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!).

What is fibromyalgia

Fibromyalgia by the Mayo Clinic Staff

Definition

You hurt all over, and you frequently feel exhausted. Even after numerous tests, your doctor can't find anything specifically wrong with you. If this sounds familiar, you may have fibromyalgia.
Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain.
Fibromyalgia occurs in about 2 percent of the population in the United States. Women are much more likely to develop the disorder than are men, and the risk of fibromyalgia increases with age. Fibromyalgia symptoms often begin after a physical or emotional trauma, but in many cases there appears to be no triggering event.

Symptoms

Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day, but here is a basic list:

Widespread pain and tender points
The pain associated with fibromyalgia is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.
Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:
Back of the head
Between shoulder blades
Top of shoulders
Front sides of neck
Upper chest
Outer elbows
Upper hips
Sides of hips
Inner knees
Fatigue and sleep disturbances

People with fibromyalgia often awaken tired, even though they seem to get plenty of sleep. Experts believe that these people rarely reach the deep restorative stage of sleep. Sleep disorders that have been linked to fibromyalgia include restless legs syndrome and sleep apnea.
Co-existing conditions

Many people who have fibromyalgia also may have:
Chronic fatigue syndrome
Depression
Endometriosis
Headaches
Irritable bowel syndrome (IBS)
Lupus
Osteoarthritis
Post-traumatic stress disorder
Restless legs syndrome
Rheumatoid arthritis

Gabapentin

My gabapentin was finally refilled today.

Gabapentin, an anti-convulsant available in the U.S. for four years, not only significantly reduced pain from chronic neuropathy (due to damaged nerves) but also reduced sleep disturbances, improved mood and enhanced patients’ quality of life.


The findings are reported in the current edition of the Journal of the American Medical Association.


Neuropathy, or nerve damage, is the most common complication of diabetes: up to 45 percent of diabetic patients develop neuropathy in the course of the disease. While some patients report a numbness or tingling sensation, others experience neuropathic pain as a very distressing pins and needles sensation or one similar to receiving a series of electric shocks. Diabetic neuropathy pain most often affects the feet and ankles and to a lesser extent the legs above the knees and the arms. Poor control of blood sugar leads to nerve damage, which in turn may prompt the development of neuropathy.


“This is the first study in more than 10 years to show there’s another promising agent for treatment of nerve pain from diabetes,” said principal investigator Dr. Miroslav Backonja, associate professor of neurology at University of Wisconsin Medical School and a pain specialist at UW Hospital and Clinics. “Gabapentin is a very welcome addition to our options for pain control. It is well-tolerated by most patients and stands apart from other drugs in that it doesn’t interfere with other medications.”


In the study, 165 diabetic patients at 20 medical centres were randomly assigned to either an experimental group, which received gabapentin, or the control group, which received a placebo. All of the patients had a one- to five-year history of pain attributed to diabetic neuropathy. The study was double-blind, meaning neither the patients nor the researchers knew who was taking which agent.


At the end of the eight-week study period, patients turned in daily diaries they had kept to monitor pain and sleep interference and also completed an assessment of their overall well-being. Researchers independently completed their own clinical assessment of change.


Approximately 60 percent of the patients on gabapentin reported at least moderate improvement in their pain, while only 33 percent of placebo patients did. In addition, the medication proved to be well-tolerated; two-thirds of the gabapentin patients were able to take the highest dosage tested in the study. The most common side effects were dizziness and sleepiness, although they typically were of mild or moderate intensity.


Gabapentin not only helps the neurontin but helps the fibromyalgia. Without it the worst pain of my fibromyalgia is on my left side, my chest around my left breast, my shoulder joint, and around my shoulder blade in the back, the outline. I get this terrible muscle cramp that feels like a charley horse that you get in your leg. I take 1800 mg of gabapentin a day. I hsve already had that today and am feeling so much better. Normal for me. Hopefully once I get some sleep I will wake up not so stiff and not so sick feeling. I know I am still going to hurt but I'll be able to move my left arm. So I am very excited about that.
Man it's 5 am and I have to be up in 3 hours to go to the thyroid doctor. Why can't they just call and say these are the results of your blood test and call in the meds to the pharmacy. Why do I have to go in, spend my time and pay money I don't have?

My friend Stacey has some fabulous blogs on Fibro:

http://fibroandi.blogspot.com/

http://mylifewithfibromyalgiaandmore.blogspot.com/

enjoy!!! chele

mind racing

I have been awake all night again. Everytime I go to bed my mind starts racing with "I could be doing this" "I should be doing that". The first time I got back out of bed, after laying there 10 minutes, I cleaned the cat box, wrote my friend an email, and made marinade and put the steak for dinner tonight to marinate. This time I was laying there with my mind racing thinking "I should be working on the mural". (But I didn't, my back and shoulders are hurting way too bad). The mural, my "manic" project. It's been a month or two since I started it, and really it's not that involved, but when I can't sleep at 3 or 4 in the morning, I take a xanax or two, then paint for about 15 minutes, it helps calm me down. The funny thing is, Stephen is asleep right there and clueless that anything is going on while he is sleeping. Poor man never knows what he will wake up to find, lol!!! This is a picture from about a month ago. I have started the tree that comes up from the other side of the dresser and added more flowers to this to make some bunches of flowers in places. It's supposed to be kind of abstract cherry blossoms but cherry blossom trees, in bloom, have thousands of flowers all over them. I think that would be overdoing it for one wall!

I shouldn't be writing this. I spent too much time last night researching companies for my hubby to apply to. We've already sent so many. Yesterday he looked up the phone numbers of at least 50 companies we applied to so he can call them and make sure they received them. But, now my hands look like I've been punching walls again. oh well, such is life. For me stress = insomnia + pain. My lower back, hips, and even the middle of my back have been killing me. My legs too. I actually had Stephen massage my legs for me today, well yesterday now as it's 8:30 am. I hope this xanax kicks in soon so I can catch some zzzzzzzzzzzzzzzzzzzz.

be well, chele

OMG

I'd just like to say OMG THE PAIN. The pain of the last week has just been torture and it doesn't seem to be letting up anytime soon, or even lessening, just getting worse. I can say with all honesty that my ears don't hurt, lol. I was so looking forward to spending Father's Day at my aunt's with her, my uncle, and my cousins. We went, and we even took Toobie. I don't know if that was a good idea, my poor baby it was so hot for her in the car with no a/c. I take a big bowl oof ice and feed it to her, she's supposed to lick it herself or drink the melted water, but the spoiled little princess prefers mommy to hold the ice in her hand so she can lick it or chew it. Plus one she loves car rides and two she loves parties at my aunt's. She just loves all the attention and the little kids, she's so good with them. I hate to say Stephen drove an hour and a half each way and we only stayed about 2 hours. I started hurting bad and when that happens I just feel so sick. I snuck off and laid down for a little bit in the spare bedroom but it didn't help so we said goodbye to my Aunt & Uncle and snuck out without saying goodbye to everyone else. I just hate the big "yeah we're leaving, I don't feel well" scene. You know and everyone is "I'm sorry, I hope you feel better". Rather just sneak out quietly and let them have fun. Stephen even offered up an extra green tea on the way home because he knew I had to be feeling bad to leave my aunt's so early. I slept for about an hour but I'm just in too much pain to sleep. Everything aches but My chest on the left side is just so bad, the muscles there in the front and back. The degenerative disc in my lower back is putting intense pain on my hips. And the neuropathy is sending sharp pains to my fingers and toes. And of course the burning. Man, I'm so tired.
Poor Stephen, one of his teeth broke, the molars. I mean he doesn't take care of his teeth, brush them, but still that doesn't mean it doesn't hurt like hell when one breaks like that. I worry about it getting infected or something but there is no swelling in his face. He's just miserable though.

Flare

The past week has been quite a flare. My husband got let go of his trucking job last Friday. I applied for unemployment and 2 jobs for him before he even got home. So far this week he has applied for about 70 trucking jobs, yes 70. The good news is he has 2 job interviews tomorrow. The bad news is only 2 job interviews so far out of 70 applications! Jeepers creepers. I have been so freaked out which of course means lots and lots of pain, not sleeping (even with ambien). My hands look like I have been punching the walls because I have been helping him apply for jobs, so too much computer time for me. He hasn't even been a help around here. Within 2 days he had 8 different piles of dirty clothes AND all the stuff from his truck is still in my living room. These things stress me out and the pain is overwhelming. One good thing is I have been in too much pain and too down in the dumps to have too much (for lack of better description) manic episodes. He did get the speakers on my monitor working and my webcam too. But there is so much to think about, not just rent, utilities, but with no insurance that means no doctors, no medication. How am I going to function without my gabapentin? The electric shock pains will be back, the sharp pains will be worse, and so will the overall pain. Plus, I have to take my synthroid, I have no thyroid, and I have to take my metformin, how am I supposed to get those? Oh and the cymbalta, u can't just go off that.
I am looking forward to going to my Aunt's on Sunday for a Father's Day bbq. Being with my family should lift my spirits a little, I hate Father's Day as I lost my Dad a few years ago.
I have been so much better with my diabetes. My friend, Ronnee, helped me get a new meter so I am checking my blood sugar a few times a day and staying away from the sweets. (thank you Ronnee!!!!!! love u girl!!!)
Oh, the cymbalta is much better since I started taking it at night and so the irrational irritability is soooo much better.
No news from Allsup on this front, just more paperwork to fill out.

Interview Information from Allsup

Dear Mrs:
I am enclosing the information needed to complete the interview to process your Social Security disability claim. Your phone appointment with _____.
I have also included some additional information about the Customer Information Center and Quick Facts about Social Security disability insurance.
Thank you for your cooperation. Please call our Customer Information Center at 866-502-8372 if you have any questions.
Allsup Inc. Customer Information Center (CIC)
CIC is here to assist with your questions about the Social Security disability process. Often, your assigned representative is working behind the scenes making calls to the Social Security Administration or Disability Determination Services to take care of your case. Your representative may not always be available when you want to call Allsup Inc. with questions, but our CIC associates will help take care of your needs. Our associates can check the status of your claim, document your medical updates, and answer questions about forms, the claims process, and any letters you receive from the Social Security Administration or the Disability Determination Services. CIC associates work as a part of your assigned representative’s team to take care of any issues relating to your claim.
It is also important to call CIC if:
Your phone number or address changes
You return to work in any capacity
You have a medical update
The Social Security Administration or the Disability Determination Services requests information by mail or phone
You receive a decision, a check, or bank deposit
Quick Facts about SSDI
If approved, the Social Security Administration will pay benefits back to your date of entitlement. Your established onset date and/or date of filing determine your date of entitlement.
The Social Security Administration determines the onset date of your disability. This may differ from the date you last worked.
In most cases, there is a five-month waiting period after the established onset date before Social Security will pay your disability benefits.
In addition to your initial claim forms, the Social Security Administration and Disability Determination Services usually request additional information. If you receive requests for information by mail, contact our Customer Information Center. Any phone calls should be referred to Allsup Inc.
It is common for the Disability Determination Services to schedule a consultative exam. The exam is provided at no cost to you and is ordered when the disability office needs additional or more current information to make a determination. It is very important to attend any consultative exam that is scheduled.
What Information Do I Need for My Interview?
SSDI Claim History
Date of onset given to SSA
Date of filing for IC and decision date
Recent SSA/DDS notices
Medical History
Contact information for medical sources
Approximate dates of medical care
Medication name and dosages
Dependent Information
Name, SSN, and date of birth
Medical Insurance
Contact information for the health insurance carrier
Workers’ Compensation and/or State Disability
Claim number
Amounts and dates received
Insurance carrier address
Work Attempts
Contact information for the employer
Dates of employment
Approximate monthly earnings
Direct Deposit
Bank Name
Account and routing numbers

email from Allsup

Greetings Michele:
Thank you for choosing Allsup as your Social Security Disability Insurance (SSDI) representative. One of the many advantages of working with Allsup is that we assist you with your claim while you stay in the comfort of your own home. Now, you can do even more from home and online by visiting Allsup Place where we can stay in touch and you can check the status of your SSDI claim – anytime. New For YouAllsup Place is a new community that is being developed specifically for our customers who are looking for support, not only from Allsup, but also from other organizations and people with disabilities. In Allsup Place, you can share experiences and information beyond just SSDI, and keep up-to-date on the news that affects you and your family. And, at a time most convenient for you, you can see what’s going on with your SSDI claim, learn more about the work being done on your behalf and connect with customer service. In the not too distant future, you’ll even have online access to more details about your claim, as well as our Customer Information Center.Get Started NowTo visit Allsup Place and to access your claim information in a secure way, you’ll need to register.Visit Allsup Place (www.allsup.com/Allsup-Place.aspx) and click the Register link in the purple tab at the top of the page to create your personal profile.Be sure to save your custom User Name and Password as you will need these pieces of information to access your account and information – on your time, anytime. And in order to activate your account to view claim details, you need to register with the same e-mail address that Allsup has on file as a way to contact you.Once you have registered, click on the Account Activation link on the left hand side, and insert your confidential Activation ID and Activation Key – provided for you below.
And if you need help getting around Allsup Place, stop by for a Demo – link accessible from the left hand side – for your personal tour of Allsup Place.We hope you find Allsup Place to be an important resource that can deliver True Help when you need it.Welcome to Allsup.