blood work was inclusive for RA and Lupus so I'm not quite sure what's going on; for most people this would be good or encouraging, for me this has become a game. If I could name the game, it would be "Jenga": pulling away different blocks from the stack, hoping the entire thing doesn't fall apart. I was never good at that game. While this is going on, my pain has been off the charts for weeks now. I do have a considerable amount of pride and it took four people to convince me to go to the ER. Now, I haven't met one person that enjoys hospital visits in any degree...but I would classify a nine (yes, "9") hour wait is beyond ridiculous. I didn't find a way to make it somewhat enjoybale (refer to #TalesFromTheER via Twitter)  


Also the last two days posed some personal drama that should be scripted for Lifetime...I can't apply all of it to virtual paper but it includes pain, betrayal, deceit, and misunderstanding.  
For now, I can't control the psychical pain...but I can do my best to lick the emotional wounds so I can brave the new journey ahead. 


I believe that God will continue to carry me through all this, no matter how dark the night. Yes, I'm back a square one, but I will be stronger because of all of this.


My shoulders are weak, but they are indeed broad! I appreciate my #spoonie friends for "getting it", kinda hard to explain how people whom you never met have sympathy for each other, but it's easy to understand. I also thank my immediate family (Dad, Mom, Sis, Bro) for fussing at me and smothering me in a loving way, that's how we roll.


Best!

Venus: Helping or Hurting?

Recently, tennis phenom/businesswoman Venus Williams openly discussed her diagnosis of Sjogrens disease, (pronounced 'show-grins'.) Sadly, another autoimmune disease that goes under the radar...thankfully another African American bringing a spotlight to this "mysterious" condition that affects millions of people.
When I heard Ms. Williams was going to sit down for an interview on Good Morning America about an autoimmune condition...I was excited (not that Venus had a chronic condition, but curious as to how she would present it.)

Many high profile people play down their autoimmune diseases/conditions the same reason others with chronic illnesses shy away from it: we don't fully understand what these conditions do to the body, it takes forever to get a clear understanding as to what is going on, and so on. One can easily get understanding and sympathy for cancers and heart diseases and eating disorders; but autoimmune disease...*crickets*
People like Kathleen Turner and Phil-Mickelson have painted a distorted picture of how people cope with these conditions, so I had my fingers crossed watching GMA: ('Please, please don't down play your condition, not too many 'sistas' speak up about their condition...don't make us sound like wack-jobs!')

So with my full attention, I watched Venus' interview and Dr. Richard Besser's overview of Sjogrens; I can't speak for anyone else, but I felt empty (yet hopeful...for Venus.)
When asked about Sjogrens, Venus gave the best description she could, which was rather vague. In between the idle chit chat about this serious issue, Venus was asked over and over about her return to the tennis court; without hesitation, Venus said she will return and triumph over Sjogrens.

I was first thankful that Venus made the choice to speak up (although, I don't think she had much of a choice. She was more in the spotlight due to the U.S. Open and she had to address it before the press put some crazy spin on it.)
Venus is what we call "a brickhouse"  (a curvy, yet fit woman...in so many words.) Venus, along with her sister are just as infamous for their physique than their skills.
People who aren't familiar with autoimmune diseases are quick to attack/blame people's weight or lifestyle as reason for their condition; not to say a healthy weight and lifestyle aren't important, but celebrities like Toni Braxton and Venus have shown the general public that anyone's body can turn against them at anytime.

Secondly, I was kind of bummed that Venus' career was more of the focus than the diagnosis: Venus has been going through a six year journey with her health and her life has now totally changed but the primary question was about tennis. Going back to the previous comment, Venus just found out about her condition and had to address the media due to her decision not to participate in the U.S. Open...so Venus had a lot to deal with within a few weeks time. 'Private citizens' have the option of opening up about chronic conditions and thankfully we don't have to deal with the scrutiny of the media watching our every move.

Lastly, I am hopeful. Venus has an opportunity to bring much needed attention to this condition (and other conditions that mimic Sjogrens, such as lupus and rheumatoid arthritis.) I hope that she will take time to learn more about this disease and  help spread awareness in ways we can't, yet.
So, is Venus hurting the cause? Absolutely not. Is she helping? Her total impact isn't known yet, but she has certainly drawn attention to the matter (if only for a week or two.) All a spoonie needs is a foot in the door, just as long as the door doesn't crush or foot! *wink*

Best wishes, Venus!

Fighter!

So, I took a little break from the world for a week or so...I basically "unplugged": I was in a lot of pain, adjusting to my new sleep pattern (and when I say 'new', I mean worse.) I also feel as if my condition is getting worse -no, I'm not a doctor...but I know my body and I feel the difference. I also had some personal things going on, as we all do. I just had to spend time with myself to regroup.

Being away from everything was almost vital, I didn't realize how stressed out I was!!! I try to be easy-going, drama free, and  positive, but I had to acknowledge that madness so I could deal with it. I can't say that everything is fixed, but I'm working on it.

This is what I had to refocus on:

My life isn't really about me at all: it's about what I can do to help my son, my family, friends and others I meet along the way be better people with the hope I can gain knowledge and understanding from people around me. Michael Jackson said it best in his song "Heal the World", 'Be God's glow', basically saying we should be a reflection of God's love.

This poem is a summary of my thoughts this week:

I am a fighter, thinking I'd lost my way...
I lost my focus, I was lead astray.


In a lonely place, I looked over my life,
Taking a long, hard look in the mirror: I saw the misery and strife
I was looking at a girl, reflecting on a childhood lost...
all the hurt and pain.
Knowing that God has kept me here for a purpose...
I have so much to gain.


Taking a look at the woman I now, I see the potential within
I am a fighter, I'm destined to win!
Taking in all the test over  years,
I have to take the lessons and remove the tears.


I am a fighter, I thought I lost my way.
Getting back on track won't be easy,
With guidance and love, victory isn't far away.


I hope everyone has been well. I hope to be back to full speed soon!

Take care,
SC

Back-To-School, Spoonie Style!

So, this week marked the start of school in my neck of the woods. I was certain that my son's school opened on August 22, so I had to make haste (thanks, "fibro fog".)

Taking care of a child is stressful, taking care of a child primarily by yourself AND dealing with a chronic illness, unemployment, and a ton of other medical and financial issues make things ten times worse (but I take it all in stride.*smile*)  I don't like the term "single parent", even though I am single and I am a parent...so I'll say "primary parent".

As the primary parent, 98% of the daily task land on my shoulders: I needed a plan to calm all the madness that is elementary school!

This was the first year since I fell ill that I really had to brace myself for what lay ahead; second grade is a huge deal, according to my son (I lovingly call him "J" on the internet.) Among the hundreds of thing I had to prepare, I had to find "the right book bag", you know...something cool that didn't look like a first-graders book bag or heaven forbid, a kindergartners! 

Mama had some work to do!

Sunday, I set my plan in motion: I need to make sure this ship moves smoothly!

The first thing I had to do: get all of J's outfit's together for the week (M-F)







Secondly, present a timeline for the week:
7 am: wake-up, get ready for school.
7:30: make it to the bus stop/ alternate plan in place if we miss the bus...thank goodness the school isn't far away!!!
(After the bus stop, this is my "off duty time", trying to catch up on rest due to the lack of sleep the night before. Depending on how I feel, I punch back in early and take care of housework/errands.)

3:00 pm: BACK ON MOM DUTY!
3-5: J is running around playing, getting fresh air and squeezing out that last burst of energy.
5-7: Dinner and homework
8:00: "family time": reading, TV, or playing with our respective "toys"
9:00 pm: bath-time
9:30 BED FOR J!

*Don't worry, I have a chart to help me daily!*

(Me: battling insomnia or painsomnia  from 12:00 am- 7:00 am) 

7:00 am: START ALL OVER AGAIN!!!


*Insert a yawn wherever you feel it's acceptable*
This is the first week of my plan - so far so good! We have a nice rhythm going on and despite my pain, we are making it work!


I hope this can help new spoonie moms or mom's (parents) in general; if you have any tips or tricks to make life easier, please share! I'd love to hear how you run your ship!

Off to hunt for those Zzzzzz's everyone seems to catch.

xoxo

This is why I'm here...

The last few weeks, I have questioned my purpose for advocating for RA (other autoimmune diseases.)

I was really confused and somewhat frustrated with trying to educate myself so I can pass along the information to others:
Am I being redundant? Is this information relevant to other RA patients or anyone? Does anyone really care what I post?!

I was ready to throw in the towel, *delete* *delete* delete*

Then something happened, logging on to Twitter this week I noticed a fellow spoonie having a difficult time. I know we all have struggles dealing with life in general, throwing chronic illness into the mix and you have an emotional, psychical, financial, spiritual tsunami!

I could go into my personal woes but this isn't about me, this is about 'us'...the community of people somewhat slighted by the rest of the world in one way or another. In this isolated community, we tend to lean on each other for support. Most of us have never met face to face and don't know each other beyond screen names/ Facebook profiles but thankfully there is a little saying, "We can't choose our family, but we can choose our friends."

So here we are, an elite group of people, trying to lift one another up! It is important to pass along information to people just learning about their conditions, but it's vital to be around for emotional support.

A quote by Mother Teresa sums it up: "We cannot do great things on this Earth, only small things with great love."


Stay strong, friends!

Rheumy, 2.0

Well, last Thursday I finally made it to the Lupus Clinic at Duke University Hospital in North Carolina. If you are just joining me on this journey, allow me to fill you in:

Since January of this year, I've had to fight for the referrals I received; my primary doctor and local rheumy weren't to thrilled about my request to see others. (I'm sorry, are you my boyfriend?! Share and share alike!) I will say again the doctors were very nice, but I felt their resources were limited. I can't afford to live with limits.

I was told the Lupus Clinic was hard to get into but I was willing to wait because I heard so many good things about the Rheumatologist department/staff and the overall quality of service. I've been trying to get an appointment for about 3 or 4 months, so I was thrilled when I got that phone call. Thanks to some help from my loving cousin (who happens to be a lupus warrior,) I made my way to NC!
Taking what I have learned so far, I really did my best to be "the model patient" - I took all of my meds (as an example of the lab rat phase,) along with my health journal including my local doctors names and numbers. I tried to have my complete medical history with me also, but my paperwork was held hostage at the eleventh hour...another story for another day. *Breathe. Just breathe*


This was obviously my first trip to Duke for myself; around here, you only visit Duke when the situation is 'serious'. I'd tell people I was going and I can still see the look of fear and concern on their faces...instead of going through 'Autoimmune Disease: 101', again, I told the masses I was having some test done relating to my RA.
Unlike my other appointments, I asked my best friend to come with me - this allowed me to take my mind off of the visit and avoided me the embarrassment of getting lost by myself (it's easier when you have a "fall guy", lol!)

Discussing my symptoms and issues with the rheumy, I again realize how rough it has been for me over the last year; at one point, I just stopped and asked the doctor, 'Does all of this make sense?!' Instead of being sad about it, I just had to quietly say "Thank You, Lord" for keeping me sane and centered all this time.

The visit to Duke was also unique to me because I had two doctors perform a psychical- checking pressure points and asking me obvious questions: 'Does this hurt?' (Yes, it does...) It was nice to be talked to and treated like a real person instead of an odd case.
After I left a few samples, I was ready to roll. I go back in October to discuss my lab results even though the doctor and I have a good idea what's going on...beyond the Lyme Disease, RA, and Fibro (sorry Dr. House, sometimes it is Lupus.)

As we left the hospital, my bestie asked me was I glad I went to Duke. I told her, yes: spending so much time in doctors offices and being thoroughly observed isn't what I though I'd be doing in the "prime of my life", but this is my life now, and I have to preserve it as long as I can.

So all-in-all, last weeks trip was positive. I had to fight like heck to get to this point, but thankfully...my fighting isn't in vain.

You gotta fight, for your right. To get referrals!

A Pain No Pill Can Cure...

This is the summary of a conversation I had with a few friends online; we discussed the dilemma we face as chronically awesome patients. We find ourselves dealing with people that don't believe our pain is real ("but you don't look sick",) and trying to find a way to properly express ourselves to family and friends.

So, here we are...stuck between a rock and a hard place (pressing against our fragile body.) The one word that sums up the feeling of fellow spoonies: lonely.

Social networking has been a godsend to many of us; finding peers sharing a similar experience makes it easier to talk about our daily lives (or lack thereof.) In my personal life, I don't know a lot of people speaking openly about any illness or condition. Twitter and Facebook has given us a platform to vent and discuss issues that are important to us without having to go into an autoimmune litany.

I posed a question this week: "Is it difficult to talk openly about your illness to family and friends?"

"What I find difficult is trying to explain my illness in a way that expresses not only the severity but the complication of it all."


" It's very difficult. My family believes my RA is just like osteoarthritis and feel like I'm exaggerating until they see the swelling. Even then, they believe I've done something else to make my joints look that way." 


"If a parent, child, or friend of mine had a disease, I'd try to find out all I could about it and try to understand and help as best I could. I just haven't seen this in my family and friends. Makes for a very lonely life."


"I have had different ones tell me that if I was just more positive, I could will this disease away."


"My husband thinks I'm overly exaggerating my pain. He's not helpful at all & its causing a strain on our relationship. I'm not managing well. I let my kids think I'm fine. I fell so alone."


This is just a small sample of people, but it speaks volumes to the plight of those with chronic illnesses; no one should have to feel like this!


Why is it so difficult to open up to others? Maybe we don't want to feel rejected, or neglected by our friends. It's possible we don't want to be left out of social gatherings or events nor do we want to explain why we couldn't do this or why we don't (or can't) leave the house because of a flare or extreme fatigue over and over again.  

On the flip side of that, once we feel comfortable enough to tell those close to us, we hardly hear from them due to the enforced seclusion, making us regret our decision to open up. Is it because they don't know how to communicate with us? Have we become foreigners?  

We are the same people, maybe more sensitive due to the loneliness. 


So, how do we open up the discussion? What's the best approach?

There are many tips and resources available online to help open up dialogue; from writing a letter (which I did,) or finding support groups for patients and family members.

This story can't be wrapped up in a pretty bow; it takes a lot of work from all parties involved. Patients have to find support with people that have similar conditions - this could help you find the courage to address your loved ones. Families should be supportive and not automatically attack patients when they are already vulnerable.

The key word for everyone: patience.

What You Don't Know Can Hurt You...

Wednesday, I came across an article in "Arthritis Today" (a magazine I never thought I'd read.) The article provided a  timeline of treatment for newly diagnosed autoimmune arthritis patients. Reading the timeline, I began to reflect on my various doctors visits: to sum up the long conversation I had with myself...I didn't receive the treatment/medication required for RA patients.


I was a little upset as I thought about this: for sixteen months I made my way to the doctors office, becoming BFF's with the staff and nurses as they checked my vitals, getting all these test performed and prescribed this anti-malaria drug and Vitamin D for, what?! Why didn't I get this x-ray? How come this test wasn't performed? Did the doctor check for that?! I thought about it a little more and got frustrated with myself: Did I ask for these test/labs!?  No.

 *facepalm* 

I didn't know anything about complex life of autoimmune disease; there is a lot of research and documentation, and a ton of personal accountability. I have said this before, doctors are a great resource and I've had a nice primary doctor and rheumatologist so far; apparently, I have been too nice to the doctors-not asking the tough questions or requesting more information. 


That article reminded me why I started talking about my experience with RA; too many times we take the doctor at their word, accepting things 'as is', too many times we get caught up in the world around us, too many times we allow pride (or shame) get in the way of our well being. We have to make time to keep a health dairy, research our symptoms and have an open relationship with our (sometimes) multiple doctors and specialist. If we don't speak up for ourselves, who will?!


This information will be very useful as I prepare for my next doctors appointment and I hope it helps with yours! Watch out, rheumys...we are preparing for you!! 

My Big, Fat, Spoonie Holiday!

Much like your family, we prepare for the holidays like an Olympic event- we come together, laugh a lot, and eat way too much!

Since I've been ill, time with family and friends had been limited; I opted out of Thanksgiving and Christmas last year because I was just too tired to venture out and I was still in the early stages of learning about autoimmune diseases so I really didn't know how to bring up my dysfunctional immune system in casual conversation.
Saturday,with some convincing, I made it to my hometown for the 4th of July holiday.

This was the first time some people saw "the new me" with my wig, hat and "fall like clothing" (in the summertime.) Since this has been part if my routine for a while, I was used to it...explaining it to my extended family is something totally different. I had to be quick on my feet:

Family member: "Aren't you hot with that jacket on?! Me: "I'm too cool to be hot!" (Thanks, unregulated body temperature!)

This weekend did give me a small opening to talk about RA to some of my family.
Some of the things I heard:
"So, what's wrong with you?"
"You're too young to have so many issues!"
"There's a pill you can take for that, right?"
"You had such pretty hair..." and
"I hope you feel better soon."

I know this was said with love, so I wasn't overly offended or saddened by these remarks. I didn't go into extreme detail (no need killing the party...but that trip to the ER did throw a curve in Sunday's plans!)
I did my best trying to explain how my body works now, without sounding like a human medical dictionary. As I talked to my family, I noticed that I wasn't as uncomfortable talking about RA as I used to be...I'm starting to "find my voice" (yay, me!)

Despite all that madness, I enjoyed myself...good laughs, too much food and unconditional love.

Up next: Labor Day...

(This lesson is dedicated to the new "spoonies" out there...talking about chronic illness is HARD, but it gets easier.)

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 learn...so 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.

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?!)

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.)

SG  

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...)

http://www.youtube.com/watch?v=7dFWyCLNwgA

              

Lesson:

Living with any kind of aliment is enough to bring us down, but we must stay encouraged!

Work in Progress...

So, trying to find my voice has proven more difficult than I thought; between flares and sleepless nights and those wonderful brain fogs things slip my mind. *smile*

                                                     (*I was about to do...something.?!*)

I guess this could be used a metaphor...I'm building up my blog as I build up the courage/energy to proceed with this blog.

So if y'all can bear with me, I will make this a pleasant experince!

Much love,
SouthernGirl

1 Away...

So, I'm sitting here, trying to get used to the new medicine the doctor prescribed for me (ugh!) recalling the madness I was going through this time last year.
In the midst of one of many doctors visits, he said something like "You're an interesting person, I've never seen anyone like you before." (I guess that could be a compliment, maybe?!)

I first met my doctor when I thought I had a newly developed walnut allergy (later finding out I went into something similar to anaphylactic shock, full "Lisa Rinna" lips for a few days *pucker up*...)
This began a long month on labs, x-rays, CAT scans, and tons of confusion: he came up with a diagnosis, lyme disease.
I took him at his word; I was too busy with life to worry about what was going on. "I'm 29 years old with a six year old and a demanding job, I don't have time for this." (STRIKE 1!!!)

After a few weeks of antibiotics I felt a tad better and put my overall health on the back burner. (STRIKE 2!!!) I felt 'well enough' to keep going fast pace; little did I know I would end up with a major foul. The foul being my current condition with RA, fibro (and who knows!)

So, this is my first of hopefully many entries. I will do my best to add a practical lesson at the end of each entry-
Lesson 1: Doctors are great resources and they are willing to help diagnose us properly, but we must do better to make sure the doors of communication are wide open!!

(The info will get better as I get to a better understanding, trust me!)

Thanks for joining me! xo