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!



- Posted using BlogPress from my iPad

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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.