June 21, 2018

Summer is finally here.  We have had temperatures of 30C since Monday.  Today it reached a high of 35C.   Years ago my sister and I were quite comfortable sitting all afternoon on the beach at Falcon Lake.  I could not expose myself to the sun like that these days.

June 9th my husband and I spent the afternoon at our daughter’s event in Winnipeg.  The event was a public fun day for the Society for the Ethical Treatment of Kraken.  I spent several days polishing my 5 silver tea services for the High Tea held during the latter part of the event.  My daughter made the most impressive food for the tea.  She constantly amazes me with her talents and creative genius.

Grandson came over on the Father’s Day weekend.  He arrived Saturday morning and stayed until Sunday afternoon.  We discussed the particulars of his upcoming move.  He will be moving in with us on July 10th and starting a new job on July 11th.

Spent this afternoon getting my blood done and getting an x-ray of my right shoulder, right hip and right knee.  My new doctor is being very thorough and is really making an effort in finding out what ails me.   After the blood work and x-ray, we met friends for coffee or I should say ice cream and smoothies.  Too hot for coffee.

I got some new books to read.  Downloaded the new Jonathan Kellerman book called “Night Moves” from Amazon.  The two actual books I got are “The Knowledge” by Martha Grimes and “The Seagull” by Ann Cleeves.  A friend on Facebook introduced me to Ann Cleeves and I have been reading her books ever since.

I have been rather discouraged and depressed these last few weeks so I decided instead of moaning and groaning about my aches and pains I would post the following poem/article.  Hope it helps at least one of you, fellow sufferers.

“Hi. My name is Graves Disease…
I’m an invisible autoimmune disease that attacks your thyroid gland causing you to become hyperthyroid.
I am now velcroed to you for life.
Others around you can’t see me or hear me, but YOUR body feels me.
I can attack you anywhere and anyway I please.
I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.
I can make you hyper, not just your thyroid. Then make you drop like a stone; people will probably start to think you have manic depression, doctors certainly will.
Remember when you and energy ran around together and had fun?
I took energy from you and gave you exhaustion. Try to have fun now.
I can take good sleep from you and in its place, give you brain fog and lack of concentration.
I can make you want to sleep 24/7, and I can also cause insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can make you feel very anxious or very depressed.  I can also cause other mental health problems.
I can make your hair fall out, become dry and brittle, cause acne, cause dry skin; the sky is the limit with me.
I can take you, you won’t be able to remember what you wanted to say two minutes ago. I can even make you forget words, names, and events.
I can make you lose weight no matter how much you eat.
I can make your thyroid gland swell so much it hurts to eat while making you so hungry you have to eat all day long.
I can make your eyes swell so that they pop out of the socket.
Some of my other autoimmune disease friends often join me, giving you, even more, to deal with.
If you have something planned, or are looking forward to a great day, I can take that away from you. You didn’t ask for me. I chose you for various reasons.
I thrive on stress. You may have a family history of me. Whatever the cause, I’m here to stay.
I hear you’re going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can help you effectively.
You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
Even when they do know it’s me, you’ll spend years trying the right medications, you may have the parts I attack removed or killed to get rid of me. That won’t work;  I’ll still be here, and I’ll still attack you.
There are so many other ways I can make you sick and miserable, the list is endless; high cholesterol, gallbladder issues, blood pressure issues, blood sugar issues, heart issues among others.  That’s probably me.
Can’t get pregnant, or have had a miscarriage?
That’s probably me too.
Teeth and gum problems? TMJ? I told you the list was endless.
You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.
You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you’ve seen, just how debilitating I am and how sick you really feel. In all probability you will get a referral from these ‘understanding’ (clueless) doctors, to see a psychiatrist.
Your family, friends, and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I am.
Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago.
They’ll also say things like, “if you just get up and move, get outside and do things, you’ll feel better.” They won’t understand that I take away the ‘gas’ that powers your body and mind to ENABLE you to do those things.
Some will start talking behind your back.  They will call you a hypochondriac while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a “normal” person, and can’t remember what you were going to say next.  You’ll be told things like, “Oh, my grandmother had that, and she’s fine on her medication” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE’S taking, doesn’t mean it will work for you.
The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.
I am Graves Disease.”  Shared by Angie Andews Falwell.

This entry was posted in Autoimmune disease. Bookmark the permalink.

1 Response to June 21, 2018

  1. Jan Judge says:

    wow that poem was powerful
    will email you for the rest
    hang in there
    hugs and prayers
    Jan NJ


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