Worse Dr. Visit Ever

So...today I had an appointment with a new Rheumatologist which I plan on never going back to. That wasn't the original plan of course but after listening to him that is what I have decided. The visit went something like this....I get all checked in at the front desk and I'm taken back and the usual weight, height, temperature, blood pressure, pulse, short history is taken. I change into a gown, then in comes the doctor. Seems nice enough. He begins with family health history then wants a short rundown of past illnesses and hospitalizations. Wants to hear why I'm there and what I think is going on. He then does a physical exam in which he checked out my joints, skin, pressure points and strength. By the time he's done, I'm in tears as he's got everything hurting and caused my back to go into a spasm. So as I'm sitting there crying he starts telling me how the body responds to pain and that people with fibro have these broken pain receptors that wrongly report pain from the source to the brain. Then he goes into how he feels about fibro. The things he starts saying absolutely blow my mind.First, he says that anyone with fibro should never have been put on Social Security Disability with only a diagnoses of fibro and nothing else. He does not think that anyone with fibro should ever be collecting SSD. He tells me that even though I consider myself a stay at home mom and home maker, I should be out working somewhere as to keep my body and mind busy so I don't notice the pain.Second, he says that I need to start seeing a psychiatrist. As he put it, it's probably depression or something worse that's causing the pain...some sort of underlying mental issue.He also tells me that I need to stay out of bed and go to the YMCA and start taking yoga, Pilates or some other form of exercise classes. He tells me that I need to eat more and gain weight. He goes on to say that people with fibro should not be taking pain medications or sleep aides as they are not necessary so he doesn't prescribe them. Lastly, he said he would order a slew of test to see if there was anything else going on but if it turns out to be just fibro then I should just go back to my primary care doctor.OMG....he's telling me I'm lazy, it's all in my head, I don't need anything for the pain and he doesn't want to be bothered if it is.....ONLY FIBRO!That was the biggest waste of two hours of my day!

Social Media During Chronic Times

Over the past two years of my illness I have become quite dependent on social media to keep me connected to the outside world. One good example of the usefulness of using social media to stay informed came yesterday after the East coast experienced an earthquake. At the time, I was at the grocery store just checking out at the register. Suddenly, two registers over, two ladies asked what that rumbling was. Where I was standing, neither I nor the lady at my register felt anything. The other ladies concluded that it must have been an earthquake. When I got to my truck I received a text message from my husband, who was working in Philadelphia that day, asking me if I felt the earthquake. I tried texting back but my texts were going through randomly so to him they made no sense, cell service was then interrupted. When I arrived home my neighbor was standing on the porch, looking rather shook up, and he too asked whether I felt the quake. I hadn't, darn, I missed it somehow! My first reaction upon entering the house was to grab my iPad and check my Twitter feed. Yes, indeed it was an earthquake! I can always depend on finding out about news events a lot faster via Twitter than to turn on the television. The tweets were coming in at a rapid pace offering links to news reports, personal experiences and plenty of LOL tweets as to what it "might" have been.
Over the past few years of my using social media, whether it be Twitter, Facebook, Foursquare, Blogger and more recently Pinterest and a few others I can't think of right now, it has helped me tremendously during the worst of my chronic pain flare times. I started playing around on Blogger in 2007 with my blog JuStDeEz'ArT & LiFeas an outlet to show some of my artwork and share what was going on in my life through blog posts and pictures. One blog led to a second The Barefoot Cook. From there I joined Twitter. It was when Twitter was new and not a lot of people were sure about using it. I searched for local people who were using it and "followed" many of them, mostly just lurking and reading their tweets. I later started interacting in conversations and throwing a lot of my own 140 characters or less out into the Twitter world. Before I knew it I had quite a large following...this part always baffled me, I guess in part because I felt I complained too much about my living with chronic pain and my self confidence was at an all time low. To me though it was my only means of being able to "socialize". At the time we lived in the country which was lonely and isolating. My husband was working out of town a lot so I was there alone with our daughter. It wasn't that I couldn't go anywhere but rather during my painful flares I wasn't able to leave the house much. I felt connected. Since our move to Lititz a year and a half ago I've come out of feeling depressed, isolated and lonely. I've had occasions to meet and socialize in person with quite a few people from Twitter. I've developed a support circle on Twitter and Facebook with others who are going through the chronic illnesses just like myself. I now have three active blogs, belong to several online groups from support to art and I can be "social" from the comfort of my Lay-Z-Boy reclining sofa, all while suffering the worse flares I had in the history of my chronic illness.

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Invisible Illness Week Coming Soon!

National Invisible Chronic Illness Awareness Week is held annually in September and is a worldwide effort to bring together people who live with invisible chronic illness and those who love them.
It is a time to bring awareness to the nearly 1 in 2 people who live with a chronic illness, about 96% of which is invisible. I'll be participating in some way so stop back often or follow this blog for updates!



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Fighting the battles

I want to first say that this is a very emotional post but I think it's honest and necessary for me let out.

Some days I want to fight like hell to combat these disorders. Then there are days when it seems to much to bear and I wish God would just let me go, take me. I almost died five and a half years ago giving birth to my precious daughter Madison. At first I was panicked knowing I was going to die, desperate to live, begging for them to do something, anything. One of the young nurses prayed with me lying there waiting for the doctor to figure something out. They'd already tried everything they knew to do and nothing was working. I'd already lost all of the blood in my body which they'd replaced and then some, 9 pints. Finally the doctor asked me for my permission to try one last option, a hysterectomy. It was a risk, even more dangerous as it would cause more bleeding. He told me that I was already dying and that I may not survive the operation. Even knowing that I said okay, I was done fighting. As they were wheeling me into the ER I suddenly felt calm, peaceful, unafraid. It was a peace that is extremely hard to describe. I was surrounded by a bright light, everything was white. It wasn't a blinding light like the kind that hurts your eyes, more like everything around me was just no longer there, it was beautiful. It was then that I heard a voice. It wasn't an audible voice like someone actually talking to me. I didn't hear it with my ears, I just heard it. I heard the simple words "it's not time". Then nothing. When I do remember opening my eyes I was in a regular hospital bed next to a glass wall. The first thing I asked was "what day is it?". My husband, who was sitting beside my bed told me it was Tuesday, 3 days had passed. I was alive.

I no longer have a fear of dying. What I'm afraid of the most is the impact on those I'll leave behind. My family, my friends. I don't want them to hurt, to experience the pain of my passing. I know I may not die anytime soon but there are days when the physical pain and suffering is so severe that I wish I would. I just want relief. I don't want to suffer. But yet... I'm not done. I don't feel that I've yet accomplished what I was let live for, even if I don't know what that reason was. So for now I will keep fighting until the day when that voice finally tells me "it's time".

Trapped

My physical pain is becoming more excruciating every day. My skin hurts, I can't stand my clothes touching me, the blankets on me at night. I can't take a shower even with the lightest spray, anyone touching me, especially to rub my arm or back.

Eating is becoming more difficult. Most foods hurt going down then cause stomach and abdominal cramping. I'm losing weight I'm sure. Even soft foods, they go down but the cramping starts. Nothing tastes really good anymore but I'm so hungry. I eat even knowing how much I'll suffer but it doesn't seem to be enough. Constipation is a major problem. Taking all of the vitamins and minerals is making my esophagus very tender and sore. I'm pretty sure this is all due to the sjogrens and IBS.

My muscles cramp. I'm pretty sure a tendon in my ankle has torn after a severe cramp one night, too much walking aggravates it. The back muscle cramping makes me feel like I'm having chest pains, it radiates.

My bones hurt. Everywhere.

My joints are sore and very tender to the touch and more with use.

I'm not sleeping well, waking up almost every hour during the night. I can't always fall asleep during the day for more than an hour. I'm so tired.

I'm emotional. Sad, scared, confused, forgetful, angry, numb, lost.

Trapped....in a body that's broken, worn out, attacking itself. No one should ever have to suffer this way. No one.  

Pain, pain go away....

Today has been a total blur of pain. From the time I woke up I was barely able to move. My joints were all swollen and very tender to the touch. The center of my back felt like a spike had been driven through it sometime during the night. I'm thankful that Jon was off work to help with getting Maddie off to school. Just brushing her hair was painful and exhausting. I wanted so badly to paint today but was only able to apply a coat of gesso to my painting. I sat most of the morning with the heating pad on and off on my back. When I finally felt able to attempt something constructive, I made a batch of Rice Krispie Treats. That alone exhausted me to have to take a nap. I slept about an hour and a half, waking up feeling worse and hurting even more. Later, after making dinner and cleaning up, I was clearly done for the day. Time to sit, again. Sitting down and staying down is the hardest thing in the world for me. I've always been active and knowing that I can't hurts more than the pain itself. Pain, pain go away ....forever.

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

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.

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!!

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.

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.

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.

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!"...um, 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.

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.

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't...it 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.

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.