Webinar tomorrow!

WEBINAR SERIES RESUMES

Impaired cognition in CFS is one of the most disabling and frustrating symptoms patients experience. Deficits in short-term memory, information processing and processing speed have been documented by several research groups. How closely does the medical literature reflect patients' experiences and how can cognitive testing help support self-reported measures? Please join us on April 11 for a web program provided free-of-charge to all.

Date: Wednesday, April 11, 2012
Time: 2:00 PM (Eastern Daylight Time)
Free registration & resources on cognition:
http://bit.ly/cognition-intro

To see the whole posting about the webinar go to Research1st
http://www.research1st.com/2012/03/15/webinar-cognition/

I think I might rename this blog...or should I start another...or just leave the name alone and blog what I want to blog cause most of it has to do with health issues?

Helluva a lot of title for no more then what this post is going to be! I have a lot I would like to blog but it doesn't relate to FM or CFS/ME but is health related issues or related for me. It doesn't fit on my crafting blog although Okienurse Paper and Ink Therapy is a health, and mental health, related for my well being. I don't even know if I could change the name...I will check it out and decide.

Anyway, I digress, I would like to talk about a health related issue today that I am sure some of your other folks have also...WEIGHT! I am grossly obese...not my definition but that of the medical people that are doing all the research out there. I am not silly enough to think I was skinny but darn it labeling me grossly obese hurts my feelings a little bit. Health care professionals like to have everything in little groups and they try to sterotype everything so that it is easier to help us...NOT! Being from the healthcare field I would look at someone my size and immediately could tell you that all her issues would be alleviated if she lost a few pounds or MORE! I don't have the energy to hate that person I used to be but I really don't like who I was or what I did much right now.

I joined Weight Watchers today online and will go to my first meeting of 2012 tonight. I decided to rejoin WW (oops...I have been a WW member numerous times)today because of a different mental/mind set I have now that I haven't had in past joinings! I am a compulsive gambler, 90 days with GA, and I feel I have learned so much from that program and how to live one day at a time I think that I can use what I learn there to help me with WW cause I used to be so impatient to lose weight that I would binge cause I would get frustrated. Same as my gambling issues...I would get frustrated, happy, mad, sad, WHATEVER and take off to the casino. I think that my eating is a compulsive disorder too so I am going to play with it using my 12 Steps to Recovery I consider myself a non-diest Humanist so having a GOD is not in my 12 Step Program. Here is what I believe...Addiction and the...
I don't consider myself an atheist but don't believe in a God like my Christian friends do so this works for me.

Anyway gotta get dressed and go to a meeting right now so I will let you know what I learned when I come back. More later.

Wellness Authors Show

Today and tomorrow The Wellness Authors Show is highlighting an interview by Kevin White author of "Breaking Through the Fibro Fog". I really enjoyed hearing his explanation as to what Fibromyalgia is and how he diagnoses it and how he treats. I bought his book and will read it and let you know what I think about it.

Wellness Authors Show

Today and tomorrow The Wellness Authors Show is highlighting an interview by Kevin White author of "Breaking Through the Fibro Fog". I really enjoyed hearing his explanation as to what Fibromyalgia is and how he diagnoses it and how he treats. I bought his book and will read it and let you know what I think about it.

I am so tired!! Did I just say that?

Wait a minute! I thought that was a given with this disorder...I thought since we were always tired that everyone should know that and let us go home and go to bed!...what? I am suppose to have a social life and interact...

I went out with my daughter yesterday to an event called An Affair of the Heart in Oklahoma City at the fair grounds. The Affair of the Heart was started in 1985 as a one building one day show to a 7 building 3 day show in Oklahoma City and they are now having it in Tulsa twice a year. The show used to be all about crafting and art stuff that was handmade and the products to create crafts/art but over the years has changed. I wanted to go this year cause I haven't been able to go the past few years and I felt good...what did I say?...so we decided to go. The show was horrible. Mostly made in China style junk home decor and clothing items. Nothing like what it was years ago. I did really well but unfortunately, over did it and I have been hurting a lot today and went out and over did again!

I just got home and it is 1:30 in the morning. I went to a Valentines Day crop at my local scrapbook store and had a blast. I slept in till 2pm cause I knew that it would be a long day and I should have turned down the invitation to go to IHOP after the crop but friends were going that I hadn't seen in a while and a cup of coffee sounded so good... Tomorrow will be payback time. I know if I go to bed now I won't sleep cause my legs and head hurt so I am waiting for my Ibuprofen and Lortab to kick in so I will be able to be half way comfortable.

Tomorrow? I am expected to be at a Valentines Party at 1pm tomorrow/today so I better get to bed so I can be up at a decent hour. I know better then to push myself like this but I tell myself I deserve a halfway normal life but...One day at a time. Who knows come Monday I will be okay and not have a bad day. I keep pushing myself and testing the limits when I know that most likely it will just be a repeat of the last time when I thought I was normal...

Normal? Not me! I never have been so why do I think I should be special now? More tomorrow!

Interesting day!

It has been "one of those days for me" today! I was up and down and in and out of bed all day! I couldn't get comfortable sitting,lying,standing etc...boo hoo poor me! I hate these days and there isn't a damn thing I can do about them cause I have..fibromyalgia(FM) and myalgic enchephalomyelis(ME) or chronic fatigue(CFS) to some. Did you see me whisper that...

Sounds like another 12 step program ie, AA, OA, GA...stand up say it...I know you can do it...say it!!! "Hi my name is _________ and I am sick. I have Fibromyalgia and ME/CFS amongst other disorders!" Just like those diseases FM and CFS/ME are invisible illnesses that we live with day to day that no one can see but us. If you have the disease you can pick it out in others at a glance. Wonder why that is...do we look different to another person who has FM, CFS/ME? I don't know about you but I hurt all the time and narcotics don't do me any good most of the time. I test myself when I am unsure whether my pain is from one of the above or from my osteoarthritis...yeah I got that to...then I take a pain pill and if it works then I tell myself it is just cause I am getting old and nothing to worry about! I think that is what I sense in others I meet is the pain that is etched in their faces. The tired look that says they aren't sleeping well either!

I have been so depressed the past year and half that I had trouble just getting through the day most days without breaking down and crying on a daily basis. I had changed so much from the person I was 10 years ago that I didn't recognize myself on good days. I lacked any interest to do anything around the house, with friends, or family. I hurt most days going and doing something fun took too much energy and I just didn't have it to give. The tiredness that comes with ME/CFS is debilitating. I have never ever felt this tired in my life. Along with the tiredness comes a host of other issues that go with it.

What have I done that made a difference in my life? Well first off like in a 12 step program I learned I had to be truthful to myself and quit denying what was so obvious. I was sick. I don't look sick but I am! I learned to live within the limits that I have and not to push them cause it means days to recover sometimes. I used to stay so busy and active but now I have learned to schedule what I do and when so I don't get worn out cause I don't have any reserves to call on anymore. I am busy and active in my way now! I got over the pride thing too and I ask for help now when I can't do it myself. That took the longest cause I wouldn't ask and people aren't mind readers. I always have been a strong person and asking for help doesn't come easy. Being a burden and beholden to others doesn't set well with me.

I think if I could pass on any words of wisdom it would be just these..."one day at a time" Just take it one day at a time. I have good days and I have bad days and if it is bad today I know tomorrow might be better.

30 Questions about My Silent Illness

I get so tired of people telling me how I don't look ill...just a little tired looking they tell me. I found this questionaire on line at Invisible Illness Week blog after reading one on a blog I follow. Linda and her daughter Pea both have ME/CFS and have had it for over 20 years.
Linda's blog is Lindy's Musings From an M.E. Mind.
Check out both sites you will be glad you did. Lots of useful info there!

Now on to the 30 questions!

1. The illness I live with is: ME/CFS and Fibromyalgia
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: 1990
4. The biggest adjustment I’ve had to make is: loss of identity and mobility
5. Most people assume: I look healthy but a little tired and some even think I may be faking it! I love it when people tell you you just need to push yourself a little more!
6. The hardest part about mornings are: getting out of bed and dealing with life when my brain is still asleep!
7. My favorite medical TV show is: Private Practice
8. A gadget I couldn’t live without is: my cell phone
9. The hardest part about nights are: not being able to sleep. If I do get to sleep I wake up every hour or so.
10. Each day I take _18_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: am cautious at trying many cause it can cause a set back of weeks if it doesn't work.
12. If I had to choose between an invisible illness or visible I would choose: The devil I dance with right now. I can manage it more or less.
13. Regarding working and career: I can't work and I am on social security disability.
14. People would be surprised to know: I am still me with the same hopes and dreams
15. The hardest thing to accept about my new reality has been: the pain and inability to do the things I used to take for granted.
16. Something I never thought I could do with my illness that I did was: take a long plane trip and not be in bed for a week!
17. The commercials about my illness: Fibromyalgia is getting air time but the ME is not.
18. Something I really miss doing since I was diagnosed is: Gardening and working about the house and yard!
19. It was really hard to have to give up: my job as an RN. I created a new one as an artist! It is really fun too!
20. A new hobby I have taken up since my diagnosis is: painting
21. If I could have one day of feeling normal again I would? I don't think I would know what to do anymore cause I have scaled my life back to meet the illness demands.
22. My illness has taught me: to conserve energy and take medications as I need them and to not worry about addiction to Ibuprofen!
23. Want to know a secret? One thing people say that gets under my skin is: you don't look sick...what is sick suppose to look like? Or you will feel better if you start going to sleep at night! I would love to!
24. But I love it when people: wow you are looking good? Lost some weight?
25. My favorite motto, scripture, quote that gets me through tough times is: Women are like teabags. We don't know our true strength until we are in hot water!
Eleanor Roosevelt
26. When someone is diagnosed I’d like to tell them: learn your limits and stay within them it makes life so much easier. Don't keep trying to be who you used to be cause you never will be that person again. Adapt!
27. Something that has surprised me about living with an illness is: that you can adapt and loved ones help you with it. I don't know where I would be without the support of my daughter and husband! Probably in a nursing home!
28. The nicest thing someone did for me when I wasn’t feeling well was: come sit with me and talk about the world, watch a movie, just be there for me.
29. I’m involved with Invisible Illness Week because: Maybe I can learn something new or teach someone else that has an invisible illness to cope a little better!
30. The fact that you read this list makes me feel: happy. Maybe I reached just one and spread the word.