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Posts Tagged ‘Illness’

View of Coronado and San Diego from the air.

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It has been a long few months getting ready for this holiday.  As most of us “Chronics” know, an amazing amount of preparation goes in to getting through our daily lives, let alone special events such as vacations… It has been an exhausting few weeks, and I am ready to collapse, but in a few short hours I will be leaving for the airport.. I.. Must.. Keep.. Going..

Suitcases Packed – check

Passports and tickets ready – check

Carry On loaded with meds, heat wraps, reading material – check

All I need is some sleep…

But I have a feeling that might be hard to come by tonight.

It is 10pm, and my alarm is set for 2am…

and I am awake.. and SORE… and buzzing…

My little dude is still awake as well, and my honey is still cleaning – I pooped out about an hour ago, and I have no more energy.. I feel bad that the last odds and ends fall on to his shoulders, but I just can’t do anymore… I haven’t stopped since my feet hit the floor at 6:45am this morning.. How blessed I am to have such a wonderful and understanding man in my life!!

So I am off to bed.. to try to get something that resembles sleep… tomorrow is going to be a LONG day…

I can’t wait to get to San Diego, and get this holiday started!  Once the luggage is checked in, and I am sitting at the gate, I will feel relieved.. until then, I am a bit of a stress case!!

xoxoxoxo

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Ahh I remember the good old days… The days that existed before pain.  It isn’t easy for me to go back in my mind and think of those days very long.  It hurts.  A lot.  My body might not have any visceral memory of what it felt like to live without pain, but my mind does if I let it.

In those days the only limitations I had were cash (or lack thereof) in my pocket and a mandatory 4 or 5 hours of sleep per night, other than that the world was in the palm of my hands, or at least that is how I remember it anyhow…

I spent HOURS on the phone making plans for EVERY night of the week.  If I wasn’t out dancing, I was out for coffee with a girlfriend.  If I wasn’t out with a girlfriend I was enjoying the peaceful evenings browsing through the mall and fantasy shopping…. I planned vacations… I had friends… I had a social life… and then that all changed.

First I became a Mom, and settled down – but I changed my life because I wanted to…

Illness changed my life without asking my permission.

The things that I once loved to do hurt too much.  I couldn’t do them anymore.

No more dancing, no long trips to the mall, and coffee dates ALONE replaced those with friends because I never knew until the last-minute if I could go to a coffee shop or not… so when I can I just go myself.

I was thinking today about how I have changed my comfort level in the past 5 years… each time something gets taken away by my pain, I grieve over the loss – but I have no choice BUT to move forward somehow.  I have to move forward.  I don’t think I necessarily accept any of it, I think it is quite the opposite actually, but turning off somehow and becoming complacent is sometimes the only defense mechanism I’ve got.

So I numb myself out, and try to convince myself that I am fine just the way I am….

That I will never need anymore than what I have….

That my existence is completely fulfilling….

Until I realize that my comfort level is so teeny-tiny now, I don’t have room for anything outside of this little box.

I get up and spend the first hour of the day with my son and send him off to school, I take my meds, I sit on the couch and blog, email, read… and then I pour another coffee and knit for a while… and then I take more meds…. and then my honey leaves for work and I am ALL alone except for my pets…. and then I pour myself another coffee…. and then I get on the computer for a while…. then I go pick up my son, come home, and knit for a while before dinner… and then I take my meds…and well, you can just keep repeating that until bedtime save for a few moments that keep me sane.

My honey loves me immensely, and he gets me out of the house on his days off.

My little dude loves me too, and he likes to sit at the coffee shop with a book and a cookie while I get my java and a little background noise…

But it is all the same really.

When did I lose so much of myself?  Where did the fun-loving effervescent girl go?

She is hiding in the teeny-tiny box she put herself in…..

Now others may not see me this way at all, but you would have to ask them for I have no perspective than my own.  But when days turn into weeks, and week turn into months and the pain doesn’t let up – I brace myself against the world, I brace myself against EVERYTHING to protect myself from more pain.

Social anxiety replaces confidence….

And the teeny-tiny box gets even smaller.

But knowing the problem is half the battle as they say.

Maybe I need to change things a little for MYSELF….

 

Maybe it is time I get a little uncomfortable……

Because I’m telling you… Comfort sucks sometimes.

I miss me some days.

 

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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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This week (September 5th – 11th) is National Suicide Prevention Week.

The World Suicide Prevention Day is this coming Friday, September 10th.

This is a cause very close to my heart for many reasons.  In the Chronic Pain world it is common knowledge that more often than not  depressions goes hand in hand with chronic pain. Statistics would lead us to believe that those who suffer from chronic pain and/or chronic illness have a higher risk of attempting and completing one’s desire to end their life.  It is sad…. and I believe it is needless.  If those who suffer chronically were to be treated properly and with respect – both medically and personally, I believe that this risk would lessen.

WASHINGTON (Oct. 27, 2009) A photo illustratio...

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When I first became ill and my life fell to pieces, I suffered from severe depression.  It wasn’t the first time in my life that I had to fight the demons in my head – but it was the most all-encompassing and debilitating depression I have ever experienced.  I completely lost myself… literally.  I became a stranger to myself, and couldn’t find any resemblance of who I used to be.  Every inch of my body became foreign to me… I doubted every reaction, every thought… And with a life-long diagnosis I lost all hope of ever finding myself again.

I can admit now that I was far more depressed than I ever let on… I was more depressed than I could admit to myself.  The only way I could describe it is that it felt quite a bit similar to me as when my brother died.  I don’t know if anyone one could understand that at the time, I don’t know if I truly understood it either.  Looking back I now know that I was grieving – grieving over the loss of the ‘old’ me combined with an overwhelming anger that I shouldn’t have to.  I didn’t want to let go of the ‘healthy’ me.  I was scared to let go.

Although a lot of that time is now a blur to me – a foggy whirlwind…. a darkness that numbed my senses…. I do remember many internal conversations with myself that I truly thought my family would be better off without me.  I remember feeling like the perpetrator, my family being the victim of my pain.  I remember trying to convince myself that I could never be the mother I wanted to be… I felt all alone… I felt misunderstood… I felt overwhelmed… and I didn’t know if I could face life anymore… and that is when the thoughts of suicide came creeping in….

The thought of this now is so disturbing to me, it fills me with that feeling all over again.  It makes me want to cry for the woman I used to be.  Nobody should ever have to feel that way.  Nobody should ever feel like suicide is a valid option or good solution to any problem.  Our lives are worth so much more than that….

Our lives are worth so much more than we ever realize…..

YOUR life is worth more than YOU will ever realize….

72.365 purpose for the pain & world suicide pr...
I am one of the lucky ones who had family that were constantly reaching out to help me, listen to me, and to love me unconditionally.  When I couldn’t stand on my own two feet I had my parents to lift me up.  I wasn’t judged for who I was or how I felt and I knew that, so it made it much easier to be truthful with how I was feeling.  Between that and the guidance of some earthly angels who crossed my path at the time I was able to admit that I needed help.  I spoke to my Doctor at the time, and got some help.
I won’t say it was as easy as just making the decision to get help – because it wasn’t.  But that was the hardest part for me – admitting to myself and to others than I just couldn’t carry this weight on my own any longer.  I had always found pride conquering life on my own, but as ‘they’ say – No man is an island… me included.
I spent close to two years on an anti-depressant medication while working closely with a Psychologist who specializes in Chronic Pain.  Slowly I began to let go of the fear that was controlling my life at the time.  I let myself grieve over the ‘body’ I once had, and learned to separate THAT from the ME I am inside… The real ME.  Through the process I not only learned to accept who I am – I learned to love myself, something I don’t think I ever did before.
There is a National Movement advertised on Facebook today that I wanted to share.  It is asking that you use your forearm to send a message.  the part of your body that is associated with ‘a way out’ in terms of suicide can become a canvas today to spread a message of hope…. simply…. LOVE.
It symbolizes not only the compassion you have for others, but the compassion we all need to have for ourselves.  LOVE – a simple 4-letter word that has a definition greater than the sum of its parts.
It symbolizes hope….
Hope that tomorrow won’t be as dark as today,
Hope that the pain you feel, both physically and emotionally has a cure,
Hope that one day guns, razor blades, ropes and pills will be used for
what they were intended, and not instruments to bring the end to some,
and to others a lifetime of excruciating pain.

Today please take the time to spread a little LOVE in your life.  No matter how you do it, it is so much more powerful that you think.

And if you are someone who is suffering from depression, or you know someone who is –

Please know that Depression is a very valid and debilitating illness, an INVISIBLE ILLNESS…

And like Fibromyalgia, Chronic Fatigue Syndrome, Diabetes, or Cancer…

The first step is getting a proper diagnosis.

The second step…. is treatment.

Please know that you are not alone.

Pick up the phone, call a suicide hotline, your doctor, or a friend or family member you love and trust and ask for help.

Believe me, it will be the best decision you ever make for yourself.

There is hope.  I know there is.

I am still here.  And I am so thankful for second chances.

Millions of people suffer from Chronic Pain – some is housed in our bodies, but some is housed in our hearts.

And Suicide is NOT treatment for this pain,

LIFE is.

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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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