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!

Oh, my aching back!

Too much driving and too little sleep has left me with aches in my neck, shoulders and back today--thank God for Therma-heat pads!

It's been a very emotional week; my father-in-law, who is EXTREMELY dependant came home from the nursing home Thursday morning; a friend from Church passed away and his funeral was Thursday afternoon; Saturday we had a memorial service for my Dad who passed away last week; the house has been full of guests and it's been crazy. We are leaving Thursday for vacation, and are very anxious to get away for awhile (not to mention the Florida sunshine will be great!) The travel day will be a bit painful, but a good night's sleep should help. I'm very much looking forward to seeing my daughter, son-in-law and granddaughter.

I don't know if I'll get to post while I'm gone so there may be a three week hiatus. One thing I've learned about myself is that if I can't be writing, my mind will certainly be busy thinking about writing!

Thanks for tuning in!
Linda

Sleep, blessed sleep...

One of the biggest (okay, they're all big) problems in dealing with the Fibro cycle is getting enough quality sleep. I probably spend more time in my bed awake, hoping to sleep, tha anctually sleeping. I take Ambien CR, which helps me sleep through the night, but I find it difficult to get to sleep. Regular Ambien puts me out like a light, only to awaken a few hours later--and I do mean awake. If I don't take anything, I cannot turn my mind off. I saw it described as "monkey mind" today; pretty good description. All that awake time gives me plenty of time to think. I keep a small notebook on my nightstand so I can jot down a "to-do" or a plot idea (I'm a writer).

Most days I try to take a nap; I used to avoid napping, thinking it would prevent me from sleeping at night, but I find no difference. Most people who know me know better than to call from 1:30-3:30, which is when I nap. I have to wait until 1:30 unless Young and the Restless is really boring. Got to have my daily dose of Genoa City!

I'm leaving for vacation next week; I'll be gone three weeks, so I don't know if I'l be posting or not because I don't know when I'll have internet signal. The first two weeks, hubby and I will be soaking up sun in Ft. Lauderdale, then I'm spending a week with my daughter in Miami. She does a lot of writing and I should be able to get a connection there.

If you're interested in reading my articles, I can be found at: www.helium.com/show/399818. I am so excited that some of my articles are highly rated and I've earned 5 whole cents so far! As you know, I keep a positive outlook on everything--that 5 cents more than I had last week, AND I can say that my writing has actually made me some money! I also have a store at Cafepress with some very cool stuff. www.cafepress.com/plus_attitude Check it out!

Thanks again for stopping by!

Friends and Family

When I was first diagnosed with fibromyalgia, I was so angry that it had taken so long to find what was wrong with me, yet I was happy that "it" finally had a name. There are so many people who know us and quite often a surprised to find that we have "it". They they start telling how that thier sister has it, a cousin of your aunt has it, and five people in your Church have it. It amazes me at how many people I know that has fibro or chronic pain sydrome. I'm a firm believer that we have "it" not because of something we've done, but something we have eaten, drank,lived next door to, or had a tooth filled with. I'm convinced that Aspartame is horrible for people--yet every person on the planet ingests it almost daily. I believe Fibromyalgia is an autoimmune disorder, I believe there is a virus involved and that not finding a cure is going to make the pharmacutical companies that sell Cymbalta, Lyrica, and all the drugs on the market to treat the various maladies associated with Fibro (sleep,depression,pain), are going to be very rich.

Okay, I'm going to get down from my soapbox (carefully) and go take a nap.

May 12th is National Fibroawareness Day-make sure you wear a shirt or pin or something to help others understand what we go through!

Thanks for tuning in!

Cold wintery Sundays

Yesterday we had a Maine Nor'easter, which dropped another 8 inches of the fluffy stuff in our yard. There's no way you could walk across our lawn right now--I'm sure it has about 4 feet of snow. It's March 2nd, for God's sake! Bring on the Global warming!

I have not, and will not venture outside today. There is a frigid wind blowing and it's only in the teens; I'm staying put.

I aggrevated my fibro yesterday. I was feeling so good, and with my obsessive, gotta get it done and done right now demeanor, I sanded the living room walls yesterday in preparation for painting them. Sometimes I amaze myself with my stupidity. I KNEW I would be in knots today, but I did it anyway. The pain is pretty severe so I've taken to my bed, my heating pad and my Darvocet (and laptop). A nap is definately on my list of things to do. I have faith that tomorrow will be better, partially because I have a p.t. appointment, an partially because that's just the kind of person I am.

Hey, I love this writing stuff, but I'd love some feedback/comments!

Fibro in the cold Maine winter

It's a "balmy" 17 degrees this sunny morning and I am dreading the fact that I need to go run some errands for my mother today. It's not just the cold that affects my fibro, it's the heavy clothes I have to wear. I found a nice down jacket I want from L.L. Bean's, but we all know I'm not a Goldwater.

This has been a rough winter; it's the last day of February and we still have over three feet of snow in our front yard. Another 7-8 inches are due for Saturday. How's that for depressing?

It's days like this that I wish I had no other responsibilities than to myself. I would sit and write for hours, catch up on the soaps I missed this week, take an extra long nap, and maybe fold the pile on clothes on my bed. Instead, I will go to my mom's, who has Alzeimers but is able to still remain at home, pay her bills and balance her checking account, take her to the store and maybe play a game of Yahtzee. I try to cherish every visit with her, because her disease is advancing. Another reason to look at Fibro as a blessing. Actually, by helping her, I help myself; I get out of the house and see a very precious and wonderful mother, and friend.

Positively a great day

I've been skimming blogs this morning; blogs from people who have this "dis-ease" called fibro. Believe me, I am not trying to make light of their pain--I, too, deal with it almost every day, in some form or another. But I choose to look at the positive effects of Fibro. Positive effects!? you retort. Yes.

If I did not have fibro, I know that my priorities in life would be totally messed up. I would be working 50 hours a week, stressed to the max, grabbing fast food on the run, not exercising, and quicking running myself to a ragged frazzle. Fibro has forced me to learn about the intricacies of my body; to recognize when I need a nap, a cold glass of water, to stretch, to stop and pray and to think about what it most important in my life. It has shown me the strength of my marriage, my inner strength, God's power and who are my true friends.

My pain level today is a 5; I'm tired, but I have to run some errands. When I get home, I will snuggle under my electric blanket with a book and most likely doze off. I'm grateful that my pain level is not higher.

ALWAYS look for the positive.

"Know ye not that your body is the temple of the Holy Ghost which is in you, which ye have of God, and ye are not your own? 1Cor.6:19

A good day

A good day for me is one with pain at less than a 3. I had very little pain today, not even needing a single Ibuprofen!

I was diagnosed back in 1991 after many visits to a chiripractor, massage, accupressure, accupunture and my regular DO. The chiropractor first mentioned the word, which didn't mean much to me, and set me up with a rhumotologist. Finally, I had a name for the group of symptoms, which was a good start. The rhumotologist prescribed one of many drugs I would be on over the next several years. I can't even remember all of the drugs I tried; I'm drug sensitive, and many of the drugs I couldn't take. Call me vain, but some of the drugs I stopped taking were because of the weight gain. Some made me dizzy, some contributed to my ever-increasing problems getting sleep, and some gave me hallucinations.

I found that when I was "flare" that I just couldn't get to go away, a visit to my DO for a bit of manipulation would quite likely ease the pain in my head. I began missing more and more days of work (I was an office manager in a small company); I even took a sleeping bag and pillows and would nap in my office! I had a very understanding boss who would rather have me at work, even if it meant I closed my door and turned out my light every afternoon for an hour. I was also going to school two night a week to get an associates degree in Paralegal.

Eventually I went to work for a 2-lawyer firm, doing personal injury cases, which I found both fascinating and disturbing. I worked there for almost three years before I just had to throw in the towel. I was in nearly constant flare-ups, depressed, not sleeping and was just plain miserable. I decided that it just wasn't worth the pain for me to hold a job anymore. I had been missing a day a week and my boss was pretty upset, although he really did try to be understanding.

It was a hard decision; I was used to having my own money; now I had to rely on my husband, who had taken a lower-paying, but more-rewarding job. Fortunately, we had no mortgage on our home and only one car payment. Our children were all out of the home so it was just us.
I applied for disability and was turned down, which I expected. I appealed; eventually they sent me for some mental testing and turned me down again. I won on my final appeal; I had an attorney, who barely said a word, but I won! It look nearly 18 months to finally get a check, but the first one was BIG! Along with a monthly check, I was also eligible for Medicare.

So now, I take one day at a time. I don't make too many plans; I have to wait until I get out of bed in the morning to see what I can take on. Somedays, I get up, eat breakfast, take my Cymbalta and Darvocet and go back to bed on the heating pad.

I am SO thankful for my husband; he does all the housework, with the exception of dishes. He's understanding when I just don't feel like fixing dinner. I am truly blessed; I don't know what I would do without his love and support.

So, today was a good day. Tomorrow, I hope will be another. I have found the single most importand thing for dealing with my pain is realizing that it's not terminal. I'd take fibro over cancer,diabetes or AIDS anyday. The pain serves to remind me that Jesus suffered agony that I don't even want to imagine--pain lets me know I'm still alive! A positive attitude is a MUST!

Thanks for tuning in!
Linda