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Posts Tagged ‘frustration’

The questions I hate most these days are ‘What are you doing? ‘, ‘So what have you been doing lately?’, and my all time fave, ‘So what is it that YOU do?’ (that one is usually asked by people I first meet in relation to what career path I’ve chosen)

What DID, DO, or WILL I?

Absolutely nothing, thanks for asking!!!

Well of course that’s not what I say…. I mean, not out loud anyhow. I usually say ‘not much’ or mumble how being a Mom keeps me busy (If they only knew my son is in Grade 5, makes his own lunch every day and is very independent outside of school.), or I try to just change the subject. ‘What are YOU doing?’ seems to be a good enough reply. People like talking about themselves generally, and are only too happy to take the focus off of me and onto themselves.

Ring ring…. Ring ring…. ‘Hey! How are you? Whatcha doing?’ is how many people start a phone conversation….

And by text, it’s know different. ‘hey? Are you busy? Can you chat?’

Aaaaahhhhhhhhhhhhhhh!!!!!!!!!

Now I don’t think I’m THAT cynical, but the more I’m asked that, the less I want to talk to anyone these days.

What seems like an easy and benign question to ask is one of the most painful ones for me to answer. It is extremely frustrating at times. And it is a daily reminder to me of WHAT I AM NOT DOING, and WHAT I CANNOT DO.

I am not driving a car.

I am not going to school.

I am not working, nor am I working towards a career….

Vacuuming? Nope.

Laundry? Not today.

Out with a girlfriend? There aren’t many of those left.

I can’t even chat about a funny conversation I had the other day. Chances are, the conversation did not take place!!

Unless you mean the conversation that I had with my body. I have lots of those. I just don’t like sharing them with too many people.

I sit for 6 hours every day. By myself. Sure, I knit, make jewelry, try to write…. I play with my sweet puppy… I eat lunch (usually). I try and make time go by faster…. And I take a walk in the afternoon when my boy gets out of school.

But there’s only so many times I can stand having conversation about WHAT I’m knitting and whether it rained or not on the way to school!!

This life isn’t just about the pain we feel, the medication we take, or the appointments we have to go to. It doesn’t just effect our HEALTH. It effects everything.

The next time you bitch about your job, or do the laundry…. Remember how privileged you are to be able to do those things.

The next time you want to share an absolutely fascinating conversation you had, or movie you saw…… Remember how lucky you are to share those things.

The next time you stress over your paycheque being too small.. Remember that you HAVE a paycheque, and celebrate the fact that you can earn one at all……

And if you are like me, know that you aren’t alone…. And the next time someone asks you what you’ve been up to ‘these days’, tell them you’ve been working hard. You’ve been climbing insurmountable obstacles and working hard to be the hero in your own life.

XOXOXO

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I must say, it was bitter-sweet to say goodbye to 2010….

Some incredible things happened in the past year, but I was knocked down more than a few times as well, and for that I was relieved to end the year and start anew…

It was a perfect dichotomy I guess… You can’t have one without the other, or you can’t appreciate the good without the bad… or whatever cliché is used to make one feel better….

I had the intention of writing about all the wonderful things that transpired over the past year, and a wonderfully cheerful look at the year ahead… but since we rang in the New Year, I can honestly say I haven’t had the head space to be ‘cheerful’… I will be completely frank… So far 2011 has been rough… really rough…  It has sucked… and I know I am not the only one who is feeling this way….

I was having a hard time managing my health before we went on our holiday the beginning of December… it was SUCH a great trip, and a VERY needed break… but it has been a solid month of pain and frustration since we have been back.

Who am I kidding?  It has been 10 months of solid pain without much reprieve, and I am REALLY feeling beat up and worn down.

When I first was diagnosed with multiple illnesses that lead to a life of severe chronic pain, I felt like something was being overlooked.. Yes, I have a very severe case of Fibromyalgia, with secondary neuropathy… Yes, I have Endometriosis with adhesions that haven’t been removed… Yes, I have other varied illnesses, disorders, or defects that lead to the intense pain I feel everyday… but from the VERY beginning, I have asked to have other things addressed… namely, my back and hips…

It took 26 months (18 of which I was misdiagnosed, and another 10 months on a waiting list) to have a lower back CT scan and x-rays done… and I was so hopeful that they would find a reason for my crippling pain which has caused me to walk with a cane at times the past 4 years… it showed NOTHING… and I was devastated…

Through the last 3 years of intense treatment and therapy, I have asked over and over for my back issues to be addressed more aggressively… I have been in physio many times, and from that and the support I have had by a  wonderful Chiropractor, I knew that I had developed some MAJOR ligament problems, but I have never been given a solution, or at least a proper way of dealing with it….

“Jolene, you have Fibromyalgia, which makes you hyper sensitive to pain that might not  necessarily be have a valid SOURCE.” I have been told many times…

BUT THERE IS SOMETHING ELSE GOING ON!!!!!

If I as much as isolate and tighten my glutes, I can completely dislocate my SI joints, THAT is how unstable my lower back is… I cannot do Kegal Exercises for my pain because that is enough to dislocate my SI joints as well…THAT is not Fibromyalgia…

When I can look into a mirror, and SEE a big sack of swelling over my tail bone… there is a VERY real source… you do NOT get inflammation just because….THAT is NOT Fibromyalgia…

When I put my arms over my head and lean over to do a gentle side stretch my hip rolls and POPS out of its socket… THAT is NOT Fibromyalgia….

When I can’t put any weight on my left leg for days, and all I can do is either tuck myself into the fetal position, or rock back and forth to distract myself from the 10-inch knife that is going right through my spine, there is something WRONG….

When my back becomes so tight that I have no choice but to over-compensate and end up pulling all the muscles in my groin and butt… that is NOT just being sensitive to pain.. there is something STRUCTURALLY WRONG WITH ME!!!

If I go a month without this intense back pain I am feeling like the luckiest woman on earth….  Sometimes I go TWO months without it… but when I feel the crack or pop I know in that instant I am screwed… and it takes days and sometimes weeks to recover… it is the kind of pain that isn’t touched by ANY medication, and the only ‘cure’ is to get it to POP and CRACK back into place… THAT IS NOT FIBROMYALGIA….

As some of you know my Dad had spinal surgery before Christmas, and he has been in a great deal of pain since… It has been a hard recovery for him, and he still has a way to go… If we can somehow make it easier on him, we will….

As a way for him to stay connected with his online illness community, as well as for him to stay comfortable, and avoid frustration, I talked him into getting a laptop.  I would be lost without mine, AND his computer had a lot of issues, and I believed he had to wipe out his hard drive anyhow…  It wasn’t worth putting in the time, money or frustration into it anymore….

This past Tuesday he had asked for me and my honey to come over and help him disassemble his PC, and drive him to the store so he could deal with transferring data to his new laptop.. And we were more than happy to help. I made the mistake of leaning over to pick up his PC tower and both heard and felt the CRACK…

I knew I was in trouble…

We barely made it home….

And I have been stuck on the couch, writhing in pain ever since…..

Ice, heat, meds, stretching, massage, baths, back brace… nothing is helping….

What a fantastic way to start the New Year!!!

So yes, it has been a rough start…. my nerves are frazzled, and they are in hyperdrive… every minute or so I get a wave of PAINFUL “Goosebumps” that make me want to crawl out of my skin…. My stomach is churning… and my get up and go, got up and left….

As my honey gently massaged my back last night I let out some hot frustrated tears, while he silently supported me and hoped to somehow make it better… HE can’t see me like this… My Mom and Dad can’t either… it creates this helpless feeling in everyone, including me.. I don’t know how to make it better…

THIS IS NOT FIBROMYALGIA!!!!!!

One thing for sure… I am getting down to the bottom of this.. I am not being placated anymore… I will not let them prescribe me yet another medication in the hopes that my body will become LESS sensitive to pain… THAT is not the issue, and I know it.  I just need to be heard… I have enough pain to deal with every day, I don’t need this…

Angry?  Maybe…

Frustrated?  Absolutely…

Have I had it?  In a heartbeat…

Will I keep on keeping on?  There isn’t a doubt…

I am not letting the system fail me again… not this time…  I am not letting them convince me I am just depressed, or that I need to exercise, or that somehow Vitamin D will make me feel better…

It is time to get down to the bottom of this…

Thanks for listening to me rant my friends… That wonderfully hopeful post for 2011 is coming… just not today….

 

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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!!!

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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….

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English: A selection of knitting needles Dansk...

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I have been a bad blogger lately… Sorry that I have been MIA… Life has just been a little crazy as of late.  I will fill you in…

Losing my Nanny took the wind out of my writing sails so to speak.  The internment and graveside service was the beginning of this week, and from what I hear it went well.  I wasn’t able to go. 😦  Another thing in my life that has ended up being a difficult decision to make because of my pain… grrr….

The service was 6 hours away from where I live.  Because of my honey’s work schedule and my little dude starting school this week, had I gone I would have had to endure 14 hours of car travel in a period of 2 1/2 days…. and for as hard as I tried to convince myself that that would be okay, I had voices of reason (my family) reminding me  that I would most likely suffer for a few weeks as a result…. Soooooooo…..  After losing some sleep, feeling guilty, and changing my mind a half-dozen times I decided it wasn’t in the best interest of my family to go.  Blah… Instead I said my own goodbyes… and I am now knitting a beautiful silk scarf on my Nanny’s old knitting needles.  I will think of her every time I pick up my needles…

Life has been CRAZY the past few weeks, trying to cram in as much ‘summer’ as possible and preparing my little dude to go back to school!  GRADE 4 ALREADY!  Where has the time gone?  I clearly remember his first day of kindergarten like it was yesterday… and before I know it he is going to be in Junior High.. 😦  Can someone please slow time down a little?

After 2 1/2 hours of sleep, and a hectic morning – shirt and tie on, hair products in and completely DOUSED in my honey’s cologne 😉 my little dude headed off yesterday to rejoin the masses… Sigh… To tell you the truth, I am a little lost now…

He had an AMAZING first day of school, and I couldn’t have been any happier to see him RUN out of school yesterday with a HUGE smile on his face!  He LOVES his new teacher… LOVES his new friends, and he bounded out of bed this morning at 6:55am to do it all over again this morning.  Life is good in the eyes of an 8-year-old….

And me… well I have been struggling a bit as of late, hence the lack of blogging.. my apologies again… the nerve pain that I have been experiencing this past year keeps getting worse and worse, and I cannot get it under control… and it is driving me crazy!!!  With all the layers of pain I experience every day, the nerve pain is just the icing on the proverbial cake.. I have had enough of this crap, and I get so frustrated that there doesn’t seem to be a solution.

The last appointment I had with my medical ‘team’ didn’t go so well… and I have been angry ever since…. I know it is close to impossible to relate to this journey through pain if you haven’t gone through it yourself. I don’t expect miracles to be performed inside the 4 walls of my Doctor’s office, nor do I expect that any one pill… or a combination of 20 medications will be sufficient enough to take away my pain, but I still have hope that the quality of life for chronic pain patients can and WILL improve… but there are moments in time that I start to lose hope.  Call me pragmatic, or a realist… I try to stay positive, but sometimes it is impossible to keep a smile on my face… I left my Doctor’s office in tears, and I have been trying to climb… white-knuckled… out of the hole ever since.  This is a small glimpse into how my appointment went…..

Me:  I have been taking all of my meds as prescribed guys, but they haven’t been working as well as they should be.. I am STILL taking over-the-counter meds every 4 hours on top of everything else… is there anyway we can look at the dose of certain meds?

Pharm:  Absolutely, what are you struggling with?

Me:  The nerve pain we have been talking about is ten times as bad as it was, and I am getting more symptoms than I was.  there are days that I literally cannot put my feet on the floor because my feet are excruciatingly painful.  I am getting ‘electric shock’ type feelings throughout my whole body, without warning.  And I don’t know why but I keep getting horribly painful ‘goosebumps’ that WHOOSH through my entire body, and I can’t stop it from happening.

Pharm:  Those are all ‘normal’ symptoms of nerve pain, but it is definitely a concern that you aren’t just feeling the burning sensation anymore. Your central nervous system is just hyper-reacting, your sensory system is on overload.  We will ‘up’ the medication you have been taking for nerve pain, and see if it improves… what else do you need help with?

Me:  I am BEYOND tight… My muscles have been hyper-tonic as of late, and I have been taking over-the-counter muscle relaxants every 4 hours  without them I can’t function.  I am concerned with all the other crap that is in them though… I know it is hard on your liver to process all that acetaminophen.  Is there any way that we can think about adding Flexeril into my program, and that way I am taking a more efficient relaxant, and none of the other stuff?

Pharm:  I think that is a good idea.  Over-the-counter meds are not made to be used ‘full-time’, and can cause problems in the long run.  I think it is a reasonable request to add Flexeril, even just once a day or once every 2 days.  It’ll help you manage through this ‘never-ending’ flare.. let me go grab your doctor and we will talk about it. (For those who don’t know, I see a pharmacist who does consultations with my Doctor’s patients.  They work together to help me manage.  Since I am on so many different meds it is CRUCIAL to have a specialist figure out my drug routine)

(Pharm leaves and is gone for 10 mins.. and comes back with my Doctor in tow)

Doc:  So you are still not doing very well Jolene?

Me:  Not really.. I am still struggling…

Doc:  I don’t like you taking all the over-the-counter meds.  You must be really constipated as well?

Me:  I am, laxatives are not even working… but I feel like I have no other option, the pain has been so bad Doctor… (she cuts me off)

Doc:  Well I don’t like the idea of you taking a muscle relaxant period… Have you tried stretching instead?

Me: Sputter.. cough… what?  Um.. (flustered)… I am BEYOND a little tight Doctor…

Doc:  Well taking more pills isn’t always the answer – How about massage?

Me:  Um.. Hello??!!??  I have been doing ALL of that for 5 years now.. stretching, massage, chiropractor, yoga, meditation… doing the hokey pokey as I turn myself around… WTH?

Doc:  Well at this time I am not comfortable prescribing a muscle relaxant, and I want you off the OTC stuff… Try heat and ice, and we will see you in October.. (she leaves the room)

And then I lost my mind, and my Pharm wanted to climb under his desk and hide I am sure….  I yelled (which if you knew me is NOT normal for me).  I apologized after as it isn’t his problem, He is the one who suggested I take Flexeril to begin with, and I know my pharmacist is on my side… But the Doc has the final say… and she said NO.

Number 1)  Saying that I am STIFF is like saying a monsoon is just a sprinkling of rain…  There are days that I cannot WALK because the muscles in my legs are so tight it prevents my joints from moving…. I can’t turn my neck let alone touch my toes… and if YOGA was the answer I wouldn’t be here right now… I’d be working full-time, going to school, living my life, and wouldn’t have ‘time’ to blog…

Number 2)  If the plethora of pills I take everyday don’t help my pain… do you think an ice-pack is going to help???

Number 3)  Those OTC muscle relaxants I take make me feel sick, take away my appetite, make me groggy, make me constipated, and are killing my liver… I don’t take them for fun… I don’t take them because I feel like I don’t already swallow enough pills everyday… I take them because I am going out of my mind with pain… so obviously the ‘plan’ I am currently on is not working… and that’s not good enough…

Phhttt…. Have I tried massage?  WHERE HAVE YOU BEEN?  Do you know how many THOUSANDS OF DOLLARS I HAVE SPENT IN THE LAST 5 YEARS ON NON-PHARMACEUTICAL THERAPY?!?!?  My son may not have a college-fund, but I however have been to Natur0paths, Chiropractors, Massage therapists, Cranio-Sacral Specialists, Herbologists, Acupuncturists… and a few ‘snake-oil salesmen’ – and I have outlived EVERY ONE OF THEM… they all starts out really HOPEFUL and end up telling me to go somewhere else after I have spent the equivalency of a down-payment on a house…

So NO.. I think we are past the point now that a heating pad and downward-facing dog pose is going to help… THE END.

I have been aggressively fighting this past year, and I feel like I am no further ahead…. this time last year I was on 2 meds… I am now on triple that amount… and my pain is no better…. and I am sorry but it is a HUGE slap in the face to be told to go for a massage and stretch… (slaps palm of hand on forehead)… don’t ya think I have been DOING THAT?!?!?!?

I have been licking my wounds ever since that appointment – lying low and trying to make sense of it all yet again….

So that is my life as of late…

How are all of you doing??

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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….

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When pain takes away your breath… when you are white-knuckled, and are living second to second as the clock ticks……….. ticks……….. ticks………… so S-L-O-W-L-Y you can barely stand it…..

When you want nothing more than to start tearing at your flesh… ripping off your skin… trying to find what is hurting underneath, so you can find the source and fix it… what do you do?

When no matter what position you get it in … in the bath, laying down… on your hands and knees on the floor… You cannot make the pain subside…. what do you do?

When the desperation starts to slowly creep in to your thinking, and starts to take over…. when you cry out… LOUDLY… PLEASE GOD HELP ME…. what do you do?

These moments are the hardest… and although I know ‘this too shall pass’.. I can’t find relief… I can’t find relief… I CANNOT FIND ANY RELIEF… and it is hard to breathe… and I don’t know what else to do….

So What do YOU do?

I’m holding on… and HATING all of this…. I dropped my head and tried to remember my life before pain… and I cannot… I honestly can’t.  To tell you the truth I think I have blocked it out, because the memory would be far too painful…. It made me cry….. it still makes me cry…

Please know, if you are feeling this way, you are not alone.. I am feeling this way too tonight… breathe in.. breathe out… take my hand… we will get through this together… I promise.

I don’t know how…

I don’t know when…

but I know we will….

XOXOXOXO

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