[khandl]

#1059178

I am new to the forum thing. I have been living with a Graves for 7 yrs. It came back out of remission. My brother and I both have this and so did my cousin, but I lose her in March 2012. Its rare that Graves can be life threatening but it can happen. She wasnt take her meds because she hated the side affects and she past of heart failure do to Graves cause her heart to over work. Anyways, she was really the only person I could talk to about this because she understood and my brother is in the Navy, so I cant talk to him much. Its been really hard not having anyone to understand what I am dealing with. I have tried to explain and give information to close friends, so maybe they can be a support system, but all I get is the same thing. People kinda make me feel like I make it all up. Who would want to go through the mood swings, lost of interest, fatigue and all of the other things that comes with it. I tell myself all the time that I am not crazy and that it will get better. I decided to try and find a support group to help me cope because I realize that I dont have anyone in my life that really understands.

[adenure]

#1172749

Hi Khandl,

I am very sorry about the loss of your cousin. The sadness and stress of losing a loved one takes a toll on us. You know all too well how debilitating Graves is when we’re hyper. Are you taking ATD’s right now to help manage your symptoms and get your levels back under control? I know you are still grieving the loss of your cousin, but it is important to get back into a treatment regimen with regular blood work.

No, you are not crazy. But, I know what you’re saying when being hyper makes us feel like we are! The real you is in there; when I was hyper, I wasn’t sure if I’d ever be “me” again; that was a huge fear. I have 4 young boys and I spent a good 2 months barely able to do anything but cry, stay in bed and walk down the hall. Fortunately, my in- laws helped me a lot, my husband worked from home some days, and my dad came out to visit. My parents were very understand as is my husband thankfully. Some people did seem to think I should just “snap out of it”- mind over matter type of thing-. I do believe a positive attitude can help, but when you’re body is sick, that only goes so far. I didn’t eat for 2 weeks bc I had no appetite and the sight and smell of food made me gag. I drank Ensure and lost 13 lbs. in a month. My father in law said it was ridiculous and enough was enough and I needed to eat! I know there is concern and love behind people wanting us to just be better and get on with life, but when you’re sick, it just doesn’t work that way.

I’ve told my husband that this forum is the only place where people understand and get it. My husband supports me and loves me, but it’s hard to “get it”. I think what’s hard for people is that Graves is such a long journey of treatment/ healing/ recovery. It’s not like you’re sick and then better all of a sudden. I had a thyroidectomy 3 weeks ago and I feel a whole lot better than before surgery, but I’m not there yet- not 100%. I have friends/ family who think I’ve had the surgery, so now I’m better and all is great- ready to go! Not quite… better yes, but “normal me”- nope. Glimpses and moments and even some stretches of the old me, but not all the way yet.

So, welcome and big cyber hug to you. Get to your doctor and get back on the ATD’s. Once the hyper monster is under control, then you will think more clearly and feel better. Are you considering a more definitive solution? I was sort of pushed into it bc my liver couldn’t handle the methimazole, but I’m happy with my decision to have surgery. It’s nice not having the “what if I go hyper again” hanging over my head.

Alexis

[Kimberly]

#1172750

Hello and welcome to the forum. I am so sorry to hear of your cousin’s passing.

With your Graves’ coming out of remission, you have the same three treatment options (Anti-Thyroid Drugs, RAI, surgery) that you did before. You can find more info in the “Treatment Options” thread in the announcements section of the forum.

Below are links to a bulletin from the GDATF that talks about the mental and emotional issues that can come with Graves’ — and also a nice piece written by a patient living with lupus (another autoimmune disease) that really hits on what it’s like to live with an “invisible illness”. The good news is that once your levels are back in balance, you should see some relief from the mood swings and the fatigue. Wishing you all the best!

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

GDATF Bulletin:
http://gdatf.org/about/about-graves-disease/patient-education/whats-wrong-with-me/

The Spoon Theory:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

[Author]

Posts