Thursday, August 25, 2011

Social Security letter

Last week I finally received a letter from Social Security telling me what the decision was in my SSDI hearing. They denied me again. This is the third time. That was a really rough day. I was feeling pretty depressed and hopeless about this whole process, but as I rolled over in bed and read the latest tattoo that I'd gotten, I told myself that I'm not giving up and this is not going to get the best of me.

About 2 1/2 weeks ago I got the word "persevere" tattooed on my right arm where I could easily read it. It was a word that I've been wanting to get tattooed for a while now and it's already helped me during a time when I was emotionally distraught.

I've called my attorney to tell him to go ahead with the appeal process. I'm gonna get disability. I'm not gonna let this long legal process get the best of me. God knows I'm familiar with all the bull you have to go through with the legal system after the car accident lawsuit I had gone through.

I hope you're all feeling well today and that you won't let the pain or others get the best of you either. You're not alone. Take care :)

Friday, August 12, 2011

Still No News...

Still no news from Social Security. It's really getting irritating so I'm going to call my attorney's office on Monday to see if they've heard anything regarding my case.

Yesterday I had had plans to hang out with a friend and get outside. When I was putting my make-up on a really sharp pain started to throb in my side, nearly bringing me to the floor. I started to shake, sweat, and I thought I was gonna throw up. I was fine one minute, and the next a pain flare-up hit out of nowhere. This is what makes Fibromyalgia so unpredictable and make working a real job with a schedule, nearly impossible.

Today, I woke up with some back pain and feeling rather tired. About an hour after being up I began to get more achy and felt like rain was coming. I thought I'd do a little experiment and text a Fibro friend of mine and ask her if she felt like it was gonna rain. She felt the same way I did: achy and tired. So I went to and checked what was in store and sure enough, rain, rain, and more rain. We're little human barometers, we are. Fun party trick, eh? Not really.

On days like today, when the humidity gets worse and rain is coming, it's really important for people with Fibromyalgia to pace themselves. Don't overwork yourself with household chores and such, it could cause you to flare-up rather quickly. Be aware of how your body's feeling temperature wise and dress accordingly. Our bodies have a hard enough time maintaining a stable temperature and when the weather changes it can make our systems go haywire.

Take care of yourselves and know you're not alone :)

Wednesday, July 20, 2011


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))

Tuesday, March 2, 2010

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 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.

Friday, December 18, 2009

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

Monday, November 2, 2009


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'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 , 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!