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Singing the Blues to the Grave
Dear Thyroid,
I am sick of you, sick because of you and sick of waiting to see what new way you will bully me today.
A fever perhaps? Or random itching hives? Cracked lips? Not today, because I have HAD all of those symptoms once, so why bother with them again!! No, today, you are swollen all over and feel tender to the touch, distended and sticking out of my neck in the manner of a horny frog. Thanks. This is my favourite thing you have done so far.
If you are feeling sarcasm coming from this letter in waves, it covers the fact that I am frightened. I have never felt as ill as I have in the last few months and the blurry eyes, brain fog and all consuming rage seem to indicate something more sinister than Graves, even though I have worn the symptom sheet ragged from checking it so many times.
Plus, if it really is Graves, why do I have to be the ONLY person to gain an extra third on top of my original body weight? What’s up with that? At least if I was a size zero and feeling awful I could at least have some great outfits. But no, three stone and some serious bloating for me please!
I am a singer, Thyroid, and I am sure you can hear the rasp which has crept in, the thinning of tone. I know you can feel the aching when I practice. If I am afraid that you will take my singing voice there is literally no-one I can tell and I am sitting here with tears running down my face because if you take my voice from me I don’t know what will happen to me then. You already feel the need to humiliate me onstage- hey, check out the fat singer- so how long before you figure out how to do it offstage too?
Frankly, Thyroid, you suck. I am so pissed at you for doing this to me. I feel like shit and the medication so far is more expensive than effective. I want to be brave and tell you I will not be beaten by you. But this doesn’t feel like a fight I will win, more like a thyroid dictatorship. How dare you ruin everything I have worked for? I can’t be a fat singer with a shit voice. I can’t be a musician who has to go to bed at eight. Life doesn’t work in that way.
I can’t write any more this is too depressing and if I don’t lock down all those feelings now I will end up having a nervous breakdown. But Thyroid? If you had any conception of how bitter I am about the fact that you have ruined my twenties you would do the decent thing and stop tormenting me.
Please.
Jenny
Tags: Graves blog, graves causing swollen thyroid, graves depression, Graves disease letters, Graves forum, graves impacting singers careers, graves literary support, Graves rage, graves' affecting young adults, graves' disease, Graves' support, overwhelming symptoms of graves disease
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7 Responses to “Singing the Blues to the Grave”
Leave a Reply to Jenny
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I feel your pain. I have a goiter, I have mood swings, I don’t sing on stage, but I work behind a bar and usually feel extremely self conscious. I struggle with the roller coaster of weight gain & dieting. I have little energy to continue my “career”, but none to change it either.
All I can tell you is that as your levels come down, symptoms start to ease, emotions start to level out, and there feels like less of an emergency. I’m rounding out my 5th year of Graves’ after diagnosis. It’s taken me nearly as long to stop feeling like a victim ALL of the time. It still creeps in sometimes, but I’m learning.
I find it much easier to cope when I ask my not-so-little gland what I can do today to love it. When I waste my energy hating it, feeling disconnected with it, I know that healing will not come. Love and compassion for our own body and its parts is the only way to get it to cooperate. In its own time, though. If I read the comment that I’m writing right now a year or two ago, I would not have been able to really “get” the concept.
Feel free to contact me if you need someone to connect to. I know there are not many Graves’ patients with their thyroid still in tact out there. The only ones I have encountered already have their RAI or surgery scheduled. I’m committed to keeping my body as in tact as possible.
Jenny,
I am sorry you have Grave’s Disease. I also have Grave’s going on 2 years this October. I am allergic to Tapazole, but, my antibodies are coming down on their own. So far, I’ve avoided RAI and surgery. When I feel really bad, I take lemon balm and other herbs. Feel free to contact me if you’d like to talk.
-Rachel
Jenny,
I feel your pain too… I remember what it was like when I was told I had Graves Disease and Thyroid Eye Disease, a sense of relief, at last they found out what was wrong with me, but also a sense of dread. What is this thing with a name that sounds like death warmed up because that is just how I felt.. I thought I was going bloody mad, trips to the Doctors, told Virus sent packing, weight loss.. I was one of the lucky ones who had the anorexic face with the Panda/frog looking eyes.
I had to find out all I could about this AI disease that was attacking me, causing my neck to look like an extra boob. Family joking calling me Nemo on account of my Popeye’s (Prospotosis). Sweating like a pig, heart beat boxing palps that many a good tune was song on with the raspy voice on account of the goitre, foggy brain I did that many things or said ridiculous things that I just laughed them off..I don’t sing for a living like you do, I can’t imagine what it must be like for you right now but know this it will improve with the right medication and knowledge and wouldn’t be bad either if you had a good Doctor/Endo who knows how to dose and deal with GD.
I live in the UK and know all the pitfalls we have to encounter just to get the right help..I have since had a thyroidectomy not because I wanted to but because of a suspicious nodule. I don’t know which is worse clinically hypo and having to rely on substandard treatment for hypo..I think had I still had my thyroid which I never wanted lose.. I would have beat this disease or at least been on a maintenance dose of anti thyroid meds..I was getting stable and felt so much better for it.
My fear after surgery was not being able to talk or sing I could talk but took a long time for me to be able to sing, I felt I was straining my voice..I also wondered would things be any better for me, guess what they weren’t not because of trying but because trying to beat the system and getting the right dose/ medication is a nightmare.
Jenny don’t suffer alone we are all here to help each other and fully understand what you are going through, if you want to connect you are most welcome too..
One thing I will leave you with, don’t let this disease control you make sure that you are the one in control. Things may look bleak now and you can’t see the end of the tunnel but I can assure you it will improve, the fog lift the weight reduce the palps subside the sweating a mere trickle.. the confidence back and self esteem just give it time.. Ask questions demand results from your GP and Endo list your symptoms and if you need any help with it give us a shout I will hear you.
Can I ask what kind of music you sing. I would love to hear you. I love my music and write thytunes for Dear thyroid. If you want to connect just let me know I would love to help you through this a kind of Graves Mentor.
Keep your chin up
Lolly x
Would be great to talk, I am on here as jazzyjen but not entirely sure how this mingle business works….. [computer retard]
Thanks for your replies and advice guys- good to know that other people are listening 🙂
xxx
Jazzyjen if you want to talk ask Katie for my email address or if you’re on FB befriend me on there not sure how active mingle is or if I would even see it looks like it hasn’t been used and I have forgotten how to add friends on there too.
Jenny,
I have been on this thyroid roller coaster for 2 years now. First nodules, then undiagnosed Graves (I thought I was just drinking too much coffee!) with weight gain not loss, of course. Finally, multi focal stage 2 cancer. I had one lobe removed in July and felt great after surgery. I too am a singer and my voice recovered very quickly. After the fact they found cancer and I just had the rest removed. What a difference. I feel awful and I have a raspy voice like Brenda Vacarro for all who remember the actress. I just can’t sing. My endo said it might come back but it might never come back. I too cried the other day when the uncertainty got the best of me. I did read a blog about someone who was a vocalist who said it took 4 months but she did get her voice back. Whatever happens, good luck.