Fanfaire,

You were on my mind and I was wondering about you....

Sorry you had the episode.....it has been a long winter.

Yes the PN will cause exactly that, and, that happens to me a lot, so, always, always test the feet and legs before you set your step, so you don't get up on numb feet and legs. It can ascend quite high up the leg in some folks...I am surprised how high it can get....but it does go away after a while.....let your doc know tho.

Even tho it is a tough time, good to hear from you again.

"Family/Relationships; Honestly, you become a NOT-FUN! person!! You can't go to Aunt Hattie's house because she's got stairs up to the house, THEN more stairs up to the bathroom! Yeah, we could wear 'depends' but WHO wants to? Far easier to decline the invite. This severe stuff does tend to alienate us from our families and our friends...They just can't ask litely: How Are YOU? and expect a lite answer in return...Makes a person feel like a drudge"

To me this is the hardest part of the whole chronic illness garbage. Before I was Hurt I was a very active,physically fit,full of testosterone man. I was a firefighter. I competed on a The State of South Carolina Firefighter Comp. team ( You know the one where you run up 3 stories of stairs in full gear,pull hose, hit a 175 lb piece of stell 8', and drag an 175 lb dummy 100 ft., hopefully in less than 2 minutes) participated in Mixed Martial Art's, and lifted weight's. I had a bench press of over 500lbs, squatted almost 800 and dead lifted over 600. It was my passion that got me hurt. I loved being a firefighter. Being a firefighter is what changed my life and has caused my chronic illness's. I have died twice (2 pulmonary emboli),had 4 DVT's, lost 60% of my lung capacity, and of course the PN. All of this from the result of 15 seconds of expsoure to a S&*tload of chemicals at a fire.
I went from being ,well I don't know what to call it, competitive to struggling. My physically conditioning from before my injuries disguises what is going on inside of my body. I still take my good days and work out (even my not so good days). My firefighter attitude get's me in trouble. I overdo it alot of times. Still stuck with the attitude that you must push through stuff and not "puss" out. Then I end up destroying the next few days.
The part of the whole illness thing is the being cut-off from and the misunderstanding of other's. Mostly the people that you thought should be the most on your side. I realized real quick that firefighter's especialy DO NOT like to see another injured firefighter. It's a reality that we cannnot face. So people that I lived with (24 hour's every third day) bled and cried with, abandoned me very quickly. My whole social structure vanished very quickly. Firefighter's are a very different breed. The way we interact is so much different than the rest of the world. We speak our own language. We rip one another ruthlessly. It is excepted and expected. So now my firends and my way of communicating were gone in what seemed like a flash.
The hardest people to cope with are my family. The were there when I was put into a chemically induced choma from my first PE. They have seen my physical pain. But, they don't take my phone calls because I talk too long when I call. My mother actually called me a hypercondriac just the other day because I told her that my PN was spreading to my hands. My sister said that I should have no problem cleaning the house because my shedule is so easy. I truly believe that they think I should be working even though everyone from the federal govt' to the state WCC have found me to 100% disabled. My father told me to start my lawn service back up. "Just wear a mask, that should be enough". I want to yell and scream "do idiot's think I am doing this because I like it, F- you"
Then you get the church. I am a Christian. My faith in God is unwavering. I have asked Him why He bought me back to live like this. I have stopped asking that question since I saw the face of my grandaughter....now I know why. Talk about good thing's to hold onto. Anyway back to the church....It seem's that anyone who has an illness and God hasn't healed them must be lacking in faith. Especially those who have never been injured or have suffered. You hear things from the pulpit all of the time "I have never been sick in my life, if a cold or illness comes to me I pray it away and rebuke the devil". So my disability means that my faith is weak. Wow, talk about venting. I guess that's why I love these forum's. However, I do not participate in support group's because it seems sometimes that all the groups want to do is to comiserate ( I know,I know, I am doing it now) but I can choose to not read a post or click off of the post if I feel it to be too much.
Thank you for this post. It has reallt shed allot of light on this whole mess. I do accept my injuries. But, man if I don't try to fight them everyday. I havte being told that I can't do something. And it really makes me mad when it's my body doing the talking. I guess that I hear the words other's have spoken. I am learning. I don't want to accept this. I feel that if I accept I give up. I am trying to transition, for 5 years, I don't think I am doing such a good job. There is no manual for changing everything about you midway through your life.

peace out
Kithitter (Phi Miller)

I agree with you from visiting other peoples houses, some family members, the church and just pray it away: they think your failth is weak, and about other support groups. Thanks for your posting So true.

Kitt
Charcot-Marie-Tooth Disease (CMT)

Hi. Thnks for this post. Did I need this today. For me staying in the moment or the day is so hard. I fear the future and miss some of the past. Many days I don't know how to feel towards all my health issues. I feel all the emotions and most of all not knowing what to do. I am very blessed with the money aspect BUT that can't always by you health. It makes it easier to see docs and get tests and like I said I feel so lucky but does not buy answers or relief always. I guess for me a hard part is what the day will bring or what seemingly small health issue in the start will turn into something huge and painful. What helps me cope is people like everyone on this forum. Who walk in these shoes everyday. My mom is my biggest support as well. Hugs to all

Kithitter,

You made my day....I have seen you guys in action, and been on calls with FFs....YOU are a different breed (and you did some of those cute ruthless tricks on me--funny---yeah, right...I am not a fire fighter, and am more of a wuss...I hate barbeque grills and burning barrels) I would share my stories but I would get in trouble. However, you always, always, put my safety first, at any 'scene' and never let me get into trouble (which isn't easy, I am short on brains there...read my icy water post).

You are not a wuss....and yes, you are in a bind...you have THAT kind of personality.....I am glad I haven't gotten a lot of 'mercy' until lately, as I really don't like it...

You are who you are...thank God there are people like you.

You are not sick for lack of faith, in God, in yourself or in life...Illness isn't otherworldly....it is simply distributed here on this planet, and our attitudes do not confer immunity. I have learned in my years, that disease is indiscriminate.

People get sick, diseases progress, and we cope, some days better than others.

You are not 'disabled'....you just can't do the job you used to do, nor most other jobs, not for lack of trying....but you mentioned your most important job...being a grandfather and passing on all that grit to the next generation. They are going to need it. You are 'alternatively abled'...and you have purpose, which is the driving force for life....all life.

You and I and I am sure others, do not worry about how we will go out, as most of us, have had several auditions, and know what we are made of....we worry more about how we live....and how stong we appear, not to others, but to ourselves.

Thank you for your story...your inspiration....and most of all, your service. Your suffering now was earned in service to others, which is often taken for granted.

You can't fight who you are, you will likely take more lumps in life because of your personal inner strength, and the fact that it no longer reconciles with the reality of your physical condition.....You could bench press 4 of me....heh, heh, but was a time when I could out run you. LOL---there is a little back at ya!

You are too cantakerous to whine...you can call it whatever you want (just don't type it on here or it will get deleted)....and do as much of it as you care to....

very powerful. except for the religious part that could have been me writing that (if i could write that powerfully). Similiar exposures and similiar results.

People in general have trouble relating to chronically ill people and tend to avoid them partly because of that fear factor in the back of their mind that they dont want to keep facing.

Did your job or medical people accept that your PN was caused by the exposure or resultant respiratory problems ? Did you get many respiratory infections?

Good luck and enjoy your granddaughter, im kind of a Mr. Mom now myself. I miss my kids being very young at times.

My PN was the last "injury" . I spent alot of time adjusting to my pulmonary and circulatory problems. I had intolerable pain in my legs that took almost 4.5 years for the doc's to identify. I was seeing a pain mgmnt. doc for awhile, they just filled me full of opiates that made my life became miserable. I quit taking them. I would rather die in pain than die dead (just my saying) The only reason I went to a Neuro. was because I felt that I was losing my memory and one of the chemical's that I inhaled is a serious neuro-toxin (Methyl-ethel Ketone's). I had no idea that PN existed! My injuries, mainly the type of exposure's that I suffered, pretty much relate to just about anything that happens to me. Several that I inhaled are what are called I.D.L.H. chemical's. Immediate Danger to Life and Health. You are not supposed to live from one, much less several.

To answer your first question..my department was in denial about how serious I was injured. They didn't do it to be nasty , but once again, the Chief really had a hard time knowing that a career ended on his watch. I was hospitalized immediately. But, most of the concerns were directed towards my respiratory system. No-one foresaw the other problem's. I had to retire when I had my PE. Dieing is a sure sign that ya might need to uh hang 'em up. To my Chief's credit, when we went for my WCC hearing they gave just enough of a fight to make it look good for the Fire Commission. He did the minimum of what was asked from him. Awesome guy! I would still fight fire for him. He did prove that he was as loyal to me as was to him during my career.

As too the infection part. It's really weird. I really am proactive when it comes to respiratory problems. I will do my nebulizor or take prednisone ( only when I am really suffering) way before thing's get bad. One case of pneumonia could possibly do me in. A doc did do me a favor. I was going in for asthma attack's all the time. He finally looked at me and said " Phil, this is your life. This is how you will breathe sometime's. When this happens calm down, do your emergency inhaler's and see what happens". Since then I have not been back for an asthma attack. But I can tell you when it is going to rain. My lung's and my PN goes nutso.

Sorry to ramble. Maybe something I say might just help someone,I dunno. Now maybe you can understand why my parent's say I talk too much,lol.

What you have said has already helped a lot of people.

Sometimes, you just don't even know what good you have done, it isn't meant for your eyes to behold. It is just done and speaks to your character without you even knowing it.

Phil Miller and all thanks for this today,my Grandson lives far awy but
every night I see him grow on the computer,he's 11 months old and,
and his beautifull eyes twinkle at me.Even though I'm Grmama he calls
me Da Da,as he little friend Ella does..Then they laugh with such joy,
they make me so happy and they don't care how much I talk,and I
don't mind at all how many times they show me there new teeth,They
don't tell me what to do and I don't ,when he get's that funny look
on his face tell him not to pee his pants,if that's all it takes to make
him feel better ,oh man good for him..
I' m glad you posted ,as Tony said the other day something about
Starts' talking in the dark,And cleaning house shoot that's hard now
and honest it bother's me,they even care,I do but they should'n.
Well i'm going to pick up as many spoons as I can,if you think
think always being positive is the right thing to do sounds good,
if your not falling down the stairs backwards, when they get you
to the ER. someone will say,hey didn't you use to be a nurse,you
have to tell them in my way I still am..They know you know there not
doing such a good job...

Now it's time to smile at that little guy of mine and friend Ella clap
ther hands his Mama is going to sing to the little guys, Da Da,I'm
happy to be that,I bet I 'll start clapping tooo... and that might
hurt,who care's she can sing and we can clap and laugh..Thanks and
hugs all. Sue out...

my PN developed at the same time as i was getting numerous respiratory infections, persistant wheezing and cough and eventually asthma. I didnt know what it was for the first two years, first i thought it was an ingrown nail as just my big toes were affected then as it spread i thought it was my back causing it. I can feel an infection coming on almost immediately and the pulmonary doctor believes i can and i start right away on antibiotics, prednisone and the nebulizer every 4 hours. If i dont i will be flat on my back within 12 hours. Even with the early warning sometimes i get a persistant infection which leads to long term (5-12 weeks) constant wheezing and coughing. Even though PN and chronic bronchitis and asthma developed together i get a lot of resistance as to the connection from neurologists and epidemiologists.