Monday, May 13, 2013
A share from one of my support groups:
An open letter to all those who have someone in their life who is suffering - maybe this will help you to understand just what is going on inside, which in turn helps us to deal with just what is going on.......
Hi. My name is Thyroid Disease. I'm an invisible auto-immune disease that attacks your thyroid gland.
I am now velcroed to you for life. I am so sneaky - I don't always show up in your blood work. Others around you can't see or hear me, but YOUR body feels me.
I can attach you anywhere and any way I please.
I can cause severe pain or, if I 'm in a good mood, I can just cause you to ache all over.
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, confusion and lack of concentration.
I can make you want to sleep 24/7, but I will also cause you to have insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.
I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That's me.
Crying for no reason? Angry for no reason? That's probably me too.
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 make you gain weight no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight - I don't discriminate.
Some of my other auto-immune 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;
That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.)
You may have a family history of me. Whatever the cause, I am 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 and will 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 anti-depressants.
There are so many other ways I can make you sick and miserable, the list is endless - that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That's probably me.
Can't get pregnant, or have had a miscarriage or two or more?
That's probably me too.
Shortness of breath or 'air hunger?' Yep, probably me.
Liver enzymes elevated? Yep, probably me.
Teeth and gum problems? TMJ? Hives?
Yep, probably me.
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 the endless numbers of doctors you've seen, just how debilitation I am and how ill and exhausted you really feel. In all probability you will get a referral from the '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 debilitation I can be. Some of them will say things like 'Oh, you are just having a bad day' or 'Well, remember, you can't do the tings you used 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'll 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.
They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ requires the proper amount and the right kind of thyroid hormone medication for YOU.
Not what works for someone else.
The only place you will get the kind of support and understanding in dealing with me is with other people who walk with me. They are really the only ones who can truly understand.
I am Thyroid Disease.