Monday, December 31, 2012

RSD Interview #6 - With Joseph Aquilino


HOW AND WHEN DID YOU GET RSD?
From a work related incident on October 21, 2008.  A 200 pound cart was rolled over my left foot and left ankle. The RSD has now spread to my right calf.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
I was unable to go to my community board meetings, and go out and enjoy myself.  Honestly, its tough, with this pain, to enjoy yourself... but I found myself and made life more positive by finding something I really love to do; Internet Entrepreneurialism, marketing and promotions, web design, logo creation, etc.
I am unable to attend non-profit meetings, like I used to.  So now I do a lot of the work for the non-profits from my home (via social media, web pages and networks).

DO YOU HAVE A GOOD SUPPORT SYSTEM?.
I have a good support system, somewhat.  In the beginning not so much, but now they are understanding the disease a little more, as I pound into their heads the information.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Faith, Hope and Love.... also Positivism and Optimism .

HOW HAVE YOU RE-INVENTED YOURSELF?
Through Internet entrepreneurialism, I started my own internet radio show on blogtalkradio, which has about 73,000 listeners.  I created various networks and web pages to help other people with the disease.  I had to re-invent myself so I would not be depressed and anxiety filled everyday.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
Oh, yes…helping other people manage their pain and smile again.

WHAT THINGS DO YOU MISS THE MOST?
Working with the non-profits, hands on.  I don't miss Corporate America, for sure.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
That I do everything I do to keep myself sane, and to help people around the world manage their pain and symptoms.  I try to infuse my positivism to them, so they could live a happy life themselves, with pain and limitations. To see a hurting person smile is my objective.  A smile to me is better than money or any material thing.  God Bless my brothers and sisters in pain.

Sunday, December 30, 2012

RSD Interview #5 - With May J. Shaa



HOW AND WHEN DID YOU GET RSD?
I got RSD in February 2004, when my ex-husband slammed the back of my head and neck against concrete stairs.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
RSD has made it harder for me to do most things, but it has made my faith and determination stronger.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
I have a very supportive church, full of friends, and a supportive husband.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Yes, indeed. If I had nothing to believe in, my life would be pointless.

HOW HAVE YOU RE-INVENTED YOURSELF?
I have started an online support group for RSD-ers, and I’ve become an advocate for RSD Awareness through my website and my artwork.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
Yes. I've gained faith. I found a wonderful husband. I'm more active in my children’s lives. I've started taking care of myself. I'm kind to everyone and I now have more respect for others.

WHAT THINGS DO YOU MISS THE MOST?
I miss nursing, long walks, and traveling.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
I want them to know people aren't faking for medications, and that RSD changes your life.
I want to make women aware that this could be them; having to live in agony constantly, only because they were too scared to leave.


Saturday, December 29, 2012

RSD Interview #4 - With Eve Thomas



HOW AND WHEN DID YOU GET RSD?
They think I got RSD, originally, from Scoliosis back surgery that I had when I was 10 or 11 and am now 29, but it took a collision with a 230lb male ice hockey player to make it evident. At just 117 lb, I twisted and dislocated my knee cap and was finally diagnosed in 1999, but the hockey injury was July 17, 1998.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
I am not able to work.
I am in a lot of pain and have trouble doing daily activities due to the pain.
I have lost friends who do not understand when I have to cancel plans due to not feeling well.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
Yes, through the Internet and some family and friends.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Yes, it plays a part in both.

HOW HAVE YOU RE-INVENTED YOURSELF?
I try to help others and mentor others who are dealing with RSD, or are new to RSD.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
Yes, helping new-comers, who have been diagnosed with RSD, understand that they are not alone.

WHAT THINGS DO YOU MISS THE MOST?
Being able to play sports, having a normal social life, relationships, and being able to live a normal life day to day.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
That I am there to help people who are younger and new to RSD, if they need someone who understands what it’s like to be newly diagnosed with RSD and know how scary it can be. I have, also, been through multiple treatments for RSD; most with no success, until the pain pump which is what has helped me the most. I was not diagnosed in the first 3-6 months, when you have the best success of controlling the RSD. Rather, my RSD spread quickly and has caused multiple other medical issues, due to complications from the RSD.


Friday, December 28, 2012

RSD Interview #3 - with Theresa Wade


HOW AND WHEN DID YOU GET RSD?
My battle with RSD began in January 2011, although I did not know that at the time. I suffered a torn tendon during a fitness challenge. It was a 4 mile run obstacle course. I finished fourth in the race; I was very athletic at the time. I treated it conservatively, and it never healed. I had an MRI in March that showed it was healing, but the pain never went away. If I had known what RSD was at that time, that would have been my first clue. Instead, I kept it immobilized throughout April and May and had surgery in June of 2011. Again immobilization through June, July, and August. The foot never cooperated. I was not able to walk. I had constant problems. It never healed properly. Another MRI was done in September 2011. It showed RSD. I was officially diagnosed in my right foot in September 2011. It later spread up through my knee and hip, then mirrored to left ankle. I also have it in my right arm and hand, and have some tingling and numbness in my left two fingers and wrist. All four of my appendages are now affected in less than two years. The left arm symptoms appeared about a month ago.


IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
I went from a 5K, 10K athlete to wheelchair bound and walking with a cane. I used to be a writer. It is difficult for me to type now. I am a teacher, and standing all day has proven to be nearly impossible. It is hard for me to grade. Every aspect of my life has been affected in some way. It is depressing to be fairly young and incapacitated. It is hard to pick and choose which part of my life to focus on. For example, if I spend all my energy at work, it is difficult to focus on family. If I work on graduate school, I can't grade papers. It is a juggling game, and I am usually dropping the balls and constantly in pain.


DO YOU HAVE A GOOD SUPPORT SYSTEM?
My home support system is great. I would never survive without my family. They do everything to help me. My family is the sole reason I am here today. Without the love and support of them, I would not even bother to go on some days. My graduate school professors have been fantastic with me. They have been great about allowing me extra time to make up assignments when out or because I struggle so with typing and notes. I had a good support system at work until I got blood clots.


DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
I used to spiritually question why God did this to me. Then I talked to a friend of mine and she said that asking why is pointless. I have been angry. I have been hurt. As I have moved toward acceptance that this is my life now, I realized that God gave me this struggle for a reason. I pray. My favorite verse is II Timothy 4:7, "I have fought the good fight; I have finished the race; I have kept the faith" I always repeat it on the bad days.


HOW HAVE YOU RE-INVENTED YOURSELF?
I have had to find other things to do to occupy my time besides be an athlete or be mad and brood. I have begun painting and I love it. I also read more, spend more time with my kids, and I have also started writing a book. I was blindsided with my RSD diagnosis, never having heard of it. I don't want others to feel like that. I also have accepted that who I was is not who I AM. I am not the person I was two years ago. She's gone. I need to focus more on who I am. Who I am is a good listener, a great personality, fun to be around, slower than others but not STOPPED.


HAS ANYTHING GOOD COME FROM THIS TRIAL?
Well, I was able to find a good doctor that works well with me and we were able to find a treatment that works well most of the time. I have a spinal cord stimulator. I also have patient doctors that work with me. I have become closer to my family. I have learned that things I used to think were important, such as running a 25 minute 5K or being the fastest or strongest aren't as important as being alive and able to spend time with my family. I've learned priorities.


WHAT THINGS DO YOU MISS THE MOST?
I miss running. I miss feeling the wind in your face as your feet pound the pavement. I miss being able to bounce out of bed. Now it's a slow 15-20 minute process. I miss not having to plan trips. I miss sleeping with only one pillow. I miss not having scars all over my body. I miss being carefree. I worry so much now. Whether I have enough medicine. Is my stimulator charged? How many times will we need to get out on a trip? Will going shopping put me in bed tomorrow? Maybe someday.


WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
I am a determined person. I WILL NOT let this disease beat me. I fight it every day. It is trying to take over my entire body. Right now it's winning, but in the end I will! I think having RSD has changed me. I have educated as many people as I can, but there are so many who do not even know what it means. I think that getting the spinal cord stimulator has helped, but now with the possibility of two looming, I get scared. The pain never goes away. It's a double edged sword of physical and emotional. Hopefully, people reading my story will understand that the things we do for RSD are like concealer. They cover up the pain, but it never goes away. It's always there. I hope to take it down someday!

Thanks so much for the opportunity to do this!

Theresa Wade

Thursday, December 27, 2012

RSD Interview #2 - with Peggy Lindsay



HOW AND WHEN DID YOU GET RSD?
I got my RSD in my left arm after falling and breaking my left wrist. I had to have surgery and have a T plate and screws put in my wrist. The surgery went well but I overextended myself afterwards. I rotated my wrist and caused the ulna bone to splinter and the plate to loosen. This was followed by excruciating pain, swelling and cold temperature in my entire left arm.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
My RSD has affected my life in so many ways. I cannot do anything like I used to. I am having to relearn how to do things with only one hand, as my wrist cannot lift, pull, or push anything over 3 lbs. I also stay nauseous from all of the strong medicines that I have to take. I am already experiencing severe bone loss in left hand. My RSD pain is through my entire left side. The medicines that I have to take to somewhat control my pain make me have short term memory loss, confusion, balance problems, anxiety attacks, and I cannot even drive.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
Absolutely!! I tell my husband and sister everyday that I could not make it without them. I cannot imagine what my life would be like without the two of them. I am truly blessed there!

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Absolutely again, I am nothing without God, but can do all things with Christ, and I call on him daily to overcome obstacles that I cannot overcome by myself.

HOW HAVE YOU RE-INVENTED YOURSELF?
I am still in the process of this. I learn every day that I am limited in ways, and all of the complications, that go with this disease.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
I look everyday for "lessons" throughout this journey but, thus far, all I can see is that God knew that it would take something this serious to slow me down.

WHAT THINGS DO YOU MISS THE MOST?
I miss my independence most of all. I was always a type A personality (the over achiever), never slow down multi-tasker…and that has totally changed. I was working two jobs 15+ hours a day. It is a good day now to get ready and make it to the doctor’s office.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
Please do not judge others, as you don’t know what their life is like unless you walk in their shoes.



Monday, December 10, 2012

2012 The Year in Review

Wow!  What a year!  It started in Crisis and is ending in Celebration.  It seems like a whirlwind.  Yet, parts of it dragged on.    The crisis I refer to is sickness beyond RSD.  And the celebration relates to continued bed mobility.  If you saw the extent of atrophy I have, you would understand the grace, maybe even miracle, that I am still moving.  Another reason to celebrate is that I accomplished all my goals this past year...or even that I survived depression from a chemical imbalance and grief from the widespread loss of  muscle.  Sounds like cause for celebration  to me!  So tell me about your year (2012).  Was it good, bad or mixed?  I also want to add that my soon-to-be 3 year old grandson became "officially" ours through the beauty of adoption, one granddaughter became a teenager, and the other one is now driving! What blessings do you have in your life?

Sunday, December 2, 2012

HOLIDAY SHOPPING!
















                 10 CHRISTMAS GIFT IDEAS
              FOR CHRONIC PAIN PATIENTS

  1.  Satin sheets and satin sleepwear, to aid movement

  2.  Fleece throw, for warmth

  3.  Slipper socks, for warmth        

  4.  Body lotions / creams, for dry skin

  5.  A walking cane                                                                                        

  6.  Weekly pill case

  7.  Cell phone / Laptop / iPad / Flash drive (Electronics)

  8.  Music / movies

  9.  Book...In the Blink of an Eye  (YAY !!!)

10.  Cappuccino    (Whether sick or well !)