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

Fibroma the 14th, 2012

Saturday the 14th of January 2012. I don't think the new anti inflammatory pill relfan is working. I woke up several times with pain and then even now at 11:40 my feet are cold and on a scale of 1-10 the pain level is an uncomfortable 5. Not bad but I would rather have none. I am a whiner I have noticed as of late. I want to move out of this cold iceburg of a state. I need warmth.So I must get a  hold of my wonderful Doctor Lancaster he is a super hero to me. He hasn't given up on me and he keeps trying to hit that home run of no pain for me. I only ask that I have more good non pain days or at the very least comfy days. I oh so take care of my feet they are lotioned and the skin is protected just like a babies but. I want nothing else to happen so I pamper them when they let me. I still want feed back post me something let me know there are humans still out there !! Hello, Yell back if you can hear me .......

Fibroma the 13th, 2012

Today the Fantabulous 13th day of the month also happens to be a Friday, awoke with pain. I sleep with my feet hanging over the edge of my bed so they don't hit or touch anything to wake me while I sleep. I rearrange my body quite often till I fall asleep just ask my husband who sleeps in the living room at times.
I wanted to let anyone that may read this, that I have found articls claiming this disease does not have pain but have read forums where actual sufferers would be willing to rip somones tongue out for just thinking those words. Once again this Disease is Real the Pain is Real there's no cure no known cause and those of us that suffer are Real. We have no Fundraisers or Awareness Bands or leaflets in the Doctors office that does not mean what we have is imaginary nor our pain. So keep speaking up and out one day we will be acknowledged but until then we must keep up the fight...

The Beginning !!!!

One evening in February 2009, I guess the date doesn't matter only that there were no words to express the panic I felt inside my soul that night. I felt a lump in my foot !! It is my lump there are many like them but this one is mine. I didn't know yet where this little lump of mine would take me, but I sure wasn't prepared for the path of least resistance. My first thought was the C word (cancer). I had watched that 6 letter word, pick off family members as if it were playing red rover, red rover. So I did what any human would do, I went straight to bed that night and carried on like I hadn't just single handedly found the one thing that could and eventually would rip my world apart.  John Deere my terrific employer !! I love my job, my supervisor, and every other last detail of working there. And everything was looking and smelling like roses, or so I thought. It ended up it was rose colored glassed and that smell wasn't flowers it was Fibroma's in the air. So 6 months have gone by and now the little lump has decided to poke its little body of unknown cure or cause outside its little safety zone. I then was thinking, wow, what if my other foot has it. And there it was smack dab in the middle of my other arch. WHY ?? This time there was no ignoring either of them. The pain by July was excruciating and I am NOT a Wimp !! I decided to go and invest in orthotics, Dr. Scholl's was the winner. 30 days later I found myself sitting at the Podiatrist's office listening to him suggest Surgery. But we should also just wait for awhile first and watch them.  My feet are my bread and butter. I need them to walk, climb, and maneuver around the X-building at John Deere. I cannot go to work in this much pain. I left there upset, pissed off, angry and confused at this Plantar Fibroma Disease and the no Cure and the no known cause. WHAT ??? Are you serious here. In todays world of technology noone can figure out why, when, or how or even what this disease is all about.  I felt as if, on one foot I was glad I didnt get picked for red rover but on the other foot I felt abandoned by my world. 3 days later no end to the pain I called up angry, wanting to go to work but knowing full well I could not physically perform my duties without crying like a big baby with owwies in her wittle footsies. I called the Doctor and was scheduled for foot surgery in 3 weeks. September 25,2009, I thought was going to be the new beginning. The naughty lump in left foot would be forever a distant memory and the right one would be vacationing there for a few more months then it to would live out the rest of its days in a jar.  Surgery went well so I was told. But within a few weeks/months the Fibroma/Lump had returned right underneath my scar tissue. I felt like Lumpy had returned and was giving me and the Doc the raspberries. As if to say Ha Ha, you didn't get all of me so I'm BACK. I did know that this was a possibility, this recurrency of the Fibroma. But I thought, Not me, I'm young and healthy. Boy I was wrong. So over the next few months the Doctor did everything he could think of, Steroid shots and more time off of work. Then he told me he was sorry but that maybe I needed a second opinion, someone with maybe a fresher set of eyes.
So I checked out several doctors and heard great things about my second and current Doctor. Now during this chaotic time frame, I had to see my regular doctor due to lots of pain and swelling and not able to put shoes on and walk very far. So my reg. Doctor gave me a handicap paper so I didn't have to walk all over B.F.E. and tried many different combinations of pills and patches. I eventually went to a pain clinic.  I was placed on a higher dose of Hydrocodone ( makes me feel and walk floaty) and the pain clinic also placed me on Gabapentin and took me off of TramadolER. I don't think it ever really worked the greatest. I have also had physical therapy and bought ointments and creams and oils and shoes.Which leads me to today 2 and a half years later. I still live with my lovely lady lumps. There are several now that are filling up my right foot and one nice sized one in my left. They are very painful and keep me in a scooter or my electric lift chair most days. It is not Red Rover, but it does Yell out, RARE!!This Disease is Rare and I have a Painful Form and that to is Rare. And I do feel at times I wish I had a Disease that others would acknowledge or understand. I share with people about my disease and they look at me like, wow nice story tell another. PLANTAR FIBROMATOSIS IS RARE but it is real and it has various stages and various forms shapes and sizes just like any other disease. This one is like all the others it affects and effects everyone differently and in different ways. It doesn't have the same end result as RED ROVER  but that doesn't make it not have end results.  People with Plantar Fibromatosis, some of our results are dibilitating and depressing and lonely and others walk around and may not even know they have a fibroma or this disease at all. If you have a special someone or are that special somone please, please get in contact with me. I want others to know they are not alone.!!!! I believe we need a cure. I believe we need to support each other !! And Just know that I BELIEVE you !!!