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. 

On the uptake

Why is it that every doctor you see wants to run tests to confirm that the test he has in his hand, that the previous doctor administered, is in fact correct?

Story of my life. 

Last week, a very good friend of mine dropped in, bearing gifts, to check on me. She found out that I hadn't had my appointment with the Endocrinologist yet, so she moved her schedule around and went with me. I am so glad that she did. 

It astounds me how differently we, as humans, perceive information. 

The Endo asked a series of questions. He then told me I may not actually have Grave's disease, that we are here to figure that out. Even though he acknowledged that my numbers were all pointing in that direction. We needed to run more tests. He told me that if the test says one thing, he will never see me again. If it said the other thing (which every test has said so far) then we will have more tests to run and, eventually, I will get onto some medicine. 

I was so frustrated with this answer. I felt like this is ground that we've already covered. Why are we backtracking? Also, if this is nothing, why is it that you squeezed me in with less than a week's notice when you have a 6 month waiting list?  It just didn't make sense to me. 

Bless my friend. She was able to see this in such a positive light that I had to stop my grumbling long enough to consider that this news was, in fact, positive. She saw this as making progress. I saw it as more hem hawing and chewing the cud. I felt like he wasn't listening to the words coming out of my mouth. That the papers in front of him must be his lunch order because, if he could see what the other doctors had told me, surely we would be taking decisive action NOW. (puff out chest, look mean and authoritative) 

She saw it as one step closer to an answer. After some coaxing on her part, I saw her point and I tried to have a better attitude. We headed downstairs to get more bloodwork done. We clowned around with the Phlebotomist. Those ladies are always characters.  I left a little more light hearted. 

I would love to tell you that I wasn't the least bit cynical the next day when I received the phone call stating that I was right, again. I would be lying to you. I grudgingly told my fellowship group that night about the doctor visit and the results. Once again, my friend reminded me that this is progress. What would I do without her? She's like that good fairy tapping my shoulder and reminding me to be nice. To be strong. 

I scheduled a Thyroid Uptake and Scan for this week. Basically, this means that I had to take a pill that is slightly radioactive today. Tomorrow, I will return to the radiology department and they will scan me to see where the thyroid sent the radiation. The process takes about an hour. I will lie with a pillow under my neck and my throat extended for about 50 minutes. The radiology technician advised me that it will be uncomfortable and to take some ibuprofen before I arrive.

So, that is where we are now. It is still the waiting game.

I will try to choose positive thinking from this point on. 
I want to say, "it's just that..."  or "but it's frustrating because..."
I won't say that anymore. I will accept what is and work on what is to come. I hope.
For now, this will be my mantra:

If you want to research Grave's Disease, there is plenty to read when you google it. This disease is still in its infancy, as far as treatment and facts are concerned. However, Google doesn't really tell you what I've been going through. It tells you about the people who get enlarged eyes. It doesn't tell you that only a few rare percent of people actually experience that problem. 

My doctor told me that the thyroid can do ANYTHING. It can cause exhaustion, tremors, weight loss, weight gain, pain in the lower back and loins, skin issues, boils, a goiter, difficulty swallowing, loss of muscle, joint pain, body aches, brain fog, etc. 

I recently came across a blog that lists some 300 symptoms that people with thyroid issues can face. The blog was aimed at people with hypothyroidism, but it holds true for people with hyperthyroidism as well. I identified with so many of the symptoms that it felt unreal. I will share it with you below. Feel free to read more about this and ask any questions that you have. 

http://hypothyroidmom.com/300-hypothyroidism-symptoms-yes-really/

Here's another blog that I came across. It puts What It Is Like To Have Grave's Disease into words that I haven't been able to find. I encourage you to read this if you are wondering what it is like to be me. 

http://gdcoffeebreak.weebly.com/1/post/2012/06/what-is-it-like-to-have-graves-disease.html 

Thank you for your attention and time. I appreciate your support more than you know. 

Again, if you want to know more, don't be afraid to ask questions. I don't mind answering them.  

And then he told me what I already knew.

I was always a kid that went to church camp. From the moment I was old enough to go, I went. My first camp experience was in New Mexico, several hours away from my family, for two weeks. I was 9. I have no idea what anyone was thinking when that trip got scheduled. Never again did any camp that I attended last two whole weeks. More often than not, my mom was at every camp I went to after that first time. It's not that anything bad happened. I think it was a shock for both of us for me to be away for so long, but it wasn't harmful. I think that my mom was eventually just able to schedule time off to attend my future camps as our camp nurse. I loved that. There was something about her being there, just a short stroll from my cabin. I had comfort and security in that fact. She was always around. If we were playing volleyball or softball, she would set up a drink area to make sure that everyone stayed hydrated. If we went swimming, she was probably there watching and waiting in case someone needed her. 

One summer, mom was a little more tired than usual. She stuck it out. She still tried to be there. As that year progressed, she seemed more and more tired. The following summer, she was easily overheated. Instead of standing on the sidelines handing out water or gatorade, she was parked under a tree, waiting for us to come grab a drink. She was visibly exhausted and uncomfortable. That was her last year at camp with us. The next few years would be described as a "blackness" by her. She would fall into a black sleep and awaken into confusion and fog. Despite the increased sleep regimen, she wasn't rested. She will tell you that there is not a lot that she remembers during that time frame. One of her favorite memories is waking up out of one of her "black sleeps" and seeing me sitting at the computer. Being prom time, she told me that she'd been thinking a lot about prom dresses. This idea got my attention. She saw my typing slow down and knew that I was listening. About the time I looked over to see if she would continue this thought, she said "I've been looking at patterns".... She knew that I understood this to mean that she wanted to "ruin my life by MAKING my prom dress"... I guess my face betrayed my emotion. She howled with laughter. Admittedly, that is a good memory for me at that time as well. There aren't a lot of times that I can remember of that timeframe with her either. I remember the sleep, and the foggy conversations, and then the conversations that we had to remind her of the foggy conversations.

Eventually, her doctor came up with a diagnosis. Grave's Disease. I remember her coming home and telling me about it. Telling me that she'd had this for several years and it had never been caught. That this THING was the reason she was so tired. So forgetful. So foggy. I remember the several days that I couldn't be near her bc she was radioactive after they burned out her thyroid. I remember her telling me that it was hereditary. That I would need to be mindful of it as I got older. That I needed to start watching for the signs. 

Fast forward a decade. I was pregnant with my 2nd child. I was sick. Sicker than I've ever been in my whole life. So sick that I lost 30 lbs during that pregnancy. I knew that I had morning sickness. But, I also knew something else was wrong. I was losing function in one of my hands. Both of my hands hurt constatnly. My head pounded at all hours of the day and night. I found out was "black sleep was". But the Dr blew me off. He told me that I was pregnant and that it would go away. He was wrong. After I had my second child, it didn't go away. But, being a military spouse, I moved before I could further the conversation. I had to get a new Dr.... and another new Dr a few months into my 3rd pregnancy. Having a Dr long enough that they trust the words coming out of your mouth and not just "what the book says" takes a while. Apparently. 

Fast forward again. Directly after my 3rd child was born, I looked at all the symptoms I had and I knew. I demanded tests. My doctor sent me to several specialists. In turn, they each put me through a battery of tests. Every.Single.One. came back "normal". It was so frustrating that I almost gave up. In July of 2013, they ran another test on my thyroid. "normal".

I mean... AHHHHHHHH!!! No one my age should feel this way. It is NOT normal.

To be so tired. So sore. So foggy. Losing the function in my hands, along with constant hand pain, I was in pain for MONTHS because I walked on a treadmill (only to be told that it shouldn't hurt that much). Losing ridiculous amounts of hair. Being unable to keep up with my family. Being fatigued from walking the length of the grocery store. To have tremors throughout my body. To be so anxious, and irritable, and depressed. To have such difficulty in sleeping. To have horrible menstrual issues that sent me to the ER  (only to be told that it shouldn't hurt that much). To have debilitating roving pain play hop scotch throughout my body from day to day. To go from LOVING summer to barely being able to turn the heat on in the house during the winter (and opting to stand barefoot in the snow), and having a headache that never ever ever went away. It was enough to make me feel crazy when they continued to tell me that all of the tests are "normal".  

End of February/beginning of March 2014:

My physician sent me to a neurologist to address my tremors. 

The neurologist asked a lot of questions.  

He then told me that it was highly unlikely that I had Parkinson's.  (PHEW -- that was a relief, since it was not in my mind before that moment.) And then he mentioned that my symptoms were consistent with people who have Fibromyalgia. 

He performed MORE bloodwork.  
(I think I've provided enough blood to feed a small cannibalistic country by now.)

He called me the very next day. 

And then he told me what I already knew. 

BOOM

Grave's Disease. 

After more than 3 years, someone finally saw it. Finally listened. Finally looked deeper into the issue. Someone whose specialty is an ENTIRELY different organ in the human body. 

After 3 years, I'm finally getting answers. More answers than I care to hear and I have suddenly had a LOT of appointments to go to. 

I also have carpal tunnel in BOTH hands. 

I also have TMJ.

I mysteriously lost my appetite. 

Now when I am hungry, I only want a specific set of foods. Mainly fruits & veggies.

And I have been nauseous. 

And lost 14 lbs in a two week time span. 

And so very tired.

My husband took last week off and I slept through most of it. 

I saw my physician last week. He did more bloodwork to confirm the diagnosis and sent me for a thyroid sonogram.  His words as I left his office, "This could be a very big deal". 

The sonogram came back. There is a 7mm nodule present. But, apparently that is not something that is worrisome. We will check it again in 3 months to make sure that it hasn't grown. But, don't worry. I'd love to say that I didn't freak out. But, I might have. 

He sent out a referral and told me that I should hear back in the next week or two. 

The Endocrinologist's office called me the next day. "He wants to get you in fairly quickly" In a world where it takes a good month to see anyone about any medical problem, those words still ring in my ears. 

I see him in just a few hours. 

...and I'm wondering if they caught it in time.... If it's been there for years... If I'm going to remember my children's childhoods. Or if it is going to take this time in my life away from me too. And then I think about my children. And wonder if they will forget the moments that they so long to remember in their children's lives too. 

All I can do is pray. And pray. 

...and REFUSE to let this THING, this intruder,  define me.