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The Gift Of Graves Disease

Post Published: 22 September 2009
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Category: Dear Thyroid Letters
This post currently has 24 responses. Leave a comment

Natasha, Dear Thyroid, Thyroid patient letters, Thyroid patients speaking out about their disease, thyroid patients writing letters to their thyroids

Dear Thyroid —

I’ve stopped taking my meds.   This isn’t a surprise.   I know you know this.   I want to take them.   Really, I do.   It just seems like too much.   Every night I look at the bottle in my medicine cabinet but I just can’t do it.   ,  ,  

After being diagnosed with Graves Disease I took the Methimazole faithfully every single day.   The medication worked.   I felt better.   Then the roller coaster started.   I felt too good and I didn’t trust it.   My metabolism slowed down and I went up a pants size.   For the first time in my life people told me I looked “healthy”.   My eating disorder reared its dormant head and I panicked.   I stopped taking the meds.   You didn’t like this so you punished me and I felt worse physically than I had in over a year.   I sort of took the meds again, here and there, off and on.   I cried in my endocrinologist’s office.   Yes, cried.   You were there; you know this.   Cried.   Me, the ice queen of emotions.   The woman who accepts everything like “Oh.   Ok… Too many feelings, too many emotions and I shut down.   I cried because . . . I don’t know why I cried.   My nice, amazing Endo who I trust completely was upset.   She knew I wasn’t taking my meds and I disappointed her.   I cried because I was overwhelmed thinking that my choice was get fat or stay sick.   You know that I will choose you every single time.   I will choose to keep you around unbridled and free over feeling well and getting fat.   I was terrified but I promised my endo I would at least try.   I started taking the meds again.  

I think you knew I didn’t trust you, didn’t trust my meds and didn’t trust myself.   On the meds I felt so great I began to wonder if maybe I was healed.   I was thin.   I was exercising.   I was diagnosed Celiac and eating more healthfully I have ever eaten in my entire life.   My energy levels were up.   My body felt well.  

I forgot that underneath everything I was fucking miserable and I had stirred up some nasty things when I cried in my endo’s office.   You couldn’t leave well enough alone.   You stirred up emotions and feelings that I buried years ago.   I did not like it.   I Did Not Like It!,   I DID NOT LIKE IT!!!,   Inside I was raging; I wanted to scream and scream and scream.   It wouldn’t have done any good — you wouldn’t have heard me.   The emotional pain you’ve brought hurts more than any physical side effect of the Graves.   Bring on the racing heart, the palpitations, the hair loss, the sleepless nights.   I will take them all over the anguish that is now a constant.

Every day feels like a fucking struggle.   The weight of the past year — the cross country move, the new job, the new city, the death of my grand-parents, the weather, the asthma problems, everything — has come crashing down on me.   The years of keeping my eating disorder hidden have finally taken their toll.   I am back in therapy.   It’s grueling and painful and I cry every time.   I feel beaten.   I want to fix myself and heal myself emotionally but there’s so much work I need to do I feel overwhelmed.   To your credit you have you have taken mercy on me and shown some kindness and compassion.   You have not made things worse.   You have given me space to try to heal.   For this I am grateful.  

I am afraid of you.   I am afraid of the medication that controls you.   I am always in control; even when I am out of control I am tightly in control.   You are the one thing I cannot control and that frightens me.   For a while I could handle the surprises that manifested themselves physically but stirring up my emotions was completely unexpected and is scary as hell.   I thought everything relating to my eating disorder was in the past and I liked it there.   I don’t know if I am strong enough to fight this part of the battle.   I thought I knew what I was made of.   I was wrong and I am afraid to find out exactly how vulnerable I really am.   Please be gentle as I embark on this journey.  

I will try to take my meds tonight.

~ natasha

(Bio) ,  I am natasha (aka @getsquirrel).   I am 34 and have Graves Disease.   I am a former triathlete, current runner, hiker,  and yoga enthusiast.   I’ve had horrible asthma since college and am now considered “pre-Emphysema” but I don’t consider it to be a hindrance to my athletic pursuits.   The best thing that’s happened to me this year is being diagnosed Celiac – I am learning to cook and I love it!!,  ,  🙂

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24 Responses to “The Gift Of Graves Disease”

  1. take it moment to moment – that is all any of us can do.
    I am touched by your words, the depth of your turmoil, your tears.
    I wish there was a magic word that I could say to make it all go away, but we know I can’t.

    I can offer unending support and the encouragement to simply live moment to moment.

  2. Chris says:

    Natasha, you are not alone. I am a thyroid cancer patient with an eating disorder and have gained 20 pounds in the last year. It’s not easy, but you have to take care of your thyroid.

  3. Bee says:

    Honey…putting on weight is a side affect but it looks a lot better than a skeleton in a coffin—I’m sorry to be so blunt but this is your life your fighting for. I can’t think of anything more precious than you tackling your deepest, darkest emotions and coming out on top…YOU ARE WORTH the struggle and you most certainly are not doing this alone…everyone on this site has personal issues…at least you’re confronting them head on. Sometimes admitting your shortcomings is the first step to moving thru them. Please be thankful every day for your life and know that you are worth every ounce of the struggle…so take your meds, confront your demons, and learn to LIVE…one step at a time ,precious, one step at a time…

  4. Cyndi Woodruff says:

    Natasha,

    What a powerful letter. I could actually FEEL your pain…your raw emotion coming through.

    I’ve had off-and-on struggles with eating disorders. Before my diagnosis and 60 lb weight gain, I’ve actually been hospitalized for my anorexia. In my early 20’s, after the birth of my daughter, I lost 50 lbs in 4 weeks….how did I do it? I would only consume Diet Dr. Pepper. Yep, that was it. When I was 26, it happened again. This time, I would only eat those freezy pops (cut open the plastic and push the “popsicle” out), and diet soda. This is when I was hospitalized. I went down to 95lbs. I am a size 4 when I weigh 140lbs. I carry my weight very differently than most. I have boobs that never go away! Anyway, I finally began eating healthy, mostly a high protein diet and was able to maintain a good weight. Then, I lost control!! My thyroid took over too, but the opposite way yours did. I kept gaining and gaining. Now, I WISH that my meds would overdose me and cause me to lose weight. Sick, eh? But, I am now SIXTY pounds over my good weight. I’ve never been there. That is 40lbs more than my 9 month pregnancy weight!! Ugh.

    So, Natasha, you are not alone in your need for control, your loss of it, and your struggle and fight against your own body. I think we should learn acceptance, Natasha.

    Just wanted you to know that you can e-mail me if you ever need to vent. Ok? Please take your meds and stay healthy.

    I am sorry for the length of this….Natasha just grabbed my heart.

  5. Natasha says:

    Wow. Thank you all so much your support. I am getting a little weep-y reading your messages.

    I forgot that this letter was to be published today. I had actually been trying to write a Dear Thyroid letter since June or earlier but the words wouldn’t come. Then one horrible day it all spilled out and there it was.

    I am better today but still struggling. My life got very stressful in the past month – my boyfriend broke up with me, I am applying to business school, I took the gmats on Saturday – and I realized that I need to take care of myself right now. All these stressful things are ramping up my thyroid and I can’t handle the symptoms and the stress at the same time. I am not good at taking care of myself but I am trying. I have been taking my meds fairly consistently – I’ve been making checks on my calendar when I take them. There are a lot of checks. It is hard but I so want to start business school next year at a healthy woman.

    I know that the weight gain far outweighs (for lack of better word) how I feel when my thyroid is out of whack but it is so so so hard to really feel this way. Intellectually I get it, emotionally . . . not so much. I am a work in progress in many ways.

    I am grateful for Dear Thyroid. I read everyone’s letters and am in awe of the strength of this community. Thank you for letting me be part of it.

    – natasha

  6. Megan says:

    Thank you for sharing your story so honestly. I wish you the best.

  7. Robyn says:

    I am in awe of your strength. I know how badly I feel, and how minimal it is in comparison to many who have shared their struggles here. I also know that we are all here for you.

    My sister had an eating disorder. She was 2 years younger than me, and when I came home for Christmas after my first semester at college, she was under 90 pounds. Let’s just say the family was dysfunctional, so there was no parental support. I enlisted a friend’s doctor parents to hospitalize her (at their cost–saints!). She lived that time. I tried to get her help from college 300 miles away, but ultimately she did not have the support around her physically and mentally, and she died before I graduated due to complications of starvation. It took me years of therapy to stop blaming myself for not quitting school and helping her, but I know if had I done that, my family would have sucked away my life too.

    You have people here who care. I care. Remember that the goal is a HEALTHY body, not a specific number on the scale or size of jeans. You can email me as well any time.

  8. Bee says:

    YOU SOUND STRONGER TODAY…BRAVO!!! one day at a time, baby…i’m going to let you in on my new motto about stress (unfortunately I didn’t write it ,just read it somewhere and adopted it):

    “Handle stress like a dog; if you can’t eat it or hump it, piss on it and walk away”

    sounds like just the cure for that no-good SOB of a boyfriend (unless you really liked him a lot and then I’m sorry). But, if you hated him then I hate him too cuz we’re all sistahs in this sorority and that’s what we’re supposed to do

  9. Susan says:

    {{{HUGS}}}} Take your meds. You are a better person when you do and the stress-well, it is still there but maybe we can handle it just a little better. Having thyroid issues has made this wall of steel so emotional. I don’t like it, how every small detail can seem like a mountain. It is hard for us to put our physical appearance aside-we are all mashed up together. One step at a time.

  10. Deb says:

    Dear Natasha…we’re all a work in progress honey! There isn’t one person on the face of this earth that doesn’t have some major issue(s) to deal with at some point in their lives.(They’re lying,especially to themselves, if they tell you differently.You are a very courageous person and I admire your ability to spill your guts out like that!You my,dear Natasha have a lot on your plate now and for sure those stresses wear us down and the little inner’committee’ voices love it when that happens!You know the ones that say “you’re not good enough,you ‘re too fat,you’re not exercising enough,you’re not trying hard enough” Well hon,you just tell those mental committees to go #@***! themselves! You’re the boss,you’re in control of this bus so tell them to take a flying leap! Good on you for going for therapy.It means you are doing the best that you possibly can at this moment to help your “Self”.I see that you run,hike and do yoga! Good for you!!!As long as you enjoy these activities and don’t overdo it(are you a tad Type A?)you are doing wonderful things for your body,mind and spirit but don’t be hard on yourself,do the things you love to do and know that you are a beautiful person in every way.No one should be judging you least of all your self!When you get to my age you realize that no one was really looking at you as much as you think they are! We are our own worst enemies sometimes but on a cheerful note Kinship is our own best medicine.So…hang in there honey!You are soooo worth it and you’ve got alot of living to do and much to contribute to others!I admire anyone who can tackle anything to do with Business admin.!These days I can’t even balance my cheque book!Hormones!Arrrgh!You’ve got some great goals Natasha so go for it but make sure you give yourself some time out to do the things you love to do and listen to that little inner knowing voice, the one that’s always positive and looking out for your well being.It’s there but sometimes you have to slow down a tad to be able to hear it but you already knew that didn’t you!That’s what yoga is always about…and at the end of your yoga session when you say NAMASTE,well I will say it now Namaste Natasha…it simply means what the wonderful purpose of this website means:I honour the place in you where the entire Universe resides,I honour that place in you of love,of light,of truth,of peace.I honour the place within you where,if you are in that place in you,and I am in that place in me,there is only ONE
    of US! Who would have thought one little Sanskrit word could mean so much…but that’s because you’re more than worth it!Keep taking your meds sweetie and trying to eat healthfully to nourish your mind ,body and spirit.I will keep you in my thoughts daily,namaste,Deb

  11. Kathy says:

    Natasha, there is so much love here today…for you and shared by and with all of us. You are so strong. That word ‘control’..I hate it so much when I am not in control, and like Cyndi, I have wished that the meds would make me hyper and make me go the other way…I so hate this weight gain. But, I feel like I am mending a bit. That I have to heal one day at a time, one hour at a time, 5 minutes at a time if that is what it takes. Keep up that tremendous strength that you do have, and when you need to let loose and cry do it, celebrate the tears that come let them wash over you. We’ll be here to lean on and support you tears, smiles and everything in between!

  12. Cyndi Woodruff says:

    Wow……..

    The love that I feel pouring from our hearts towards another sister is just an amazing energy!!! I feel so good just catching some of the outer edges of that love cloud.
    We CAN do this, can’t we? As long as we can be this kind, loving and compassionate—-why do we so harshly judge ourselves?? Appearances?? Our physical beauty? How foolish I feel.
    Our ‘beings’ are freakin’ beautiful. This thread is proof of that. Short, thin, tall, plump……I just want one big group {{{HUG}}}.
    xxxoooxxxooo
    Cyn

  13. Becky Lou Duffy says:

    Ya know something I sit here in awe of everyone here and the amount of support that has been dosed out. I really and truly think everyone here is awesome.

    I stopped taking my thyroid medication for two weeks and then as a result went extremely hypo. I too, was scared, I didn’t want it to control my body. I was complete control I wanted to be me, and I didn’t want the tablets to act for me.

    My TSH hit 79.1 which had previously been .39. I was in such a bad state and when I consider how high that became, I wasn’t far off a heart failure. Not something I have discussed much with anyone, but thats just my life. I only tell people what I think they want to know and then all of a sudden I break down and for me, my OCD rears its ugly head and I fall down.

    I have a friend who was so scared to take her meds and every day I would text her to remind her and just reassure her that everything would be okay.

    I cannot judge you and say you are doing this all wrong, because I have been there, I know whats its like and I have witnessed my friends doing it too. Its soul destroying for the person doing it, myself included and most awful for people watching you doing it also.

    If you need to chat, or anything, add me on FB Becky Lou Duffy and I will be more than happy to chat!

    Much Love and Hugs!

    Thank you so much for sharing your story.

  14. Zari says:

    Becky TSH of 79 sounds really scary. A medical emergency after just 2 weeks, and makes me wonder about the doctor who said if I missed a week of meds (I’m on full replacement post I131 that I’d be okay. Thanks for passing that on.

    Natasha I’m a guy but I related in so many ways. I liked my Graves till it went too far, and the low symptoms post treatment were baffling at times. But what I really related to was the eating disorder.

    My best freind is a triathelete who did the Hawaii Ironman several times. I had another close freind who was a very serious runner (he used it as a way to fend off heroin addiction and he ran the way he used) I was at one time very athletic and in particular loved hiking, preferably trips of several days. When time came to cut back lo and behold the eating disorder that had been hiding behind the physcial activity came out like a werewolf at the full moon.

    I’ve had to understand the difference between compulsive and fun. A 3 day hike was fun, the 2nd hour in the workout is compulsive, or something like that. I’ve had to understand that comparing myself to my triathelete friend is futile and stupid, just as I can’t compare myself to folks like Lou Whitaker. I’ve had to understand that when I’m lying in bed hungry and lonely at night while my wife sleeps with her arms around me and I’ve just had a good meal, that it’s not about nutrition or my marriage, it’s about my disease, which is addiction with my true drug of choice being MORE.

    Reality is I have not one but two life threatening diseases, and that treating only one of them is tantamount to treating neither of them. One is the thyroid disease which at this point responds sort of well to the synthroid now that the I131 killed the butterfly that I so enjoyed. The other is addiction as manifested in my eating disorder. Prior to that it manifested itself as alcoholism, but when I got sober I began to eat the way I drank, and initially treated it the same way-a 6 mile run is good for both a hangover and getting rid of all those extra calories.

    Junkies used to call it chasing the dragon. That’s how I sometimes feel. Why can’t I be that teenage boy who could drink beer, smoke pot, eat all he wanted, and stay physically active all day so that it didn’t seem to affect me? Short answer-because I’m 56. Long answer-because even then it wasn’t all that good for me (except the physical activity part) and it got steadily worse.

    Personally I found OA very helpful with the eating disorder. There are lots of very athletic women there. I’ve come to understand all sorts of new interesting words there, like exercise bulemia, body dysmorphia, and my favorite, filling the void…….

    Hang in there.

    Zari

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