Surviving Chronic Illness and Pain
Suffering with a chronic illness & chronic pain often feel alone & isolated, fighting a constant battle with the body & mind. We may not look sick but we are suffering. come & get support, we get it!
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29 days ago
It's my mom. Her pain is so completely extremely severe she appears to be in horrifying seizures, muscles clenching, endless tremors. Continually fits of agony that overcome her body in waves of hell. My sister and I have to pull on her constantly to keep her limbs from seizing altogether. I have 4 very small children who are showing signs of inattention and struggling. My mother does not sleep. We have to feed her. Lift her. Take her to the bathroom. No one knows how bad it is. My once vivacious independent hero begs me every day to let her die. For angels to take her home. All while my babies watch me pull on her and remind her she must fight. It's been 2 years. Now she is detoxing something from her body. The spasms continue. Her weight dips to 80 lbs. Meanwhile we give thousands of dollars to doctors and alternative healers who have no answers. No solutions. Who can't even offer something to make her sleep or relieve what she describes as her cellular war.
Pretty much it sucks.
Karen Carpenter said...
2 months ago
I have small cell lung cancer. I am in a motorized wheelchair part of the time now because it helps me to get around easier, conserve my energy, keep me from falling and stay somewhat sociable here in our apartment building. Most of the time I feel like I handle all of this all right. However, lately I am not doing that great. I am not sleeping very well due to pain and discomfort. It is harder to find comfortable positions to sleep in. We desperately need a new queen size bed because ours does not provide enough support, but we can not afford a new one. We need help to get a new bed.
Roughly 60-65% of my appetite is gone. I have no hunger cues left, save for getting a little light-headed or grumpy. That told me it was time to eat. Now,, I start to prepare something before this happens. I have to adjust my diet again because some foods are harder to digest now. I am retooling my diet, and shifting it to include baby foods to replace foods I can no longer eat and to keep up my nutrition. Fortunately, Gerber makes organic ones that look pretty good.
Being in my wheelchair, which I at times call my "stroller" and eating baby foods again makes me feel like an infant. I feel I am regressing somewhat towards an infant state sometimes. As a Taoist, I see the humor in this occasionally, as it says in the Tao Te Ching: "Become as a little child once more,," "Return to the state of the uncarved block," "Return to the infant state.." I am certainly doing this!
My attention is drifting. It is hard sometimes to follow a conversation or keep track of what is being said. I know I am becoming more oriented to where I am going and less oriented to where I have been up until now. I am anticipating this journey with joy because I am very tired and feel ready to go home.
At the moment, my room mate, friend and interfaith minister Julie and I live in HUD housing. We are in a third floor apartment that is not ADA even though I am in a wheelchair and she at times uses a walker. The elevators are not reliable, which means I have been literally stranded on our floor in emergency situations. This is unsafe for me. I have no doctor to say I am disabled from my wreck or because I have cancer, and because of this the people who run this place say I have to do "community service" somewhere for at least 8 hours a month.
I try to do it here, but the City of Phoenix knows I can not do it physically. Do they care? No. I was told that if I did not do what they want me to do, they will evict me. That would put me in the street, literally. They know I have no money, no relatives, no one to stay with, and nowhere to go. Julie is my only family, and she takes care of me. They don;t care about that, either. This doesn't help my stress level, which is high enough. I need the City of Phoenix people who run this place to leave me alone so I can die in peace, with dignity. I do not want to die in this heartless place.
Better yet, we need to move out of here into a better place to live, ASAP. We need two bedrooms, two bathrooms. Either a house or apartment. It needs to be wheelchair accessible. If it is an apartment, it must be on the first floor for safety reasons. We will need help with moving our belongings out of here and into our new place. The rent must be affordable; Julie pays it, and feels she can at best handle $200 a month, plus a little bit of utilities, maybe. She wants a better job with higher pay so we can save money to get out of here. This has been stressful for her.
We have had it with the cruelty in Phoenix, and AZ towards disabled people in general and us in particular, and we want to move to California, again ASAP. We need help! We can not do this alone!
6 months ago
So, I guess since I started this group, I should share why. Simply, I avoided the idea of support groups for a long time, a survival mechanism I think. Things had just gotten so bad, and I have felt so alone in years. One late sleepless night I was pinning away on pintrest and happen to come across beautiful pins that spoke to me exact situation. I knew that others suffered but I didn't realize I much I could relate. Although I haven't been able to relate to those with my specific disease, it just gave me so much peace. I'm hoping this will be an extension of that sense of support I had not known before. Maybe I just didn't need it till now, but whatever it is, I hope I can offer community to others like me. Now for a little history about me, I was born with a degenerative bone disease. Most think of it as brittle bone disease but it affects all my major systems. The biggest issues for me id that it is a fairly rare disease that causes severe chronic pain. I was told when I was seven that I would be in a wheel chair by my 20s and would not have children. Around that same time, I had to have two metal rods put into my tibia's to prevent them from bending and breaking under my own weight. I fought like hell to regain my mobility and kept that going well into my 20's. I also had a healthy baby girl. I was surviving the daily pain and still living a productive life, although I was not working while my daughter was still little. The plan was to go back when she was in school full time Eventually my disease caught up with me and things got more difficult. Thankfully PA has waiver programs that offer support for those living with disabilities and I was provided with a state paid home health aid for so many hours a week to help keep me independent. ( oh note to readers, discussion topic, don't ya love living with a disability or illness that doesn't leave you "looking sick") Three years ago, same year my daughter started school full time, I ran out to get something for our new house and I slipped and fell. I just went down. My ams were wrapped around a bag in front of me and the took the hit. It was my worst fall since I was seven and got my first metal. The whole experience was a traumatic nightmare I'm still try to recover from. I'll share a bit more about this later on. I'm an empty shell of the woman I was and this hopefully will help put a piece f me back together again. I really hope someone finds this and decides to give it a try. Thanks