The Long Road to SSDI

As I've probably written before, I used to be a productive employee. For years, my husband and I owned and ran an office equipment business; I was the office/human resources manager. We eventually were offered a deal too good to resist to sell the business to a Fortune 500 company, and were officially free to follow our dreams.

I had just finished a degree in Paralegal Studies when negotiations for selling our business began; I thought that my interest in the law, my love of research and my overall wonderful people skills would land me a great job in a law office, and it eventually did. I worked for a personal injury lawyer, and while I loved certain aspects of my job (my boss was great and once I learned the ropes I pretty much ran the case right up until settlement), I quickly grew tired of the deadbeats looking to make a fast buck. All in all, I really loved my job.

I had been diagnosed with Fibromyalgia in 1992 and I was very fortunate that when we owned our company, I could keep a very flexible schedule and take off early, or work from home when I was having a rough time of it. I even had a sleeping bag and pillow in my office and there were many days when I would turn off my phone, turn off the lights and take an afternoon nap. Once I began working for someone else, however understanding he might be, that changed. I had a fairly long daily commute-45 minutes each way-and driving is one of my stressors. Once I got into a flare, it was almost impossible to get out. I was sleeping very poorly, driving, working, driving, sleeping very poorly... you get the idea. There were days when I would tell the secretary to call me on my cell phone and I would take my lunch hour sleeping in my car. I was exhausted and very depressed because I really didn't want to have to get done work, but it was becoming clear to me that my health was more important to me than my job.

I gave my notice on the last day of August; I would work another two weeks and then I would just let my body rest and recoup as much as it could. I ended up working an extra week, and cried all the way home on my last day; pain and frustration had such a grip on me. What would I do with myself, I wondered? I had claimed a nice paycheck of my own for many years and the prospect of having to rely on my husband for money felt pretty heavy on my heart.

I filed for SSDI (Social Security Disability), knowing full well I had the medical records to back up my claim, and I had my doctor's support, as well as a second opinion. I waited six months for the first rejection and filed an appeal. They sent me to a pshchologist who determined that I definately had depression and memory impairmant; six months later I was rejected again. At this point, I was "in for a dime, in for a dollar" as my grandmother used to say, and filed for a hearing. I waited four months and then was given a date eight months later. I decided that I should get an attorney, since by law an attorney can collect ONLY if you win, and I had absolutely nothing to lose.

My hearing date came and I went to virtual court. It was really strange; here I was talking to a judge on a big screen TV, an occupational therapist sat on one side of me and my lawyer on the other. The judge asked me a lot of questions and I answered them truthfully, and told him how much I hated to give up a job that I loved. He asked the OT if there were jobs that she felt I could do, and I gulped. Oh, oh; here it comes, I thought. I'm about to hear that I can be a ....

She simply said that given my pain level, my psychological limitations, my sleep deprivation and need for daily naps, there would be no jobs that she could recommend that I could do on a consistent basis. My lawyer gave a closing statement, and I thanked the judge.

He then did the unthinkable and issued a bench decision; he felt he had enough evidence that he could determine then and there that I should receive SSDI, and awarded it to me. I was completely shocked, as was my lawyer.

It took three months for me to get my first check, but it was a big one, because it was partially retroactive. To have my own money again was an amazing feeling. A lot of people had tried to discourage me from persuing my case after they turned my down the first two times, but I am so glad I listened to my instinct and followed through with it.

Now I write. I can keep my own schedule, get my daily nap and actually make a few extra dollars occasionally. No longer having to start my day in a rush to get to the office has helped immeasurably, as well as not having to commute.

As awful as fibromyalgia is, God has truly blessed me.

Hips and Grips

I honestly don't know if the pain in my left hip is from my mattress or my fibro; I'm leaning towards the bed, since the pain diminshes throughout the day. Why do GOOD mattresses have to be so expensive? We paid a lot of money for this mattress with a pillow top (don't do the pillow-top...waste of money!) and when I received my back pay from disability, I bought a memory foam topper. Don't really like it either. In the summer it holds heat like crazy and I feel like I'm sleeping in a "hot flash." We debated about one of those select air beds and I'd love to hear from you if you have one. They're outragiously expensive--are they worth it?

It's ironic that the most comfortable position for my hips is sitting in my writing chair. God's will perhaps.

My hands have been having problems gripping things, like unscrewing the cap from a water bottle. That can be a pain, since my husband also has bad wrists.

One of the things I have noticed is that if I bang one of my arms or wrists, the pain is multiplied about a zillion times and radiates all up and down the arm. Yesterday I banged my arm into the side of the counter and I thought I was going to pass out, yet it wasn't really a hard hit. There's hardly a bruise.

I have decided that I am going to have to get into better shape. Taking care of a 3 year old for three weeks demonstrated the poor shape I am in. She is going back to her parents today, so I can get into a routine. I want to drop 10 pounds, firm up my thighs and arms and get rid of my fat belly. I didn't get there overnight so I don't expect to lose it overnight; I'll be eating healthier, smaller portions, stay away from the ice cream, lift light weights and walk. I know I'll feel better.

How about you? What do you do to make yourself feel better? Are there certain exercises that help you? Have you lost weight without really going on a diet (I HATE that word)? I'd love to hear from you!

Thanks for stopping by!
Linda

Exciting News!

I have been working very hard at getting some of my writing published on real paper as opposed to web publishing, mostly because I really want my share of the money magazines pay! I have been doing a great deal of writing and researching magazines and their editors and querying them - I got my first assignment! I don't want to jynx myself by adding the magazine's name, article title or the money it'll be bringing to me, but as soon as it's accepted, I'll let you in on it.

Fibromyalgia hasn't been too much of a problem since the weather turned warmer and I can comfortably work a good part of the day, as long as take frequent breaks and almost daily naps. I have found that my new-found passion for writing and getting published has really helped distract me from the day-to-day pain; for the most part, I can push through it, but, as anyone with fibro or CPS knows, there are certainly days when that is impossible.

What is kind of crazy is that I write mostly about gardening and traveling when I should be working to spread knowledge and increase awareness of fibromyalgia. It's rare to see a magazine article that talks about all of the aspects of fibro--maybe it would take up too much of the magazine to list all of the symptoms and problems!

My 3 year old granddaughter from Miami is visiting for a couple of weeks and I have my 7 year old granddaughter here today as well. They are outside in the hot tub, which is about 10 feet from where I sit. From the sounds of things, I think they're enjoying themselves. They entertain each other so well that I hardly have to do a thing. I just wish they hadn't outgrown naps! I could use one right now.

Summer, finally!

Maine weather makes you appreciate two days of good weather in a row, and we've had several great days (except for today). Friday was warm, sunny and dry and Saturday was as perfect as days ever get in Maine. We went to the coast (Camden) for the day and I was able to kayak for a few minutes (Camden harbor from a kayak is just beautiful!), had a wonderful crab roll for lunch and then played 9 holes of golf at Northport (my score is my age--just for 9 holes!). My husband is so wonderful about understanding my limitations and just encourages me to do what I can do.

I am a bit lame today, but the memories were worth it.

Today is cool and rainy, so I am achy, but happy because my daughter and granddaughter are here for an extended visit from Miami. Nothing a quick soak in the hot tub won't fix.

I have been writing every day and am excited at some of the opportunities that have come my way--looks like 3 of my poems are going to be published--two in fairly well-known magazines! I am working towards my goal of writing about my travels, but I have discovered that I really need some "clips" to be taken seriously as a travel writer. I write about everywhere I go and try to come up with a different take on things. Hubby and I are going to take a month-long trip next August to Wyoming/Montana area fishing and golfing--hopefully I can generate some interest (and money!) writing about the experience.

As far as my Fibro is concerned, I have found that gardening has helped me a lot this year. I cannot rake, but I can pull weeks like crazy and it helps stretch out my neck and shoulders. I just have to realize that I can't do it for hours on end; a little here and a little there. My flower beds are really lovely this year. Ooh, I just discovered I can add pictures!!!

I would love to hear from anyone interested in sharing their fibro/gardening/writing experiences--please feel free to comment!

Thanks for stopping by!

Linda

A New Chapter

I can't believe how far I have come, technologically speaking. I have been working on my very own website! It's not ready to launch yet, and how I'm really not sure what I'm doing, but somehow I feel as though I am moving forward.

I have begun a writing job, writing articles for a website that sells newsletter content. Some of the topics I have to write on are SO boring! I had to write ten articles on a subject I knew nothing about--I sure know about it now! At least I am making a few bucks for my writing, which is going to go towards a new laptop, then towards paying off a credit card, and then to building an account for taking some of my granddaughters to Disney next fall.

This laptop is on its last legs, but I am getting some upgrades that will help me limp through until I can get a new one. I fell in love with one at Best Buy last week and I could have put it on meester master card, but I resisted, since I had made a pact with myself that I would buy one with writing earnings. I'm gonna do it, I am just so sure!!!

My fibro has been present, but I refuse to stop what I need to be doing to give into it. I was just dying to get out into the perennial beds and rake, and darn it, I did it! I hurt, but it's a good feeling to know that I did it.

Well, it's late (for me) and I gotta go to bed.
Thanks for visiting!
Linda

I've had enough !

It's April 15 (tax day, ugh!) and there is still snow in my yard. I don't mean a little--just outside my front door are banks 2 feet high! I shoveled and path (and I'm suffering for it!) to my little greenhouse today in hopes of spending some time in the warmth. I can lose many hours out there with my hands in the dirt. It's great therapy for me and I wish I could do it year round. Many years ago, I owned a commercial greenhouse. I had a full time job in a family business and would work all day, come home and fix dinner for hubby and 4 kids and then go to the greenhouse until midnight during April and May. I loved every minute of it, but had to eventually give it up when all the dust and mold spores brought on asthma and allergies.

I've been incredibly busy writing. I write at Helium.com and just finished up a competition in which I won a whopping $36! It doesn't sound like much, but it represents a lot more to me--I'm a professional now! It also got me a writing job, writing articles for a company that provides newsletter articles to their clients. It doesn't pay a lot, but it will eventually buy me a new laptop, and I hope the credentials eventually lead to a agent or publisher taking me serious! I have written a novel and would love to see it published one day.

I had a flare last week but I was determined not to let it get to me. I rested when I could, kept "doped" up, watched what I ate and drank and kept busy. I like being recognized as a writer instead of a victim of fibro. The rest of the week is predicted to be warm and sunny, which helps me tremendously, physically and mentally. Go, snow, go! (Hey! A poem title!)

Would love to have some feedback--anyone out there???

Thanks for stopping by,
Linda

Bringing Fibro to Florida

Two more days and I have to go back home to the cold of Maine. I quickly acclimated to the warm climate here in Maimi and I am dreading being back to wearing a heavy coat and actual shoes and socks.

I've had two minor flares in the 2-1/2 weeks I've been here--I know the warmth really helps and I wish I could not have to deal with Maine winters, but that's not gonna happen for awhile. I wouldn't want to live here in the summer--too hot to take a breath in August and I can only take air conditioning just so long before it makes me achy. I used to work for an attorney who kept the office chilled enough to have a meat locker; to accomodate me he moved me into my own office and turned off the AC in just that room.

I was able to play four full rounds of golf since I've been here--not good golf, but golf nonetheless! There are two pools and a jacuzzi at the resort we were in; I don't know which one felt better, so I kept alternating...

I also got jubilant to receive an e-mail from a publishing house who wanted to publish my novel and a poem I wrote--only to find that it was a scam. Bummer. I'll keep writing and keep sending my work in--if it's meant to be I'll get a great deal and live happily ever after. (That was humor, folks)

I'm thinking that my granddaughter has the right idea--a nap. A nap is rarely a bad idea.

Thanks for tuning in!