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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2 months ago
I'm sick of my pain! I just hate my life sometimes! I have advanced rheumatoid arthritis, and live on tylenolIII, and other pain medicine that either works sometimes or whatever. I still work a full time job, manage a husband who also works thank God, and my 2 stepkids who are still living at home. Mornings are hell for me to get outa bed, and this constant change in temperature change doesn't help matters any.
My routine in the morning is as follows: 3:00am, take medicine so that I can move to really get up at 6:30 and get ready for work. Sometimes I fall back to sleep, most times I don't because of the pain. 6:30, finally get up with the help of my husband Lee, who's had 3 heart attacks, stroke and double knee replacement and is still alive to tell everyone. Depending on the morning, sometimes I need help getting dressed, sometimes not. It's horrible.
Depending on how bad of a day it's been with the R.A., I either crawl in the front door, or I'll come in through our garage which has only 1 small step. My stepkids sometimes don't understand that I'm really not faking my pain! They're teenagers, and they just think everything's a joke!
I miss wearing my 3 inch heels to work. Now, I'm stuck with small heels or clogs.
Looking for a new rheumatologist, because I'm not happy with this one. I feel I'm dismissed whenever I tell him my medicine isn't working. We did the genetic test and found out my Mom had R.A., however, (God rest her soul), never told anyone. The thing that makes me angry, is I found my Mom's journals, and she'd written about her battle with R.A., and never told anyone to be tested!
An anonymous caregiver said...
3 months ago
Tried to go to sleep. But the pain got worse. Didnt want to take another pain pill, afraid of running out. So I took an antiflamatory instead, didnt help. Can barely type this. Hands hurt so bad! Shooting pains all over. Im 57 yrs old. On disability but I dont know how anyone lives on it, the checks are so small. I work 3 days a week less than 5hrs per day, but even that is so hard. Dr said how much I can work. Told him I have to. Im a widow and live alone. Cant help but wonder how Ill be able to take care of myself later on.....This pain is hard and hurts all the time. In the joints and always the muscles. Wake up every day with hands swollen and feels like pins stabbing them and numb at the same time. Takes half a day with meds just to feel some better. Hate to lay down knowing how Ill feel when I wake up, .And the lonliness.....cant hardly ever forget the pain so Im not a funny kind of person.. Very hard to deal with all this. Feel like Im complaining but theres noone to tell, except my kids. And I know they feel bad for me already, so why make them feel worse? i want a magic answer, a cure, I want to feel better.
6 months 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.
6 months 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...
10 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...
11 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.
12 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.
about 1 year 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
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