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Posts Tagged ‘migraine’

It has been a long time dear friends….

I know it has been a few months since you have seen me around these parts… and trust me… I missed all of you more than I can say… I want to be honest with all of you as to where I have been, and what I have been up to.  It isn’t easy for me to do that, as I have BIG expectations of myself… I took a bit of a fall, and it isn’t something I am all too proud of, but it is the truth… I am human… I fall some times… but at least I know, from experience, that I always find a way to pick myself back up, and brush myself off…. which is what I have done, and I am ready to move forward…

In December, if you will recall, my family got to go on an amazing trip!!  We had 8 days of ‘family time’ on a cruise ship in the middle of the ocean… it was a long time in the planning, and the rest couldn’t have come at a better time.  I was really feeling burned out from all of the treatment, meds, pain, treatment, more meds etc… I really needed that break!  I did quite well on holiday, or so I thought.  I think I was in more pain than I let on, but I was trying to ignore the fact that my pain followed me on our vacation… I didn’t want for my pain to be the centre of everyone’s attention…

A few days in, I realized that my joints were bothering me in a way that they hadn’t before.  My Dad and I had to find a Farmacia at our first port of call so I could pick up some tensor bandages for my ankles… I’ve NEVER had problems with my ankles, but I think what happened, was while on the ship, all my muscles in my legs were ‘engaging’ with every slight movement of the ship… something I never even thought of!!  And with that my nerve pain became worse… But I ignored it the best I could… in other words, I probably over did it, but I wasn’t even thinking in terms of ‘pacing’… Screw it… I am having a ‘NORMAL’ vacation…. I refused to think about my pain… and maybe I did myself a little bit of a disservice… I mean I went through 2 grueling travel days (there and back), sitting in an uncomfortable plane seat, endless walking on the ship and in port… I did a LOT that I normally don’t do.. I was really proud at the time, but I know I pushed myself as far as I could go as well…

I came home with a nasty case of vertigo, and a body that was REALLY needing a holiday AFTER our holiday.. but I didn’t stop… I tried to take some medication to help my vertigo, but it didn’t help… It made me REALLY dehydrated, and my pain spiked as a result… the nerve pain was out of control… but I had a million things to take care of.. My Dad had major neck surgery the week after we got back, and I had no more than 5 days to put up the Christmas Tree, Do ALL my Christmas shopping, unpack, get back into the swing of things, visit my Dad at the hospital, support my Mom through Dad’s surgery etc… I LITERALLY spent 2 Saturdays at the Mall for 8 hours each, and would COLLAPSE into the front seat of Tim’s car, shaking, because I had hauled 15 pounds of shopping bags around the mall… I had STRANGERS coming up to me asking me if they could carry my things for me… obviously I was very APPARENTLY over-doing it… but I had blinders on.. Once again, I ignored my pain.. I pushed myself WAY WAY TOO HARD… and I wasn’t giving myself a chance to recuperate…

Once Christmas was out-of-the-way, my body tried to get my attention.. and I ignored it.  My SI joints have been very unstable since I had my son.. For years I have had a problem with them, and nobody has been able to find a solution. New Year’s Eve I dislocated them somehow.. and I was in agony for all of January… My Nerve Pain got so bad I went from being in agony to feeling desperate.  I finally got some relief in February, only for it to be a short break.  2 weeks after that they dislocated again… and I hit a WALL…  It is the most pain I have been in for some years…

My Doctor and Pharmacist decided to try me on Topamax… it is an anti-epileptic drug that is used for migraines and nerve pain.  I was getting 3 or 4 migraines PER WEEK, I was in agony because of the instability in my hips and back, and my nerve pain was SEARING to the point it made it almost impossible to wear clothing, let alone leave the house… I was house bound for 3 months straight, other than the occasional Doctor’s appointment, or visit with my folks… I was desperate for relief, and ready to try anything!!

Within 24 hours of taking Topamax for the first time, I felt horribly ‘wonky’.. dizzy, nauseous, EVERYTHING tasted HORRIBLE… I thought to myself, I can do this!  I HAVE to get beyond the side-effects…

But I didn’t.  It just kept getting worse….

I would RAGE when the dog barked… I would CRY when I couldn’t open a jar of peanut butter… Tim would ask me a question and I would BARK at him.. and then I would CRY because I barked at him when I didn’t mean to… I felt completely out of control of my emotions…

A week in, in an instant, I felt like someone flicked off the lights… I remember it as clear as day… I had gone to bed the night before reasonably happy… and woke up the next day as someone else…

People around me didn’t know what to expect… My personality changed.. as did my outlook… my half-full glass was not only empty, it had fallen on the floor and smashed into a million pieces…

I spent 3 days straight crying my eyes out…. like the ugly-I-cannot-control-myself kind of cry… and it scared the hell out of me… I knew this feeling… I had felt this way before… I WAS REALLY DEPRESSED

After some investigation, I realized that the Topamax could have triggered it, and I abruptly stopped taking it… and I had a really honest conversation, first with myself, and then with my honey… I needed to try to figure it out, be honest… get real with myself…. re-evaluate the way I was doing things…

I have been off the Topamax for a few weeks now, and I cannot TELL you how good I feel.. even though I still feel like crap (if that makes any sense?!).  I am still in a lot of pain, but I am also feeling more like MYSELF than I have in a long time.. The depression has lifted, I am feeling strong… I am listening to what my body needs.. I am again becoming a ‘friend’ to myself, working WITH me, not against myself…

I have learned a lot of lessons in the process… and I am grateful.

I am not yet managing my pain, and I won’t lie, it is shitty most days… but I am acknowledging that.  I am not ignoring it anymore.  My need to feel ‘normal’ put in a really bad place… So I am learning once again to accept myself, the way I am… I am not always Graceful… but I am a work in progress… it is about the journey not the destination….

I am happy to be back.. and I am grateful to still be a part of this community.  Thanks for never giving up on me, even when I had given up on myself….

And PLEASE…. BE CAREFUL WHEN STARTING NEW MEDICATION.. IF THIS CAN HELP ONE PERSON, THEN IT WAS WORTH IT… IF you start a new medication, and you find that your behavior, personality, or mood takes a sudden DROP.. GET IN TO SEE YOUR DOCTOR RIGHT AWAY!!  ASK FOR HELP!!  Side-effects are very much NORMAL… but there is a difference between experiencing nausea, tiredness, weight gain, dizziness etc. AND DEPRESSION!!  Depression isn’t an acceptable or tolerable side-effect!!  And NO amount of pain control is worth your sanity, your well-being OR your life!!

I am happy to be ‘back’, pain and all… and I am grateful to have learned more about myself in the process.

**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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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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2010 Canadian Weblog Awards

THE CANADIAN WEBLOG


AWARDS 2010


I am extremely honored, and VERY excited to announce that Graceful Agony has been nominated in THREE categories of The Canadian Weblog Awards for 2010!!  HOORAY!!!

The Canadian Weblog Awards is a juried competition that showcases and recognizes excellence in Canadian Blogs, and the art of ‘blogging’.  There are several categories, and come January 1st, 2011 – 3 winners will be announced for each category!!

Graceful Agony has been nominated in the following categories:

  • Best New Weblog

  • Health/Wellness

  • Life

*You can clink of the 2010 Canadian Weblog Award Nominee Buttons in my side-bar for more information.

I  have to say that on a very painful and lonely day back in January I decided to start Graceful Agony, and made my first post… I had absolutely no idea how many people would read this online journal IF ANY… I figured that the best thing I could do for myself at the time was find a way to express so many feelings that I had held inside for a very long time… I knew that there HAD to be people out there who suffered the way I do…   I thought that if I could build a forum, be truthful about myself and my experiences, and find others who could identify with my less-than ordinary life than this journey wouldn’t be in vain…. and I had absolutely NO idea the impact of what I was doing…

I have had thousands upon thousands of hits on this blog since that first day – I have received hundreds of private letters and comments with messages of inspiration, struggle, strength, and determination.  I have been able to create an online forum of support and of friendship…. And I hope above all I have, and will continue to spread light and awareness about living with Chronic Illness and Chronic Pain.

But the true impact of all of this has been that this blog has changed my life…

YOU, my readers, have changed my life, uplifted my spirit, and have shown me that my capacity of love and friendship is far greater than I ever thought…

You have been my lifeline, my laughter, and ultimately the reason I have been able to find hope again in this crazy life.

And I want to thank you from the very core of my heart.

I hope to make all of you proud, and commit to living my life openly, honestly, and gracefully – on and off this blog – but you know what they say… It is an honor just to be nominated…

Those words are trite, and often used, but it is true…

I hope you all stick with me, and keep being a part of my journey…. I couldn’t do it without all of you.

**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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I found this article today, and wanted to pass it on.  abc Health News ran an article about epileptic drugs linked to suicide risk this week.

anticonvulsant drugs such as Neurontin have made headlines in the news for sometime now – NOT because they are ineffective for epilepsy, but because of the ‘off label’ use for treating chronic pain and the controversy stemming from that. There has been class action suits filed against the makers of Neurontin in the United States because of marketing anticonvulsants as pain-killing drugs.  If you suffer from chronic pain yourself, you may be familiar with medications such as Gabapentin (Neurontin), Lamictal, Gabitril, and  Topomax (Topiramate) – but a new study that has surfaced explains WHY these drugs ma be dangerous in the treatment of pain.

Your risk of attempting and/or completing suicide can almost DOUBLE while on these medications, according to the American Medical Association.  THAT is a significant increase!

Understand that suffering Chronic Pain has an associated increase of suicide risk on its own, it is hard to tell in a study whether or not the risk is a combination of disease AND medication, or just medication alone – BUT, regardless of that, our chances of becoming that desperate, or that depressed is higher than the general population.

PLEASE take a few minutes to read through this article today – AND-

Check in with yourself… Are YOU depressed?  Feeling hopeless?  Have your sleeping and eating patterns changed as a direct result of feeling depressed?  Are you currently taking any of these medications?

If so, PLEASE take this seriously, and call your Doctor and make an appointment today!  Reach out and ask for help.  YOU are not alone.  This isn’t an easy journey – and we all fall from time to time, but there are ‘safety nets’ out there that can catch you and prevent you from falling further.

If you are on one of these medications, and you haven’t yet spoken to your Doctor about  all the risks associated with it, please do… It potentially can save your life.

Wishing all of you peace and happiness today.

**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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I’ve had a really hard day…. For those who read my post earlier today, my day started with horrible pain, and it just went downhill from there….  My migraine is subsiding… YAY!!! BUT it has been replaced by the most intense all-over body pain that I have had in a long time, combined with this severe neuropathic pain than is getting the better of me…..  It is that fear-inducing, crippling pain that takes your breath, and your will to keep fighting….

My honey gave me a back rub this morning, and I cried… he asked me if there was anything he could do to make me feel better… and I cried some more….

I sat defeated on the bed… and cried…

I sat in the bath… and cried….

Sometimes I am not a tough chick… sometimes I am reminded of how very human and vulnerable I am….

Sometimes I really just want all this to stop… I want to take off the happy face and replace it with something a little more honest… I AM NOT OKAY WORLD….  Some days I just want to completely fall apart – not because it feels good to do it, it is because somehow if I physically fall apart, it would be validation of the way I feel inside.  It would EQUAL what I feel inside….  I don’t have a full body cast on, my head has hair, I don’t walk around with a seeing eye dog….  my pain is almost always invisible OUTSIDE of my home…. and sometimes I just want to walk around SCREAMING like a raving lunatic… ya know, be one of those people at the bus stop that talks to herself…I want people to SEE what this life is truly like…. I want to be VALIDATED…..  akin to a rebellious teen, sometimes it is easy to feel that bad attention is better than none at all….I WANT TO GET ANGRY AND HAVE A TANTRUM AND SCREAM!!!!!   I RARELY ever feel that way anymore, and ALWAYS try to hold myself together…

I have a family who makes me want to strive to be a better woman, partner, and mother,  each and every day…. but some days I don’t feel that way, and this has been one of them…. I spent all day wanting to give the proverbial finger to the world…. Anyone and everyone beware…. I haven’t been in one of these moods in a long time….  I guess a 7-day migraine does have the power to make on lose their sanity, huh?

While I was sitting in the bath crying and feeling overwhelmed I thought of how I could just get through those few moments… if I could JUST get through the bath, then I would deal with getting ready… and if I can get myself ready then I will deal with going to collect my little dude from school.. and so on and so forth… but every time I got past how I was going to get through my bath I got overwhelmed and started to cry again…..  “I am going to write it down” I said to myself… I just need somehow to release a part of this…. and started planning a post in my head entitled “Drowning in a tub of tears”….  I started from the beginning and thought of everything I was going to include, and how I wanted to portray my emotions….. It fueled me to get out of the tub, get ready, and walk a few miles to my little man’s school… the whole way I was planning how I was going to write all of this down…. how horrible I felt… how much I wanted to give up… How I didn’t think I was strong enough to keep this up…. How I just wanted to lay in bed and cry all weekend……

-And then-

My son came out of school with a big smile on his face….. and gave me a big hug…. and I knew I had to change my attitude….. He was SO excited because he got his report card today!!  I know that sounds a bit strange, a child actually EXCITED about a report card, but that’s my boy!!  He is a cerebral child to say the least 😉 .  My little man hasn’t had the best experiences with school…  Right from the beginning it was like shoving a square peg into a round hole….  The first preschool he went to stifled him… his second preschool was AMAZING… but as soon as he got into grade school, he stopped thriving completely….  I couldn’t understand why he was bringing home mediocre grades, and had so many issues because he is really bright for his age, and an awesome kid… to make a long story short, when I started making healthy choices in my life, Aidan started being happier and applying himself.  He started to bloom, and everything that were issues ended up being GOALS… He has worked hard this year, and he finally is believing in himself!!

His  last report card was much better… but THIS one blew me AWAY!!!  He has gone from C’s last year to being an A Student!!!  His report card could NOT have been better!! (I am sure he would disagree with you though… a B+ is apparently not acceptable in gym class for him… my little perfectionist!)… As we walked home, we looked at his report card and read comment after comment of how proud his teacher is of him… and counted A after A…. I wanted to cry, but for completely different reasons than before!!  I am just so proud to be him Mom… and I know how hard he has worked this semester… he really set goals for himself, and he mastered everyone…

After high-fives, hugs, Slurpees, kisses and head rubs we made our way home… both of us beaming all the way… He asked if Tim was going to be proud of him…. OF COURSE HE IS!!!  He asked if that meant he deserved a reward in the form of a new toy…. I told I’m him we’d talk about it ;)… and when we got home he said the most amazing thing to me…. He said:

“Mom, I am going to share my A’s with you because WE earned them together!  We make a good team, and you helped me with all my homework, and you really take time to explain stuff… we did this together Mom, you work really hard too!… How about I give you 40% of my A’s and I’ll have the rest?”

“Hey buddy that means a lot to me but you earned them!!  Those A’s are YOURS.  I am just proud to be your Mom and I love you very much” I replied and gave him another hug before he went off to play a video game (well-earned in my opinion)….  Little does he know that 1% of his A’s means more to me than 100% of my own…. And his words meant more to me today than I think he will ever realize… While I spent the day giving myself a BIG F, my son still gives me an A… and you can’t get better validation than that….Nothing like a good dose of reality to change your day around.

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All snuggled in my bed…….my BIG and WARM king-sized-pillow-top posturepedic-wonder…. my kitty at my side, vying for my heating pad…. I turn over, and she gets in right underneath me to hog the heat…. what a brat she is…. She is a cute brat, so I forgive her….

My brain is somewhere between the last known dream, and wakefulness.  I am not in the dream any longer, but I don’t yet have any coherent thoughts…. well maybe I am thinking about the heating pad that Sophia is now laying on, and how nice it would be to have it underneath….. OUCH!!!!!!!!!

Before I realize what is happening, my heart starts racing, and my legs start squirming, and all I know is that I have to sit up… oh God, I really need to sit up…. shit, when was my last dose of meds….. What time is it anyway?  The burning….. the spasms…. the tightness this morning is insane… sit up, please sit up, please sit up…. and I try to move myself into an upright position and concentrate on my breathing….. I am holding my breath…. and my heart is pounding out of my chest….

Sophia takes this as a sign that I am done with bed for the day, and moves in for the kill, taking over my pillow too – so there is no chance I am going to lay down again….. unless I move her… and I just can’t…. She is a fat cat, and I can’t bear the thought of touching anything right now…..My meds are in the kitchen, so I have to at least get myself that far… I stand up… wait for the popping sound, and try to stifle it as much as possible… my honey still sleeps…. With one eye open, and my body on fire I search in the dark for my robe…. it is colder than usual this morning, and the frigid air hurts my skin…. it actually feels like needles poking me everywhere….. Did it feel like this before I got ill? I wonder…. I can’t remember it hurting me like this at one point… although now that is a distant memory.

I propel myself out of the bedroom, take a hard right, and I am in the kitchen… turn on the lights, and shield myself from the artificial light… the fluorescent bulbs hurt me too….  I take mental note to read the article I have bookmarked about the benefits of natural light to those who have Fibro….. Great, it hasn’t been 5 minutes since I woke up, and I already can’t turn off my brain…… Coffee or meds first?  I pause for a nanosecond… of course meds… there really isn’t much choice… I will take 2 yellow ones now, have a coffee, wait until the rest of the world rises, and then I will be able to have a white one AND a yellow one… I double-check in my head that my first dose will agree with the rest of my day… I really should have become a pharmacist when I had the chance…. I hear they make good money… oh right, now that I am thinking about money, I make a mental note to pay the power bill… oh and I sure wish my little dude didn’t need a night-light anymore…. If they switch my meds, that is going to cost at least $200 a month extra… if we can maybe just skip lights all together, we will be able to afford it…. Mental Note number two… maybe I should write this down….

Okay, pills are taken, and my cappuccino is almost brewed… time to turn the fire-place on, and my other heating pad… I have one in every place I sit in the house…  I grab my coffee, and head into the living room…. oh shit, forgot my pillow… and I can’t sit without it today… so I hightail (okay, I limp… I wanted to make it sound good) it back to the bedroom, peel my memory foam blob from underneath the cat, and make my way back to the couch…. The cold air is still really hurting me… I struggle to turn on the fireplace…. I have to bend over to do so, and my body retaliates….  okay, okay, I try to calm it down… I will take care of you in a second… I just need to get this stupid fireplace working…. Mental Note number 3, I wonder how much it would cost to get our fireplace updated… the black chrome and brass is um… nice…. but it sure looks dated…. ya right, you are kidding yourself… there are so many other more important things to do… maybe if you actually WORKED we could afford it…. forget mental note number 3.

I am starting to get warm, and REALLY trying to ignore how much I frikkin’ hurt this morning, so I turn on the laptop…. and turn off the heating pad, and turn on the heating pad, and turn off the heating pad….  I can’t get comfortable…. I usually wake up in a lot of pain, but gheez-mother-of-all-that-is-sacred-in-life, Isn’t this a little excessive?  What do you want from me world?……. WHAT DO YOU WANT FROM ME!!!!!!!!!!!!!!!!! I take a sip of my coffee, oh great it is already getting cold, I missed the first hot sip of coffee of the day….  oh right, it is because it took me so long to light the fireplace….. grrr…… Why can’t ONE morning start the way I want it to?  Mental note number4 – or no wait, it is number 3, because I cancelled the last number 3…  okay, where am I?  I am so foggy this morning…. right, mental note number 3 – You aren’t dying, and you are still better off than a LOT of people, so stop your whining, and count your blessings…. pull up your bootstraps girl, this is only the beginning of your day….

After a beat myself up a little longer in my mind, I chug down the cold coffee… and PRETEND I am enjoying it…. I would go make myself another, but that would require me to get back up… and that isn’t going to happen anytime soon… after the yellow pills start to work anyway…. I note the time – and realize I have 45 minutes before I have to wake up my little dude, and breathe a sigh of relief… I will ACTUALLY have some time to get a handle on this pain today BEFORE I paint on a smile, and wake him up with a song…. who am I kidding… like I am Snow White or something!!!….  Do I really think the moment I go in to wake him up, that birdies will start flying around his head in sing-song?  and how about the mice…. they will lasso his quilt and pull it off him, one corner at a time….. and little dude will wake up with a smile on his face and go skipping down the hallway and eat his breakfast like a good little boy……  Mental note number 4 – STOP watching Disney movies before bed….. honestly…  This morning is bound to look more like an episode of Married with Children, or The Simpsons… but one can always dream…..

Shit, I was feeling so bad last night, that I didn’t make sure that his homework was back INSIDE his bag…. and his lunch hasn’t been made…. Does he have a clean shirt to wear today?  I know his dress pants are in the dryer…. What is the weather like?  Can he wear his sweatshirt today?  I know I have a clean sweatshirt…. he hates those red school sweaters….. but that might be what I have clean, so he may have to suck it up and wear it today….. oh crap, I forgot he wanted to wear his Converse Chucks today….  Where are they?  Are they going to be warm enough?  What time is it now?  I need another coffee…  God my face hurts….. and that burning in my hips and feet… is that ‘normal’ pain or is it worse today for some reason?….I am either getting a hot flash, or it warmed up on here quickly… I have to go turn off the fireplace… maybe I will just turn off the heating pad… and take my robe off…. okay, not I absolutely have to go turn off the fireplace… maybe I should ice my neck and face?m Shit, I better just go find his school uniform….. and while I am at it, I can swing by the kitchen and make myself another coffee while I look to see what I can stick in his lunch box today……..

Pain woke me up this morning……  Can you tell that I am not happy about it?

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Sorry Everyone,

I had intended on getting at least one good post out of myself, but I have accepted that it just won’t happen today ;).  Maybe tomorrow I will write my Pulitzer winning post? (I am SOOOO kidding y’all!  If you can’t laugh at yourself, WHO can you laugh at?)

This migraine is kicking my butt… and it has really taken hold of my jaw and neck… I am going to have to pay my chiropractor a visit tomorrow morning and ask him for some help…. Each time I move my right shoulder, I get fireworks going off in my head and neck… it is just going from bad to worse, and it’s time to stop fighting and just sit with it until I can get some help from my AMAZING chiro!  You know you are in bad shape when you would GLADLY have your chiropractor manually stretch and release trigger points INSIDE your mouth than be given a trip to the spa… that is where I am at right now…. OUCH!!! I will exchange a really GOOD hurt over this hurt any day!

I am still holding up okay, but this is 4 days straight now, and I am starting to lose steam….. There is only so much we can do on our own before we have to reach outside ourselves.. I have tried everything.. stretching, heat, ice, baths, showers, dietary changes, yoga, deep breathing, doing the hokey pokey… I put my right foot in and I did shake it all about, it didn’t work.  I swear, is there something I am missing?

Do you find that once a certain part of your body acts up, it sets off a chain reaction? This all started with a sore back and shoulder, then my back pain went away, and it was ALL in my shoulder…. then it moved quickly into my neck… and now I honestly can’t say where one starts and another ends… everything is SOOO tight and twisted… blah…  And on top of my nerve pain, and “normal” pain, I think I might go loony tunes soon!!  (I promise, if I go anywhere, I will invite y’all along with me!)

Sorry to all who was expecting some sort of togetherness today on my part 😉  but it ain’t gonna happen.  I feel badly because the past few days I have not been blogging the way I normally do… I just need to get myself in order, and then I will be back to my fun-loving sore self – instead of my crankypants desperate self 😉

So I am off to lay down AGAIN with another ice pack, heating pad, book, and a prayer….  I need for this migraine to GO AWAY!!!!!  There, I told it!!  Do you think it will listen?!?

Hugs and my love to all of you… thanks for letting my rant a little… sometimes it is good medicine.

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