Learning to live with COPD/Asthma
My breathing Condition and Respiratory issues started with getting COVID 3 different times. Since then, I have a lot of diagnosis thrown at me then taken back like COPD, Asthma, Emphysema and Chronic Bronchitis. There was some speculation of long Covid. All I know is my quality of life has been significantly compromised. I have been oxygen dependent for 7 months so far. I have severe muscle weakness, leg buckling which has now confined me to a wheelchair. My biggest challenge is lack to communication and agreement between different health care providers. The irony through all of this, testing has not been able to fully explain my symptoms. Prior to March of this year, I worked full time, enjoyed traveling and spending time with my grandchildren. Since March I have been hospitalized twice and in Rehab for 3 months and now oxygen dependent for 7 months now. If anyone can relate or have recommendations that would be greatly appreciated.
My heart goes out to you,
. Have you seen a neurologist? We are not medical experts, but given your complilation of symptoms, it would seem that a good, solid neurology evaluation would be wise.
Self-advocacy is hugely important in cases like yours, even though it can be exhausting and expensive. I have two relatives who are great examples of teh power of perserverance and self-advocacy:
My niece was super active and fit and then, within two years, became skeletal and wheelchair-bound and suffered from chronic, unrelenting nerve pain. She was only in her late 20s. She saw 30 specialists and still had no diagnosis. Finally, her OB asked whether she had ever been tested for Celiac's disease. She had not and that was her issue. She is now fully health again, aside from some permant nerve damage. She would not be with us now had she stopped pushing for answers.
My brother is currently hospitalized, having lost his ability to walk three months ago. He's been through the ringer with one orthopedic doctor alluding that he was simply lazy and another suggesting that much of the pain (His has excruiating leg pain whenever he is moved or touched.) is all in his head. After several doctors, he has finally found a neurologist who is determined to find answers. She was the first to notice that all of his leg muscles are severely swollen. He is undergoing testing now for a rare autoimmune disease that might be the cause.
Here is a link to our Rare Diseases community: RareDisease.net. You will find lots of great articles about self advocay there and many people who are in the same position you are in now or have been there before. I suggest you check it our for more support.
Please keep us posted, if you don't mind. I'll be thinking of you. - Lori (Team Member)
