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