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2020 Week #26

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2020 Week #25

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2020 Week #24

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2020 Week #23

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2020 Week #22

May is Arthritis Awareness Month.

This debilitating disease can affect not only the joints, but the skin, eyes, heart and lungs.  It affects mothers, fathers, grandparents, aunts and uncles, sisters and brothers, young and old. 

As seen on the Positively Rheumatoid’s Instagram Page

Today (the 20th) is World Autoimmune Arthritis Day.

In January 2007 I was diagnosed with an autoimmune disease – rheumatoid arthritis.   I take three medications for this autoimmune disease – methotrexate (originally used to treat breast cancer), hydroxochloroquine (originally used to treat malaria), and Cimzia (a biologic drug that I inject every other week). 

To say that I am not worried about the disease process and the side effects of the medications would be far from the truth.   Those of us who suffer from autoimmune diseases face the fears of our disease every single day.  

What truly upsets me are the assumptions made by others –

• the misunderstandings
• the lack of knowledge and disinterest in education
• the stupid thinking that symptoms are being exaggerated because the suffering can’t be seen.  

I have rheumatoid arthritis, not the wear and tear of your body osteoarthritis, but the autoimmune disease of rheumatoid arthritis.  Yes, it affects my joints.  Yes, my knuckles will get knobby.  Yes, my fingers may go crooked.  Yes, every single joint of my body is affected.  

But what those who assume aren’t seeing is how the disease process is affecting the rest of my body –

• my heart, my lungs, my voice box, my muscles
• the medications that wreak havoc with my intestines
• the battle with undefeatable fatigue every single day
• the battle with depression and anxiety of the todays and of the tomorrows
• the energy and the willingness it takes to get out of bed every day
• the uncontrollable tears for everything lost
• the sadness
• the need to prioritize activities to make it through the day.

Those who assume don’t understand what it means to have a compromised immune system, what it means that my body is attacking itself, and that the medications I take to control my disease kill off any bit of immune system I have left.  

It disheartens me that my autoimmune disease is disbelieved and belittled by those who are ignorant and those who make the assumption that there is no way I could be that bad off.  

Now we have the coronavirus to worry about. It has infused in those of us with an autoimmune disease such fear, and sadly that is not understood by the assumers either.  I know that some degree of fear and anxiety has struck everyone throughout the world, but the increased intensity of fear and anxiety of those with an autoimmune disease and those with underlying health conditions is indescribably through the roof.  We are scared.  

How do we with autoimmune diseases hold on to hope?  Where do we find hope for today?  Where do we find hope for tomorrow?  Where do we find hope for our anxieties?  Where do we find hope for our depression?  

I am truly struggling to find any hope. 

To start rekindling hope I have decided to try making it a practice of looking for the things in my life to be grateful for.  

Today, as I look outside as spring is reclaiming its place

• I am grateful for the spring’s warmth from the sun
• I am thankful for the budding leaves on the trees
• I am thankful for the early spring flowers bringing back their rainbows of color
• I am thankful for the birds and their beautiful springtime songs.  

Together we should start a gratefulness and hope journal.  I think tonight I will start! Every night write down three things that you are grateful for today or three things that have brought you hope today.  We will be thankful for our blessings.

You who quietly suffer through any autoimmune disease, my heart is with you.  I send each and every one of you a warm virtual hug.   As hard as it may be, please try to find even the smallest glimmer of hope each and every day.

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2020 Week #21