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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about 1 month ago
I'm so glad I've found this place! My situation is complicated and honestly, it's hard to find support groups for people like me, taking care of a spouse with chronic pain. We also don't fit the ederly category as I am only 39 and my husband is 45. My kids are 13, 11, and 7.
We all have ADHD (except for my husband). Everyday is a constant Easter egg hunt for stuff. Sometimes I feel like a single parent. My husband's pain is unpredictable, meaning today might be manageable but tomorrow might be good too. Might also be really crappy, which most days are worse days than good days.
I am from Canada. All of my family is there (my husband is American and we have lived in the states now for many years). All of my hsuabnds family is out of state. We purely rely on each other. We've also moved around a lot and so I really don't have any friends outside of work.
I really need someone right now to help me deal with how I'm feeling about everything: Guilty at myself for being upset about small things. Putting responsibility on kids to do more. Walking the fine line between informing kids of severity of situation without causing them to worry. There is so much more I could say..
Anybody have ideas or pointers (or other possible resources)? I struggle too, sharing these thoughts with my husband because I already know he carries a heavy burden. My goal is not to weigh him down with how I'm managing. Though he knows the last few days I have not been myself. But still I keep it in which I know is not healthy, but I feel like I have no one to turn to for support or advice, at least not in person.
Thanks for any comments or suggestions.
about 1 month ago
My daughter at 34 is chronically ill with Sjogrens, Pots and Gastroperisis. She is losing weight every week because she can't eat. She has had a port now for some time and is looking at having to get a feeding tube in her nose. This all started and 13 months ago. I live in CA and she is in AZ with her two girls and wonderfully supportive significant other. He has been terrific and I'm so glad she has him right there. I feel so helpless as I can't fix it and wish I could every minute of every day! I go often to see her and also have the girls, my two darling granddaughters come here to help relieve their anxiety as much as possible. I feel angry she's so sick, sad and get so sick of the stupid things people say. Like "think positive, or have you tried this..., or you have to keep living" I know I have to keep living but how do you focus on your happiness when your daughter has zero? Does anyone else out there have the same feelings?
Chef jd said...
5 months ago
Been caring for my Lymie/ CIRS wife for 8 yrs now with only glimmers of better days sporadically. Our finances are a joke now from the ubiquitous dozens of specialists that one typically sees over time. Right as the Lyme and most coinfections wasn't showing up anymore, toxic mold stepped in its place. We gave up our wonderful apartment in Brooklyn, NY and are in the country now. It's beautiful but especially challenging g when I have to leave my wife for a reward days at a time. Also really tough to get her up and out to see her doc in NYC. How are people getting by when resources are thin and you don't want to alarm your sick spouse that it's getting tougher to pay for treatment protocols?
Weed 59 said...
6 months ago
My 78 year old father has been given 6 months to live. I live in Texas at the moment but I will be moving up to live with my younger sister. She is a little scared and has some issues mental wise of her own. Our house will be 10 min. Away from our dad's. We can't live with him as he keeps the house at 98 degree's because he has hardly any lower body circulation. He has had 2 major heart attacks he was not suppose to live though but did at the age of 47. He has COPD and lung cancer and finally Exacerbated Congestive Heart Failure. One leg is 10 times the size it should be. So Edma plays in this big mixture of illnesses. His mind is still pretty much intact he is forgetful sometimes. Can't use is left arm. He will not let hospice anywhere near him. Says "he is not ready to die" I am 59 no ties except all my children and grandchildren live here in Texas. I really feel I need to do this for my dad. I am sure I will need advise and support as I try to bring him peace and Comford . I hate I will have to work full time so I have insurance. I just pray a lot and really trust God.. I will be up with him end of Jan 2017. He is very scared and lonely and I know what that feels like and I don't want his life ending with that feeling. Thank you.
7 months ago
This past Monday, I was diagnosed with Rheumatoid arthritis. My Grandma and Mom had the disease, so I wasn't surprised when I received the diagnosis. I work full time, juggle husband and 3 teen age stepkids, and I lost my sight 20 years ago.
I have an appointment with a rheumatologist in 2 weeks. The pain is awful, especially in the morning. I have to wake up at 5:00, just to take pain medicine so I can move enough to get ready for work at 9:00. Somedays, the pain is just too bad, I have to work from home. It's horrible!
I'm lucky that I have a loving spouse who always sees the brighter side. I was depressed over the diagnosis, and felt sorry for myself. I'd told him I was upset to find something else out. He'd said to me, "Look at the good news. You don't need any back surgery. Sure it's more medicine, and it's not curable, but we can deal with this." "I'm sick of being sick", I snapped at him. This morning, I told him, I couldn't take the pain anymore, that I was gonna go to the emergency room. Luckily, the pain medicine took hold, but I feel like an invalid in the morning, that he has to help me outa bed, walk me to the bathroom, and sometimes down the steps if I'm really bad.
8 months ago
I live with widespread chronic pain constantly with lots of things wrong with me & it seems to get worse starting off with fibromyalgia osteoarthritis pre diabetes major depression CHF with a small leakage in my lower right valve hytial hernia Pulmonary Hypertension fatty liver disease having problems seeing cant sleep half the time cant seem to be able to think or consentraite can't seem to find a good doctor to rerun all the test to actually do anything about this the only thing the doctor has me on is cymbalta 30 mg twice a day & dexilant 60 mg 1 times a day for my gerd & acids reflect I am so tired of being in pain all the time so any suggestions would help
9 months 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...
10 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!
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