Good to be home

I have to tell you it's good to be home. You see in March of 2008 we moved to Lakeland so I could be closer to my work. Well, to the main location (aka Disney World), MANY more job opportunities there than at the satellite location I was working at. I had been having problems with my hands for months, increasingly so, but I had every plan on getting a diagnosis, fixing the problem and continuing on with my career. By the end of May I would walk into work, be there about 15 minutes and the excruciating pains in my hands would start, so I went out on medical leave. Assuming still I would get a diagnosis, and get back to work. November of that year I was diagnosed with the neuropathy and found out I would not be able to return to work any time soon so I let Disney know right away. But now we were stuck an hour from our home, friends, and families. My husband had a job there and I was working with doctors I thought could help. They didn't.
So this year, shortly after I was dropped by my doctor, an apartment came available in the duplex next door to my cousin. I have to tell you there were times in my life we were so close. I've told you about her before. We were close as teenagers, then when I moved back from Ft. Lauderdale I lived with her and her family, so we were close then also. But life happens and we grew apart. She's lived here, in the duplex, for 10 years. In fact, 5 of my Aunt's 7 children have lived in these duplexes at one time or another.
My husband and I had been considering moving back when our lease was up in March, but we decided to opt out and move back right away so we could take advantage of the duplex being available, and so I wouldn't have to start with a new set of doctor's in Lakeland, then move in a few months and start all over yet again.
Of course, this has caused some serious financial hardship. Money is always tight without me working. But, this is something else.
I am more active here, spending time with friends and family which is wonderful. Unfortunately, between the financial stress and being more active I have been in a severe flare for about 2 weeks. Exhausted, and hurting.I only will take my vicodin for break through pain, not everyday stiffness, but I feel like I have been taking more than normal. I'm not talking 4 or 5  a day, more like a whole one at a time and taking like 2 a day. This is a lot for me. The other day I took a second one about an hour after the first one, man was my head stoned, but I got rid of the pain, for about an hour.
Shoot, this was supposed to be a happy post... MY POINT WAS.... I'M DAMN HAPPY TO BE HOME IN SPITE OF EVERYTHING!!!!!

Life In the REAL World

The other night my normally very supportive husband said to me (on the phone) "I don't understand how you can be on the computer ALL day at home, but not at a job". Now this made me angry, but I do understand he gets frustrated too being the sole supporter while I sit home all day and do nothing. BUT I am not exactly on the computer all day in the same manner. This blog right here is the most I type. Oh, I may send 2 tweets a day or update my facebook status, maybe once a day, but a tweet can only be 140 characters, or about one to two rows of writing in this blog. I usually have my mouse with me, but not the keyboard, I hit refresh a lot on twitter, I like reading what people are writing on twitter, especially the characters from True Blood are on Twitter, and it's hilarious. Also, I think my favorite person to follow is shitmydadsays, if you haven't read his stuff, you've got to check him out. It's a 28 year old guy who literally types in stuff his 73 year old dad says, and it is so dang funny, it cracks me up!
The computer is my social link to the world. I miss working. I had the best job in the world. I worked for Disney, I made hotel reservations for guests. YES this was the best job in the world. No, not a job you can get rich at, but rich in so many other ways. I could be in the worst mood, had a flat tire, fight with my hubby, whatever, but once I sat at my desk and picked up the phone it didn't matter. Just hearing the excitement in people's voices, whether it be their first trip to Disney or their 50th was motivating and often inspirational.
I left there because of my health. As you know I have fibromyalgia, diabetes, and peripheral neuropathy. The neuropathy was my undoing. At first the doctors gave me a wrong diagnosis of rheumatoid arthritis. Mistaken only because the neuropathy was so prevalent in my hands versus starting in my feet, but then again, I did type 8-10 hours a day. The neuropathy got to the point where I would drive the 45 minutes to work, sit down at my desk, take my first call and the pains would start. Sharp stabbing pains, electric shock type pains. hands and fingers swollen. This is when I stopped working. It took the doctors another 6 months before they correctly diagnosed peripheral neuropathy. The doctor upped my gabapentin to 1800 mg a day, and sent me for occupational therapy. The first night after occupational therapy I wanted to have my hands cut off. I cried all night. The next time I went I asked the therapist to slow it down and he was shocked because he thought he had started extremely slow Needless to say the moist heating pad and hand massage felt good, but if I had to pick another pin up and stick it in a peg I probably would have brained someone good with those damn pins! That was when I let Disney know I wasn't coming back. I spent the next 4 months trying to find a job I could do that did not involve standing or walking, due to the neuropathy in my feet and degenerative disc disease in my lower back, or didn't require much to do with my hands, especially not typing. This was when I applied for disability. I'm still looking, so if you know of a job that doesn't require me to stand, walk, or use my hands, (and I can't get arrested for) let me know, I miss life in the real world.

The Importance of a Good Support System

If you live with fibromyalgia, neuropathy, CFS, MPS, or another "invisible pain illness" there is no doubt you may come across naysayers, negative Nancy's, friends and family who in the least don't understand what you are going through, in the worst... don't believe you. Let's face the truth, it's easier to empathize with illnesses you can see or even are more prevalent, like cancer, heart attack, or stroke. www.fibrohugs.com has an excellent "letter to normals" that I believe should be a must read for everyone, especially those who deal with fibromites in their family, friends, and even coworkers.
When I worked for a certain, now bought out, aircraft parts manufacturer, in sales, I sold 1 million dollars a year more than the next closest sales rep. But, all my boss could see was I had more sick days than anyone else. My last job was at the Disney Reservation center where I had an excellent, extremely understanding boss (he had gout so he sympathized!) who knew how hard it was for me to leave my job there, I loved it so.
So, if you don't have support at home, work, or in your circle, what should you do? An excellent question. I found an amazing support group online. Soulten's fibro support is my favorite. http://forum2.aimoo.com/soultensfibrosupport/errno-1/warmtips.html
This group of people are not only my online support group. They are my online family. Most of these people I met in the fibromyalgia chat room on www.prohealth.com. They do not all have fibro, some have depression, are bipolar, or have neuropathy like me. They are from all over the world, and I don't think I would have made it through the past year without having their support.
One of the hardest things I had to learn was to kick the negative Nancy's to the curb. I cleaned house of the people who refused to believe my illness is not "all in my head". As hard as cleaing my life of these people were, and in some cases they were really long term friendships, I had to. No one should have to prove they are ill. You wouldn't ask a cancer patient to see their chemo treatment for proof would you?
I want to thank my support system. I have the most amazing husband who works 50-60 hours a week, takes care of me and our home too. Sweetie, you are my rock and I love you. To my best friends who I am realizing worry way too much about me and are always there to lend help, even from an hour away! And, lastly to my friend, neighbor, and sister Nan. Somedays I don't know what I'd do without you. You will never know how much the simple act of unloading and reloading my dishwasher means to me... and for that and all the other things you do for me (including picking up my prescriptions in the pouring rain) I love you (and u are NOT a negative Nancy!).

ahhhh disability applications

I knew this day would come, and frankly I am glad it did the first of June rather than having to wait till September like we thought, but I was denied social security disability benefits. Now, let me give you a little background on me..... I was diagosed many many years with fibromyalgia. I am one of those who was probably born with it. Some people end up with FM after a traumatic experience, or a physical trauma. That's not me. I'm the one who always had these very painful sharp pains, even in my early 20's and the doctors were still telling me they were growing pains, Now come on growing pains in your 20's?? seriously, give me a break. Finally many years later i was diagnosed with the FM. FM is pretty dang painful but a flexeril or an ultram once in a while and I could function 95% of the time. Yes, I missed work once a month or once every few months. But, then a few years ago I started really having problems. I developed diabetes type II. And, I don't know if I am just dense or didn't realize the trouble would I could myself into if I didn't pay attention to my blood sugar. To be honest I just didn't realize. Enter diabetic peripheral neuropathy. You must understand it is not the fibro, I worked with the fibro. I worked 40-50 hours, plus I was heavily involved in extra curricular activities through work and also was working on my masters degree. I didn't really know pain until the neuropathy started. I think it may have started in my feet, I've had some pain and swelling there for a few years but it's hard to tell because my left ankle and my left foot have been sprained in 3 areas for years, and also I have nerve damage in that ankle from a car accident so I may not have realized. I did realize when it started to affect my hands. Between work and online classes I was working 40-50 hrs a week and online classes a couple of hours a night so I was typing 10-12 hours a day. My hands started getting inflammed. Then came the pain. A little aching at first, but mostly incredibly awful pains that felt like electric shock, and also sharp pains.
Right now my hands are way pooped out so more tomorrow. I will have my new computer and be able to use my new Dragon Naturally Speaking program, then I won't have to type anymore.
Tonight.... disability denied, Dragon Naturally speaking, and Allsup disability lawyers.