Today I recieved an email from a lovely woman in Ontario, Canada. She searched for neuropathy information and found my blog. She has been diagnosed with neuropathy but not has diabetes. The doctors do not know how she got neuropathy. I hope she doesn't mind if I show you this excerpt from her email:
"Have been struggling with this for about 7 years now. Doctors here don't seem to know how to treat this. I have been on many kinds of medications. (Lyrica, gabapentine, celebrex ect) nothing seems to work. At the moment I am on oxycodone 1 tablet 3 times a day. This is far from being enough. It doesn't even take 1/4 of my pain away. On a scale of 1 to 10 my pain is usually 9 ... I have told this to my neurologist but she doesn't think it is that bad. I am so frustrated with all these doctors. I totally understand their concern with addiction but I was told by a doctor at a pain clinic in Toronto that I would probably be married to narcotics for the rest of my life. The report was sent to the doctor who referred me to this clinic and yet she doesn't think I'm in that much pain."
This is part of my response:
"Unfortunately this is all too common for someone with a chronic pain condition. The most important thing I could tell her is not to give up.
The problem with the amount of pain we are in is it is pretty rare, something like 4-7% of neuropathy patients. So then doctors think we are drug seekers, at least the bad doctors. It sounds like you need a new neurologist. Don't give up because when it comes to chronic pain conditions usually you have to see many doctors before you find the right one. I found this link for you http://www.neuropathy.org/site/PageServer?pagename=phy_int_ca_ontario . Those doctors might be able to help. It is important to keep a pain diary. Include what u are capable of doing and not capable of doing. Make a list of what you need to ask the doctor. Unfortunately the frustration you are going through for someone in chronic pain is not abnormal. It is also not abnormal to have some fog, like short term memory problems. And, no depression is not uncommon. How can you be in so much pain all the time and not be depressed? My doctor put me on cymbalta and it helps with the pain too ..

Have any of the doctors run any tests on you like EMG or other neurological tests? "
Tomorrow is my turn for the doctor. Gotta stand up for myself, get a referral to a real neurologist. I also need to remember to call about my application to receive cymbalta for free. Must do that now before I forget again. Soft hugzzzz to all.
Also, please feel free to email me anytime. Any questions, concerns, frustrations, or if you just need to talk to someone who understands. You will find me at alonelydragonfly@aol.com. Also, I am on MSN chat under brokendamselfly@live.com. I look forward to hearing from you... chele

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.

Help, I Need My Meds!!!

So I was laying in bed (yes, again, this is where these things start, when I am left alone with my thoughts, scary, I know!) with my hands and feet hurting and burning. The burning feels like I am holding my hands over a lit candle. Anyways, I digress already.....
I was thinking of our health insurance. First of all, I realize healthcare is a hot topic right now with Obama. And, of course I haven't been paying any attention so I am not up to speed therefore this is not what I am talking about here. What I do want to talk about is what do you do, how do you pay for, your medication when you have no insurance, or prescription plan.
First of all, most pharmacies now have their own prescription plan. I know our local Sweetbay has one that was, I believe,  $7 for the year. There are 400 medications on the list that cost only $4 for a 30 day supply and only $10 for a 90 day supply, and they even have some free antibiotics. This plan covers 2 of my most important medications, the generic for synthroid (as I have no thyroid) and metformin (for my diabetes), so it's a start. However, I am still without gabapentin and cymbalta, probably my next 2 most important prescriptions.
My next step was to go directly to the drug companies. A good share of drug companies have programs for the less fortunate folks who fall below the poverty line. Cymbalta is made by a company called Lilly USA. You can apply with them at http://www.lillycares.com/. Print out the application and take it to your Doctor. This is the stage I am at now. Pfizer has several different programs. You can find a list at http://www.pfizerhelpfulanswers.com/pages/Find/findall.aspx
I found both my gabapentin (neurontin) and xanax there. The program I am eligible for is Connection to Care. Again it is the same as the Lilly program. Print the application and have your doctor fill it out. Most of these programs also require proof of income, like a copy of last year's taxes. Right now I am at the stage of waiting for my doctor to fill out the paperwork. Hopefully it will be ready tomorrow. I will keep you informed of my status.
I did receive a coupon for 15 free cymbalta from the Lilly cares website, and some samples from my doctor.
Next will be to see if there is any help for my pain meds, tramadol and vicodin. But, they are the least important right now. There may still be some reform with this weird "limited" health insurance plan from my husband's new company. It just seems wrong to pay $85 a week for a "limited" plan that doesn't cover prescriptions.
More to come on this topic!

been a while... time to rant and rave!!

Sorry it's been so long guys!! Hubby started his new job about a month ago and that is going fine, he likes it BUT what kind of job do you have to wait a year for health insurance?? And, they charge $85 a week for this limited insurance plan that I don't understand at all. From what I've been told it's called Key Benefits Administrators. The paperwork I have gotten shows they pay $90 towards whatever your doctor charges, only 6 visits a year, and no real prescription plan. I did manage to sign up for the plan at the grocery store pharmacy so I can get my metformin and synthroid for only $10 each.... 90 day supply. I have paperwork to fill out with a few different drug companies... one to get cymbalta for free and the other to get neurontin and xanax for free also. I have been out of all my meds except my synthroid, and xanaflex and I feel like I am slowly and painfully dying.
One of my best friend's husbands found out a few months ago he is type 2 diabetic. He has been very good about checking his blood sugar, taking his metformin, and his diet. Except the diet part now. My bff is so worried about him because he acts like now that his blood sugar being medicated and "under control" he can eat what ever he wants. THIS IS SO NOT TRUE!! I know because I did the same exact thing. Now I have this burning, painful neuropathy. Neuropathy is caused by the low and high spikes. So let's say my BFF#2's husband sneaks out for the new McDonald's angus burger and fries after she goes to bed, this is going to cause your blood sugar to spike high, then spike low. My friend works a job that requires only good manual dexterity. What's going to happen when the neuropathy in your legs becomes in your hands? And they are swollen and painful all the time and you can't do that anymore??? Please please learn something from my mistakes!! I would call and yell at him myself, but I'm afraid he'd just yell at his wife. She's worried, we've been best friends for a long time and she has seen me go from being incredibly active to housebound in a matter of 2 years, she doesn't want the same for him.

Diabetic Peripheral Neuropathy

What is peripheral neuropathy?
Peripheral neuropathy, also called distal symmetric neuropathy or sensorimotor neuropathy, is nerve damage in the arms and legs. Your feet and legs are likely to be affected before your hands and arms. Many people with diabetes have signs of neuropathy that a doctor could note but feel no symptoms themselves. Symptoms of peripheral neuropathy may include
numbness or insensitivity to pain or temperature
a tingling, burning, or prickling sensation
sharp pains or cramps
extreme sensitivity to touch, even light touch
loss of balance and coordination
These symptoms are often worse at night.

Peripheral neuropathy may also cause muscle weakness and loss of reflexes, especially at the ankle, leading to changes in the way a person walks. Foot deformities, such as hammertoes and the collapse of the midfoot, may occur. Blisters and sores may appear on numb areas of the foot because pressure or injury goes unnoticed. If foot injuries are not treated promptly, the infection may spread to the bone, and the foot may then have to be amputated. Some experts estimate that half of all such amputations are preventable if minor problems are caught and treated in time.

For me I noticed it first in my hands. That doesn't mean that I didn't already have it in my feet, it just means that I was typing 70 wpm 10+ hours a day and I don't do anything like that with my feet 10 hrs a day so my hands felt it first. Inflammation, constant pain, sharp pain, and then the electric shock pains. OHHH the electric shock pains. The are the worst. Everyone I know who has neuropathy and gets the electric shock pains say it's the worst kind of pain they've ever had. Man I had a painful tubule pregnancy, almost died, and those shock pains are worse. The gabapentin does help with the electric shock pains but not the overall pain, wish it did I'd like to be able to function in a normal world.

The picture above shows the nerves (shaded areas) throught the body that are affected by peripheral neuropathy.