[rae5]

in reply to: Help the GDATF by Sharing Your Story! #1176900

GDATF has been my absolute saviour. I shudder to think back on where I was at before I found it, and what could have happened to me had I not. Here I have found a safe, positive, informative and supportive environment.
The instant acceptance of other members, and talking to and reading others experiences, has me feeling a unique bond. Kinda like I now have a second family, only more understanding because they have similar experiences.
I know I can trust the info here and the information provided has been an invaluable source of knowledge.
When it all becomes too much for me and I feel like I just can’t do this Graves thing anymore, there is always someone here to support me through it. Noone here has judged me, the support is unconditional. I have gained so much knowledge and insight into whats happening to me and my life, and some great strategies to help along the way. Joining GDATF has greatly reduced my isolation of having Graves, I am not alone and there are people who understand.
Rae

[rae5]

in reply to: Help, desperately please if anyone can.. #1176478

Hi Deb,
Sorry to hear things aren’t going to plan. I’m not surprised they re-ran the tests! Hopefully this is just a little speedbump and that’s all. The stress factor is huge, it seems to me stressful events occur right when I am trying to reduce stress. It sounds like you are going ok with the patience and waiting, I guess you’ve had practice at that hey.
Speaking of crazy results…
I remember when I got my first lot of results it said ‘deranged’ across the top. I laughed at that for ages and told my family and friends the results of my blood tests was that oficially,’I am deranged’. I did get a few strange looks and I laughed even more. The word ‘deranged’ fit quite nicely for me at the time as being very hyper it’s exactly how I felt. Thats just my strange sense of humour, it keeps me going.
It really does come down to attitude and positive thinking. I like yours. Having two working arms and legs and breathing on your own is definately a good thing!!! Hope to hear about your visit to endo soon

[rae5]

in reply to: Help, desperately please if anyone can.. #1176476

Deb, thank you so much. The thought that I could do something to stop the diarrhea didn’t cross my mind at all, I just accepted it as a part of being hyper – Duh me! lol.
We do have a priceline here so I will go in and see if they have some and definately give it a go. Would be well and truly worth the $6.99! The bouts of tears have stopped now, thank goodness! I am very very curious to see what results the next labs bring, I don’t think I’m actually seeing my endo at all, the appointment card says it’s with ‘consultant’ whatever that means.
How are you going Deb?
Cheers,
Rae

[rae5]

in reply to: Help, desperately please if anyone can.. #1176472

Hi Jack,
Thanks for your offer to speak with family and friends. I am really lucky in that on my side I have understanding. It was his side that didnt. I do appreciate your offer but as he is not interested, there is no point now. I will try to get well and move on.
I do hope that you find some peace sometime in the future and wish you the best of luck. Look after yourself ok.

[rae5]

in reply to: Help, desperately please if anyone can.. #1176470

Hi Jack. Your story is so sad. As I was reading it I was fine until I got to one bit and all of a sudden the realisation came of exactly what I was reading. I burst into tears and have now cried all morning. It all just seems so unfair.
Is your wife recieving any kind of treatment at all? You mentioned she has never been ‘properly’ treated?
From the perspective of someone who experiences the effects of Graves first hand – I would strongly recommend giving her as much space as you can, until the day arrives where she fully understands the impact of Graves and is being properly treated. This suggestion is not ‘abandoning’ her, but simply being patient and giving her what she is asking for and possibly needs right now. Also, Jack – You can’t help anyone while in jail!!
Kimberly is right, most people don’t understand the effects of Graves on emotions etc and will not understand what you have been through with your wife. Or why as a result that you are now acting and feeling the way you are. I really dont know what else to say. Kimberly had some great ideas in her post.

Thank you so much for your offer of help. Your post has already helped and I am sure it will help many others. This forum has so much info and support to offer, I really do hope it helps you too.
Rae

[rae5]

in reply to: Help, desperately please if anyone can.. #1176467

jaqeinquotation – Thanks! It’s really helpful just knowing I’m not alone and there are people here who ‘get it’. Your comment about him not being as strong as I am really made me think. Your comments are so positive, thanks!
I am going ok. Somehow hearing about the huge struggle some others have had and are going through now has made my own seem smaller for the last few days. That’s a good thing(for me, not them!) and has gotten me through those first few really hard days. Have had no contact at all with said ‘ex’ and don’t intent to start any. It’s probably good timing as I just want to concentrate on getting well and don’t need all the extra stress that seems to bring. So, thats where I’m at now. And yes, my gut tells me to stay away from him.

I have a feeling I am going hyper again. Dose was reduced couple weeks ago. Due for more labs in couple of weeks. My anxiety had gone but is now kicking in again, I am so very tired, My pulse is higher, feel like palpitations every now n then, I’m waking up through the night, can’t think properly, head feels floaty, I seem to really speed up in the afternoons, diarrea(?) is back, my fingers keep tingling, hands go to sleep constantly through the night, definately irritable though havent yelled at anyone (yet), thankfully. In saying all that, I’m not feeling out of control hot like I was before…It’s so confusing!
Will wait for labs and see what surprises they bring.

[rae5]

in reply to: I’m ready to take the bridge! #1176731

Oh Karen. What a pain in the #$%! Based on Kimberlys post it does sound like there are a few options to help get things sorted with your insurance. Or I guess even temporarily for now with one of the free/low cost clinics. How frustrating with the insurance! It sounds like you do agree how important it is to somehow get that medical attention as soon as possible. (I just tried to put myself in that situation, I know I would be either on the phone doing the rage thing, or in tears)
Keep us posted if you can, I will be thinking of you and wondering how you are going…Good luck!!

[rae5]

in reply to: I’m ready to take the bridge! #1176720

Karen,
You have every right to feel how you do, I think you have done an amazing job so far and through your posts have shown just how strong you can be. What you have been through and are going through would have broken some people already a long time ago. I quite like the famous ‘I am woman hear me roar!” then add graves, family, husbands and spots etc and really hear me roar!!!.. And sometimes, when we run out of ‘roar’ we are left with this horrible dark depression, feeling like we just can’t go on anymore.
I’m hearing you and am right there with you in thought.

Im not sure about wisdom but here are my thoughts…Karen, you might be full!! Picture a jug that gets filled over time with water bit by bit…The jug is you , and everytime you experience something thats stressful, it fills you up a bit, then a bit more, then a bit more…its gets harder to cope as we get more full, and then one day, one more thing happens and we have no room left for it. At that time, we simply cannot fit anymore in and there is so much in there it’s so hard to go on.
The question is, how can you make some room? Only just a little bit, and you will find strength you didnt think you had. Is there something nice you can do, that’s just for you? I am guessing you probably arent keen to go anywhere feeling like this, and with the spots, but can you take time out? Take some really big breaths! I have a bath with candles and incense and concentrate on just breathing when I am full. Just relieving a tiny bit of stress gives that little bit more strength at that time when you really really need it.
I dont recommend you take a bath at the moment though, but something else?

I think you can cope, you sound like an amazing woman!! Need to change the ‘I cant cope’ to a ‘maybe I can cope’…

As far as ITP goes, My sister had it many years ago, they removed her spleen and she has been in remission since.

Karen, I dont mean to alarm you but ITP can become extremely life threatening. Do you have bruising as well or just the spots that are bleeding through?

I very strongly urge you to get medical attention as soon as you possibly can, if calling 911 is the only way to make that happen then I suggest doing that.
I imagine that would also get your husbands attention rather quickly too!
There is obviously something going on with your health, the sooner you find out what that is,the better. I dont believe menopause causes spots? The other stuff could be graves, menopause or something else. There is only one way to find out.

Most important, look after you!. Everyone else can wait.
Rae

[rae5]

in reply to: new member #1176698

Hi Gloria, welcome to the forum.
I was diagnosed around 4 months ago. I have worked the whole way through, so far and it is starting to get much easier now. I have had some days off here and there and I have come very close to quitting my job twice now, as some days it can just all be too much and really is a struggle. I am so very glad I didn’t quit though as I really do love my job and though It can be a real struggle now, it will get easier with time.
I have just recently spoken with my employer and I gave them some printed info on graves. I have just yesterday asked for a Temporary reduction in working hours and now have every Wednesday off. So I work two days then have a ‘rest day’ , then work two days, more rest etc.
There is nothing to say you have to give up work, but then every person is different. I would hang in there and see how you respond to treatment, talk to your employer about what you can both do over the next few months or so. I definately recommend to wait to see how you go, be kind to yourself and get plenty of rest.
All that said, for some people, they are unable to work at all. You didnt mention what is is about your work you are not coping with?
Rae

[rae5]

in reply to: Help, desperately please if anyone can.. #1176464

Hi Shirley, thank you so much for your reply. Reading your kind words and just knowing you have an idea of where I am at, has been really powerful and very positive for me. You sound very wise. I read your reply this morning(time difference) before work and it was what you said that helped me to actually go to work. I was very tempted to just go back to bed this morning, until I read your response.
I am thinking about your advice and hope to become a happy single like yourself one day soon. I think I get what you mean by never the right one at the right time.
I feel so lucky to have all of you wonderful people on this forum to talk to, this site has so much positive power!
You take care too. and, Thanks, your words and thoughts did make a difference to me.

[rae5]

in reply to: Help, desperately please if anyone can.. #1176462

No problem Jaqeinquotation, it’s great to hear some good news re Missy and hopefully can gain some inspiration there. I feel for her with the effect on her career and is great she is back! I have noticed some newspaper articles also in regards to Missy, they include some basic Graves info, perhaps more people will be educated. I am sorry to hear about your own license/work. I am only just hanging in there too.

On the topic of my original post, I am now officially single. I invited him over last night and tried to give him some printed info on Graves that helped explain what we went through. I apologised ‘Again!’ and recognised how hard it must have been for him. He didnt want to know about it. I do understand everyone deals with things differently, he wouldnt take the info at all. The conversation progressed and I tried to talk about the reasons he wanted to continue to keep seeing eachother in secret. He just said well thats the way it is. I explained very calmly(wow!) how I was feeling about ‘sneaking around’ that i could see why he wanted that and that it was getting hard for me. I also have a son and it’s getting very difficult. It also just doesn’t feel right. I said that I would like to be able to go out to breakfast or dinner together. I kept saying I understood why he would feel that way and that I just wanted to talk about it.
Well, end result he again said ‘well thats the way it is..its not going to change so we’ll just leave it at this then’. He wouldn’t even talk about it. I didnt get the chance to even suggest giving his family the info, it really didnt work as hoped at all. I was hoping to talk about what we can do to try make things better and how could I help.
He left, I didnt try to stop him, relationship over, very sad.

I can’t change the way he chooses to deal with this, that’s his choice. But I can change my part in it. If I had been more patient things might have improved. But after that conversation I really doubt it now. I now choose to refuse to sneak around, it really doesn’t feel good.

Sorry about the use of the forum for relationship issues. I just needed to tell someone, thanks! I can see it would happen a lot though. Maybe one of my posts and my mistakes might help someone else oneday. Be patient!
Good news is I was calm and had my emotions fully under control, no yelling at all. Big improvement.

Thanks for being here. Bad day today.
Rae

[rae5]

in reply to: Help, desperately please if anyone can.. #1176460

Yes, I was thinking about getting my eye checked out. My Endo said he could see some eye signs (you cant miss the swolen purple drooping eyelid!) but didn’t refer me anywhere. I didn’t think to ask at the time. I’m more inclined to speak to my doctor, he seems to be more approachable, so will ask when I see him next month.
Thanks for your suggestion, I’m on it

[rae5]

in reply to: my dosing style experiments #1176565

Hmmmm, very interesting. I am reasonably new to this and am just beginning to experience trying to find that ‘sweet spot’.(about 4 months in)
My doctor started me on an equally split dose of 15mg in morning, 15 at lunch and 15 at night. I saw my Endo a few days ago, my FreeT3 and FreeT4 are just on the low side, TSH still low.
My Endo reduced my dose by 20mg and told me to just take the doses 15 mg in morning and 10mg at night. For the last three days since the change, I have had waves of being very light headed, my pulse has gone up(am on beta blockers) and am alternating between feeling very very tired and then little spurts of energy. It’s been quite strange to experience.
After reading your posts, I am wondering if my Doc knows something my endo doesn’t, hence the original three way split. I am very curious about the effect of splitting doses three times. I will talk to my Doc about trying to split three ways again, to see if it changes anything. Will update when I’ve tried it. (providing doc agrees)

[rae5]

in reply to: Help, desperately please if anyone can.. #1176458

Deb, I am back to the research and havent made a decision as yet. Yes it will be my choice when the time comes. I think I just had a bad day that day and wanted a quick fix(there isnt one). It is taking me a while to fully get my head around whats going on. What a shock you must have gotten when you first went to your GP, then ended up in hospital and then suddenly had all this stuff to deal with!
The info on the contrast is very very helpful. I wouldnt have thought of that. It’s a very good thing you stood firm and didnt just go along with it. I love that you are your own advocate. I’m only just beginning, it’s been 4 months now and I hope that with more research I will gain more confidence to stand firm if the situation ever arises where I need to. My left eye lid is often purple and swolen when I wake up and sometimes it waters and feels a bit sore. The lid has drooped noticeably and the corner gets a bit irritated cos my eyelashes there arent in the right spot now I think, I’m constantly trying to open my eye properly cos the lid is drooping, but it’s not too bad. I guess that’s another waiting game to see what happens there.
I do like the idea of keeping a diary. Sometimes I find myself ridiculously bouncing around the house,going 100 miles an hour, today I’m very tired and opposite. Weird.
Happy Australia Day for tomorrow to you too! There are people driving around with huge flags on their cars here, we have fireworks etc on the forshore tomorrow. I haven’t made plans because who knows how I will wake up toomorrow. Will see what the day brings, then decide.
Oh, just remembered…when I did the whole internet/google thing to start with that scared the crap out of me. I got all sorts of just plain wrong information. I read all these amazing stories of natural ‘cures’ and was thinking to go natural for a while there. Thankfully, before I did myself serious damage I learnt more and realised that was a very very bad idea. I wonder how many others do themselves damage due to misinformation. – Scary!
Take Care
Rae

[rae5]

in reply to: Help, desperately please if anyone can.. #1176457

Thanks Kimberly. It took a couple of months for anything to change on the first dose, then he reduced it by 5mg, which I felt fine with and a few weeks after that I had huge positive results, and apart from TSH I was in range,mentioned before. Stayed on that dose for another month, then its now looking like going low so dose was reduced by 20mg. It’s just this lastest 20mg reduction that seems to be knocking me around a bit. I will definately take your advice and go to Doc if things don’t improve soon.Thanks!

[Author]

Posts