Falling Living with Chronic pain

Hello @danavs.

I would like to introduce @gailb, @aprilarlady, @sandytoes14, @virtuous69, and @janie56, as they have all recently discussed having some sort of arthritis. They may be able to offer some suggestions on how to handle pain medications and what sort of precautions you can take on your own to moving around and preventing falling.

@danavs, you mentioned a skin disease, would you mind sharing what exactly that means?

Hello JustinMcClanahan. I have a painful and itchy hereditary skin disease known as Hailey-Hailey that controls my life. It has gotten much worse as I age. The worst place on my body is between my legs and behind, causing horrible pain when I sit or try to get in and out of a car. Now perhaps even worse is on the side of the neck, chest, and shoulder I sleep on. When I wake up it's like very, very painful raw skin. I have the blisters, whelps, crusting, raw skin, and bleeding over much of my body and everything (clothing, bedding) hurts my body. Have had the disease in between legs/behind for at least 2 years, never healing. It gets a little better, then worse again and when urine touches it, I sometimes cry or almost scream.

HH is because a missing gene causes the skin cells to become unstuck. I refuse any surgery because it messes up the skin so bad. Even the pads they put on chest and under breast to monitor everything for a colonoscopy leaves my whole chest messed up forever. Last time they used juvenile pads and it wasn't quite as bad. Skin on skin causes flare-ups, so I pat skin with corn starch on much of body every day. I have been using corticosteroids for years which is the only thing that helps to keep it from spreading and lessons the pain, but it also causes the skin to become thin. Anti-fungals helps some with the itching. Heat outside and heating in winter inside makes condition worse. Now I am having to use prescription Lidocaine (numbing) ointment over much of body, especially before I go to bed. I trust my dermatologist with treatment and he also has wonderful, caring bedside manners - which we all need.

That's probably more than you wanted to know, but thanks for asking.

That was a thorough and great explanation. Thank you for educating me. It sounds like you have to deal with a lot, but are doing so with as much strength as you can, and that is admirable. Is this why you are concerned about pain medications, do they affect your HH disease in any way?

@rosemarya, do you have any advice for danavs regarding arthritis, using a walker, and the fear of falling?

@danavs, I am very happy that Justin has introduced us. I will start by saying that I admire your grit and determination. I will also say that I also was told by my doctors and care team to use a walker.
My health and strength were deteriorating while I waited for my organ transplant. At first I found the walker totally awkward, but I quickly learned that I could actually take some steps because it provided the stability that I needed. Without it, I would have fallen with just a few steps. I did not like using it because it reminded me of my dear 92 year old mom who was struggling in a nursing home at the same time. Quickly, I learned that it gave me some stability and also some extra support that I needed at that time. Also, I could be somewhat independent, even if I was slow. My husband did not like the walker. He kept saying, "Maybe you can get rid of that thing soon." Well, my transplant doctor told him (and me) that I need to use it because of the high risk of falling. He said that if I fell and broke a bone, that I would not get my transplant. We both were convinced that I would use it. And to end my story, I did receive my transplant.

I would like to encourage you to use a walker, like your doctor is advising. In your situation, just like mine - Just do it - The risk for us is too big.

One of the difficult things that I learned is that many people perceive you as invisible when you need to use any kind of assistive implement (same with the wheelchair) and often avoid eye contact.
The other is that some people whisk past you and even bump the walker as if it is no big deal.

I am sending you a hug.
Rosemary

Justin, thanks for the encouragement. Pain meds do not help or hurt HH. They affect the spastic esophagus and I can only eat gelatins and pudding for weeks while I try to get rid of the pain in the esophagus and have to sleep sitting up till I can lie down w/o choking. It's important that I eat a healthy diet to keep my strength up. It also hardens BMs and causes painful constipation.

Thanks for introducing me to Rosemary. I appreciate all of you who are moderators and help and encourage us to keep up the good fight!

@Rosemaya. Thank you so much for the encouragement. I am so thankful you finally received the transplant. It must have been a frustrating wait. I am also glad you were so patient and faithful to use the walker.

I had a sitter for eight days ending last night and she moved everything around to keep the walker from hitting things and possibly causing me to fall. She was a great help and good company, even had to help me get in bed and tuck me in. My body was so stove up from lying on the hard xray table that I couldn't even move away from the edge of the bed w/o help. I'm now able to move my body better in bed and I couldn't afford to keep her longer. I can't afford to move to Assisted Living. Being sick and poor together is worrisome. I'm not quite poor enough to get on Medicaid with all their help. The good Lord looks after me and always sends help. I am very blessed!

I am thankful for the walker and still walk (do everything) slowly. I am fearful of trying to walk w/o the walker now, so I will definitely hold onto it. I did read that using a walker can affect your ability to walk w/o one, but I know I need it. I do not want to fall any more. Last time I lay on the bathroom floor for an hour in pain before the firemen got in to pick me up.

Again, thanks for the encouragement and for being a volunteer mentor. You are all doing a wonderful service to us.

@danavs, You are most welcome
I want you to know that it is an honor and a privilege to meet folks such as you. You are an inspiration by your inner strength and your attitude. All of us mentors have and/or are dealing with a multitude of complex health related issues, and we can, and will walk with you. We are here for you.
I am happy that I was able to provide some encouragement about the walker. And now with things moved out of your way, you might be able to get a little walking done. I hope the pain doesn't get to be to much.
Now that your sitter is not there, do you have someone who can assist you if needed. Or bring you groceries?
Sleep well tonight.
Rosemary

Reading the conversation between both of you, @danavs and @rosemarya, is both touching and amazing. I am humbled at the courage of you @danavs in continuing to live your life with the challenges you face every day. And, @rosemarya, your respect for and ability to relate to and honor @danavs serves as a role model for me. I so appreciate being part of the warmth I feel between both of you. Gail B

@rosemarya, thanks again for your concern. I do get some help. A friend who lives in a city nearby, has a job that makes her work overtime, & has two children finds time to visit once a week. One time she buys my groceries & anything I need, washes two weeks of clothes, folds & puts up the laundry, changes my bed, cuts my toe nails, takes out garbage, and anything else I need done. The other weekend she changes my bed, takes out garbage, and brings milk or anything I've run out of. Because I bleed on bedding and get cornstarch on it, I wish I could get my bed changed daily, but I am so blessed for all she does do. She often tells me she wants to be just like me "when she grows up." I tell me she is my angel and I love her dearly.

Most of the time I can find someone to take me to a doctor's appointment, and I can always get a ride to church when I am able to go. Praise the Lord for that. I can always put my garbage just outside my door & one of my neighbors will take it to bin. Another neighbor calls to check on me and says she'll come visit when she can. The Lord is good to me and I am truly blessed.

I never married, travelled, moved to 5 different states, did 5 & 10 mile hikes, climbed a mountain, and forded a river, even became a professional belly dancer, enjoyed life. I did not get saved till I was 46.5 years old & my life changed forever. My parents are both deceased, and both my brother & sister have died even though they were younger than me. I, of course had no children, so I have no family to help take of me. I am thankful for those God sends my way to help me.

I also have sleep apnea (apap & full face mask), Umbilical hernia, ulner nerve entrapment on both elbows with 2 numb fingers on each hand, spine curvature W/numbness in left shoulder, and a fractured C-2 from another fall, as well as massive muscle damage in left hip & leg from a fall several years ago.

I do have a lot to deal with, however, I cannot say enough times how blessed I am. And now I have you wonderful friends on Connect. I appreciate you very much to take time to talk to me when you have so much to deal with yourself. God bless you every minute of each day.

@gailb, It warmed my heart to read your touching words. Thank you and God bless.