Sorry !!

Sorry for my absence !! I have been battling feeling sorry for myself moments and not caring frankly about crap. Plus it doesnt help when your sicker than a dog, coughing until you puke and pulling a muscle in your ribs from coughing !! I want to let everyone know the Nuycenta is nice but it is not a miracle cure or 100% pain remover. But I like it over all the other pills I have popped. Here I am telling about all the pills I take or like or dont like, and you all wonder why we sufferers of this disease get depressed. It quite frankly is hard not to. But I am on meds for that as well. I would love to wake up from this nightmarish dream that some may call LIFE. I am tired, I am frustrated, I am cranky. I wish all that have this disease a better day a better night, may all of our tomorrows be less painful so we can live free of our naughty nodules. God Bless everyone.

Nuycenta ??

I started a new med for pain. So far I cannot comment on it much. I feel rough like I just rolled through a marathon. I get very groggy after 45 minutes of taking it. It lasts for several hours. But I still feel the burning and shooting pains. I still need to give it time. I want something to work anything to work, I want to work..... I go to my Doc tomorrow I will tell him whats happening thus far. I hope my foot friends out there are at least comfortable tonight. Keep telling people what our disease does to our feet and our lives.   GN

HAPPY BIRTHDAY GARY ! Jan,22,2012

Word of the day is Garbage.  I refuse to call my tormentors by their given name. So today their names are Garbage. Painful before I even got up. Nice. Oh well. Today has started and my new Fibroma Friend in the U.K. has celebrated his birthday without a Happy Birthday from me and for that I apologize. Happy Birthday Gary I hope it was great I read your Blog sounds like your feet were boycotting your Birthday. I am sorry to read that. The treatments are just that treatments they are just trials and errors on the researchers part. It might slow some it might not. They are just guessing and today I am tired of guessing games. In my chair, warm sockies on, pain pills on board and all I need now is a good book but instead I will Blog for a bit. I hope all that suffer even mildly with this disease have a calm and comfortable afternoon and evening. May we all be blessed in 2012 with a cure. Love from my living room to yours. At least we have found a couple more people Gary its only taken me 2 years to find 1 person and here you have found another person  on your ledderhose blogother than me.. Great start to a new year..

Fruity Fibroma Friday the 20th, 2012

I feel as if until now, I have been running my life it's a marrathon. Wow and then things change like the hours on a clock. I don't understand how this disease works but I know that its got bad mojo that accompanies it. More studies need to be done on and with the ones of us that have this disease. Whether its mild of painful or someones family member or members have had it but they have not. What triggers it ? What starts the nodule formation ?  What will it take to get more research ? Money awareness both ??? I will keep everyone posted on the change in meds, I am curious but not optomistic due to all the other meds and treatmenstsI have taken and done and the results have been poor. Another Forum if you want to have a read  or Join is Plantar Fibroma Forum.freeforums.org . Or another Blog like mine is  ledderhose.blogspot.com. This one is written by a young man in the UK that also suffers from Plantar Fibromas. Thanks all remember to spread this so that even though you don't know someone other than me, one of your friends might know someone that knows someone and so on. Good Night my Web Buddies .. May we all have a comfortable nights sleep..

Fibroma From hell 1/19/2012

Discouraging night SHOCKING  it wasn't my feet. My left hand has sparked back up again and gave me Hell all night. So I should go to another Doctor but why ? So he/she can turn me away because there is no contracture or a nod or a chord sticking out. Thumb won't bend all the way to palm anymore (trigger finger). I am discouraged again. I have found someone else that has this she used verapamil and radiation for her treatments. Neither have helped her so far and None of mine have helped me. How do I go forward. What do I do I want to win this social security disability not just because I deserve it but to pave away with others like me with pain and no treatments have helped them either. I want to express how ugly and disforming and dibilitating this disease truly is. Do not believe all the articles out there about how this Disease has no pain either with the Feet or with the Hands. Its just not a fair disease it doesn't pick how mild or severe its victim will have it. Nor how many nodules it will produce in one foot or two. Or if the disease will travel and plop its nastiness in the palm of your hand or hands.And how mild or severe it will be there as well. Or how long or short the process it will take to make your life a living pain.

FIBROMA THE 17th, 2012

Its late I know, but just wanted to show anyone out there with this crap, how even sleep can be effected.They ache , medications are on board just waiting for them to kick in now. So I thought I would Blog for a bit. I found someone with this disease he is in the UK Happy but sad.  I wouldn't wish this on anyone not even my ex. This guy he Has it almost as bad but he hasn't had surgery though. I read some interesting facts today and just when I knew this disease was rare it was pointed out to me louder and clearer. I have been struggling with the D word (depression) and then I loop out of it and after reading and researching today, I feel the loop starting again. I am angry and even more frustrated than before. This disease has no voice, no Foundation, no cause, no cure. Oh but what it does seem to have plenty of are forums for people to get together and chat amongst themselves. UUUGGGHHHH. We the Non part of Dupuytrens, we are Plantar Fibromas same disease different body part. Rarer even yet from our counter-part. Plus being Female and in my 40's even rarer. According to the articles written.  This disease afflicts those that are elderly, males and those that have diabetes and liver disease and seizures etc. and it claims to possibly stem from genetics. I think I need a breather, regroup, and talk to my doctor. It sucks when you feel like no one believes you have this disease and you tell them its rare. Why should they believe me there is no fundraisers or silicone bands or telethons or t-shirts and they don't know someone that knows someone that has the PF. I know also I shouldn't feel sorry for myself I could be picked for a team to play RED ROVER. But this is debilitating and it does piss me off. 180 plus years and we don't know anymore about this disease than we did. WHY ?? I can not seem to get Social Security Disability WHY ? There is no cure WHY ? Ponder on that my night owls. Good night and god bless... <3

Fibroma Sunday the 15th 2012

Why should I have even thought that the new medication relfan would work. Maybe my expectations are to high, I know I will forever have this Disease and the pain associated with it and the sensitivity to touch and certain materials and I will never be in a pair of take me home tonight big boy boots !! It is a mind set I must try and change or at the very least shake it like a polaroid picture.  I know there are others out there that have tried so many different treatments and are waiting as I am for a new drug or a CURE. But until then the Doctors should  listen when we tell them something is wrong we know our bodies. If you are in pain tell someone. Do not suffer, we shouldn't have to, but, because there are so many junkies it is hard for the Doctors to give us the relief we so badly deserve. I won't stop this Blog till we push the AWARENESS Envelope, Lick it, and Mail it to everyone and anyone. The message must be sent. I can not express how important this is, you might not know someone but maybe someone on your friends list does. I want and need for them to know they are not ALONE. I also want to stress to everyone once again and for always. This Disease is Real !!! I will gladly show you, and on the right touch me feel me days, let you touch my lovely lady lumps. 
Try walking up stairs or down or how about a gravel driveway or even snow even with custome made orthotics. Or sometimes the pressure the lumps place on a band of nerves, even while your sitting, can cause immense pain. If you have it in your hands or feet and you say to your Doctor I am having pain and he states well there is no associated pain with this disease, Find yourself another Doctor. I have itching and Burning in my feet both are affected. I to have pain sometimes severe. This disease bithers me when I sleep I have foam i place my feer on so the pressure isn't pushing through to the lumps. Night splints do not work because of the constraints it places on my feet. My left foot my toes are curled and it still gets swollen almost 2 1/2 years later. It affects my daily living as well, its hard to focus and concentrate on the pain meds or even without. The pain gets so bad that I can't think straight. Keep in mind it takes about 20 or so minutes from the time I take the pain med till it kicks in, Somedays I can't even get on a shoes or socks because even the weight of it will make my feet ache. I prop my feet up in my electric lift chair and on my electric scooter, which one day I would like to get my own and chrome it out lol. Maybe install a small sound system. I would be riding in style. Well I figure if I am going to be riding it I might as well have it my way and be comfortable. !!! But for now I must say .. Red Rover I cannot play today I have some lovely lady lumps to tend to.
Good Night for now and Please pass the word on !!! Becky