Posts Tagged ‘fibromyalgia

30
Nov
09

Easy

How should I be?
Amazing, super,
wonderful and fine?

Has magic suddenly
taken me over
trasformed me
into a super Fairy,
all powerful,
and all immune?

I can say, fine, great,
I am wonderful.
but then that would be a lie.

Never in my life
have I been so encouraged
to pretend that truth
is not important.

Never have I felt
so disbelieved
by those around me.

Others feeling comfortable
with my answer is much more
paramount to good
conversation, and easy
human interaction.

I do wish it was
easy to lie for you,
but it is not.

None of this is easy.

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27
Nov
09

Title

From the way
they talk
the way
they look

at me

should I really add
a title to the end
of my name

Princess of Pain.
she who lives
in it,
and with it.
never a break
never stopping

But do I really need
a title?

Can’t I just be
a girl?

who sings
who writes
and loves to be in love?
who tends and
loves to feed
any who want to eat
the crazy creations
she whips up.

Pain may haunt me,
may teach me daily,
may color my every move
but it is not me.

It is just a veil
a thin line
that separates me
way further  away
from others
than I every
really believed.

01
Nov
09

"Can’t Wait To Get On The Road Again."

Alright…..one chocolate cookie led to an embarrassing myriad of glutenous eating over this weekend.  I basically said to heck with it, and decided that I know what I need to be doing, and the only way I could indulge one more time was if I made the commitment for good now.  “FOR GOOD.”  There is a song from the musical Wicked that has  that title, “For Good,” (which made me cry when I saw it recently because it made me think of my high school kids that I miss toooooo much still, but they do text me occasionally) and one of the lyrics goes: “I have been changed for good.” So I really just think that I need to just do it.

I have the ability to control this one, potentially enourmous, aspect of my health.  Why would I not take full advantage of being in control, as opposed to shoving all these pills down my throat that I truly feel control me.

So

Ok, so I could look at this as a sort of silly ode to the knowled

23
Oct
09

Questioning it all over a cookie.

So I know that I will not be completely gluten free until I change two of my meds, which is going to take me about 2 months.  I wish this were not the way it was, but money and the fact that I need to keep on both of them completely steady without a break, so really no way of just going off them.  I have one doctor’s appt. scheduled and I need to make the other one soon so I am on top of this.

Yesterday I decided to have a cookie from the cupboard….chips ahoy….of course it had gluten.  And I wondered, “Is this going to make me feel funny or bad?”  It did not, but I have to remember that I will not begin to feel good till it is all out, which includes the gluten in the pills. 

If 1/8th of a teaspoon of gluten can cause a reaction then that much is easily in one or two of these pills, which I take a total of 7 of each day.  This is kind of discouraging.  I want to be where I am feeling better as a result of my hard work eating and cooking gluten free, not just doing it for no reason till my body actually can be free of it.   But I don’t really want to go back to how I was.  I had such a hard time with this the first time, and now I feel truly determined, but I feel its a bit useless. 

So feeling a bit set back today, and knowing a bit better how much will power this will truly take from me to be a reality in my life.   Will I even feel better once it is all out of me? I guess there are no guarantees with anything, but I at least can try this myself, and control it.  So here is to a gluten free tomorrow….I hope.

21
Oct
09

I like it HOT

Ok, so yesterday I purchased a bag of the Bob’s Red Mill GF hot cereal.  I think it is a blend of rice, corn, sorgum and something else…..well I have not been feeling great all day, and I found myself in a lot of pain tonight.  And once I kind of came out of the worst of it, and was not so sick to my stomach anymore, the only good thing I could think of was hot cereal.

So it is 1/4C cereal to 3/4 C water.  And I microwaved it for 4 minutes total, and added a little extra liquid after 3 minutes (high altitude after all) and some cinnamon, milk and my organic cane juice sugar….wow is this good.  So much more interesting than cream of wheat, but nice and mild for my night time stomach.  This is bound to become a staple here in my house.  I will eat it for breakfast (I NEED to start eating breakfast, and this was super easy) and dinners when I am woozy and needing something mild.  I am tired of cold cereal for sure….I have had a few months of cold cereal for dinner.   Looking for something HOT, and I’ve found it!   Yippee…..one thing for my list of GF foods I LOVE!

31
Aug
09

Invisible Illness Week–Sept. 14-20,

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chronic Intractable Headache, and Fibromyalgia

2. I was diagnosed with it in the year:2009 for the Fibro, and 2006 for the Headache

3. But I had symptoms since: age 13 or 14

4. The biggest adjustment I’ve had to make is: T he amount of activities I can do daily. The fact that the old AnnaBeth is really no more. A new one is ready to emerge, if I let her.

5. Most people assume: I look fine, I must be fine.

6. The hardest part about mornings are: Waking up, sleep is elusive and chopped up, also sore neck and hands, and moving to take a shower.

7. My favorite medical TV show is: House, ER too but its over:(

8. A gadget I couldn’t live without is: The new jar popper opener that my husband’s grandma sent to me. I also could not do without the Cuisinart, that is if I feel like having minced shallots.

9. The hardest part about nights are:Trying to fall asleep when the pain is all I can think about, and then the worry and anxiety that come from knowing I will not get enough sleep and I have to work the next day, and my pain will probably still be there then too. It is like a nightly merry-go-round ride from hell.

10. Each day I take 30ish pills & vitamins. (No comments, please)

11. Regarding alternative treatments I:have explored homeopathy, reflexology, acupuncture.

12. If I had to choose between an invisible illness or visible I would choose: Neither, but in reality probably invisible. At least I can hide it a bit from the general public and those around me.

13. Regarding working and career: Embarking on new job as an assistant in a holistic health practice. It will hopefully be a less stressful environment, and I will be able to use the treatments!

14. People would be surprised to know: That I sing opera, I love to dance, and I write poetry daily, and I love to cook amazingly fun meals.

15. The hardest thing to accept about my new reality has been: The old me has vanished. My limitations keep me from the lifestyle I was used to. There was a lot of activity, and work, and it was good.

16. Something I never thought I could do with my illness that I did was: I am more sensitive to pain in general, mine, but also other peoples pain. This makes me super empathetic, and I have quick insight and am able to help them. It also has caused me, the go go girl, to slow down. There are things I never saw before that I revel in now. I must treasure the moment because the next one might be filled with blindsiding pain.

17. The commercials about my illness: make it look like little aches and pains, not the incredible all encompassing pain that engulfs my entire being, body and soul, and does not let me go sometimes for several days.

18. Something I really miss doing since I was diagnosed is: The desire to be physically active. I loved to dance, do yoga, swim, bike, and hike in the mountains. I can do these things, but just in tiny increments.

19. It was really hard to have to give up: That beautiful glass of Pinot Noir

20. A new hobby I have taken up since my diagnosis is: Knitting, and now lots of internet communication and activity, and a much over due renewed interest in my writing.

21. If I could have one day of feeling normal again I would: Ride all the roller-coasters I could find, drink the wine I want, and dance through the night, and lots of a certain other unmentionable night time activity (wink wink.)

22. My illness has taught me: Patience and the power of solitude.

23. Want to know a secret? One thing people say that gets under my skin is: They offer the new fix for me. If I had a nickle for every time that happened. I need to remember that people want to help, but sometimes I need to just be treated like AnnaBeth, and not this fragile, untouchable thing that is broken.

24. But I love it when people: Do things with me that make me remember who I am at my core, and that the pain is not me.

25. My favorite motto, scripture, quote that gets me through tough times is: Tomorrow is another day ~Scarlett O’Hara, Gone With The Wind

26. When someone is diagnosed I’d like to tell them: Flow, and don’t fight. I have spent several years in denial that this is my new reality, thinking that a magic cure will come along. I think I am just now getting to the point that I accept the new me, and am beginning to love the things she is good at (new things) and am patient with the pain. There may be things that come along to help you, but work to be comfortable with the now reality instead of wishing your days away. Treat yourself well, and take what you need.

27. Something that has surprised me about living with an illness is: New things have opened up in my life. My direction may have changed a bit to the left of where I thought I was going, but there are good things to come, and great things I have renewed focus onto that fit into my new living.

28. The nicest thing someone did for me when I wasn’t feeling well was: My husband always checks on me, and will bring water or ice at any moment, and the best part is, he is so happy to help me. It is hard to let yourself be helped, but when I see the cycle of giving and what it does for us, I realize that it is important to need and be needed. He is the most amazing part of each day for me.

29. I’m involved with Invisible Illness Week because: People need to know that just because the illness does not show on the face of the sufferer, we need to be sensitive to the fact that pain or other suffering may be underneath that smile. We do our best to be unobtrusive, however the sensitivity of those around us can be the difference in being able to interact well in the public, and wanting to just hermit into a hole and never come out.

30. The fact that you read this list makes me feel: Like one more person might understand what it means to be invisibly ill, and that creates one more understanding soul out there for me to possibly find each day.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at http://www.invisibleillness.com

03
May
09

does singing help or hurt?

As I spend all my possible energy for the day, and the next five in reality, on my concert this evening…I am forced to contemplate the purpose of the singing. My God, I love to do nothing better, and yet these last weeks I have fought and fought to get to rehearsal, work to stay on pitch which now is more difficult that at any other time in my life, and to actually breath. I hold my breath for most of time each day, and I go to sing, and no phrase seems to pass seamlessly without me gasping in the worst spot possible, and that gap will be heard and felt through the line.

All my thinking and musing daily goes toward “how can I sing?” That is all I want, all I want to do, to feel, to be. I think about wanting it constantly, yet I avoid it……the songs in my head which are desperate to be written down grow and grow, and crowd the space in which I try to remember and think….to do things to function properly. The songs want out…..my voice screams at me to be heard, and to work and to grow, and yet I stifle it. It hurts so much to think it all may never be the way I need and want it to be, and I stuff my singing self away….thinking the drive…the intense desire that has been with me since I was so small, will leave me. And then on occasion I try to use it….maybe at school, on a whim for my kids, and it is usually awful, I finish feeling like I failed. It all was likely because the pain in my head was gnawing down through my body….eating me alive. This pain is eating me….each creature it creates in me, the crazy, the insecure, the angry, the sad….eats at what is left of the little girl within who still likes to hope for something better. I feel like she gets smaller every day, going from normal 7 year old size, and dissolving down to a fairy….a tiny fairy with tiny wings, that can barely fly up to where the hope is.

Oh to feel normal….and yet what I think is my worst problem, is that I need to accept this as the new “normal” and I cannot. I cannot give in to being something else…..I know there is good to be found where I am and there are ways to go on and adapt. I am so sick of adapting….so sick of it. I want stasis…..I want a pause button for that moment in the day in my evening, when I am home and comfortable…..when I can lay my poor body down on my wonderful cloud of a body pillow, and be next to my Love, his head on my hip. The two of us so peaceful, and present…..pause….and stay there, till I find another moment I like as well…..and they are there. But as the clock ticks around again to the morning, awfulness creeps into my being even more….dread rules. I dread my morning….and morning should be new and fresh. I never want to go there. I want to live in the evening forever…and maybe it can progress to later in the dark of night….and that is ok, but light may never come. Unless light means that I am in a chair somehwere in the warm sun, sitting and soaking in the rays…..nothing but soaking. I am too unreasonable I know. But my whole state of being now seems unreasonable. It is unthinkable. I defy to be taken over by this pain, this monster that demands my being……and yet all I read and hear is I have to accept it. “acceptance is the first step”….to what to giving in to being something less than I am? I won’t……I can’t. I need to keep me here. I am getting lost….and more lost each day.

Sometimes I feel like he no longer recognizes me….the part he fell in love with has vanished into the crumpled pile of my body. I work so hard to keep up to where I used to be….to be me, and show me to the world….but I can’t do all I want to. I feel like so much of my day, of my work is left undone, and somehow I am running out of time. I have felt like this for a long time….but now it is stronger, and pushes at me so much harder. I need to do…..I need to be, and yet I may get to one tiny item on MY list each day. The list of living and working rules what I can and cannot do…..I am so lost in it all. I need to get back to where I belong. I think the Beatles said that best.

These last weeks…..I have hated to have to sing….this is not me…not me at all….ever. This needs to leave…this hate has to go. I have to find a way to do it. To sing, to be free within my body, to let the songs fly, to create, just me being……this I wish.