P.S.

Social Security....right...last topic. I'm still waiting. I had my hearing on Jan. 24th of this year and was sent to see a mental health doc on June 24th, to make sure the pain's not in my head I suppose (like many experts and non-experts like to assume). Still no word on getting disability...I hope I hear soon.

Gone Away

I was asked why I hadn't kept up with my pain blog and I don't really have an answer. The best I could come up with was that my life's been turned upside down over the past I don't know how many months...and a year or so apparently, and I lost it. But I'm back and I've never lost the need to help my fellow Fibromyalgics out. And sadly, I'm learning that there are more and more of us out there every day. It's kindof scary. Chronic pain seems to be sprouting up everywhere lately and those who are newly diagnosed should never have to navigate through this overwhelming experience alone. That's why I started this blog and that's why I will continue it. It's also why I'm very serious about writing a book about all of this. Most texts out there are medical and we all need more of a personal look at what the day to day really looks like and how it impacts us, the people we love, and those who care about us. You guys are not alone. All questions are welcome and I will do my best to help you out to the best of my ability.

I hope you have a relatively pain-free day with people who make you happy :) ((gentle hugs))

SSDI Attorney

Hey everyone! I know it's been forever since I've posted and I do have a few updates.

I met with a Social Security Disability attorney and he took my case. I wouldn't get much each month, but it's something. The only thing is that the waiting list for a trial is 18-24 months. So basically, I met with him and when the meeting was over he said, "Talk to you in 18 months!". In the meantime, I'm keeping a daily pain journal for him for more concrete evidence of my day to day experience. That way, when the trial actually happens I have a written log of events and don't have to try to remember...it doesn't look good.

My husband and I also joined a gym, Bally's! I was so excited and since we've been going I've loved it so much more than I thought I would. I was a bit nervous about what my pain doctor would think, but when I had my last appointment with him and told him about the gym, he was really excited about it. He said that exercise is like medicine for people who have Fibromyalgia. The only carido machine that doesn't hurt me is the recumbent bicycle. The elliptical machines are nice too, but it actually makes my neck tighten up more. I've also been doing some of the weight machines for my legs...and just a couple for my arms. I really limit my upper body stuff b/c my neck muscles are so bad. But it's been so great and it's nice to have the extra activity to do with my husband.

I'm also happy to report that I took the advice of my dear friend, Sarah, and have begun writing her "aunt", who also has Fibro. We've been chatting for a week or so now and it's been so great to have some steady contact with someone who understands what I'm going through. We already feel really close and it's been a wonderful gift. Kathy is a very kind and strong woman and I hope our friendship continues to grow.

Jace Wayland - Shadowhunter by Silentrageleon on Polyvore.com

I love The Mortal Instruments series of books: City of Bones, City of Ashes, City of Glass, and eventually, City of Fallen Angels.

Denied

I was denied the first time I filed for Social Security. I called a contact at the office and she advised that the next best thing for me to do is to file a "Reconsideration" instead of an appeal. Apparently there's a difference. I don't understand all of it, but I'm still waiting to hear about being accepted or denied this time. I'll keep fighting for it even if I have to go to court.

I haven't updated in a long time because I had really gotten into my craft work and was working on getting a decent amount of merchandise together for my first craft fair, which was on October 10, 2009. It went alright. I sold 8 items. The women around me who were regular craft fair sellers told me not to feel discouraged because this fair was one where most people looked and didn't buy. I was told every fair is different and that I should keep on trying. I plan on doing more. I'm trying to figure out how to make my stuff stand out more from other jewelry makers.

Since I've last posted I've had some medication changes. I've stopped taking Fluoxetine and am now taking Cymbalta. I think it's been helping a little bit. I'm still on 4 Hydrocodone a day to help with controlling my pain. I've also been prescribed Clonazepam by 2 of my docs for 2 different reasons. So it's nice to work on 2 things with one med. My family doc prescribed it as needed for anxiety (I'll explain that one in a second) and my pain doc prescribed it as needed for my Restless Leg Syndrome that I get in my arms.

The anxiety happens to me a lot especially in traffic situations where I'm a passenger in the car. But, every few months my pain gets so intense I start to feel like I could be dying. It's not a "I've been shot and I know I'm dying" anxiety, it's more of an afterthought in the back of my head while being in so much pain that I wonder if I'll wake up in the morning. Those are really bad nights for me. The pain and anxiety gets so bad it gets harder to breathe and it's all very intense. It's the worst feeling in the world. Sometimes when it happens I'll get scared even more because I don't want to die....other times I feel a bit content knowing that at least if I'm going to go that I'm lying next to the one I love. To be in a state of mind where you feel like you could be dying in horrible....it's a terrible thing to consider death and life like that once every few months. I can't even describe it to you well.

Now that winter's coming, My body is more achy than ever. I've been wearing long underwear or leggings for months already. It's cold out here in Wisconsin! My poor cousin who's used to California weather is now going to school in Chicago....he thinks it's cold now.....just wait....hah. Poor guy. I'm excited that he's close now though, it'll give us more chances to hang out and get to know each other better.

I hope my site helps others. I've learned of 2 other girls back home, who're my age, who have been diagnosed with Fibromyalgia or similar ailments and I hope that I've been able to help them out some. It feels like there are so few of us to get this disease at a younger age. Mine was triggered in a car accident 2 months before my 20th birthday.

As for my crafts, I want to get to the point where I can sell off of my blog http://leelabean.blogspot.com , but I need to figure all that stuff out. Hopefully a friend of mine who works in web design can help me out with that.

All of you who have Fibro or a similar ailment, I hope you have or soon find a hobby or something that you can be passionate about to keep your going on your difficult days. Fibromyalgia can be a very lonely experience and we need to have our "go to" activities to keep us going through some days. Take care everyone!

Social Security Disability

I just finished filling out a packet for my claim for Social Security Disability.  It’s like the lawsuit I went through….having to detail how much life has changed and become so much more difficult.  I hear that they deny nearly everyone the first time.  It’s so sad and irritating how people fake their injuries and make it more difficult for those who really are suffering.  It’s very hard to think about and not begin to cry.  Maybe I need to consider some serious writing to a representative or even Mr. Obama.  Something has to be done who help those suffering from chronic pain every day in their lives.  It’s a challenging existence.  I just thank God that I have such a supportive and loving family. 

On a positive note, I am very happy to report that Nate and I picked up our dachshund puppy, Cooper.  He’s a joy (and a little irritating at night with all the crying, but he’s just a baby….hah).  We’re crazy about him and he’s been good for me.   

Is he not the cutest thing you’ve ever seen?!  Such a doll!

It Comes Out of Nowhere...

The majority of today was a great day and I got a lot done with my husband. We cleaned up our old apartment and nearly finished moving all of our junk to the new house. My job was to wipe down dusty stuff and vacuum...Nate did all the more difficult work. I knew the physical work would catch up to me sometime tonight. It hit me when I was munching on some cereal. It sneaks up on me sometimes...actually, a lot of the time. One moment, I'm generally ok, and the next, my body is tingly and numb, I get dizzy, and I feel like I'm going to be throwing up. I guess I'd describe it as being sober one second, and the next, being sickly drunk....poisoned. Not good. It feels horrible and there's nothing you can do. Usually, I can feel my pain flare-ups coming on and am able to lay down and slow them down. But sometimes, it just hits....like an unexpected dip in a rollercoaster. All the worst symptoms of having the stomach flu and then some. Your entire body is screaming at you and the slightest movement feels like a violent push/shove. Horrible.

This type of flare-up and pain is just one of the many combinations of symptoms I can get. Another type I can think of to describe is the slow throbbing type. It's like feeling a slow bass beat throughout your body while you have flu-like aches. *bum* *bum* *bum* Other pains throughout the body are like pin-pricks that migrate from ankle, to shoulderblade, to knuckle, to rib.....all over. Some are stabbing that can double you over. They hit like a flash of lightning and as you find yourself bent over from the pain you wonder what just happened. Still other pain can be a constant dull companion that keeps whispering in your ear that it's there. There's a pain that I get pretty regularly around my rib cage and when it happen it feels like there are small thorns on my ribs and as I breathe, the muscles surrounding my rib cage get caught and drag against them as my ribcage expands. Another pain is like a charlie-horse, but you can get it anywhere....even your neck. Sometimes it feels literally like your muscle will tear....even though it hasn't. The "fibro fog" that is a symptom of fibromyalgia, makes my head feel clouded, dizzy, light, distant. I forget things, space out, bump into things.

And now, as my insomnia and restless leg syndrome meds kick in I know that it's time to get to bed. I know that when my meds kick in, that all discussions of anything that need to be remembered (such as a to-do item for the next day) should not be had....because, chances are, I won't remember it.