Archive for August, 2009

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

11
Aug
09

Where did I go?

So I fail to blog on here consistently, and I ask myself why? Why the hell can I not keep up? My brain is bursting with so much to talk and think about, and yet I hesitate to do this. I keep from continually talking about the things I know would help for others to read, and for me to mull over in each new post. It helps me to get the thoughts down, and in many cases I figure things out as I write. I feel like I have come to an epiphany by the end of what I have written. So why on earth would I shy away from doing this constantly?

I found a discussion on a forum I visit about finding inspiration for artistic pursuits. The question was about getting going, and the author asked for tips on starting to write about her health, and she said she could not seem to get started, and this came out of me:

How eerie and ironic, but this is my exact state right now. I have just been diagnosed with fibromyalgia (officially, now I believe it has been 14 years), and I strongly believe that my purpose is to write about my experiences to hopefully help others, and help me, by the outlet of the feelings and frustrations, in the process. But I can’t seem to do it. I have a blog that has about 5 posts in more than a year, and they are good, and a variety of topics related to pain, and chronic illness. But I cannot seem to keep it going.

And I think recently I have had a realization as to why….so I hope this helps you…. By writing about it, by putting it down, and explaining it and dealing with it, I feel like I am fully acknowledging it, and giving over to the fact that this is my reality. Part of me still is in denial about the fact that my life has be changed, most likely permanently, by my chronic condition….some small tiny girl inside of me, the part that is still 7, thinks that I am invincible, and absolutely fine, or that I will be in the immediate future, and cannot believe anything bad can happen. And how can an intelligent 31 year old woman be this ignorant? I think it is merely the optimism that there is good and that the good will prevail.

I think my remedy to all this is to find the good all over…it does not just have to be within my body. It can be in the beautiful Asiatic lilies on my front porch, the warm summer breeze over my legs, the love I have in my life with my wonderful partner for the journey. I am hoping these things, these beautiful things that are a sign that the good in life does happen, maybe I can accept my physical state, and limitations, and find the good things I can do and be a part of, and in turn use the writing about my struggles to cleanse myself of the pain I experience everyday. And maybe this will give me further strength for the journey and the dealing with it all. Who knows? Alright my thoughts just exploded into your small question for advice…I hope this is in someway helpful. I think it also helps me to write (haha here I am “blogging” about my daily life with my condition) it all down, and put into words the things I am dealing with. I need to think that the writing will help me so immensely, and even though it is an acknowledgment of my pain, by actually seeing it and writing about it this gives me the ability to face it head on, and in a way takes away the power it has through my silence about it.

So this may not make any sense, the ramblings of a crazy girl, but I hope there is something you can find in here to help you….I know it has helped me today.

~~~~~
So I guess I should take this advice….get it out of me, and not let the silence contain the pain within me. If I write a bit about it, perhaps the pain will funnel into the writing, and take away at least some of the emotional stress, and help me understand the experience of the intense pain. Right now I am in a state where my fingers are killing me, but the good thing is, typing uses small movements.

So here is my pledge~~I will write as often as possible about the pain, to accept it as a daily part of my life, and through the writing work to understand its influences, its teachings, and its mysteries. I WILL WRITE. I will be here, and show my pain….I will not hide it anymore. This is my determination