When did my world start to revolve around my feet? When did every decision I make start with and end with my feet???

When did every trip out of my house make me question how will my feet do and what are the conditions of my surrounding??

Things are drastically different from 1 year ago. Because the answer to all those questions are about 6 months ago. 1 year ago I did not think twice about those things.

Now, every environment effects my decision. What will the temperature be? As temps have everything to do with my feet.

Every year I go to Florida for the month of Jan or Feb and stay with my mom. I was thinking about going by myself this month for just a couple weeks which means flying instead of driving.

Flying presents a dilema. I can't take my chi machine, which has brought amazing comfort to me, without it my flares are wayyy worse. And how do I deal with flares on a plane? Since I am not on any pain meds I must use my own devices. Will they say anything when I try to take a water bottle through the airport, lol? A simple water bottle brings great relief when they are burning.

The list is endless for what if...even enjoying the daily walks and strolls along the beach is not barely an option if its above 70.

My husband, bless him, is also trying to learn and wrap his head around my every move being consumed with my feet and how my life is revolved around it. Many times I choose to stay home rather than brave leaving my comfort zone to go out. I am 46 yrs old what does my future hold if this gets worse since it seems pretty isolated now???

Sorry. Generally I am pretty positive but lately, I am coming to terms with how much my life has changed in 1 year and where it's going. I am not ready to get on drugs yet since I feel that day will come but not now, not yet, too many side effects and issues for me personally.

Hubby has several trips he wants me to go on this year, he has a bussiness trip to Vegas...trips scare me now...it takes me out of my comfort zone.

The word recluse is fast becoming a part of my thought process.

Do any of you find yourself staying home in your comfort zone just to avoid problems?

Staying home is a comfort zone but I have to go out and do the best I can. Nothing else to add except you should call the airline and see what their policies are.

Ya, not much to say, I guess sometimes when I say it here I say things I wont say out loud to anyone else, I talk enuf about my condition to hubby, I don't like to even address my fear issues.

Good morning from Georgia !

I too don't want to leave my house and am here 99% of the time. My advanced SFN does severely limit me. A year ago I had just been laid off from a job I had 26 years but with 7.5 months of severance I wasn't worried. After the 1st few days I knew the world was wide open for me and I could decide to do whatever I wanted and that was very freeing !

I was 50 (51 now) and I had my daughter's wedding on a dock on St George Island, FL on the bay. What a blast we had ! So laid back and fun. Then on Oct 22 I had what I say is a 'normal' hysterectomy and bam ! 3 weeks later I was in my GYN's office with a path report that said they found Serous cancer in my uterus. They had to look it up because it's rare. Figures with my luck. I am diabetic but not insulin dependent.....fast forward through 6 rounds of chemo (Taxol/Carbo) and exactly a month later I could hardly walk. Had some symptoms of neuropathy during chemo but it was not debilitating. So I've been seeing dr's since May to try and figure this out while my husband thought I was 'faking' and just didn't want to go back to work. Boy did his attitude change when I called him with my skin biopsy report !

Anywho......I'm now waiting to see a 2nd pain specialist (first one I liked but his office bldg. was nasty). The foot dr that did the biopsy said nothing could be done to regenerate the nerves in my feet and that a pain dr was all I could do.

I never, ever thought that NOT going to WalMart could affect me so badly. I don't drive cause it makes my feet hurt, can't walk much cause it makes my feet hurt and so on. I can't even go to the grocery store....I did last Friday morning and boy did I pay for it.

Until last week I only took vicodin and Xanax as needed but I had a slightly swollen, very painful place come up on the left side of my left foot. Pain got so bad I went to our ER Alternative in town....they did xray's...not broken...just progression of SFN. Great......something else to hurt worse than I already was. The dr's have been telling me to get on a pain plan but I just didn't want to but I am now......vicodin 4 times a day and Xanax when it is really bad. This sucks !

And finally........I'm probably going for the neurostimulator if this next pain dr approves. I have 2 grown children and 6 grandchildren and I'm tired of not being the mom and grammy I was a year ago. No more huge dinners every weekend (hell I can't even cook for me and my husband since this new thing started with my foot last week) I'm missing their softball games and cross country events. They have all been awesome....they are in and out of the house all week taking out garbage, cooking, grocery shopping, sweeping and mopping and so on. Could not do this without them.

OK....I'm done.......I feel like an invalid most days and always have to have my feet propped up. Any surface my feet come in contact with just gets them all riled up.

But I feel much better sending this to you.......we'll get through this and come out on the other side better. I love life, sunshine, rain, my dog Charlie and I could go on and on. Life is good.....even from the recliner

I've only been on neurotalk for a couple of weeks but have been reading threads since Dec 2012. I love this place and all the people on it. I have learned so much from them.

Debi

Are you saying you can't make it through the few hours of the flight without these?

I don't know about using the machine ON the plane, but you should be able to bring it with you, one way or another. We bring our cpaps with no problem (they do get inspected like everything else), and as a medical device, they're not counted as carry-ons.

You may not be able to bring a full water bottle through, but you can certainly bring an empty one and fill it once you are through.

Doc

Can't use a scooter? My back keeps me from walking any distance, and while I don't like it, using store scooters at least allows me to shop.

Doc

I know, I know.....the kids fuss at me all the time about getting out and using the scooters in the stores. We live in a small town and I just have not been able to bring myself to use one.

BUT.....I promised my daughter and daughter in law that if I was still unable to walk much come Christmas I would let me roll me around ! I love Christmas time and I know pride is a sin but I cried when I got my handicap thing for my rear view mirror.

I am an upbeat, happy 51 year old but this has taken the wind out of my sails

Thanks for always being here for everyone....u are a real nice fella Dr S !

Debi

I know how you feel ; it took me a while too, but I eventually came to the conclusion that it was better for my health—physical and mental—to swallow my pride and mount up.

Doc

Stacey and Debi, thanks for sharing your fears and your emotional pain so honestly. I cried a little when I read your postings, for you and for myself. Idiopathic neuropathy coming right after an accident and some fractures has upended my life--I had to take a medical leave of absence from the teaching job that I love, canceled plans to fly to the midwest to see my family, not sure if I'll ever be able to fly again or even take longish car trips. And I suspect you also have friends and family who understand for a while and then forget and think you're just taking a long time to "heal." It's wonderful to read the words of strength that come from people like you who DO understand.

By the way, if you do use one of the electric carts at the grocery store, let me know if you can figure out how the management expects you to get the groceries to the car. Sometimes I just drive the thing right into the parking lot, contrary to the posted instructions, but that won't work in the winter.

--Lynn

I am definitely finding that I get out much less than I used to. I even relegate the shopping to whoever I can.
It more or less crept up on me that weeks can go by and I only get out once or twice.
My pain is pretty well controlled with medication, but the fatigue is much worse and it just dosen't seem worth the effort to put on makeup and street clothes.
I think I need to make this a higher priority, this shut in thing can snowball so easily.
Stacy, if the pain is limiting you to this degree and destroying your quality of life, medication can help. I know that many people have excellent reasons for avoiding it, but with this disease it can make a huge difference.
We did use a wheelchair in the airport during our trip to Maine last month and it helped enormously!