Wednesday, July 20, 2011

Dum spiro, spero. While I breathe, I hope.

One year ago to this day, I had the last of two surgeries to implant a spinal cord stimulator in my lumbar spine to treat RSD/CRPS in my left leg. Less than two weeks later, I had quit my teaching position in Phoenix, Az and was moving back home to live with my parents in Forth Worth, Texas. As the one year anniversary of my surgery and move to Texas approached, it was hard to not look back over the last year without a sense of disappointment. It was with the same nostalgic feeling that people get near New Year's when they are reflecting on their accomplishments and failures in the past year, but my reflections tended towards all the days I had spent in bed because of pain. So many days wasted, so many days that blur together because there was nothing memorable about them. What proved even more difficult was remembering to keep a positive attitude in spite of everything. It's so very easy to become discouraged when life doesn't go the way you wanted or expected it would- but then I guess that's life, uh? 
I've toyed around with the idea of starting a blog several times in the past year but lacked the inspiration and concept to keep me driven -until recently. Unlike Phoenix, DFW lacks any real community for RSD/CRPS suffers and I've had real difficulty finding other chronic pain support groups as well. I frequently attended symposiums and other groups raising awareness about peripheral neuropathies after being diagnosed with RSD in Decemeber 2009 but I've had trouble finding much of anything since I moved to DFW last summer. Chronic pain is already an isolating condition with being able to meet with others who have the same condition, let alone not having any empathetic support. And so my purpose for starting this blog is two fold:
  1) to reach out to others: I want to inspire and support others while spreading information about RSD/CRPS and other neuropathies.  
  2) to learn to control the parts of my life that I have control over and to learn to let go of the parts that I have no control over: I don't want to spend another day focusing on how my life has changed for the worse and focusing on all the things I had planned that at the moment are not possible to accomplish. There is still so much I can do and I should be focusing on that fact! As long as I am alive and breathing, I should have hope!
And so starting today, for one whole year, I will post at least one thing a day- whether it be a photograph I've taken or a painting I've made, an article I found inspiring or an obstacle that needs overcoming, I will post it to this blog so that next July 20th, 2012 I will not have let another year be taken away from me. Instead I will be able to look back and point to all that I've accomplished and learned... and God willing I will inspire others in the process.

12 comments:

  1. Wow, I'm very new into this but you are inspiring. Do you have your story posted somewhere. Like I said I am only 7 weeks into RSD and I have never blogged. Ugh. I'm not even sure how to get back here.

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    1. I too was dx with RSD about 6 months ago after breaking my foot twice just by walking on it. After the casts came off, I felt I was in worse condition. Then I was dx with RSD. I am a nurse and really didnt know alot about RSD.
      I also have Multiple Sclerosis. So I sure do know the meaning of pain. We really do have to get information out about RSD. So many people have it but yet not many know about it!
      I know there is a reason for everything and I have never asked "why me?" I have always said "why not me?" I am not different than anyone else. I have had MS for 13 years. Postive thoughts and family and friends support is very important. Its hard to get up each day knowing my day is going to be filled with pain, but as long as the Good Lord lets me see the next day, well I have to make the best of a bad situation.

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    2. I too, am a nurse. Nursing is all I ever dreamed of being as ittle girl. Today, as a woman, I struggle with just getting out of bed. A complete polar ospposite of my former life. I have good days, and I have bad days. I will admit, the only thing that helps me keep it together, is my faith in the lord.

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    3. Hello there, my name is Sue. I just read your post and I have to tell you about my sister-in-law. She too has RSD. She was in a motorcycle accident 10 1/2 years ago. She had to have her right leg amputated to try and stop the RSD. It did not, they removed her leg for nothing. Things got so bad she even tried to take her own life. The narcotics she was taking was more than enough to put a horse down, she even tried Ketamine Treatments, nothing was working. One day a family friend who is a nurse came to see her and she had this box of Beet Pills with her. They are a 100% natural product. She asked Connie to try them, so Connie did, 3-3 1/2 wks in Connie's pain disappeared. She's not cured but she's not in pain anymore. She wears her artificial leg now and this year has gone golfing and horseback riding. We shop and she walks thee store now, she doesn't have to drive to electric store cart. Please contact me for more information on these amazing pills. I can't promise you they will help you but what have you got to lose? susancraig_64@sympatico.ca. Respectfully yours, Sue

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  2. hi I am Leisa and I have had RSD since 1996. I was a nurse also and it is very hard to have to give up a job that you love and did for so many years. my life after 1996 has changed and was been bad and good. My ex husband left me because he said he couldnt handle it. I lost friends that said they we my friends and that they understood and would be there for me but when times got tough they left.
    my children have been the best supports emotionally that I could have. I have 2 grown sons and on daughter that is still at home. I however met the most amazing man about a year ago that has stood by me Dec 2011. I had to go back in to surg and have my SCS replaced and then fell 1 week later and tore one of the leads and broke the battery pack. so Feb 2012 I had to go back under and have the SCS replaced again. I have RSD in my right leg is were it started and now I have it all on the right side. I realize this is long and I could go on and tell you all about the past years but I will stop if you have any questions please feel free to ask.

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  3. Leisa, i have lots of questions, like is there really remission and do most people with rsd get worse in the same way? How can we talk. Teresa IL

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    1. Teresa my email is leisadokey68@gmail.com please feel free to email me and I will try to help you as much as I can

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  4. after falling getting hurt,I heal then turned into a nightmare.Doctors,many test,pain meds,finially I get someone to hear me its RSD..I have been trying to get someone to listen for over 2 years.Its in my right leg and now my left arm.Then pain is terrible,and my moods are uncontrollable.The least little thing sometimes.I feel like getting in a fight and I want to be right,or my way.does anyone else feel like this?I have to use 2 heating pads every day.I still work part time.There are days I just want to stay in bed.I feel like no one understands me.The pain,just from my clothing,or my shoes,the weather the list could go on.I feel so alone.There are days it hurts just to walk.Stairs are terrible.I know I sound like a big complainer,but I am just trying to figure out ,am I the only one who feels like this?please let me know..I pray every day thanking God I am still here.I know he has a plan for me.So God Bless You All

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  5. Worldwide Awareness Campaign Please Help

    People and sites from around the world are coming together to turn November 2013 into International RSD Awareness Month, currently only America has a National Awareness Month.
    Please spare 5 1/2 mins to watch this video but be aware you may find some of the images disturbing.
    http://www.youtube.com/watch?v=MviVcjWZDts
    it is vital that you watch it to the end
    If you are newly diagnosed I strongly suggest you do not watch it.
    If you live in the UK please sign http://epetitions.direct.gov.uk/petitions/31344
    E-mail the link to your MP asking why since being informed on 30/10/2010 David Cameron, Nick Clegg and The DOH have refused to do anything about the situation.
    You can also send it to some members of the House of Lords.
    http://www.parliament.uk/mps-lords-and-offices/lords/
    No matter where you live in the world can you please sign here http://www.pledgebank.com/RSDCRPS
    http://you.38degrees.org.uk/petitions/worldwide-rsd-crps-awareness-campaign
    http://www.thepetitionsite.com/460/118/995/worldwide-rsdcrps-awareness-campaign/
    http://www.change.org/en-GB/petitions/goverments-worldwide-un-world-health-organisiation-find-the-millions-of-un-misdaignosed-rsd-crps-sufferers-across-the-world
    http://www.ipetitions.com/petition/worldwide-rsdcrps-awareness-campaign/
    http://www.gopetition.com/petitions/worldwide-rsd-crps-awareness-campaign.html
    http://www.activism.com/en_GB/petition/worldwide-rsd-crps-awareness-campaign/40439
    http://www.causes.com/causes/800617-worldwide-rsd-awareness-campaign/actions/1700679
    http://www.petitionbuzz.com/petitions/worldwidersdcrps
    http://www.petitiononline.com/RSDCRPS1/petition.html
    http://www.communityrun.org/petitions/worldwide-rsd-crps-awareness-campaign-1
    https://petitions.whitehouse.gov/petition/take-immediate-action-inform-medical-professionals-existence-rsdcrps-most-painful-incurable/SFkd2cS6

    If you live in another Country can you start your own petition and send the link to your own Politicians
    If you are willing to commit to spending 15mins a day for 4 weeks then 15mins a week to help spread this then please e-mail me on.
    RSDFighter@hotmail.co.uk or join me on facebook
    Kevin

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  6. I have RSD in advanced stage 3 I am taking Morphine and Hydro codeine, Lidoderm patches and Lidocaine topical.
    I am being treated by the VA.
    This disease is so dam debilitating !!!!!!, and very painful !!!
    1. It is like someone has your extremities in a vice trying not to break them but bend them !!!
    2. At times my feet feel like there are worms crawling inside.
    3. My feet can no longer fit any of my shoes.
    4. Trying to walk is agonizingly painful. I am in a motorized wheel chair.Putting weight on my feet is like stepping on a bed of needles.
    5 When I get one area under some control it finds a way to another area.
    6. My mussel tone has gone to hell.I am like skin and bones.
    All the medications do is keep me from going insane .
    I think this fight is just about over .

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    1. Hello there, my name is Sue. I just read your post and I have to tell you about my sister-in-law. She too has RSD. Her life was from her bed to her couch, then her couch to her bed. She was in a motorcycle accident 10 1/2 years ago. They had to amputate her right leg just below the knee. Constant pain, on enough narcotics to put a horse down. 25 dilaudid a day, she tried Ketamine treatments nothing helped. She got really, really depressed and tried to take her own life due to the fact she felt she had no life. A family friend who is also a nurse showed up one day and she had a box of Beet Pills with her. These are 100% natural. She asked Connie if she would try them. So Connie humored her and started taking them. That was Dec.2012, three, three and half weeks of taking them her pain disappeared. Today she can now wear her artificial leg. She has been golfing, riding horses and we can actually go shopping with out her driving the electric store cart.She by no means is cured, but she is now pain free. Please contact me at susancraig_64@sympatico.ca and we can talk more and maybe get you signed up for a monthly delivery of these amazing pills. Hope to hear from you soon. Respectfully yours, Sue.

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  7. My name is Brianna and I am a student in the occupational therapy program at Loma Linda University in Southern California. I am in my last year of the program and am working on an independent study project on CRPS (RSD). I am working on developing a unique approach to treatment. One of my objectives is to interview people who have this diagnosis to get first-hand information about what it is like to live with this diagnosis and to receive their feedback about my ideas for treatment. If you are willing, I would love to talk to you, either via email or phone. My email is: briwood@hushmail.com

    If possible, I am hoping to get my interviews done by September 2, 2014, just about 2 and a half weeks away. I know that is short notice, but please let me know if you are able to talk to me. I hope you are having a great day!

    -Brianna

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