You'll be fine Lynn. Glad to know you're emotionally and mentally
stronger now. With a lot of patience and the right mindset, you'll
pull through this.

When I was going through the most painful time of my life in 2003, the
year I was diagnosed, I too had to pull myself to work. Like you said,
life goes on. I am a reporter and running after stories with a cane in
one hand had become my personal hell then. Every single step was sheer
agony. (My tendons on my right big toe was cut off, and the wound from
the surgery was taking forever to heal. On top of that, my toenail was
removed so that was another open wound waiting for an infection to
happen.)

I spent weeks and months in and out of hospitals for over a year.
Since my immune system was down, I acquired numerous health
complications along the way. I got chicken pox, bell's palsy,
cellulitis, etc.--I think hospitals are excellent breeding grounds for
germs and diseases to thrive--and my existing heart condition took a
nose dive I had to be rushed to the hospital once more.

Today I feel a lot better. The pain I experience, if ever, is bearable.

Lynn, you're in the right direction. I know someday you'll be
pain-free. Just hang on in there.

--Anne






--- In beurgersdisease@yahoogroups.com, "Lynn Ryan" <lynn.ryan@...> wrote:
>
> Thank you so much for your story. The pain is in both legs and my left
> hand and arm now. I have a finger that is in the first stage of
> necrosis, but I refuse to let them take it right now. The pain in my
> legs causes me not to be able to walk at times. I am pushing myself
> with work and am suffering in the evening from doing so, but life goes
> on, even when we wish it wouldnt. I have to go to the doctor on Monday
> and will find out more, but for now I will bear what I have to. I do
> tell people everyday (especially my smoking buddies at work) please
> stop, look what this has done to me. This disease is not on physical
> but emotional and mental. When you go through as much pain as this
> disease causes, you have the depression and the self pity try to set in.
> I refuse to allow those to come but at times it is unavoidable. It
> really does help coping when I have so many people respond to the
> emails. You are such an inspiration. When you hear of others that have
> gone through it, you know that you can too. Thanks for listening and
> being there!!!! I do wish you the best and am so thankful that you are
> pain free, and I too will be there one day, but right now I have to
> endure. Thanks for the support. Its amazing how something like this
> can bring people together from all over the country and world!!!!
>
> Lynn Ryan
> Lynn.Ryan@...
> Middle TN Regional Office
> 275 Stewarts Ferry Pike
> Van Buren Building
> Operations Department
> Nashville, TN 37214
> 884-1923
> Lynn.Ryan@...
>
>
> (NOTE: This e-mail may contain PRIVILEGED and CONFIDENTIAL information
> and is intended only for the use of the specific individual(s) to which
> it is addressed. If you are not an intended recipient of this e-mail,
> you are hereby notified that any unauthorized use, dissemination or
> copying of this e-mail or the information contained in it or attached to
> it is strictly prohibited. If you have received this e-mail in error,
> please delete it and immediately notify the person named above by reply
> e-mail. Thank you.
>
>
> >>> "james dunn" <james.dunn187@...> 10/19/06 3:48 AM >>>
> Hi Lynn,
>
> Can really understand what you are going through. I had years of pain,
> had to try to sleep with both legs out of the bed and despite being
> given many so called pain relieving drugs; none of them ever worked. I
> too continued to work and had to resort to wearing sandals both in
> winter and summer as I couldn't bear anything else.
> My first diagnosis was when I was 23 and that started with cramp in the
> left leg. Specialists in the disease state that Beurgers usually
> presents itself in the young smoker and it is unusual for it be the
> cause of circulation problems for those in the in their maturity.
> I do not wish to alarm you but if the diagnosis is right then the clock
> cannot be turned back and the damage done to your arteries is permanent.
> I had many operations to improve the circulation to my legs such as
> lumbar sympthectomies but in my opinion they never worked. I was so
> desperate with pain that I almost asked them to remove my legs and it
> was only when gangrene presented itself in both feet that they amputated
> both legs below the knee. Went into hospital on the Friday and they were
> off on the Sunday and I had the best nights sleep for years. I returned
> to work and thinking that I was 'cured' continued to smoke and then
> discovered that Beurgers is always there and that was then I started
> having trouble with my hands. Do not want to recall all that went on
> after that but sufficient to say that I did lose some of the ends of my
> fingers and because of the of state of my hands could not drive and
> therefore could not work. I was medically retired at the age of 46.
> Clinical management of Beurgers has always been lamentable and it was
> only by meeting an American surgeon who stated in no uncertain terms
> that Beurgers Disease only presents itself in smokers and if you don't
> smoke you don't get it. From that day, some 24 years ago, I have never
> smoked again and my hands returned to normal despite having some of the
> ends of my fingers missing.
> Having the disease is a painful journey, but you can recover. I swim
> twice a week in a Masters swimming club; I walk the dog; I do a lot of
> DIY and gardening and have never suffered any pain since that time I
> gave up smoking.
> Hang on in there Lynn.
> James.
>
> ----- Original Message -----
> From: Lynn
> To: beurgersdisease@yahoogroups.com
> Sent: Tuesday, October 17, 2006 3:40 PM
> Subject: Re: [Beurgers Disease] Just diagnosed
>
>
> Well they are wanting to take my left pointer finger. It is the
> most affected right now. The pain has now moved to both legs and it
> is really hard to walk. I dont know how to describe it except to
> say that I feel like my brain has to tell my legs to move sometimes
> because they are so weak. I went for more x rays yesterday. They
> are ruling out all other possible problems. My hand and feet really
> itch alot too. Is that another symptom. The itching is always
> followed by burning and then just pain. I am still working
> everyday. I am a secretary so I have lots of typing and computer
> work. The doctor said that I needed to work while I could that this
> would only get worse before it gets better. In doing the medical
> history we have discovered that I have had these symptoms for around
>
> 3-4 years, they just werent bad enough to diagnose me with. I have
> been in constant pain now for a little over three weeks....I just
> wish it would end now.
>
> --- In beurgersdisease@yahoogroups.com, "th.b.schaefer"
> <th.b.schaefer@> wrote:
> >
> > Lynn Ryan schrieb:
> >
> > >Thank you. It really does help to hear from people with the same
> disease. It really makes me feel like I am not alone and that
> people do understand the pain. Its hard for my family right now
> because they have no idea how horrible the pain is. All they know
> is that the wife and mother is so consumed with pain that she has
> changed and doesnt have the patience or understanding that she once
> did. Sometimes it hurts so bad that I had rather God call me home
> as to live any longer. I have always been active (softball coach,
> player, work two jobs, run a farm, raise all kinds of animals, and
> go to all the events that my athlectic children have) now I find
> myself lying around in my pajamas on the weekends. Thank God my
> kids are teenagers and I dont have any small ones. Thanks so much,
> just the encouragement from others helps tremendously.
> > >
> > >Lynn Ryan
> > >Lynn.Ryan@
> > >Middle TN Regional Office
> > >275 Stewarts Ferry Pike
> > >Van Buren Building
> > >Operations Department
> > >Nashville, TN 37214
> > >884-1923
> > >Lynn.Ryan@
> > >
> > >
> > >(NOTE: This e-mail may contain PRIVILEGED and CONFIDENTIAL
> information and is intended only for the use of the specific
> individual(s) to which it is addressed. If you are not an intended
> recipient of this e-mail, you are hereby notified that any
> unauthorized use, dissemination or copying of this e-mail or the
> information contained in it or attached to it is strictly
> prohibited. If you have received this e-mail in error, please
> delete it and immediately notify the person named above by reply e-
> mail. Thank you.
> > >
> > >
> > >
> > >
> > >>>>"james dunn" <james.dunn187@> 10/13/06 3:34 AM >>>
> > >>>>
> > >>>>
> > >Hi Lynn,
> > >
> > >There are many research papers on Beurgers, but as somebody who
> has lived with the disease for fifty years I feel that I am somewhat
>
> of a specialist on the subject. I was diagnosed with the disease
> when I was 23 and had been smoking since I was 16. Little was known
> about the relationship between tobacco and Beurgers until research
> started in earnest in the sixties and by the time I had reached my
> late thirties the damage had been done. In fact there is no turning
> back the clock and hope that the damage caused by tobacco can be
> reversed; it can't.
> > >
> > >I hope that I do not frighten you with the following, but if you
> have been diagnosed with Beurgers disease you must never, repeat
> never smoke again. Due to tobacco and the faulty genes that made me
> susceptible to Beurgers I have had both legs amputated below the
> knee and suffered damage to both hands.
> > >
> > >I haven't smoked for some 25 years and despite the false legs
> live life to the full. The point is Lynn that you will recover, but
> if you do not want a life that is filled with continuous pain, NEVER
>
> SMOKE AGAIN.
> > >
> > >If you want any further advice please ask.
> > >
> > >James
> > >
> > >
> > >To: beurgersdisease@yahoogroups.com
> > > Sent: Thursday, October 12, 2006 7:46 PM
> > > Subject: [Beurgers Disease] Just diagnosed
> > >
> > >
> > > I have tried to do research on this disease. My doctor is still
> in
> > > the process of testing to rule out any other diseases, but is
> sure
> > > that this is Beurger's. I have been on pain medication for one
> month
> > > and it just dulls the pain. I have so many questions.... I am
> > > terrified and can just cry all the time. My children have had
> to tie
> > > my shoes, help me wash my hair.....Is there anyone in this
> group in
> > > the Nashville TN area, or anyone that uses Sprint that I could
> talk
> > > to, or even anyone that knows where I can go look for questions
> and
> > > answers about this disease.
> > > I am a 35 year old female who has smoked for almost 20 years. I
> have
> > > just started taking Chantix to help me quit...
> > > Thanks so much from someone who is scared to death....
> > >
> > >
> > >
> > >
> > >
> > >[Non-text portions of this message have been removed]
> > >
> > >
> > >
> > >
> > >
> > >Yahoo! Groups Links
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > Hi Lynn,
> >
> > What finger do they want to amputate? all? just one? which? is it
> really
> > necessary or do they just want to show you that buerger ist really
>
> a
> > serious thing?
> > as most people wrote you allready, to keep on smoking will make it
>
> only
> > worse...and honey, i know how hard it is to quite.
> > I started smoking at age 15, so i smoked half of my life when i
> was
> > diagnosed, and i was used to smoke about 20 cigarettes the day and
>
> even
> > more, when i had stess.
> > Believe me it is not only the pain. It destoys your vessels when
> you
> > dont stop smoking and it will lead to amputations - not only of
> one
> > single finger. I know what i am talking about. Sure they are some
> > medikations that can help you to deal with the symptoms, but they
> are
> > all worthless as long as you keep on smoking.
> > A long time I believed, that there must be anything to help me
> while
> > keep on smoking - i want both, my cigarettes and to be cured. I
> had to
> > learn it the hard way, that this is not possible with buergers.
> > I hope my terrible english is understandable enough - so write me
> again.
> >
> > Yours
> >
> > Theresia
> >
> >
> > [Non-text portions of this message have been removed]
> >
>
>
>
>
>
> [Non-text portions of this message have been removed]
>