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crazyk

SF Supporter
#1
I have an autoimmune disease called ankylosing spondylitis and severe asthma. I’m having a bad asthma flare up so I can’t work for a few days. It’s so hard to lie around and not think. When I think, I get upset. When I get upset my lungs start screaming. The worst part is I do none of the stuff to take care of myself. I do when it gets this bad cause I don’t like having to stay in the hospital. I do just enough. I wish I could figure out why. I’ve tried my whole life to do better
 

Anne Charlotte

Well-Known Member
#2
Hey crazyk, sorry about your health condition. What resources do you have? Do you have social contacts, friends, people that understand your situation? As much as I learned about a. s. it is important to do exercises and train your back. And do you know what triggers the asthma? I also turn into short-winded mode when I feel too stressed or when I have contact with allergens. Can you distract yourself a bit. Watch a movie, listen to some music or call someone and connect for a while.
 

1964dodge

Has a monkey as a friend
Safety & Support
SF Supporter
#3
chronic illness drains people I know I suffer from chronic illness and pain. we sometimes want to give up and want to stop taking care of ourselves, part because we don't care and part because we are delusional wishing things could go back to the way they were. we have to keep fighting and keep trying to get better or we will get worse and suffer more. i'm not going to bore you about my issues but I had to be on oxygen 24/7 since april, now i'm only at nighttime or walking. that's because I tried and got better. I get discouraged some days but I keep fighting. you have to do the same it will make a difference. if you need to talk I understand and you can talk to me anytime i'm here
 

crazyk

SF Supporter
#4
Hey crazyk, sorry about your health condition. What resources do you have? Do you have social contacts, friends, people that understand your situation? As much as I learned about a. s. it is important to do exercises and train your back. And do you know what triggers the asthma? I also turn into short-winded mode when I feel too stressed or when I have contact with allergens. Can you distract yourself a bit. Watch a movie, listen to some music or call someone and connect for a while.
I did ok during the day today but I’m having a hard time now. I put on a comedy and I’m going to decorate some bows for work so hopefully that’ll help. I just wanted a little connection
 

crazyk

SF Supporter
#5
chronic illness drains people I know I suffer from chronic illness and pain. we sometimes want to give up and want to stop taking care of ourselves, part because we don't care and part because we are delusional wishing things could go back to the way they were. we have to keep fighting and keep trying to get better or we will get worse and suffer more. i'm not going to bore you about my issues but I had to be on oxygen 24/7 since april, now i'm only at nighttime or walking. that's because I tried and got better. I get discouraged some days but I keep fighting. you have to do the same it will make a difference. if you need to talk I understand and you can talk to me anytime i'm here
Thanks 1964dodge, I could feel a lot better if I took care of myself. Maybe someday
 

Anne Charlotte

Well-Known Member
#6
I did ok during the day today but I’m having a hard time now. I put on a comedy and I’m going to decorate some bows for work so hopefully that’ll help. I just wanted a little connection
hey you, I think it is hard to focus on self-care when feeling so low. I just started to learn to care more for myself but it is a challenge to do it with more continuity. Anyway, I think you did a lot of what you could do for you.....comedy and decoration sounds fine. Coming on here and share how you feel is also self-care. Reaching out for people to talk to when I feel low is one of my "tools" too. I hope you will feel better soon and you can talk to me anytime. Feel thought of and seen, Anne
 
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Organicmaplesyurp

Some Chargie
SF Supporter
#7
Hey there,

Try not to be so hard on yourself for not taking care of your health. I have several autoimmune diseases and asthma too. It's just too hard to keep up with all of the work required to feel okay sometimes. I'm sure it takes a lot for you just to function every day, let alone take care of yourself as well.

I understand not liking the hospital, I've found that they can be more harmful than helpful when it comes to people with chronic illnesses, as they seem to be trained to care for able-bodied people.

I hope your flare calms down for you soon. Take care.
 

crazyk

SF Supporter
#8
hey you, I think it is hard to focus on self-care when feeling so low. I just started to learn to care more for myself but it is a challenge to do it with more continuity. Anyway, I think you did a lot of what you could do for you.....comedy and decoration sounds fine. Coming on here and share how you feel is also self-care. Reaching out for people to talk to when I feel low is one of my "tools" too. I hope you will feel better soon and you can talk to me anytime. Feel thought of and seen, Anne
Feel thought of and seen. No one has ever said anything like that to me. You do totally get it. Thank you
 

crazyk

SF Supporter
#9
Hey there,

Try not to be so hard on yourself for not taking care of your health. I have several autoimmune diseases and asthma too. It's just too hard to keep up with all of the work required to feel okay sometimes. I'm sure it takes a lot for you just to function every day, let alone take care of yourself as well.

I understand not liking the hospital, I've found that they can be more harmful than helpful when it comes to people with chronic illnesses, as they seem to be trained to care for able-bodied people.

I hope your flare calms down for you soon. Take care.
Thank you!
 

crazyk

SF Supporter
#11
Thank you for caring walker. I’m going downhill today. I’m actually following directions with my meds too. I’m having trouble with ins co not wanting to pay for the main treatment they want to give me of course. Hoping it gets straightened out today. I’m feeling so alone.
 
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kdm

SF Supporter
#13
hi crazyk i am allso diagnosed with anky losing spondyitis so if there is anything you might weant to ask me about my experince that might relate too yours feel free to ask me .
 

crazyk

SF Supporter
#14
hi crazyk i am allso diagnosed with anky losing spondyitis so if there is anything you might weant to ask me about my experince that might relate too yours feel free to ask me .
Thank you. I don’t usually bring it up or complain about it because I do absolutely none of the things I could do to relieve some of the pain. Every once in a while I just have to vent though
 

kdm

SF Supporter
#15
i am 61 my guess is your not that old i was 59 when i finally went to be diagnosed they sent me to a rheumatoligist who couldnt help it would have just been exercise i was active as i could be when i was able to be so i didnt miss out but i was given nothing but tylenol to help for me it is useless i do nothing i cant so i do not cause my self more hardships my main pain is in the knees to the feet but my biggest issue is i cant move my neck so it is from my neck to my head that causes me the most hardships .

just know i am here never worry about a rant a ? a anything with me feel free
 

crazyk

SF Supporter
#16
i am 61 my guess is your not that old i was 59 when i finally went to be diagnosed they sent me to a rheumatoligist who couldnt help it would have just been exercise i was active as i could be when i was able to be so i didnt miss out but i was given nothing but tylenol to help for me it is useless i do nothing i cant so i do not cause my self more hardships my main pain is in the knees to the feet but my biggest issue is i cant move my neck so it is from my neck to my head that causes me the most hardships .

just know i am here never worry about a rant a ? a anything with me feel free
I’m 53 and was diagnosed about 15 years ago after years of being treated like a hypochondriac. My fingers, wrists and feet are the worst. Shoulders, hips and back hurt enough to keep me up at not but manageable during the day. I’ve taken methotrexate and meloxicam which both worked for awhile but quit helping. My insurance won’t approve the newer meds. If I eat healthy, drink water, practice meditation and breathing my inflammation goes down and I don’t hurt as bad. I just can’t do it for any length of time cause I have this masochistic side to me that won’t go away.
 

1964dodge

Has a monkey as a friend
Safety & Support
SF Supporter
#17
I know chronic pain is hard to deal with, sometimes we just want to give up but we don't we keep fighting. @crazyk and @kdm i'm proud of both of you for trying to keep a positive attitude. I don't have the same thing as you but I know chronic pain/illness that's how I ended up here. please feel free to talk to me anytime i'm here and please take care of yourself. mike
 

kdm

SF Supporter
#18
I’m 53 and was diagnosed about 15 years ago after years of being treated like a hypochondriac. My fingers, wrists and feet are the worst. Shoulders, hips and back hurt enough to keep me up at not but manageable during the day. I’ve taken methotrexate and meloxicam which both worked for awhile but quit helping. My insurance won’t approve the newer meds. If I eat healthy, drink water, practice meditation and breathing my inflammation goes down and I don’t hurt as bad. I just can’t do it for any length of time cause I have this masochistic side to me that won’t go away.

ty for sharing me it was i could not exert my self do anything like run and that was early 20;s but that kept getting worse and worse i could do 1-2 days of non strenious work then need a week or more to recover untill like i say 1999 when the curveing in the spine started to show i would have been 40-41 and from 1999 untill now it has been a faster and faster decline .new things in my arms even from typing in the last 2 weeks

what the rheumatolist said was i needed to see him 30-40 years earlier but he allso said they didnt kniow what anky was back then

he couldnt belive the reg doctor even sent me to see him he ssaid nothing i can do for you dont fall i would be at great risk for breaking my back
 

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