A letter from Grave's Disease

Hey y'all. 

I know that I haven't posted in a while. I came across this "letter" and I had to share it. For anyone who has no idea what I face on a daily basis - this is pretty darn accurate. There are several things that I could add to the letter, but I will let you read it at face value. 

Thanks for stopping by, 

Amanda

Hi.

My name is Graves, and I'm an invisible autoimmune chronic disease that attacks your thyroid gland.

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 anyhow, 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!

Oh, yeah, I can make you feel very anxious or very depressed, too. 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 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.) Maybe you 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 thyroid meds (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.

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 doctor how debilitating I am and how sick you really feel. In all probability you will get a referral from the 'understanding' (clueless) doctor, 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 used to do 20 YEARS ago", not hearing that you said 20 DAYS ago.

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 when 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 thyroid pill" 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.

I've been trying to keep this next part quiet, but since you're reading this you already know.

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. -- Author unknown

Update

A few people have asked how things are going. If I am feeling better. If I think the medicine is working. If it is helping. 


The short answer is no. 


The problem changes from day to day. 

Some days I have terrible breakouts. 

Others, I am sick and tired. Or sick, but not tired. Or not sick, but so very tired. 

Some days I have shooting pain behind my eye. Others, the pain is in my entire head and neck and shoulders. 

Some days I feel like the act of breathing will make me vomit. I try to hold my breath. Pretend I don't need air. Try to convince myself that the motion of taking in air and then expelling it like any normal person won't make me physically ill. Like my stomach doesn't feel like it is revolting. 

Some days, my body just hurts. 

I am exhausted, but I can't sleep.

If I am hungry, I am all too aware that eating just gives my stomach something to expel. 

But most days, I'm not hungry. 

I struggle to consume enough calories each day. I resort to eating something nutritionally terrible, so that I can be done with eating. 

I keep reading all the things that people with autoimmune diseases say they can't eat anymore and I wonder what on earth they do eat.

Go gluten free. Don't consume sugar. or dairy. or eggs. or carbs. or fats. or blah blah blah. The highly recommended diet is Paleo. However, one of their main sources of food is eggs... So there ya go.

The thought of all of the work that goes into what I should and should not, can and cannot eat make me want to just be fed intravenously. The whole joy of eating, of savoring food has been ripped away. 

I am tired. I don't understand how people live this way all the time. 

I don't understand why I have to live this way from now on. 

I can't wait to get back to the Endo's office so that I can rip into him with my million and one questions. Make up for lost time. That time he should have spent with me when he diagnosed me... in his office, not in a letter. Reassuring me and answering any questions that I might have. 

It is hard for people to understand all of this about me. When you look at me, I don't appear ill. I haven't had a stroke or broken a leg or had any lengthy stay in a hospital. In fact, long ago, when this illness wasn't yet understood, people who had it were sent to asylums. It is often thought that it is all in our head. As long as it took me to get a doctor to listen to me, I can understand why people began to think they were crazy. If you know anyone with something "invisible", be it Grave's or Fibromyalgia, or Hashimoto's or anything to do with autoimmune illness, please don't assume that because you can't see it, they can't feel it. That is something I never truly understood until now. 

Thank you for staying with me through my ramblings. Please let me know if you have a question. 

Snail Mail

"To whom it may concern, 

You have hyperthyroidism likely from Grave's Disease... I will start you on thyroid blocking medication.

Sincerely,"
(blah, blah big wig doctor)


Yes, you read that correctly. That is how I was diagnosed. 

I finally found a doctor qualified to speak to me about this issue. It took years of looking for just one doctor that would listen, fighting for tests, and giving a mind numbing amount of blood. The doctor that I found chose to notify me of my condition via snail mail. How cold.

He didn't call me into his office to tell me the news that I already knew. He didn't give me the opportunity to discuss treatment, ask questions, and give my input on how I would like to proceed with my life.  He basically told me to put a bandaid on it. 

"Dear patient who is just a number, 
You have an illness that has caused another illness. I have decided that you will live this way from now on. Your input is not necessary." 


I am trying to find comfort in finally getting a diagnosis. I am trying to not feel shoved aside. Just a number. So insignificant that a simple two line letter in the mail will suffice. 

I've got my little angel on my shoulder telling me that this is just one more step in the right direction. This is a small victory. To be strong. To have hope. 

I filled the prescription.  Not because agree with this method of treatment. 

I filled the prescription because my symptoms are getting worse. 
I find myself exhausted when I should be awake and awake when I should be exhausted.
I find myself shaking while trying to cut strawberries for my children's lunch. 
I find myself hugging the toilet a lot more that I'd like to admit. 
This very evening, I found myself rushing out of our small group at church and praying that I'd make it to the bathroom in time.  And pleading with my body to not fail me in public. It did.

The endocrinologist sent my labs attached to the two line notification. Of course I don't speak lab test, so it has taken me a while to decipher it. 

Today, it clicked and I understood. My numbers at not just bad, they are very bad. 

No wonder I am so tired and sore and sick. 

I will take the pill for now. 

However, I expect a face to face with the Endocrinologist very soon. I hope that we regain some lost ground, some trust that was lost. I know I have the strength to get the answers. I hope he has the strength to deal with me when I put my foot down. I can be pretty hard headed. 

I want to ask him why we are treating a symptom of my disease. 

If you had migraines, would you be happy with the doctor prescribing Zofran so that you aren't as nauseous? Or would you prefer to discuss fixing the migraines? 

It's common sense, right? Why haven't we discussed treating Grave's Disease? Why are we trying to kill my thyroid instead? If there is no way to treat Grave's, it would be helpful to know that. I couldn't tell you if that is an option, we haven't discussed it. 

I am strong. I am determined. I am still up for this fight.