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.

Busy Bee

It's been a long time since my last post and a lot has happened. My husband, Nate, and I have bought our first house! It's small, but it's ours and we're very excited. I pushed my luck the day of the move and the next couple days and overworked myself. I was just too excited and couldn't stand to sit there and look around and all that needed to be done. So, needless to say, I've been paying for it. I've been in a lot of pain the past several days. I spent most of Monday in bed. I've also managed to catch a cold. As long as it's gone before we pick up our puppy I'll be good. Yes, I said PUPPY. Nate and I are picking up a dachshund puppy we've named Cooper, on May 2nd. He was born on March 7. I am so excited about this little guy I could never verbally express it. (Nate still thinks that the main reason I wanted this house was because there is a doggie door in the back. hahaha)

I've also been working at setting up a group on Facebook for my artwork and crafts, as well as a blog for them. I wish I knew more about the internet and web design. Thank God for free web templates and layouts!

It's been a long time since I've seen any of my doctors due to the move and stress and pain. I see my pain management doc on Monday, though, which is good and overdue. I took a nap for what ended up to be 2 1/2 hours today. I know docs say that folks with insomnia should avoid taking naps, and yet I take one nearly every day. I can't help it. I love my naps. They save me. I take the largest dose of Ambien CR as well as Requip at night which should knock me out, but it's still always "if-ee" if I'll actually sleep ok or not. Hoping for an "ok" night sleep is pushing it. When you've tried as many pain meds as I have, they tend not to affect you as much as they do the "every day" person. I'm even taking 3 Vicodin a day for pain control. This is like taking Tylenol or Aleve for other folks. When I say that I'm in pain, I'm not exaggerating.

All in all, life is good. Days can be long and difficult, but I have my art, crafts, family, friends, and critters to get me through it. Fibromyalgia has also given me a different perspective on life. It definately makes you set your priorities. I've learned that if I have to seem a bit rude or standoffish to better care for myself, than I need to do that and not feel so horrible about it. I try not to be rude though. Just because I'm in pain all the time doesn't give me the right to be mean to people. The one thing that I still desperately need to work on is fitness. I've been given a home exercise program and I haven't been doing it. It's hard to push myself to do even 15 minutes on the bike when I'm hurting and so dang tired. But I need to convince myself that the effort will be worth it...and I'm going to be hurting no matter what....so I might as well take better care of myself physically. When we get Cooper, I'm definately going to be taking several walks a week which will be great. Maybe I should try to get back into Wii Fit. I did really enjoy that while I did it. It just got a bit old after a while. "Stop making excuses, Linz, and move your butt!"

Goodnight everyone! I hope you're already having sweet dreams or are on your way there.

Home Exercise Program

Today I finally got a customized home exercise program from one of the physical therapists that I've worked with in the past couple months. I was getting frustrated with physical therapy. I've been doing it off and on for over 6 years and nothing has been very benificial. The last couple months I was supposed to go three times a week. At appointments, they'd do some massage, TENS, and apply heating pads. I can do most of that at home, except for the TENS. I wanted to know what I need to be doing activity wise to maintain better physical health. For regular people, 30 minutes of aerobic activity is suggested each day. For someone who has Fibromyalgia, I was told to do 15-20 minutes of low-impact aerobic activity every other day. I was told to never exercise on consecutive days, to only exercise every other day. The physical therapist told me that stationary bikes can be better for fibromyalgics than treadmilss b/c the bikes take some pressure off the spine. We have a recumbent bike, which has an actual seat like a chair, which is even more supportive. Then, he looked at where I most commonly have pain, in my neck and back, and showed me stretches that would be most beneficial for me. He also suggested getting a swedish exercise ball. I do have one, but it's not big enough. The physical therapist suggested one that is 65 cm around. You want to be able to sit on it and have your legs comfortably at a 90 degree angle. He said that most of their patients who have a home exercise program have swedish exercise balls. They're good for stretching out and for sitting on. The PT suggested that I use the swedish ball mostly for relaxation while watching tv. I can use it to stretch my back out, take pressure off my spine, roll around on (slowly and with control), and strengthen my core with. Strengthening my core will help take pressure off of my back muscles. All in all, I was very happy with my appointment today and found out the answers to my questions. When you have fibromyalgia, you'll have spurts of day when you're feeling like you can work out each day, and then weeks when you don't feel like you can do much of anything. The key is balance. Even on days when I'm not feeling well, if it's scheduled as a day when I need to do some aerobic and stretching activities, then I can sit my butt on the bike and slowly pedal for 15 minutes, to help maintain my muslces. This is very important and I look forward to seeing what kinds of benefits that this will have for me.

Bringing new energy...

I recently began to sell some of the arts and crafts that I make on etsy.com. I had always been curious to see if I could actually sell my work and now I'm finally giving it a go. Art has always been such a huge part of my life. I've always enjoyed doodling and playing with various types of media. I remember when I was little and my mom would clear off the table and lay out huge sheets of paper for my little brother and I to fingerpaint on. It was great!! Now, I paint, draw, sew, make collages, play with photographs, and making alterations to various items throughout my home. Art has always been a great way for me to cope for my day to day stresses, and now, my day to day pain and exhaustion. When I begin working on a new project my energy is renewed for a while and I get excited about sharing my art with others. It's a kind of thrill that I think perhaps only other artists could understand, whatever media they might use, including writing. Just creating something. It's truly rewarding. If you're interested in looking at the things that I've posted online the link for my art and crafts is: www.leelabean.etsy.com

What do you do to help with cope with your day to day pain?