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Posts Tagged ‘Treatment for Chronic Pain’

 

I have learned that this journey through chronic pain and illness is a bumpy one.  It isn’t a process where you learn something, and then you never have to address that part again…. As time goes by and my illness evolves, so does the process…. and I find myself having to re-address things over and over again while trying to look at things from a different perspective each time.  What have I missed?  What did I not learn the first time?  Has my illness progressed since the last time I had to face this particular issue?  Have I matured since the last time I faced this particular issue, so maybe there is something different to learn this time?……. It sure isn’t like riding a bike.  You don’t get back on and just know how to pedal…. it is different every time.

These past few years have been really difficult for me, and my pain has slowly gotten worse and worse.  Every medication I have been on has either stopped working, or just never worked to begin with.  Emotionally, I have gained many tools to deal with living this life, but physically a body can only take so much….  I was really fighting that point, and thinking that I could take it all on, but the proof is in the pudding so to speak.  I have back-slid.  And requiring extra help was something I didn’t think I would have to think about…. until now….

When I first became really ill, it changed life completely.  And not just mine, it effected my whole family.  After being misdiagnosed for close to 2 years, having exploratory surgical procedures, being bed ridden, I finally got into a place where I live called the Chronic Pain Centre.  It is a government-funded, multimodal clinic for people who suffer from severe pain.  The day I walked into the clinic for the first time changed my life.  I walked in as a desperate girl so badly wanting to believe there was a ‘cure’ for me, and I walked out knowing that I may have to deal with this for the rest of my life.  It was completely overwhelming…..

I ended up being a patient there for 3 years.  I saw pain specialists, physiotherapists, kinisiologists.  I saw nutritionists, worked with the pharmacists, saw a psychotherapists, and worked hard for those 3 years to understand every aspect of illness.  It was a full-time job, between the ‘group’ lectures I attended, sleep seminars, reading, weekly psychologist appointments, weekly physiotherapy appointments, and that doesn’t even include the appointments I had with my Doctors…..  It was a HUGE commitment.  In some ways it has been the biggest commitment I have ever made to myself.

I crawled…. and then I toddled…. and when I cold finally walk on my own, I ‘graduated’ from the program and thought I was on my way to living in SPITE of all of this…. If this was the hand I was dealt, I thought I had found as much acceptance as I ever would, and I was relieved and excited to move from that program and to live life on my own terms…..

That was close to 4 years ago, and after much time, suffering, frustration, and failed attempts to manage this on my own, I had a heart to heart conversation with my Doctor, and she has referred me BACK to the Chronic Pain Centre.  And I honestly don’t know how to feel about it….

Part of my is relieved, as I know I can get help there that I cannot get on my own.  I won’t have to worry about the expense of therapy, and the impact it can have financially on my family.  I am in a MUCH  better place emotionally now than I was when I first went through the program, which leaves me to believe that I am more ‘ready’ this time around….  But I am also really sad to find myself back at the starting gate.  I was hoping I would never have to go back there.  I was hoping that SOMETHING I had done or tried in the last 4 years could have been the answer… my answer… and the truth is, no matter how much it hurts to say it, I just haven’t found my answer yet.

It is going to be a big commitment to make, and no doubt it will impact my family again… but I hope that the positives will outweigh the negatives.  I hope that maybe, this time, they have more answers, more solutions, and more ways to help me ‘deal’ along the way…..

Is it a step forward or two steps back to have to enter this program as a patient again?  I am not sure how to answer it.  I guess it depends on what day you ask me that question.  I feel really conflicted….

All I know is that I don’t want to have to live like this forever.  And I am not going to stop fighting….

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MANY people in the world of Chronic Illness have seen this meme already.  It is designed to promote National Invisible Illness Week.  Even though I added this Meme to Graceful Agony when I first started this site, I feel compelled to do it again.  As I mature and grow through this journey of Chronic Illness and Chronic Pain I have noticed that some of my ‘answers’ to the following questions have changed…

So here is my updated list!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
I live with a combination of illnesses actually. You could say I was born with an invisible illness, and have struggled my whole life, so I am no stranger to this journey!   I have congenital heart disease, severe Fibromyalgia, severe Myofascial Pain Syndrome, Insomnia, TMJ Disorder, Ligament Instability, Si Joint Dysfunction, Unclassified Nerve Pain, Chronic Pelvic Pain, and Endometriosis.

2. I was diagnosed with it in the year:

That would be a hard question to answer….. I was born with my heart problem, I was diagnosed in my early teens with ‘fibrositis syndrome’ which was actually fibromyalgia, but lacked the fancy name in the 80′s ;) as well as TMJ Disorder, but the rest of the conditions have been diagnosed in the last 6 years.

3. But I had symptoms since:
I have had symptoms all my life really, but they became worse after the birth of my son, and unbearable just over 4 years ago when I was going through devastation in my marriage….. some people have a nervous breakdown… I guess I had a physical breakdown.

4. The biggest adjustment I’ve had to make is:

The Biggest adjustment(s) I have had to make is changing my lifestyle and knowing my limitations. Before I was seriously effected by my illnesses, I was a very active young woman. If you had asked people in my life back then a bit about who I am, most would have said I was ‘bubbly’ and ‘sociable’ and ‘energetic’. Sadly, because of my pain, I still feel like I am the same person on the inside, but I am not as sociable or energetic anymore because my pain causes me to ‘hibernate’ a lot.

5. Most people assume:

I don’t know what most people ‘assume’ truly, I’d be only guessing…. I think the people in my life that love and support me don’t assume anything, because they have been through this every step of the way with me, and they know that ‘assuming’ anything is not the way to go…. they communicate with me and wait for me to lead the pack so to speak.  In saying that, I also know that I have been misjudged and misunderstood by people in my life, and would go as far as saying that I have been stereotyped and treated unfairly.. those people are no longer in my life.  Life is too short to hang on to those who aren’t worth your time.

I am blessed to have parents who are AMAZINGLY supportive, a partner in life who loves ME, and has never seen anything other than who I am, and is proud of me every single day.  I also have the world’s best son!  My little dude has a really great understanding of this life, and I hope it leads him to have only compassion for people’s differences.

6. The hardest part about mornings are:

The hardest part of the mornings is simply getting up! I am almost ALWAYS in agony when I first wake up in the morning, and not mobile. On really bad days my honey brings me my meds and a coffee in bed, so I can wake up slowly and start moving slowly…. On regular “bad” days, I can get up and get my own meds, and then I try not to move too much until my body warms up a little…. that is ALWAYS followed by some light stretching and a HOT bath, and then I am usually mobile after that.

7. My favorite medical TV show is:

I love ALL medical shows! I wish Dr. House was my long-lost uncle or something ;) …. he would have the “cure” for me in under an hour :) ER was another of my faves (I have the last season on my iPod), and I love Grey’s Anatomy, Private Practice, Mercy… you name it! I cannot be a Doctor in real life, but I’d love to play one on TV!

8. A gadget I couldn’t live without is:

Another hard question! As with a lot of my online chronic friends, gadgets seem to be my bestest friends, and they make my life a LOT easier! My laptop, my blackberry, my iPod Touch…. and my new Sony Reader! I LOVE THEM ALL! Just ask my honey, because they are USUALLY all brought to bed with me every night! (Yikes, that is not very romantic, is it?)… and I have been known to blog in the bathtub from my iPod…. and yes, I have dropped my smartphone in the bath ONCE…. see.. I told you, they go EVERYWHERE with me!

9. The hardest part about nights are:

The hardest part about nights is PAIN, and what comes with the pain…. feeling alone, 4am baths, sitting on the couch in the dark by myself, or not being able to cuddle because I am too sore….. Pain is often isolating, and that isn’t something that I have gotten used to yet. My honey gets mad when I tell him I have been up all night with pain, and usually asks me why I haven’t woken him up, but I don’t think it is fair that BOTH of us are up all night.  I work hard NOT to let depression creep in during those isolating times.

10. Each day I take __ pills & vitamins. (No comments, please)

It varies depending on how much pain I am in, but on a good day I take 5 different medications throughout the day, totaling  15 pills a day…. On bad days the number goes up in relation to how much pain I am in….. I will probably end up on 7 different medications, and god knows how many pills in total that will be.

11. Regarding alternative treatments I:

Regarding alternative treatments, I have pretty much tried everything other than doing the Macarena while standing on my head! I have tried acupuncture, acupressure, craniosacral therapy, massage, chiropractic, holistic, naturopathic…. yep, you name it, I have tried it!

12. If I had to choose between an invisible illness or visible I would choose:

When I first answered this question, this was my answer..  ‘If I had to choose anything, I simply wouldn’t. I would choose a life without illness period. But because that isn’t the case, and we don’t live in Utopia, I will choose exactly what I have… and hopefully the courage to teach others what it is to be like me everyday. Promoting awareness, compassion, and education might hopefully, one day, change the world in which people like me live.’

The gist of my answer still rings true today… I believe there has been a change in the conviction I feel though.  Today if I were to choose between having an Invisible or Visible illness, I would choose Invisible hands down… And this is why… For a very long time I thought that the only option I had to be happy was to not have illness of any kind.  I was wrong.  I have a VERY full and rewarding life… NOT the life I ever thought was possible for me.  I have met so many amazing people through Graceful Agony, and I would NEVER want to say goodbye to any of them.  They have added so much more to my life than I ever thought possible… so if illness is what has brought us together, then I can accept that.  I choose MY life, the way it is..

13. Regarding working and career:

Regarding work and career, my pain, and being the best mom I can be, IS my full-time job. I hope one day that I can make a career our of writing, and being a patient advocate in some capacity.

14. People would be surprised to know:

People would be surprised to know how soft my heart truly is… I have been fearful at times that my illness has made me either less approachable, or more hardened or jaded…. People that have known me for a very long time know that I am a softy….. but people who meet me now… I am not sure how they view me. I cry at the drop of a hat, during commercials, when I listen to music….. I spend a lot of time thinking about OTHER people, and probably not so much time thinking about myself. I always have everyone elses best interests at heart, and that can cause internal battles for me at times.  You can say I am a people ‘pleaser’, but not because I have to, it is because I WANT to.  That is who I am.  Somehow when intense and chronic pain gets involved I think that may get lost in translation somewhere.  I think I sometimes come across as being a lot more impatient and cold than I truly am.

15. The hardest thing to accept about my (not-so-new) new reality has been:

I think that answer might change from day-to-day, depending on where I am at with my pain level, and what I am doing. Life has a way of throwing you new curveballs every day…. And if you were to ask me that question 4 years ago, I am sure the answers would have been vastly different from today.

The thing that I often discuss with the ones I love is that THEY have created normalcy around my illness. They have HAD to… so when I say “I’m having a really bad day today”, they aren’t surprised by that. But for myself EVERY bad day I have is like THE VERY FIRST BAD DAY…. I haven’t gotten used to being in agony…. I mean, I am USED to it from the standpoint that it happens all the time…. but it still feels as intrusive and shocking to me as it used to…

The other thing that I haven’t gotten used to is what an all-encompassing impact my illness has on everyone I love.  Chronic Pain is a family illness…  I don’t ever get used to seeing the helpless look on my Dad’s face, or seeing a tear in my Mom’s eye.  It gets NO easier to deal with my sisters discomfort when my pain is brought up in conversation, or when my honey gets angry with my pain… I am still trying to learn how to separate ME from my pain during those times… I feel really bad that my pain hurts others… I am trying to NOT take responsibility for hurting my family.

16. Something I never thought I could do with my illness that I did was:

Something I never thought I could do with my illness has been to have someone love and accept me completely EXACTLY as I am….. baggage at all. When my marriage was coming to an end, I had completely resigned myself to the fact that nobody would love me the way I am, and that I was totally okay with being single or ‘alone’. Out of the BLUE an old friend came back into my life, and it was LOVE AT FIRST SIGHT (or 100th sight really, since we were friends years ago)… We spent MANY MANY hours on the phone talking before we ever met for coffee… I wanted him to know exactly what my life was like….. He didn’t think it was an issue in the least bit! He kept saying things like “you are my hero”, and “Wow, I cannot believe all the things you go through, I have so much respect for you.”. It was a point of view that I was really not ready for…… 19 months later he has been with me through thick and thin. He is truly my best friend, and we have a love that has risen above everything that has been thrown our way. I want nothing more to spend every day of my life with him….. and I am surprised that I have been so blessed.

17. The commercials about my illness:

What commercial there are about my illness, do not depict ANY of the illness accurately! They drive me crazy! Take a pill, and in 30 neat seconds that look more like a musical montage than real life, POOF! You are happy and jogging down a sandy beach with your golden retriever…… crap, can I have a pill like that?!?!?

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

I miss the little things….. having the energy to get up and go, watching my son’s Christmas concert without having to worry about how hard the seats are, how long I will be sitting for, what price I will pay the following day……. It isn’t BIG things like ‘Oh I wish I could go skydiving still!” or “I really miss alpine skiing!”…. I really miss just NOT having to be aware….. I am hyper-alert every minute of every day, and it is TIRING! The first thing I think about in the morning when my eyes open is what I have to do just to get through the day…. I always have to be 10 steps ahead of the game….. if I have a coffee date at 5pm, I have to modify everything I do so I know that I will be mobile and functional by the time 5 rolls around….. I miss NOT having to think in those terms…. I miss not having to think of my pain every second of every day whether my pain is bad that day or not…. I always have to be 5-10 steps ahead…… it prevents me from living in the moment at times.

19. It was really hard to have to give up:

In a word, FREEDOM…. Physical, Mental, Emotional etc….. There are a million things I have given up, but they always end up being about one word…… freedom.

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

I don’t know if I have taken up any new hobbies….. I have always loved to read, and know I read just as much, but maybe I read about different things…. But other than that, all my hobbies are pretty much the same – making jewelry, knitting, crocheting, reading, spending time with family etc.

21. If I could have one day of feeling normal again I would:

If I could have one day of feeling normal again, I don’t think I would do it. If it was only ONE day, and the following day I would go back to feeling this way, I think the EMOTIONAL price I would pay for that would be more than I am willing to pay.  DOES THAT SOUND CRAZY?  I am now at a place in my life that I have no muscle memory or recollection of what it was like NOT to have pain…. I honestly don’t remember now… and I think if I had one day to feel that way, I would have to deal with all the depression and emotion of accepting a life with pain all over again….. I hope that makes sense.

22. My illness has taught me:

Where to start with that one?!?……. My illness has taught me a million things! Mainly though, it has taught me how strong of a woman I am, how much I am loved, how the human spirit can bend and break, but it becomes stronger at the broken places…. It has taught me what strength, and courage, and perseverance truly mean…..

It has also taught me that there is strength is numbers.  There is a united front in our online community – and the people who you may expect anything from the LEAST might just be angels that have been purposely put in your path… Thank you my earthly angels who are reading this…  I hope you know that my words mean nothing without you on the other end – reading them, loving me, and encouraging me.

23. Want to know a secret? One thing people say that gets under my skin is:

One thing people say that gets under my skin is “It could be worse!”….. um that is very easy to say when you are not the one having to live this life everyday…. That is a huge slap in the face.

24. But I love it when people:

I love it when people take the time to talk to me about what I go through, and really listen. I love it when I connect with people…. I love it when people take the time to give me encouragement, listen to me cry, put up with my rants, and don’t judge me.  Some of the most powerful words to hear are “I am so sorry you are going through this” and “I love you”.

25. My favorite motto, scripture, quote that gets me through tough times is:

My favorite thing that gets me through tough times is just to count my blessings…. it always looks much darker when you don’t stop and reflect on how many wonderful things you have in life, and how much gratitude can come out of a little bit of reflection.

26. When someone is diagnosed I’d like to tell them:

When someone is diagnosed I’d like to tell them that even though our experiences and or symptoms might differ, I am always here for YOU!  I hope to have the opportunity to share my experiences, my friendship, and to encourage you to have hope.  YOU are NOT alone!

27. Something that has surprised me about living with an illness is:

Something that has surprised me about living with an illness is that it has made me tolerant of things that I normally would have not been, and it has proven to me that I am stronger than I EVER thought I could be.  My will, courage and fortitude has ended up being something very different from what it used to be.

28. The nicest thing someone did for me when I wasn’t feeling well was:

I don’t know that I can answer this question with one answer….. There are so many nice things that people do for me when I am not feeling well! My honey is the greatest (okay okay, I am sure that you are probably getting sick of hearing that already ;) ), and he is FULL of wonderful things that he does day-to-day… from bringing me my medication, rubbing my back, reminding me of my strength when I forget… holding me as I sob, and not judging me…… My parents are ALWAYS just a phone call away to talk me off the ledge when I have had enough, they love me unconditionally, and the power their love has brings me to tears.   I have some AMAZING online friends who are ALWAYS there to listen to me…… The thing that makes the most difference when I am not feeling well is to simply just have someone ‘there’ and to know that I am not alone.

29. I’m involved with Invisible Illness Week because:

I am involved because THIS is who I am.  I AM Graceful Agony… and I do this for others who walk this road as well.

30. The fact that you read this list makes me feel:

The fact that you read this makes me feel loved! THANKS EVERYONE!!!

**If you are reading this anywhere other than www.gracefulagony.wordpress.com it is because this post has been stolen.  Please click on the link provided to return to the site of origin

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This is what I feel like this morning:

But this is what you see:

While I:

I just want to:

After a night of this:

And this:

And a LOT of this:


So today I am really trying to be this on the outside:

When on the inside I feel:

It’s one of those days in the life of an invisible illness that the outside doesn’t reflect what’s on the inside….

**If you are reading this anywhere other than www.gracefulagony.wordpress.com it is because this post has been stolen.  Please click on the link provided to return to the site of origin

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OKAY EVERYONE…. HERE IT IS!!!!

THE VERY FIRST ROUND OF THE GRACEFUL AGONY BLOG CARNIVAL IS HERE!!

I just wanted to first express my thanks to EVERYONE who participated, and for all the support and encouragement I have received…. IF you have hosted a blog carnival in the past you know that there is a bit of work that goes into it.. but does the ‘work’ ever pay off!  It has been a pleasure and MY honor to get to know all of you better, read your ‘introductions’, and share in your experiences, your perceptions, and most of all the wonderful and raw parts that make up YOUR human spirit… THANK YOU for sharing with me, and now I GET TO SHARE WITH ALL OF YOU…..

So without any further adieu…. I now present to you the first round of our brand new blog carnival!!!!!

– Sheila is a wonderfully strong woman, and the moderator in our Graceful Agony Facebook group.  Her introductory post, Who I am now? Introducing….ME! will give you some insight to her strength.  From single-mom struggling and almost homeless, to her struggles with her health – Sheila keeps putting one foot in front of the other…. I admire her greatly, and thank her for all the support and time she puts in to our group!

– I haven’t known Dana for long, but I must tell you, there is a wonderful energy about her – and you will immediately know what I mean when you read her post,  A tsp of sugar, a tsp of spice, a dash of everything nice…. Dana has Avascular Necrosis, Fibromyalgia, Sjorgren’s… yet she also has a ‘get up and go’ mentality, living a purpose driven life.  Her spirituality and her family motivate her to live the best life she can… that is VERY clear.. but what else is clear is that she is one special gal.  I’m honored to be in her circle.

– Kathy is someone I have been friends with since joining the online community.  She also lives in my city, and I cannot wait to meet her in person and give her a BIG HUG…  She means the world to me.  Her blog post, Introducing Kathy will give you a glimpse as to why she is so important to me.  With Kathy, what you see is what you get – and she lives her truth.  I have GREAT respect for her.  Although she deals with Fibromyalgia every day, she is always there for others, is truly an ARTIST in many ways (look at her photography – you will see what I mean), and is a true friend in every sense of the word.  She wants people to know that they aren’t ‘alone’ in this chronic life… and with her on your side, you won’t be… She has been there for me selflessly, as well as everyone else in our group who needs her.  THANK YOU KATHY!!  We NEED to do coffee soon!!

– Speaking of friends… Tammy is one of the BEST!!  If you have not yet read her blog, I suggest you get yourself a cup of coffee, a box of tissues, and jump in.  Her Introduction barely scratches the surface of who this awe-inspiring gal truly is… Tammy and I hit it off from the first second I met her, and I am proud to call her my friend.  Imagine going into the hospital for a routine surgery as far as today’s standards are concerned, and spending MONTHS upon MONTHS in the hospital fighting for your life… this is only a part of Tammy’s history – and I am constantly in awe of her strength and courage.  I am forever a better person for having her in my life… and you will be too! Love you my soul sista!!

– And speaking of soul… that is pretty much the start of describing Wendy!  I had the pleasure of getting to know Wendy through the world-wide web soon after I started Graceful Agony… and I can only speak for myself, but it was like talking to someone I had known for years.  Wendy speaks her truth, she is a great friend, and she is giving with her time and her energy whenever you need her, no matter what she is going through.  Her post, Introductions Again, YIKES! couldn’t be more candid and real.  What she does, and WHO she is are connected beautifully in her post – and she acknowledges that she is a work in progress… BRAVO!  Aren’t we all!?  It is about the journey, and not the destination in this chronic life… and Wendy relays this brilliantly.

– Selena is someone I really admire, and I know you will too.  She is someone who forges ahead, has a quiet courage that has changed the way I perceive myself, and defines herself – not letting her Illnesses define her.  That is what you will read about in her carnival post, I am not my Chronic Illnesses… She has been through so much with her health, but continues to inspire others to live an authentic life, and to not have those struggles define the heart of who she is.  I know her to be a sweet and genuine person, always helping others, and LIVING… and sometimes that is the hardest thing to do when you deal with pain everyday…  She is someone who doesn’t know exactly the impact she has on others… but I am here to say that she has had a great impact on mine.

– Phylor has a great blog, and she is one of those ‘chronic’ warriors who is ALWAYS motivating and supporting others!  That is how I found her in the first place, and she has been a kind friend and motivation in my life.  Phylor has insight that is so truthful, and I know it will resonate with you as well.  In her Introduction she points out that we don’t generally shake someone’s hand and include our illness in the “hi my name is…” greeting.. Isn’t THAT the truth!  Phylor is many things, and just like all of us, we are a sum of our parts – but isn’t it GREAT that we can include our online community in that?  Each of the people who touch our lives become a piece of us in some way – and we are blessed because of that.

– Rosemary is one of the most beautiful people I have known – inside and out.    She makes me laugh, makes me cry, and makes me want to be a better person.  Her writing is both candid and beautiful, and she gives me courage to be really honest when I have bad days… That is something that at times is still hard for me to do – but after reading her blog, you will know what I mean – you CANNOT be anything BUT real in her presence.  Her post, The Skippy Diaries will leave you nodding your head… you will be able to see yourself in her post.  As she reflects on the things that used to be a part of her world – high heels, a love of reading, and living without restriction – you will be able to relate to that ‘day’ when all things changed…  She might not think she is ‘dealing’ with this so well, but it is quite the opposite… She grieves over the life that once ‘was’ and in doing she gives her readers the courage to do the same.

– I met CJ through Rosemary a short while ago, but already she is someone I hold dear to my heart.  Like Rosemary, CJ is admired for her honesty… And for someone who has been blogging for a short time, she sure fits in to this community, and I’d be lost without her!  The picture CJ paints of puzzle pieces becoming lost in her Introduction really hit me to the core… Having a completed puzzle until chronic illness and pain smashes the puzzle could not be more accurate or profound… It is so VERY true… How do ANY of us start putting those pieces of ourselves back together??  I think maybe if the community around you stop and start helping you find the pieces that have rolled under the table and across the floor – just maybe we can get that puzzle put back together.  CJ might not think ‘graceful’ is a word that describes her life – but I beg to differ… Grace, like beauty, is in the eyes of the beholder.

– Krismom has a wonderful blog that has been mainly about her life as a Mother, and a wonderful Mom she is!  You don’t need to look farther than her main page to know that her family is the center of her universe… That is why I have a TONNE of respect for her that she maintains such a close-knit family in spite of her chronic pain.  She has taken a big step on her site and introduced herself, Underneath it all.  I laughed out loud as I read about others judgments on being a stay-at-home Mom.  ‘You are so lucky’ people say, but if they only knew… I can SO completely relate to this in my life, she could be telling my story, and the story of SO many Chronic Pain Survivors who have small children.  You will be a few sentences in and you will realize that she is SO much more than what she appears on the outside, and I think that is something we ALL can relate to!  I am SO happy she is part of our circle!

– Now if you haven’t gotten up and stretched yet.. please do so now… LOL!  Are you enjoying the blog carnival so far?  Have you found personal experiences that resemble your own?  Have you found inspiration in the these amazing posts?  I am SURE you have… I cannot begin to tell you how in awe I am of all of you….  Take a break, go get yourself an iced tea… grab the heating pad for your tushie…  make sure to stretch a little… and keep reading!!

– Have you been following the Fibromama blog?  If you haven’t then you this is one to definitely include in your blogroll!  Her introduction starts with such honesty, and in a place where I think we all have been… in bed… hair a mess…  in agony…  She is right, you cannot get much more raw.. and how many of us have been there?  She is one awe-inspiring gal, from graduating Summa Cum Laude to raising her children and being a wonderful wife – she is so much more than the Fibromyalgia that she struggles with… She might not think she has the gold star for being the ‘best’ any longer, but I think some of you will very much disagree… This Fibromama balances so much in her life and her words motivate me to keep doing the same… She definitely gets a gold star from me!!

– Michelle is an amazing Mom of a teenaged son who struggles with Chronic Pain.  I have had the pleasure of getting to know her this past little while, and I invited her to take part in this blog carnival.  She doesn’t yet have a blog, but her voice is JUST as important as ours… and this is her introduction:

Hi my name is Michelle, I am 45 years old. I am my son ‘s only parent living. My son, Josh will be 16 years old in a couple of months. Since he was 9 years old, I watched my son slowly grow in to dark spot of his life and every now and then I will see a smile. Since age of 9 he had three spinal surgeries to help with a tethered spinal cord. Nothing helped but all symptoms were worse including pain that is severe causing him to have to be sick to his stomach. Needless to say 6 1/2 years later, one very tired , heart hurting mother found this wonderful group of people who understands. I may never know what and how I found it. I was sad and needed someone to understand and not leave me. Over the last few years I found out who were my true friends the hard way. I do not have many. I hope to have found a few with this group. Who knew that it takes people to have to be in pain to be my friend..That is a very sad truth. Another reason my heart hurts..As you can tell I do have chronic heart pain and it will probably not go away.

* Please feel free to leave comments for Michelle on my blog, or she can be found as part of our Graceful Agony Facebook group.

Infinite Daze is a new blog to me, and I’m excited that we have a new online friend in this community!  I must say the quote on the main page is priceless… “Life is never quite like the brochure” – ain’t THAT the truth!!  As the writer struggles to find a proper diagnosis, and is housebound 80% of the time, maintaining a blog is something to be proud of!  And I think I speak from our whole group when I say that many of us have been where you are, and you are definitely not alone.  We have a facebook group, and so many WONDERFUL friends here… We look forward to getting to know you!

– Laurie’s blog is beautiful!  She has an amazing way with words, and she is also someone I consider to be a dear friend.  Although we lost touch for a little while (life happens), I am so glad that she wanted to be a part of this carnival!  If she only knew how much she means to me… her words have kept me going on a few really rough days.  But enough of that ;).  Her post – Feel Good, Eat Cake made a big change in me… I found it to be really profound in my life, and I think that you may feel the same way.  A life of illness and pain isn’t fun.. we all know that – but with it comes anger, depression, frustration etc. and often a change of perception.  Things that we normally didn’t react to – we do now, and sometimes our reactions can actually hurt us… I think because we can potentially swing from one extreme to another.  How about moderation? Laurie asks… Whether it be taking vitamins, eating cake, or even just MOVING some days… Mental and Physical health stems from internal balance… something this gal has, and I love her for it!!

So with that, If I can steal the last words on Laurie’s blog post… We are all in this together… And I must say that I am SO happy that we are.  I love all of you, and I am so honored to call you my ‘family’.  It has been a JOY to host the first round of the Graceful Agony Blog Carnival, and I am SO excited to see where this journey may take us.

I will let you all know when the next round will be as soon as I can, and I hope you will want to take part in it again!! ALSO PLEASE NOTE THAT WE ARE PREPARING A GRACEFUL AGONY CARNIVAL BADGE THAT WILL BE POSTED SOON! I hope that you will post this badge with pride!!

*If I somehow have forgotten to include your post, or you didn’t get it in to me on time PLEASE let me know and I will include it here… Accept my sincerest apologies in advance… I haven’t been so well as of late, and I am doing the best I can 😉

Oh and I forgot about ME… I was going to write a post to include in this carnival, but as some of you know I have been going through a bit of a rough patch the past few weeks.  My pain has been through the roof and uncontrolled for a few weeks now and my Nanny is in the final stages of her life and will be heaven bound soon… I pray she finds peace, and my Pappy waiting for her with a cuppa tea and his arms wide open.  Losing someone is never easy, but it is a time that we can reflect on our own lives…  The footprint we leave in others lives and on this earth – and how fragile life can be along with how our strength and courage can leave a legacy for others… Instead of my ‘introduction’ today I am asking you all to reflect on YOUR footprint in this life…

My life is an open book, and you are welcome to read through the archives to learn a little more about me.  I have many posts that I could probably include here – but Graceful Agony isn’t only about me… It is about ALL of you, and that is who I choose to honor today.

Thank you for being a part of my life…. I hope this is only the beginning….

**If you are reading this anywhere other than www.gracefulagony.wordpress.com it is because this post has been stolen.  Please click on the link provided to return to the site of origin

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Nerve Pain

The NERVE!  Or Nerve Pain rather…. Holy hell, the past few days have been really rough….

Neuropathy hasn’t been a symptom of my illness that I have struggled with since becoming ‘ill’… It developed about a year in to this wild ride… but it has been getting worse this past year… it is now constant… every minute of every day… and I don’t ever seem to get a break from it.

It seems to be one of the hardest things for my Doctor to treat as well.. I mean I have never gotten to the point that any of my other symptoms are managed properly either, but the nerve pain has been one of the most insolent and stubborn types of pain… Just as soon as I get enough meds in my system to deal with it, my nerves seem to give my body the proverbial middle finger, and the storm starts again…   I find myself at the beginning all over again… What relentless and ignorant pain…. I hate it.

The most frustrating part is that unlike my myofascial, muscular, and ligament pain – my neuropathy doesn’t seem to have a trigger… or not one that I have been able to put my finger on anyway… it just is… active in my body all the time, waning and waxing as IT chooses… deciding when and where it is going to stop my life… without giving me any control.

The burning in my hands and feet have been excruciating these past few days… and my body has gone into hyper drive… Just a slight breeze through my kitchen window is enough to make me cringe and wince – my body reacts in a wave of the most painful “goosebumps” on either side of my body… my bowel twists and turns in response… and a fire is lit underneath my skin… An angry lightning storm bouncing around underneath my skin, but never losing strength and dying out… sigh… Ain’t this life grand?

And the thing that I want the most, a soft hug from my honey, or a bear hug from my little dude.. well, that is out of the question.. I can barely handle clothing touching my skin, let alone being embraced…  How discouraging when what normally feels good turns into something I have to recoil and runaway from…  These are the days that everything about my life sucks, only because I hurt too much to participate in it.  I think I might just go into my cave and hide again today…

I don’t have time for this today, there is a world out there that is calling my name.. I have a scooter to ride, errands to run, articles to write, people to love…. and yet I cannot seem to get off the couch again today…. sigh…

The NERVE of it all…

Some days seem quite unfair, no matter how far I have come, or how much work I have done to establish a positive and ‘graceful’ life… and today is one of those days… It seems that no matter how much I try to fight my pain, this nerve pain is something that knocks me down every time…

Sigh… it will be another quiet day today other than the deafening sound of thunderclaps when lightning strikes – underneath my skin.

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Confinement…. Imprisonment, restraint, limitation, restriction…  Those words don’t conjure up any warm and fuzzy feelings do they?

As a chronic pain survivor I very well know the feelings of confinement… confinement in your home, your bedroom, your mind, your body… Pain can be a confining and a lonely place to be at times.  Can’t it?

If it wasn’t bad enough that your pain has confined you to your bed, it can feel like it represses who you really are… limits your potential… hinders your personal relationships… puts a cramp into having ‘normalcy’ in your life…. CONFINEMENT – doesn’t that describe it all?

The reason I was thinking about that word today is because I am supposed to be on as much bed rest as I can handle this week.  For those who don’t know – I have been going through a bad spell the past 2 weeks… It is well beyond a flare, it is that gripping desperate pain that leaves you incapacitated… it is gross, and I hate it…. If I can stay at a level of pain in which I THINK I have control somehow I tend to be okay… when it surpasses that level and it leaves me feeling like I have NO control.. well… let’s just say I may be a bit of a control freak… and I am not so good at surrendering my power to my pain….

I saw my Doctor this week, and she was a little worried about how far and fast I fell in a short period of time.  She is always really good at being encouraging, and I hardly ever see her ‘sweat’, but the look of empathy on her face this week was something I couldn’t ignore.  She looked like she was going to cry…. and I don’t mind, it shows that she is very human, just like the rest of us.  We spoke about the stress I have been dealing with in my life, and how I’ve been dealing with it… we talked openly about how ‘shitty’ this pain can be, and how it is okay to STOP wearing the ‘happy face’ from time to time…. we talked about slowing down…. So she upped my meds a little, added a new one into the mix, and said she’d like for me to be laying down as much as possible for the next week because she doesn’t want me to ‘engage’ any of the muscles in my core, lower back, and hip area… I have a huge amount of swelling on top of a chain reaction of spasms.. and she wants me to try to break the wicked cycle… “Stay in bed for a whole week?”…. I laughed and asked her if she remembered that I have a 4-month-old puppy and an 8-year-old son!!  HA HA!!

Now, I will fully admit to not being a good patient 😉 .  I think I come by it honestly – I come from a LONG line of stubbornness (and I personally think that is a GOOD quality to have!).  Yesterday I sat all day, and couldn’t figure out why I was SOOOO sore by dinner time…. Do you know how many muscles you engage when you sit?!?  I sure found that out the hard way!!   I am so sore I cannot even sit?!?  That sounds incredibly lame…..

My honey ALWAYS puts me first… and I LOVE him for it.  He made dinner last night, and kicked me out of the kitchen when I tried to do the dishes…. This morning he wouldn’t let me get out of bed – he took care of everything, ran the puppy, put her in her jail pen, covered her up so she would sleep, and headed to work.  I forced myself to lay in bed until 10, but by that time I think I could have DIED from boredom!  I got up, made a coffee, made a bed for myself on the couch, and here I am… thinking about how many loads of laundry I could do today, and how I’d love to walk down to the coffee shop, grab myself a decaf/skinny/mocha latte/ with whip and go peruse in the yarn store for a bit before taking the long way to go pick up my little dude from school on this sunny day…. The java and yarn might have to wait for another day, but my little dude needs to come home this afternoon 😉

The thing is, as I thought about the word “confinement” and all that it means, it occurred to me that it is totally okay to feel that way, as long as you have something that can BALANCE out that feeling…. Akin to a teeter-totter in the playground, if you don’t have 2 similar sized people sitting on it the only direction you are going to go is DOWN… If only one child sat on the teeter-totter they would be stuck on the ground forever….  How much fun is that?

So how do you find the balance?  Ultimately the TOP is the most fun place to be, but the middle is okay too 😉

Just because we are physically confined at times, that doesn’t mean that we have to be mentally or emotionally hog-tied….  There are ways that we can find freedom no matter where we are, or what shape our body is in.  It just requires having an open heart….

  • Call a good friend and share some laughs
  • Get completely LOST in a good book
  • Have you ever heard of Skype?  You can meet for a cyber-coffee-date with ANYONE around the world using Skype!  Check it out!!
  • Start a journal and begin to release your inner-most feelings… there is SO much freedom in that!!
  • If the journal works for you, why don’t you start your very OWN blog?  I can’t TELL you how much my life has changed since I started Graceful Agony…
  • Are you on Facebook?  Or maybe the better question is who ISN’T on Facebook?!?!?  Reach out and say hello to someone you haven’t spoken to for a while…. reach out to 10 people… I bet a few of those people will return the favor and reach out to YOU…
  • Do you like to knit, crochet, embroider, scrapbook etc…. What is your hobby?  Those things can bring peace and fulfilment if you’d allow them to!  Make a scarf for someone who least expects a gift from you… Get out your scrapbooking supplies and make a home-made card to send to someone who is needing a lift… It will end up being a gift for the BOTH of you.
  • Put on your favorite music, crank it up, and get lost in the harmonies and the lyrics… Day-dreaming isn’t necessarily a bad thing to do…

I could go on and on… but the point I am trying to make is that PAIN doesn’t have to be a life-sentence in solitary confinement…  Although many times it doesn’t seem like you have a choice in the matter, you often do.  It doesn’t “ALL OR NOTHING”, it can be a little at a time….

I think we all tend to isolate ourselves when we are in a lot of pain, and there is a reason for that.  I think it very much is a defense mechanism, but unfortunately that can end up blowing up in our faces if we let it and do more damage than good… ALONE and LONELY are two different creatures…

If you are ‘confined’ today, ask yourself these questions:

a) What is confining me?

b) What is it that I am NOT doing that I am still capable of?

c) Why am I NOT doing it?

The answers might surprise you…. and you may find that you have room for a little freedom today 🙂

What are the things that YOU can do right in the next few days that would make you feel less “confined”?

Please leave your ideas in the comments section of this post!!  They just might be able to help someone else!!!

Wishing you peace, freedom, and an open heart today!

XOXO

**If you are reading this anywhere other than www.gracefulagony.wordpress.com it is because this post has been stolen.  Please click on the link provided to return to the site of origin

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Some of the readers here that are also a part of the Graceful Agony Facebook Group saw my status yesterday… and are wondering I am so excited about!! 😉  Well… I am about to tell you all………

I’ve got some BIG news to share…..

Dominique, my dear chronic friend over at 4 Walls and a View and I have decided to collaborate on starting and running a brand new organization JUST FOR YOU!!! And we NEED YOUR SUPPORT!!

This Organization will be called INVISIBLE AWARENESS – and our hope is to raise FMS/CFIDS/ME awareness one person and one story at a time.  (You will be able to find us at http://www.invisibleawareness.com once we are up and running….)  One of the most POWERFUL tools we have is our voices, and by the size of the online chronic community it is plain to see that so many of us are determined to share out testimonies and find purpose in our illnesses…. THAT is what we want to help YOU with… Do you want to hear more?

This is the ‘framework’ of this new organization….

VISION:

  • To raise awareness about the devastating affects of living with CFIDS/ME/FMS through the sharing of our collective testimonies (stories).

OBJECTIVES:

  • First, to reach as wide an audience as possible with real life stories every month.
  • Second, giving each individual suffering with CFIDS/ME/FMS the opporunity to take part in raising awareness, thus providing purpose.
  • Third, to create an ongoing dialogue throughout the year that will culminate on May 12th each year – the National CFIDS/ME/FMS Awareness Day.
  • Fourth, to provide a means for those individuals with CFIDS/ME/FMS to connect with other CFIDS/ME/FMS suffers in order to build a support network.
  • Fifth, providing each and every individual suffering with CFIDS/ME/FMS a vehicle to have their voices and their stories heard.
  • Sixth, creating a powerful voice that will be heard above the din of politics, greed, and unbelievers.

REQUIREMENTS:

  • 1.  An online organization with free membership.
  • 2.  Members will get a badge to put on their blogs indicating they are part of this organization/group.*If  a member does not have a blog, that will not prevent them from becoming a member.
  • 3.  Each member – when they are able – will be asked to post an article/post on their blogs on the 12th of each month, if they have their own blog or website.
  • 4.  Each member – when they are able – will be asked to periodically write a post/article of their personal story.  Those without blogs can email them to Dominique or myself.  Email will be provided at that time.
  • 5.  Each member  – if they are able – will be asked to have a twitter account so they can tweet the monthly ’story’ on the 12th of the month.  I have agreed to be the Twitter Assistant for those who need help.  Dominique and I can help most people get a Twitter account.  You do not need to have a blog.  You will just have to come up with a name and password.   Once the account is set up, you will be able to click on the tweet button on each blog that is carrying the story.  It will really be that simple.
  • 6.  Each member – who so desires – will be added to the Invisible Awareness blog roll.

HOW IT WILL WORK:

Every month a different member will submit their personal story to Admin (Dominique) or the Editor (Myself) via email.  After editing, the article will be forwarded to all members to post on their personal blogs on the 12th of the month.  Every month will showcase a different individual and story.  Twitter, Facebook, Bloggers Unite and such will be used to spread the current “testimony”.  To clarify, all CFIDS/ME/FMS bloggers will have the same post on the 12th of each month.  This way, this one story will be read by a wider audience because we will all be working in concert to make it go viral.

Note:  We will need all those who participate  to provide their emails so we can send out the monthly story.

THIS is only the starting point…. We have a BIGGER vision – and are SO excited to see what this community can potentially grow into…  The sky is the limit!!!  Can you imagine the possibilities if we all join in and have ONE STRONG VOICE together?  Whether you are interested in more exposure for your blog, or you are a dreamer (like me) and can see the potential this Organization and website can have….

WE NEED YOUR SUPPORT!!!!

WHAT ARE YOUR THOUGHTS???  PLEASE SHARE THEM… WE REALLY WANT ALL THE FEEDBACK WE CAN GET!!!

If you like this idea, WE NEED YOU to do two things…. (pretty pretty please!!)

1.  We need you to tweet this, Facebook this, Stumble this, whatever you have access to and are signed up to. PLEASE SPREAD THE WORD!!

2.  We also need you to send this to every blogger who has CFIDS, ME, or FMS so they are aware of what we are doing!

Both Dominique and I are so very excited, and cannot WAIT to get started.  You are ALL so important to us, and your story is important to us as well…  We are inspired by your stories of determination, courage, hope, and strength on a daily basis – and we want to be able help YOU spread the word…. WE WILL BE HEARD…. WE WILL UNITE… and WE CAN PROVE THAT THERE IS STRENGTH IN NUMBERS….

If you don’t know Dominique, you can find her by clicking this link. Stop by her blog and say HI!  If you have any questions, concerns, or would just like to voice your support, please contact either of us.  ALL COMMENTS WELCOME!

And on a personal note, I just wanted to take a minute to thank ALL of you for your ongoing support, and encouragement.  I cannot tell you how much it means to me, and how it has truly changed my life.  You have given me my ‘wings’, helped me find the place where I belong in this world of severe chronic pain.  THANK YOU EVERYONE….  I wouldn’t have a voice if there wasn’t anyone listening on the other end…. I love all of you!

Wishing you peace and love this weekend.

**If you are reading this anywhere other than www.gracefulagony.wordpress.com it is because this post has been stolen.  Please click on the link provided to return to the site of origin

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