Venus Williams & Autoimmune?

Article about Venus Williams possibly having Sjogren's (autoimmune):

http://arthritis.about.com/b/2011/08/31/sjogrens-syndrome-knocks-venus-williams-out-of-the-game.htm?nl=1


Here's is an article that theorizes it may have been more than Sjogren's, maybe fibromyalgia also:

http://blogs.prevention.com/prevention-news/2011/09/02/venus-williams-is-it-sjorgens-syndrome-or-something-else/


I think it will be interesting to see how this develops for Venus, as we all know how both Sjogren's and Fibro are life-altering chronic illnesses. It's hard to find celebrities who are open about facing such challenging autoimmune illnesses, and its because of the same fears that we all face - the stigma of not being well enough, not being perfect, not being able to perform to the best of our abilities, looking well but not actually feeling well. As a celebrity, sports figure or famous person they are constantly in the spotlight and are under an even higher level of scrutiny than most. So being open about a chronic, debilitating illness could often be a career killer for them, thus they often feel a better move is to keep it quiet.

In a way I feel it is a shame, as I feel we need more on our side who can use their powers of influence to communicate the seriousness of the conditions and the challenges we face, and to inspire. I am proud that Phil Mickelson has come out and been so open about his struggles with psoriatic arthritis (also autoimmune.) So again, I am very curious to follow Venus Williams and her health, I hope she can also (unfortunately) highlight the struggles of chronic illness and be an inspiration to understand and manage chronic illnesses.

Inspirational Quote for those struggling with Chronic Illness

"You have to accept whatever comes and the only important thing is that you meet it with courage and with the best you have to give." 

 - Eleanor Roosevelt

Chuck Close - Rising Above Disabilities

I subscribe to Neurology Now magazine (is free, check out their website: http://journals.lww.com/neurologynow/pages/default.aspx ) and a recent feature article portrayed the artist Chuck Close. Throughout his life he has developed several afflictions, including dyslexia, paralysis and face blindness. Reading the article was very inspirational, as not only has he overcome and learned to work with his disabilities, but he has attributed his success to his dealing with his disabilities. For anyone dealing with a chronic illness reading this article is a must:

http://journals.lww.com/neurologynow/Fulltext/2011/07040/Larger_Than_Life__Dyslexia,_paralysis,_face.10.aspx

Find Strength and Opportunities in Chronic Illness

“When we are no longer able to change a situation – we are challenged to change ourselves.”
Victor E Frankl.

This is a great post on a great website. The quote really hit home with me. She speaks about the struggles with chronic illness and her ability to determination to find strength and opportunities. I think we can all relate and be inspired:

http://workingwithchronicillness.com/2011/04/where-is-the-change/

Since being diagnosed with fibromyalgia I have become a stronger person, and funny as it is to say, a healthier person in the way I live. A blessing in disguise perhaps?!

Toni Bernhard a Blogger on PsychologyToday.com

Now you can check out a new blog on psychologytoday.com by Toni Bernhard, author of "How to Be Sick: A Buddhist Inspired Guide for the Chronically Ill and their Caregivers".

Reading her book was one of the turning points in helping me accept and deal with my fibromyalgia, so I know I am going to cherish enjoy her blog too!

Check out her blog here, Turning Straw into Gold:
http://www.psychologytoday.com/blog/turning-straw-gold

Advocacy & Legal Help for People with Chronic Illness

http://www.advocacyforpatients.org/know_your_rights.html

There is a WEALTH of information on this website, and this book, written by a lawyer with a chronicillness, sounds great, I am going to purchase it!

I love that on their resources page one of the first links is for Chronic Babe! Awesome site and resource, too!!

How to Tackle Chronic Illness

This is really good, well written and awesome advice. I follow this migraine blog and have found it super informational and helpful, as a lot of it also applies generically to chronic illnesses and not just migraines.

Choose to roll your rock instead of carrying it:


http://headacheandmigrainenews.com/1-thursday-roll-the-stone/



I do think attitude can play a big role in dealing with a chronic illness like fibromyalgia. I noticed that once I had some inspiration and encouragement and changed my view on fibro I was a happier and even healthier person.


As most of you know I love the two books FibroWHYalgia (Sue Ingebretson) and How to Be Sick (Toni Bernhard) -- as yes I attribute these two books to turning my attitude and outlook around to alot more positivity.

But take your inspiration from where you choose, be it family, children, books, support groups (local or online, try chronicbabe.com online!) It takes patience and time, but it is worth it to have a positive attitude and persevere :)

Choose to roll your rock instead of carrying it:

http://headacheandmigrainenews.com/1-thursday-roll-the-stone/

Book Review: How to Be Sick, Toni Bernhard

How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers
by Toni Bernhard

I finished this book a few days ago, and wanted to take the time to write a proper book review. This book, and my FibroWHYalgia book, well they are my best friends now :)





THIS IS AN EXCELLENT BOOK! As you know, I am a newbie to chronic illness (1 year in from a fibromyalgia diagnosis) and prior to this book I had very little knowledge about Buddhism, but having done yoga for almost 2 years now I had built up an interest into looking into Buddhism more. So thus this book seemed like it was meant for me!

But please don't be confused with the title, yes this book is about How to Be Sick, but How to Be Sick and SURVIVE and maintain your sanity! (Because we all know chronic means forever, so we have to come to terms with the fact that we will always be sick.) And you don't have to be a Buddhist to learn these "survival techniques" as I call them. Toni's methods are Buddhist-inspired and anyone can learn them and really benefit from them! (Even if you don't have a chronic illness!)

Toni, the author, took almost 10 years to write this book, while dealing with her chronic illness. I appreciate that it was written from the point of the view of an actual sufferer, and I really admire that she was able to write a book AND deal with her illness! What inspiration she is! Her focus in the book is not on her actual illness, but is on how to overcome the struggles, showing that this book and the "survival techniques" she discusses are applicable to so many different chronic illnesses and even caregivers. Even though we suffer from different chronic illnesses, I could relate to her daily challenges, and the ups and downs she described facing her illness, and the despair of facing a lifetime of this. Her methods of dealing, coping and surviving not only gave me solace but continue to inspire me and give me hope in life on a daily basis.

Since my fibro diagnosis I have read all kinds of books, but this is one of two that has given me true direction and comfort in dealing with my illness. No technical medical jargon, no scientific this and that. Just straight up honesty, from the heart, from experience. Each chapter and subject flows easily into the next and builds upon your learning and awareness. She also presents a guide in the back of the book, a type of summary of her survival techniques, which really makes for a great reference. Although I think I ran through an entire highlighter while reading the book, making my own notes and highlights, which I also reference quite often :)


Read it. You will find happiness, peace, serenity.

Read a Good Book? Donate a Copy!

I have read two books about fibro and chronic illness that I absolutely love and will keep on-hand always, as I have highlighted and re-read the heck out of them (ok, I am not finished reading "How to Be Sick" by Toni Bernhard - but I am already so enthralled with it and so many pages are dogearred!)

My other fav of course is FibroWHYalgia :) by Sue Ingebretson

I checked with my local library, and since these are fairly new books they do not have them yet. I've purchased new copies of each and am donating them to the Broward County library system. I really feel they need to be out there for everyone to easily access!

If you find books you enjoy a much as I love these, I encourage you to do the same if possible!

Good Quote - Obstacles

"Obstacles are those frightful things you see when you take your eyes off your goals."

Invisible Illness Week Sept 13th - 19th, 2010

I found this post on another blog, http://www.glassofwin.com, and have adapted with my answers. Read it, pass it along, fill it out, spread the word this week about invisible ilnnesses!

30 THINGS ABOUT MY INVISIBLE ILLNESS

1. The illness I live with is: Fibromyalgia | Chronic Fatigue | Migraines
2. I was diagnosed with it in the year: 2009 | 2009 | 1988
3. But I had symptoms since: — | early 80's at least
4. The biggest adjustment I’ve had to make is: Not having the energy to do as much as I would like; my whole life is one constant adjustment.
5. Most people assume: I can do something simple (like take vitamins, prescriptions or not eat a certain food) and be back to normal.
6. The hardest part about mornings are: Just getting out of bed is so hard :( I have 7 alarms to get me up!!
7. My favorite medical TV show is: Grey's Anatomy. I'm a sucker for HOT MEN!! :)
8. A gadget I couldn’t live without is: my smartphone; it saves me wasted time and keeps me connected
9. The hardest part about nights is: getting to sleep!  No matter how tired and fatigued I am throughout the day, I just cannot fall asleep come bedtime :(
10. Each day I take a minimum of: 24 pills – 4 meds,19 vitamins/supplements, 1 OTC
11. Regarding alternative treatments I: I do as much as I can, LOVE my yoga even though at times I struggle; I have discovered a lot of supplements and foods that help me in stead of prescription meds
12. If I had to choose between an invisible illness or visible I would choose: I would choose to have both if it meant someone else would not have to have one. I would not wish either on my worst enemy :(
13. Regarding working and career: I have a very understanding employer, and with adjustments I am able to keep working so far. I am far along enough in my career that its easy for me to successfully get my required work done.
14. People would be surprised to know: What all I keep inside. There is a lot of misery and anger that I do not share.
15. The hardest thing to accept about my new reality has been: Just trying to feel somewhat normal :(
16. Something I never thought I could do with my illness that I did was: I haven’t gotten there yet, but I am aiming to getting married and have a family :) Some days it seems like it might be an overwhelming challenge.
17. The commercials about my illness: Are WAY too BRIEF!!! They don't even touch the tip of the iceberg when it comes to fibro; It gives a false impression of how we suffer, and a false impression that you "just take Lyrica" and will "be all better."
18. Something I really miss doing since I was diagnosed is: Being able to do more active things
19. It was really hard to have to give up: sexy shoes :(
20. A new hobby I have taken up since my diagnosis is: Meditation; blogging :)
21. If I could have one day of feeling normal again I would: go to the zoo; I am afraid to attempt it these days, afraid I would get too tired and sore
22. My illness has taught me: How invincible I am
23. Want to know a secret? One thing people say that gets under my skin is: I just hate it when people assume things and play armchair doctor with me. Walk a day in my shoes and see how you deal!
24. But I love it when people: Take the time to understand me and what I go through.
25. My favorite motto, scripture, quote that gets me through tough times is: “Don't frown because you never know who may be falling in love with your smile"
26. When someone is diagnosed I’d like to tell them: You'll be ok, you are strong. Your reality is just different now.
27. Something that has surprised me about living with an illness is: The daily struggles, and new struggles and symptoms that pop up :( Each day seems to bring something different/new!
28. The nicest thing someone did for me when I wasn’t feeling well was: Make me laugh, I love laughing.
29. I’m involved with Invisible Illness Week because: I just learned about it and I’d like to make new friends who I can relate to and be there for!
30. The fact that you read this list makes me feel: Appreciative :)

Spread the love and fill out this Meme if you have a Chronic Invisible Illness and want to blog for NICIAW

You Don't Have to Like It To Accept It

This is a Good One from FibroHaven

How often have we struggled with our new reality?
How often have we grown weary and frustrated with trying to decide who we are and how we now matter?
How often have we wondered if it will ever get better?

http://www.fibrohaven.com/2010/06/16/you-dont-have-to-like-it-to-accept-it/

SO TRUE - I started seeing the light when I let go of who I was and accepted and adjusted to who I am now and who I can be now. I was able to move forward and see the future much clearer once I accepted my chronic illness. I still don't like it, but I now accept it and choose to move forward.