What do you do when our normal symptoms are too bad? Where is the help for us during this pandemic?

Wearing a mask whenever outside your home is extremely important

Since I had a kidney surgery last November, I’ve had a lot of issues with my lungs collapsing. I was told it’s because the drain, after surgery, was taken out too soon for someone with my condition- but oh well, what can I do about that. Since then, I’ve had to go into the hospital to have my lungs drained. 

Last week, I started having trouble breathing again with pain shooting into my right side and kidney. I called the doctor immediately. Because of the coronavirus, I wasn’t even allowed to go to the emergency room. I was told I had to get a test. I waited in the testing line for over two hours. When I finally got to the front, I was told that since I was not over 60 years old, I did not qualify for a test. OKAY- now what. 

So, now, I’m just waiting for my systems to go so bad to where they will allow me to go to the emergency room. What is this pandemic going to mean for people like us?  

When I have a flare my symptoms could be any of the following, but are never the same: 

  1. Fever
  2. Upset stomach/ nausea/ vomiting
  3. Swollen and painful joints
  4. Kidney pain/ bleeding with urination 
  5. Sore throat with dry cough
  6. Sudden diarrhea and stomach cramps
  7. Fatigue
  8. Skin rash 
  9. Headaches 
  10. Sensitivity to sun/ light
  11. Brain fog
  12. Pleurisy
  13. Irritability/ depression
  14. Insomnia 

And, let’s face it, the list could go on and on depending on the day. 

One day the pain is so bad I feel like I’m dying or just want to end it all — but, then the next day – or two days – everything feels back to normal. 

So, with this coronavirus going around and the symptoms seem so much like what many of us experience on a daily basis, how do we know when to seek medical assistance. 

Another thing that makes it hard to know if our symptoms are serious is when the coronavirus symptoms seem to differ from person to person and from region to region. There are, of course, some symptoms are that universal and consistent: 

  1. Fever
  2. Dry cough
  3. Digestive issues 
  4. Difficulty breathing 

These symptoms are not too far from what people dealing with connective tissue/immune deficiencies experience on a daily basis. 


If your symptoms last more than a couple of days and your medication isn’t working, call for help, seek medical attention. 

  • Call your treating physician immediately – family doctor or rheumatologist. They will assess your condition and tell you what to do. 
  • If you are told to get a COVID-19 test, call the Health Department to find a local testing site. (*If at all possible, avoid large hospitals) 
  • TIP: Wear a face mask (with filters, if available) anytime you are outside of your house.
  • TIP: Etsy still has a lot of masks available. FACE MASKS

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