Thursday, November 25, 2010

Thank you!!

Thank you to all of my friends for their love and support through my blogs, via Twitter and Facebook. I am grateful and couldn't do it all without you! Have a safe and happy holiday!

XOXO Deana

Monday, September 13, 2010

It Starts Today!

30 Things About My Invisible Illness That You May Not Know


1. The illness I live with is Fibromyalgia.
2. I was diagnosed with it in the year 1996.
3. But I had symptoms since 1990.
4. The biggest adjustment I’ve had to make is slowing down.
5. Most people assume that I am a strong person.
6. The hardest part about mornings are getting through the first hour of the pain.
7. My favorite medical TV show is House.
8. A gadget I couldn’t live without is my computer.
9. The hardest part about nights are being able to sleep through the night or rolling over during the night.
10. Each day I take 34-36 pills & vitamins.
11. Regarding alternative treatments I I do take supplements.
12. If I had to choose between an invisible illness or visible I would choose visible.
13. Regarding working and career I really miss the fact that I had to quit working and cannot work outside the home.
14. People would be surprised to know just how much I really do suffer on a daily basis.
15. The hardest thing to accept about my new reality has been having limitations.
16. Something I never thought I could do with my illness that I did was reach out to others.
17. The commercials about my illness are not realistic.
18. Something I really miss doing since I was diagnosed is working.
19. It was really hard to have to give up my last job.
20. A new hobby I have taken up since my diagnosis is blogging.
21. If I could have one day of feeling normal again I would go parasailing.
22. My illness has taught me that I am stronger than I ever thought I really could be.
23. Want to know a secret? One thing people say that gets under my skin is "Have you tried..."
24. But I love it when people show support.
25. My favorite motto, scripture, quote that gets me through tough times is "tomorrow is another day".
26. When someone is diagnosed I’d like to tell them to surround themselves with loved ones and develop a support system.
27. Something that has surprised me about living with an illness is the number of people who have the same illness and understand where I am at.
28. The nicest thing someone did for me when I wasn’t feeling well was help me with Maddie and give me time to rest.
29. I’m involved with Invisible Illness Week because I feel that it is important for people to understand how to help their loved ones through the rough times.
30. The fact that you read this list makes me feel hopeful that you can reach out to someone you know with an invisible illness with a little more love and understanding.

Thursday, August 26, 2010

Dread Locked


No, I'm seriously not talking about THAT kind of dreadlock. I'm talking about being locked in the dread of colder weather approaching. I can feel it in my joints already. I am waking up with burning pain in my spine again from my neck to my tailbone. My hands are starting to feel stiff and various other large joints are affected at random. Fall and Winter are the worst times of the year for me. Already the nights are getting chillier. Not something I am looking forward to.
P.S. I have thought about THOSE dreadlocks on occasion, only so I wouldn't have to painfully wash my hair in the Winter, but not that I would actually do that to my hair!!

Wednesday, August 4, 2010

Stomach Issues

For almost a year I have been having horrific stomach/abdominal cramping. I don't mean just slight discomfort, I mean doubled over cannot breathe type pains. We suspect it may be acid reflux but really not sure. It affects me at all different times and it doesn't really make much of a difference as to what I have eaten. It seems to happen more if I eat anything with onions and tomato sauce. I have an appointment to see the doctor this weekend. In the meantime I started taking Zantac, so far it isn't working.

Wednesday, July 21, 2010

But you hurt EVERY day....

That's right, something does hurt every day. Not every day is the same. Some days are minor, others are severe. It isn't like the commercials on TV where I can take that magic pill Lyrica and suddenly I am standing at an easel, completing an entire painting in one day. I can't take that magic pill Savella and work an entire day in a bakery. I can't take that magic pill Cymbalta and ride off into the sunset with you on a horse.
I've taken those drugs, along with Neurontin, Aventyl, Ultram, Ambien, Celexa...and many others, you name it I've tried it. Only once I'd like to go to the doctor and not have to sit there and hear him say "We've tried everything" while handing me my prescriptions for Vicodin (for pain) and Valium (for sleep). "There's nothing more we can do for you" rings in my ears for days, even months after those visits.

* I'd ike to not be a better weather forecaster than Al Roker, knowing two days ahead of time that it is going to rain.

* I'd like to not have to wear socks in 90 degree weather because my toes hurt so bad they feel as if they will break off with the next step I take. And because my skin is so dry it is literally cracking open.

* I'd like to make it one day with out a headache of some degree.

* I'd like to not feel like ripping off my clothes because they hurt rubbing against my skin.

* I'd like to sleep without waking up every hour because the pain is so bad I have to change positions. My joints in my shoulders, elbows, wrists, ribs, hips and ankles become so stiff I can hardly roll over. By the time I do get rolled over I am awake enough for the burning pain to start, once that registers in my brain sleeping is done. I have to get up.

* I'd like to eat foods that I like without having severe gastrointestinal cramps the next morning. I really don't enjoy curling up in a ball on the kitchen floor (or anywhere for that matter) for nearly an hour until the pain subsides or the Vicodin kicks in whichever comes first.

* I'd like to be able to shop, clean the house, cook, take walks, play with Maddie etc...on my *good* days without having to pay for it the next day not being able to barely move.

*I'd like to be able to get bathe, get dressed, do my hair and put on makeup with out the exhaustion that comes afterward.

*I'd like to leave my hair down but the feeling of it brushing against my face and neck hurts. Putting it up to avoid the pain causes my scalp to hurt.

* I'd like to work on projects during the day without being so exhausted I can't keep my eyes open and have to try to nap.

*I'd like to not have to be embarrassed that someone might see the bruises all over my back from sitting on a heating pad constantly to ease the burning sensation in my spine.

* I'd like to not have to get painful injections in my spine to ease the pain.

So yeah, I hurt everyday. Everyday is not the same. I hurt. Somewhere. In some combination of any or all of the above.

Wednesday, June 2, 2010

A Day Without Vicodin...

is actually quite painful, physically and mentally. I'm not sure which is worse. The physical pain really is pretty much the same only amplified 199.9%. Mentally? Well...knowing it is an addiction, not by choice, makes matters worse. I can't get to the pharmacy fast enough, I have a short fuse, I smoke way too many cigarettes, drink way too much coffee, nervously do way too much around the house...all of which contributes to the amplification of the pain. It is a vicious cycle to be in. It is the only medication that the doctor has prescribed that even comes close to "dulling the pain". I've tried Lyrica, Savella, Wellbutrin and countless others. The only thing I experienced with each one was the side effects..the bad side effects. No thanks. I know that I have been living with this condition for over 12 years but come on, can't they find something that works for people like me? The ones that don't do well on any of the other medications? So for now I take my Vicodin. And at the end of each day I go to bed hurting so much I can't even stand clothes touching my skin.

Monday, May 24, 2010

The Rain and Pain

Stay mainly on the.....okay, so I was trying to make that rhyme but just couldn't make it happen.
Have you ever been driving around the countryside when you suddenly see a field full of cows all lying down? Most people don't know that they lay down in anticipation of rain. Don't bother asking me why, I am not an expert on cows! Having lived across the road from a field of cows for almost 7 years I was able to observe the many strange things that cows do. Have you ever seen a cow run? They do and it is hilarious to watch. People who would come to our house and witness a running cow always had the same reaction "I didn't know cows could run!", yeah they do! They are also very habitual animals, they go out into the fields the same time every day, retreat to the barn for regular milking and feeding times. They use the same paths and if some are lagging behind, one will stand at the gate and "call" the others. They love looking at the calves, which are usually kept in a separate area. And they gather in small groups as if having a "chat". 
Anyway, back to cows laying down in anticipation of rain, usually the day before it rains you'll see the cows lying down in the field. By now you're wondering what in the world does all this have to do with pain?? I can always predict the rain two days beforehand according to my pain levels. I wake up in the mornings with burning pain in my spine and joints, usually on a severe level. Take one look at The Weather Channel and...yup, it's going to rain.
These last couple of months with the amount of rain we have been having has been brutal for my pain levels. I feel good for a couple of days then like the black clouds in the distant of an approaching storm, boom, there's the pain. Of course on my good days I tend to do too much despite knowing that the pain levels will be worse. This is my life as I know it. So storm or no storm I keep trudging through.

Tuesday, March 9, 2010

Being Alone On This Path

I spent some time with an old friend this week who I hadn't seen in about 3 years. She is in the same boat that I am, probably worse. She also has Fibromyalgia along with RSD, Degenerative Disk Disease, arthritis and a few other chronic problems. 
This morning I was leaving her a message on Facebook and happened to click on her info tab. Reading her comment about herself living with these conditions brought tears to my eyes. She stated how lonely it is not having friends because "no one wants to hang out with someone who is in pain" 
This is true and has been in my case many times. We aren't chronic complainers regarding the pain, in fact most of us try to hide it the best we can. But the truth, be it for whatever reason, is that we don't have a lot of friends.

Monday, March 8, 2010

Me Right Now

Pain. Physical pain and lots of it. Actually more than I can bear. More than I have experienced in years with this thing they call Fibromyalgia. Fibro as explained in Wikipedia - Fibromyalgia - but I am here to tell you that it is much more than that. At times it is mild, an ache here or there, right now it is excrutiating to say the least. I try to hide it. The physical limitations, the tears, the frustration, the fear...
I am afraid of this pain, it scares the hell out of me. I want to function, without pain medication, without pain, without fear. I want to play on the floor with my daughter. I want to go places. I want to do art. I want to dance. I want to run, to play to have FUN. But I can' hurts..physically, emotionally. I cry actual tears. I cry inside when I don't want anyone to know. I am exhausted.
Another appointment today with the Rheumatologist. Nothing new, pain, his sympathetic looks, an injection and the suggestion that I find a heated pool to move around in to ease some of this pain. It feels so hopeless. And so I go on, I cry, I live.

Wednesday, February 24, 2010

Gotta Start Somewhere

I've wanted to start this a long time ago but didn't even know where to begin. I've been told over the years that I should tell my story. I have told my story, verbally, to those who would listen.
I'm not a writer. Writing what I feel or think has never come easy for me. The words run through my head like a novel but taking that thought novel and putting it into words well... Some where between my brain and my hands everything gets lost. Anytime I've ever tried to write these things down it seems somehow...unnatural. When I read back what I've written it sounds like babbling.
Over the past year or so I've been doing a different for of writing, something that seems more natural to me. I've been using TWITTER There is a limit of 140 characters per tweet. For me this is perfect! Thoughts, snippets, qotes, jokes...these come easy for me, so much that I am now on Twitter most of the time okay, ALL of the time. Not only has this helped me get the thoughts out of my head but it has become an awesome source of connecting with many people.
I have been pretty isolated over the past 5 years having a small child and living in the country. The internet is my connection to the outside world. That is where I have found friends, through my blogs, JuStDeEz'Art & LiFe , JuStDeEs'ArT , The Barefoot Cook , many art groups on Yahoo, Facebook and Twitter.
So this blog is the beginning of my fourth, a blog about just me. It might make you laugh, cry, get angry, understand, ask questions and that is OK because that is what I will be doing here as well.