gericalApril 30, 2013 at 5:28 pmPost count: 36
AZ Graves. While I am new to all of this I have been reading what everyone is going through. I too wish you the best and hope things calm down a bit!
ALl the best! GerihartjourneysMay 15, 2013 at 6:22 amPost count: 3
AZGravesguy and all others – I am new to the forum. I’ve been on and off ATD for years. I’ve been both hyper and hypo. I am now considering RAI. I so appreciate you sharing your journey here.donnabgravesMay 16, 2013 at 9:06 pmPost count: 11
AzGravesGuy….Wow, I have read all your post this evening. Diagnosed with this lovely disease today and waiting on RAI to be scheduled. Sorry, to hear that the RAI didn’t completely work. I was so excited seeing the progress you made and all the weight you lost.
I hope my RAI works and I loose the weight and feel good like you did for all those months.
Just curious, since you’re hyper again, has any of your weight that you have lost came back?
Thanks for sharing! You truly have missed your calling, you should have pursued a career in writing. I would have read all your books!
Let me know about the weight gain, if you wouldn’t mind. I hope your TT goes well when you have it.
DonnaAzGravesGuyMay 17, 2013 at 4:11 amPost count: 160
I woke up early with a stress dream so I thought I would take advantage of the extra adrenaline and get you caught up.
First the bloodwork:
As of last weekend
Tsh .01L (.45 – 4.5)
FT4 1.7 (.8 – 1.7) Normal!
FT3 6.0H ( 2.0 – 4.
I am on 5 mg methimazole once a day and 25mg atenolol twice a day.
Being hyper has paid off as I can actually handle the 2 jobs right now. Insurance starts June 1st!
My TED has flared considerably, but only in my left eye. Whatever symmetry there was before is long gone, however both eyes are constantly bloodshot and dry. I feel significant pressure behind my left eye and it is gritty again, almost like I have an eyelash stuck in it, but there is nothing there. The left eye now protrudes noticeably and the face in the mirror makes me want to cry. I don’t know who that person staring back is. It isn’t me.
My new second job is in finance and some of the “lending ladies” have been judgemental about my appearance. “he must be on drugs, look at his eyes, they’re red all the time” and similar statements about me looking “crazy” have been made. Fighting the Graves’ Rage impulse to correct them and point out their ignorance has been a tough struggle, because I would not be nice about it and that would not help my case for NOT being crazy.
HR is fully aware of my condition and has been sympathetic so far. It is hurtful being a victim of the whisper conventions, despite knowing it is nothing but ignorance. I should be stronger than this by now but I am just taken aback by these people and their snap judgements. I am trying to feel sorry for them and their small, small lives but reeling in shock of their gall. Fighting the brutal honesty impulse on this has been a big struggle. I am already upset over how my appearance has changed….especially because it is only in ONE eye. They are just poking the bear.
Aside from that bs, I feel good…..well, good enough. The wicked nightmares have not subsided, but I am mentally stable for the 18 hour days, not shouting at traffic, or sitting at my desks depressed. I yawn constantly but do not sleep well. My sense of humor has remained. The quiet sarcasm has increased, but it keeps my new coworkers giggling throughout the day.
I am still on the Raw anti-inflammatory diet and lifestyle….still down 56 pounds since the failed RAI. I am not hungry anymore. I have to force the protein shake down for lunch and barely feel like eating anything later…..but…..I am maintaining my weight, not losing. This makes me suspect I am retaining water. I am eating under 1000 calories a day and not losing weight….not gaining either. I have to wonder what my body is living off of exactly and why I am struggling to lose the final 5. Ah the mysteries of Graves’!
Thank you to everyone who has posted their support and have stuck around for the ride thus far. I appreciate your responses and find great comfort in knowing I can document and vent to all of you and not be judged, called crazy, or be whispered about. Lol!
It’s 4am now, time to start meditating so I can make it to Saturday! All I can do is take it day by day and make the best of it. I have Graves’ but it STILL doesn’t have me.StymieMay 17, 2013 at 7:37 amPost count: 195
You are an inspiration to us all! Your positive attitude and hard work and dedication are nothing short of amazing.
You really inspire me. God bless.
DianeSueAndHerZooMay 17, 2013 at 8:23 amPost count: 439Stymie wrote:Azgravesguy,
You are an inspiration to us all! Your positive attitude and hard work and dedication are nothing short of amazing.
You really inspire me. God bless.
What she said! You are amazing!
SueKimberlyOnline FacilitatorMay 17, 2013 at 9:56 amPost count: 4286
Great news that you are in the home stretch of the “countdown to coverage”! Sorry to hear, though, that you are experiencing TED symptoms – and that the ignorance and insensitivity of your co-workers is *not* helping matters. I might be tempted to “anonymously” leave some literature like this on their desks one day!
(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).
If the eye issues are still bothering you once your coverage finally kicks in, a visit to an experienced ophthalmologist would be a good idea, just so you can get a baseline evaluation done.
We had a nutritionist present at our 2009 conference in Charlotte, and she suggested not going below 1150 calories per day. You might consider *adding* some food over the next couple of weeks just to see if that makes a difference.
As always, many thanks for sharing your Graves’ journey with all of us!
Take care!vanillaskyMay 17, 2013 at 10:25 pmPost count: 339
Hey Robert, glad to see you posting but upset that you have some real morons in the workplace. I can’t stand when people have “whisper” conventions. I’ve been the victim of that myself especially when I worked in retail years ago.
“She must be aneroxic, bulimic,” very hurtful. They should have Graves’ then they would know and that’s just being mean and judgemental or maybe even “mental.” Who knows? Anyway, to Hell with them. You do what you have to!
The purpose of life is “survival.” If they haven’t learned that yet, they never will.
So sorry about the TED. Looking in the mirror and not seeing you must be awful but you are still “you” no matter what.
I admire your courage, I think I’ve told you that. Please let me know how you are. We were gonna fight this together, right?
I wish you ONLY THE BEST, you deserve it.
KarendonnabgravesMay 18, 2013 at 3:32 pmPost count: 11
Sorry, that you aren’t sleeping well and I’m truly heart broken and ashamed of the women at your work.
I have over come many things in this life and I can say “I understand how it feels to be made fun of” Many years ago I had a airchair accident and was paralyzed from the waist down and was told I would never walk again. I left the hospital with a walker and had to sling my lower body (legs) in order to walk. I had to learn to support my body with my arms. Once I concurred the bars and the ability to perform this act, I was allowed to be released from the hospital.
Months later I began gaining feeling back in my upper quadrant of my right leg and progressed to walking with a cane. The doctor at the rehabilitation facility called me her “Miracle Girl”. My friends talked me into go out with them one evening to cheer me up and I will never forget how heart broken I was when the guys made fun of me for walking with a cane. I remember arriving there so proud that I was able to walk with a cane and how I couldn’t believe how someone else could destroy any self-esteem or confidence I had just regained. That is when this really good looking guy came over and asked me to dance and I thought he was being mean, when I realized he was being sincere and he bent over and helped me up from my chair and helped me to the dance floor and picked me up and set my feet upon the top of his and danced me around the floor. I felt like a princess and I know in my heart that the creeps that made me feel heart broken felt bad for their actions.
Morale to this story is no matter how shallow some people are there will be someone out there to make up for hurting you. So, AzGravesGuy you hold your head up high and you look at your self in the mirror and tell yourself how handsome you are every day. Because, if you tell yourself this enough times you will believe it and you will become a better person inside and love yourself for who you are.
Thanks for sharing when you couldn’t sleep!
DonnaBoomerMay 18, 2013 at 3:53 pmPost count: 110
Hang tough champ and let the low-talkers go in one ear and out the other. Only cowards and bullies talk behind one’s back, ya know?
Keep your focus on you and what’s good for you. HR seems to have your back on this one so if it gets out of hand take it up with them. That’s what they’re there for.
I hope to heck you get to feeling and doing better right away.
Stay strong like an oak tree brother!
BoomerAzGravesGuyJune 22, 2013 at 9:57 amPost count: 160
I apologize for being absent for the last month or so. I am happiest when I am busy at break-neck speed. Lol!
First off, the bloodwork. Having insurance has opened a whole new door of diagnostic testing I was never able to afford before.
Cbc, ERS, CK, cholesterol-142, CMP, CRP, Thyroglobulin Antibodies <20, ANA-negative, U/A....all normal.
The good stuff:
TSH <.01 (.45-4.5) still super low.
FT3 4.8 (2.0-4.
FT4 1.5 (.8-1.7)
So the 5mg of methimazole once a day is working. No wonder I feel great! A little hyper, as I prefer, but great! Still on Atenolol 25 mg twice a day.
Here’s the kicker: TPO-ab is 508 (<35) so my body is still VERY angry at my thryroid. I however, am not.....anymore.
The only drawback I have found is even WITH insurance, finding an endo that can see me this year is still a challenge. A few I have called won’t even see me, they are diabetes dr’s only. Losers.
Working 2 jobs has left me with little time to feel sick, obsess over symptoms, or worry about the future. It isn’t an approach that would work for everyone, but it has worked like a charm for me. I haven’t felt this good physically or mentally in a LONG time. I even found the time to start walking/running every other morning. I have restless legs, I guess. I wake up early and can’t lay there any more. So down the street I go. Now that it is starting to NOT cool down at night here I may use the treadmill that has been an ironing rack for the last 3 years, but I like being outside. It isn’t too hot before the sun comes up, plus I run into an occasional coyote and what I think was a javelina. I didn’t stick around to find out for sure. ( They can be aggressive little pigs. )
So, in effect, I have my life back. The RAI failed, but I am still better overall symptom and spirit wise. Invincible? No. Optimistic? Yes. ATD controlled? Yes.
Surgery has been mentally bumped to next spring, as I want to take full advantage of FMLA when I get it done. I don’t feel as rushed anymore because things are pretty stable right now. Plus I still can’t seem to get scheduled with an endo anytime soon.
My left eye has receeded slightly. The right eye has caught up somewhat. They almost match, but no….They don’t. I am still bloodshot and dry 24/7. The Refresh Gel drops provide a good 20 minutes of “ahhhhhh” then back to burning. The “lending ladies ” have not said anything since I became friends with the head of their department. Now we are all friendly and work goes smoothly when I am there. My original job is being competently managed by long time employees that understand my motives and no longer feel betrayed or ditched, as I still dedicate as much time as I possibly can to my own business. Early morning and weekends are my business, mid morning into evening is “nameless financial corporation” time.
It is a busy busy life, but I am surprisingly up for the challenge.
If I was ever famous and they asked me to do a commercial for Methimazole, not only would I do it, I would do it for free. That’s how good I feel. Lololololololol!
Still eating Raw, Vegan, Anti-Inflammatory. I have instituted a 1 cheat day a week policy where I consume gluten based white carbs, or grains (barley, brown rice, millet) to preserve my sanity. I cannot seem to figure out where “Miracle Noodles” fall in the mix, but they do on cheat days.
I am now down 52lbs since the day I swallowed the RAI. No muscle tone but skinny. I am ok with that. One thing at a time.
Thank you Diane, Sue and Kimberly for your words of support! Boomer, great to see another guy around here. I know there are more of us out there!
Donna, thank you for sharing your story with all of us. Congratulations on your recovery, btw. Struggles do make us better people. You are a princess and I am a prince in my own right. Anyone who disagrees better be prepared for a verbal evisceration. Lol!
Off topic, but I need to talk to someone about it:
I had an old friend call last weekend. She was in town for a day on what she lovingly called her “cross-country farewell tour”. Little did I know she has battled pancreatic cancer for almost 3 years and was here to say goodbye to people she knew before she ended up on a beach in Hawaii, where when the pain eventually becomes too much, she will take the pills. No more radiation, chemo or surgery. It all failed and her clock was running out. She decided to go out on her terms, in the most beautiful place she had ever been.
This meeting threw me and shook me to the core. Saying goodbye was hard, overcoming the selfishness of judgement was harder. Sobbing in an airport terminal with the weakened shell of someone I once knew to be so vibrant and energetic was not what I had planned on. I respect her wishes and now feel compassion towards her situation, despite the horrendous circumstances and overwhelming sadness I feel. Her argument made perfect sense and I have to support her wishes. Her fearlessness scared me but made me face my own ideas of mortality.
What I learned from all of this was humility and acceptance that life is fragile. Whether I feel sick or not, I need to get up and take the wheel for all that life has to give, every day. I used to wallow in my own dysmorphic bubble that my illness was so terrible. It is manageable, now, but I feel guilty of ever having that mindset. ( My eyes are watering as I type this )
Meeting with her blew my mind and I still reflect daily on her words:
“No more wasting time. No more feeling sorry for yourself. Life is here to live, but you cannot outlive life, so get up. “
More so now than ever….I have Graves’ but it will NEVER have me.QZZznneJune 22, 2013 at 11:07 amPost count: 33
Thank you……that post did me wonders.
😎 happy for YOU!
SuzHarpyJune 22, 2013 at 3:12 pmPost count: 184
Great post, thanks for sharing, very sobering.
Good to hear you have found some improvements and stability, hope you track down a good Endo soon.SueAndHerZooJune 22, 2013 at 10:11 pmPost count: 439
So happy for you…. so sad for your friend, but she’s facing this with such strength and integrity that you can’t help but admire her and know that she’ll be OK.
Thank you for the update and messages…. very powerful.
SueArdengoodJune 23, 2013 at 5:03 amPost count: 6
I am new to the forum, just diagnosed last week. I spent the past hour or so reading your experience and catching up. What a great way to share with others and document your journey. Looking forward to reading more and learning from you!
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