That never means that we all flock to try it. That means we can choose to research it if we wish and talk to professionals about it if we wish. For us, I think that we find remedies that work for us that we don’t necessarily learn from doctors. Sometimes grandmothers or next door neighbors are the best people from whom to learn.

Does this mean I eschew doctors? Of course not. I hire a doctor the same way I hire employees. I interview them, find out their views on pain, pain meds, and treatment plans. Based on what I find I may or may not use that doctor as a consultant. Doctors work for us, not the other way around. We hire them. We can fire them. It’s easy.

I treat my PN with vitamins and supplements and diet. I am vegan and have been for years and years. It helps. Do you have to do the same? Hell, I don’t care. You have to find out what works for you and do it. And if you learn something else to try, you can do that too. I think we all have to keep trying to control our PN pain the best way we know how. And that’s my philosophy on pain, PN and life in general.

Soldier on.

More Lines Eligible For Federal Funding

By Shankar Vedantam

Washington Post Staff Writer

Tuesday, July 7, 2009 Hundreds of embryonic stem cell lines, whose use in the United States had effectively been curtailed

Urge FDA to Protect the Rights of People with Pain – The Petition Site

The U.S. Food & Drug Administration is currently working with makers of long-acting opioid pain medications to devel (4075 signatures on petition)

I needed to remove myself from a group that I was participating in. I was drawn to it because of the intelligence and insight of some of the participants but then one discussion seemed to go down hill as they sometimes do. I do not shy away from an argument or a confrontation but I was not in that particular group to argue over anything. I liked the people and thought I could learn a few things. I guess I did learn something but not exactly what I had in mind. LOL

It has also been a painful morning. A bad headache and very painful feet so  far today. I was feeling pretty good yesterday and neglected to take my medicine. Payback. When will I learn. LOL

The last day of my all too brief time away from work and I don’t want it to end with this crappy headache and my feet acting up this way.

If Jan or Linda are listening in, I will get in touch or drop a line if you like. That goes for anyone else as well from the group.

Tizz

My mother who had severe panic attacks, agreed to let him poke her, but that is all. From that he suspected she might have it, but it went no further.
I worked for Adam Meldrum and Anderson, also known as AM&AS, then for The Bon Ton which took over later. I worked an extremely physical job in the receiving department, and maintenance department for 23 years. My neuropathy got to the point, I just could not handle it anymore. My doctor kept writing me notes of limitations, but they where not understanding at all. He finally told me that if I continue, I will regret it later in life. He said he would write any papers I needed. I put that off for a little while, and took computer classes to get familiar with the latest Microsoft Office software. Then when I could not stand it anymore, I had him write out the papers.

I was on New York State Disability for six months, then the long term disability plan I was on through The Bon Ton kicked in. They helped me get on Disability. That process took several lawyers, and about 1 1/2 years. Then I went for call center training at The Staler Center, or also known as Olmsted Center.
After I finished that course, the doctor found neuropathy and carpel tunnel in my hands. I could not type fast enough for a desk job.
I am now working a part time job as a cashier at Sears. I love it there. They treat you as if you are part of their family. So far my legs have held up reasonably, but I do not know for how long. My doctor says my neuropathy will get worse.
My mother died of breast cancer that eventually went to her bones, then her liver at the end. She went in the hospital Easter night, died the following Friday. She suffered with it for many years. I lived with her, and helped take care of her. I now live with my girlfriend Nancy who I have been going with since 1991. We plan on getting married in a couple years. She also is on SSD, and has Cerebral Palsy.

Sincerely,

Brian A
http://www.geocities.com/buffalo1850
brian1850@msn.com

Moderator of
http://health.groups.yahoo.com/group/Peripheral_Neuropathy/
http://health.groups.yahoo.com/group/Peripheral_Neuropathy_Sister_Group/
http://groups.yahoo.com/group/Friends1850/

The world slowed down a lot in a nanosecond while this word ran some loops in my head. Eventually the running stopped and I said, “That’s cancer”. And so it was.

Then the words chemotherapy and surgery and radiation were thrown around a lot along with tests at all hours of the day and night. Some of them were not much fun. If anyone asks you if they can take bone marrow out of your hips, just tell them not today. And walk quickly away. LOL

After one cycle in the hospital, I was released and became an outpatient. When the doctor talked to me about chemo, I thought I listened very hard. I did not listen close enough. I just did not hear everything I learned later that I needed to hear. I was much unprepared for my first outpatient cycle. It did not go well.

But eventually they all ended. There were five outpatient cycles and 17 radiation cycles. Surgery was not an option because the tumor was too big. I have been cancer free for almost 4 years now YAYYYYYYYYYYYYYYYYYYYYYY! LOL

I had a cocktail of chemicals and medicines called “R-CHOP”. That is the first initial of all of the drugs and chemicals used in the therapy. Little did I know that one of them could have a very unpleasant side effect called Peripheral Neuropathy (aka PN). I had it in my hands and my feet. It started out as just numbness. When I would see the oncologist, they would see if I could button my shirt. It was not easy but I was able to do it and eventually it left my hands and they returned to normal. My feet won’t do that.

They are numb while they are on fire, while they get THE MOST interesting electrical shocks you ever could imagine, there are pins and needles and there are these sudden sharp pains that always seem to surprise. And I take a powerful pain medication 3-5 times a day.

Nights are tough. Sometimes I am up and down all night. Sometimes I sleep through the night. Mostly I don’t. My feet LOVE cold water. Cold water really helps with the pain. Why would there be numbness and pain at the same time? Well, I can’t say exactly except to say that the nerves and the brain can play funny — and, not so funny — tricks on each other.

The medication that I take was developed as an anti-seizure medication. It’s pretty strong stuff and I can only have it renewed for 6 months at a time because it’s highly regulated. I have run out a few times and boy did that suck. I don’t like taking such a highly intrusive drug but it works for now. I also don’t run out of it anymore. LOL Lesson learned! LOL

It leaves me feeling wasted a lot of the time, though. I also don’t think as clearly as I once did. I can look at something for a few minutes that I had just done before I recognize it. That could also be because of my age and or because of the chemo. There is something called “chemo brain”. And I do display symptoms of that.

I have a hard time walking. LOL I used to fall over sometimes. Fall up stairs. Fall down stairs. Fall stepping up a curb. I don’t fall much anymore. I have learned to stay focused on the path in front of me. If I turn to the side, I feel like I will fall over. If I close my eyes, I begin to fall over. I stagger. I can’t walk a straight line. Sometimes I am pushing myself away from the wall because I have started to walk into it. I had one job, where I was up a 14 foot ladder pulling cable. A rickety wooden ladder. What a stupid thing that was to do.

You see, the brain does not know where I am because the feet are not communicating with it. One of those silly games the feet play on the brain.

I have found that the numbness is traveling up my left leg. We’ll see where that goes. Yeh, I know, UP. LOL

But like anything else and like many others, I have learned to live with it. There are many types of PN. As painful as mine can be, I am in awe of what others go through and how they not only survive but live their lives. God bless them, every single one.

So there you have it. There is more, of course; isn’t there always? LOL

I hope my story has been helpful for you. Maybe you have learned about those “tingling” sensations that are lots more than just “tingling” sensations. Or maybe about that numbness you just can’t figure out.

This is also called “Diabetic Foot”. And diabetes is a cause of it. We don’t know all the causes. Sometimes, it just shows up uninvited and unwelcome. If anything I have described sounds even vaguely familiar, get yourself to a doctor and soon. You will need to see a neurologist and they will probably need to run some tests that won’t be much fun. But it is so important to get this handled.