Jul 5, 2016

Things are not always what they seem.

First of all, let me start this post out with me telling you that I am not writing this for sympathy.  In no way do I want you to say that you are sorry or that you feel bad for me.  Not even once do I want you to utter those words.  I am writing this however to help raise awareness about invisible diseases.  I am writing this to encourage everyone to be nice.  So many people are battling things that no one knows about and just because they look fine they are labeled by the many things that "sound" logical.

This photo was taken this morning.  I actually feel like I look pretty good today.  No, I am not bragging.  But what you don't see is this is the first day that I have actually not taken a nap.  It is the first day that I have been able to stand, drive, walk and do my daily things without losing all of my energy within minutes.  It is the first day that I have been able to focus and comprehend tasks.  The first day that my blood doesn't feel like it is going to run out of my skin because I can literally feel it going through my body.  It is the first time that my joints are working as they are supposed to.  For the first time in several weeks I am able to function as a normal person.

I have Hashimoto's Disease.  An autoimmune disease that attacks your thyroid.  Did you know that that stupid little butterfly shaped thing in your neck can wreak havoc on everything from your hair and eyebrows to how your feet work?  

It causes a brain fog so thick that makes even the simplest tasks seem like rewriting the constitution.  When that happens people just say I am a ditz and cannot be taken seriously.

It causes manic mood swings.  Ones that add crazy and emotional to the ever growing list of labels.  Oh but let us not forget the overwhelming exhaustion.  Not the kind where you just need a good sleep.  I mean so tired that even blinking your eyes takes energy you do not have.  But then again...that is considered lazy.  Or maybe it is depression.

My thinning hair and my ever thinning eyebrows, obviously I just dont know how to style and I should put the tweezers down.

How bout the weight?  Step away from the cake piggy....yeah if only it were that simple.  Trust me, I have stepped away from the cake and my weight and I still battle.

These are just the symptoms that are visible to those around me.  These are the symptoms that I can not put make up on and hide.  

These bad days are also the days that very few people know about.  These are the days that I am unreachable or "out of the office". I don't want sympathy or slack.  I am not looking for any special treatment or anyone's pity.    

My recent flare is simply because of medication issue.  All of a sudden my thyroid has decided to work again.  Therefor my dose is way too high.  Unfortunately it takes weeks to detox and undo.  My disease, though awful at times is usually very very manageable.  I would say 98% of the time I feel really good.  I am fortunate.  

There are so many people out there with sicknesses, that are truly legitimate and real and people are quick to slap a label on them that makes sense to them.  To put them in a box and shrug them off.

Diabetes is offensive and people should not eat so much sugar (when in MOST cases - especially Type 1 sugar has ZERO to do with it).  My daughter is healthy and happy.  Most people don't know that she has a device that is connected to her by IV that keeps her alive-- unless you see her use it, you would never know. 

The fact is invisible diseases are real.  Be nice.  Help where you can because you never know when it might be you in need of that same help.  

If you too suffer from something that can't be seen know that I am on your side.  I understand and I care.  

I am going to leave you with this letter.  No, I didn't write it, but when people do not understand Hashmoto's there simply is not a better way to describe it.

Hi. My name is Hashimoto's. 

I'm an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid.
I am now velcroed to you for life. If you have hypothyroidism, you probably have me. I am the number one cause of it in the U.S. and many other places around the world.
I'm so sneaky--I don't always show up in your blood work.
Others around you can't see me or hear me, but YOUR body feels me.
I can attack 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 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 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 and 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 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:
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'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.
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?
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 to the endless number of doctors you've seen, just how debilitating I am and how ill and exhausted 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 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 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'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 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 that have me. They are really the only ones who can truly understand.
I am Hashimoto's Disease.


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