Covid 19 and Chronic Illness

So by now Covid has shown the world just how serious it is.  Images and stories have flooded every media outlet in existence.  I'm not going to go over a 5w's of what it is, who gets it and on and on.  What I do want to do is give updated information to the chronically ill and immunocompromised.   

I was very active with this on Facebook.  So much so that AARDA, The American Autoimmune Related Diseases Association, Inc. sent me a nice little notification saying I had shared the most for that week.

Nani!?

I didn't think too much of it.  I don't do this blog or Facebook for money, clicks, or likes.  Many of my friends know someone with an autoimmune disease other than I and I just wanted to share as much information from every credible source I could find.  Most people had no idea how it would affect the chronically ill and the information was conflicting.  No one was really thinking about us and it kinda annoyed me.

One report said "It's like the flu."  Another report said, "You'll be fine."  Then we start hearing, "The elderly, immunocompromised, and children need to be concerned."  Then we added pregnant women.  All the while, those not in the at risk groups were going on about their lives like it didn't matter and possibly spreading this thing by not practicing sanitizing of hands and social distancing.

As we saw by the college spring breakers in Florida, many people think this is a joke and that the government is over reacting.  After seeing the pictures and videos from overseas, I say the government didn't act fast enough.  If we can prevent even half of what's happened abroad, then it's worth it.

So What Does Covid-19 Do?

There are dozens of articles and infographics on this.  In a nutshell, it gets into the lungs and causes inflammation.  It can lead to pneumonia.  The immune system tries to attack it but ends up attacking everything in sight.  It can lead to respiratory distress.  Here is an article posted on AARDA by Dr. Betty Diamond of AARDA's Scientific Advisory Board.

This video by Science Insider on YouTube is the best illustration for the disease and its progression.

What Treatments Are There?

I've read an article that says they are looking into using anti-malarials such as Hydroxychloroquine and Azithromycin to treat this.

Pause.

Both of these are drugs used in the treatment of Lupus, Rheumatoid Arthritis, and other diseases.  They suppress the immune response and reduce inflammation.

They are also working on a vaccine and trials for that began a week ago or so from the date of this posting.  For more information, check out the article written by the FDA here.


So what do we do?

Precautions

The following precautions come directly from the Pulmonary Fibrosis Foundation's website.

• Wash your hands often with soap and water for at least 20 seconds. Use an alcohol-based hand sanitizer that contains at least 60 percent alcohol if soap and water are not available. Please see the CDC’s Handwashing Information for more information.

• Avoid contact with people who are sick.
• Avoid touching your eyes, nose, and mouth.
• Stay home when you are sick.
• Cover your cough or sneeze with a tissue, then throw the tissue in the trash.
• Clean and disinfect frequently touched objects and surfaces.
• Facemasks should be used by people who show symptoms of COVID-19 to reduce the spread of the disease to others.
• Avoid travel to places where COVID-19 has occurred. 

I, personally, will wear a mask when I go out.  I catch colds faster than most and I'm not taking any chances.  Some protection is better than NONE.  The media has shown us that people don't listen and they could be infected and unknowingly be spreading it.  

This thing could go on for months.  I think we need to just accept that and plan accordingly.  I'll be posting a few articles in the next few days on what those of us with chronic illness and tight budgets can do to prepare ourselves and our families the best we can.

In the meantime we should stay calm, be kind, and use our heads.  Stressing out is no good.

Until next post.

Mixed connective Tissue Disease - My story

So, if you read some of my previous writings regarding my health you know that for a long time I was  suffering with no idea of what was happening to my body.  I went from one specialist to another, having this lab done, this test done, this scan done and nobody knew nothing.  I was angry, frustrated, and physically weak.  To say I was tired of it all would be an understatement.

Unable to work and provide for my hellspawn, I gave up and went back to my family in Connecticut.  It was a hard decision to make.  I thought, "It's okay.  We'll make the most of it."  It was the worst of it.  Truly.  My extended family was less than helpful and my social life was...non existent.  My new primary made me feel like everything I was feeling was in my head and he and my pulmonologist said that I needed to just change my diet and exercise more.  But I started having MORE things happen.  The numbness and tingling in my hands and feet grew worse, my joints ached so bad I couldn't walk up stairs, I couldn't lift more than 5lbs, I kouldn't hold anything in my left hand, and I was always tired no matter how much I slept.  After the initial onset in 2012, I had to suffer from spring 2013 to the fall/winter of 2014.

I had some labs done and the doctor said some stuff showed up in my labs and he was sending me to a rheumatologist.  By this time, my joints ached so bad I went to bed with a heating pad and took pain pills just to get through the day with no pain.  I kouldn't stand for long periods or sit in a shair.  Kooking was out, playing with my kids was out, forget doing my daughter's hair or tying shoes.

The rheumatologist was more friendly and compassionate.  She listened to everything I was saying.  I told her I felt like maybe I was wasting her time and it was all in my head.  She said, "No.  There's something going on and we'll figure it out."  We did blood work and she told me I had high markers for rheumatoid arthritis.  I was given some new meds and sent along for a follow up.  

Around that time, I also broke out into a rash on my face, neck, shoulders, and my hair was falling out in patches.  When I went to the dermatologist he felt it was something else-dermatomyositis.  Some photos were taken and he opened up communication with my rheumatologist.   Between the two of them, the meds I was given were diskontinued and a new round started.

Winter in Connecticut can be a beast and that winter was no joke.  My hands turned red, white, and blue.  My primary said it was Raynaud's and suggested ski gloves.  What the heck!?  How can one 37 year old have so many things NO-ONE ever heard of?

I noticed my eyes were really dry.  I attributed it to the cold and dry air.  Nope.  At my next appointment, the rheumatologist did a test and said I had Sjorgrens.  Another diagnosis.  Another disease.  Another specialist.  Another medication.  She did another panel of tests on me that was sent to Mayo clinic.  At my next appointment (Feb 2015-I think), she explained I had Mixed Connective Tissue disease.  It's an autoimmune disease in which several diseases are putting around inside all at once.  I was told I also had markers for lupus and that either the lupus or the rheumatoid arthritis caused my lung issue and hospitalization in 2012.  She said it doesn't happen often, but the organs can be affected long before the joints are affected.

So great.  When I do it,  I do it big.  I get stuff no-one ever heard of in health class or most of their science classes.  So, what do I do?  Start searching the internet for any and every shred of information I could.  Some of it was scary.  Some of it was enlightening.  But almost 3 years later-I finally had some answers.