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New with Severe Asthma

I'm new to this site and when I saw severe asthma I instantly went to it I feel so alone sometimes because I feel like unless you have experienced it then you really don't know how it feels. I was diagnosed with asthma when I was 12 years old ages 12 to the age of 35 never even had to carry an inhaler then in an instant my whole world changed and it was extremely difficult for me at first to deal with just feeling of not being able to breathe and being scared to death of it happening again to me losing all my friends because they would think that I was using it as an excuse to break plans then they would say things like well you should be used to it by now for example my family stopped coming to see me in the hospital I was in the ICU and I broke down in tears because she never realized how alone I was and couldn't believe my family didn't at least visit sometimes being in the hospital  for weeks at a time in the hospital for weeks at a time always bothers me until she said something like how it was not right and how it broke her heart I just seen people have their own lives I don't want to bring anybody with having to go to see me in the hospital but I did ask my sister that fight why is it that you guys never visit me or call me to make sure I'm okay my sister said you're always in the hospital and it hit me like a ton of bricks basically she was saying to me it's a burden to us to have to go there to see you I think that is the worst my family made me feel ever my life I felt like because I was a burden to them so much that it didn't matter what happened to me I went from living a normal life to one day being rushed to the hospital waking up in the ICU on a ventilator learning that they had to do chest compressions my heart stopped because of asthma attack it just kept getting worse from there for the past 3 years I spent every single holiday every birthday every Mother's Day in the hospital with the exception of my Mother's Day I spend more time in the hospital and ICU this than I did at home gaining so much weight having a total hip replacement at age of 39 because of the steroids I have to take everyday I've been on Prednisone for over 3 years straight now everytime I get to about 20 mg of a taper I'm rushed to the hospital with an asthma attack I had to get a port put in my chest because the steroids destroyed my veins and they couldn't give me meds to save me anymore so basically I'll die without it to now my newest edition to my list of things that have happen since that day everything just changed is well my throat decides it wants to get in on the action and decides it really be a drama queen and just closes out of the blue no reason just one day I could not breathe my throat completely closed and please put on a respirator in CPR me the time I woke up in the ICU still on the ventilator and it was scary even for me so should be used to it according to my friends and family I am 39 years old I have a 19 year old son and I have to have my son babysit me how degrading is that as a mother to hear my son say no I can't go out with guys they are his cousins because he have to stay home with me I'm not allowed to be alone anymore in case my throat closes again the first time it happened was in January and it has happened about 20 times since then so nice or severe asthma I had to read it because I felt like it would be other people that could relate it's hard being 39 years old working and contributing member of society to being on Social Security struggling each month to survive on $700 a month and sometimes having to choose between medication and food I I forgot to mention 6 weeks ago all of a sudden I am having severe reactions to perfume now I can't even go to a store I basically live in a bubble at home I'm a very sociable person I'm a huge people person  and my mom always said I had the gift to grab I was hoping maybe for some advice and would love to maybe even be able to help someone too with something I've been through  that is just new for them they are scared and looking for someone to say it will be ok and sorry this is such a long comment I hope it's ok  I guess I should have said I'm pouring my heart out I've added a four-wheel if it is approved I just wanted to show that I will not allow this to you completely change who I am and if I not lost and I am feeling up to it hi oh and make sure I have a good time this was that New Year's Eve I decided you know what I'm going to get sick anyways might as well have fun getting somebody else's germs that put me in the hospital and happening at the grocery store he was such an amazing night ihaven't had that much fun in years thank you for everyone that  actually read this entire comment I really appreciate it 

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Comments 3

  • Melissa G

    Hi Jennifer! 

    Welcome to the AAFA Forums!  So glad that you found us! 

    Wow, you have been through a lot. 

    With your throat closing, are you having an anaphylactic reaction? Do you carry an epi-pen?

  • Deborah Bartlett

    Hello! Thanks for feeling comfortable to write your post. I read the whole thing. How sad. I am sorry that you are so very ill. 

    I am almost 56 years old. I was diagnosed with COPD almost 6 years ago. Diagnosed with asthma about a year later. Now my asthma is considered severe persistent. I don't have many friends anymore. I have heard Oh, you're always sick. And- Well, you can't go anyway. And my biggest trigger is perfume. I don't go out to eat anymore. I have to wear a mask when our in public .I am home all the time. I don't get out much anymore. I go shopping and run errands. That's about it. 

    I have had 2 times where, in the middle of the night, I had woken up with hardly any breath at all. First time, my lips turned blue. I live in the woods and wetlands, with the highest behind the back yard. 

    Life can be tough, dear. Best thing we can do is to remain positive. Stay calm. There is always something to look forward to in each day. Sure, our lives have changed. But we are still here! This community is a wonderful place to chat with people who are like us! I feel that if people are not sick, they don't understand what we go through. Take life one day at a time. Know that we are here for you!

    I know how you feel about being alone in the hospital. Years ago, I was in for 4 days, due to surgery. My Mom did not visit me. I asked my sister to, and she said she couldn't. 

    You take care of yourself the best you can! 

    Fondly, Debbie ❤☺