[Maria]

#1073260

Take a deep breath Burksr.

You will feel better but it is baby steps. I left this board quite a few years ago once I got my Graves legs but decided to come back to let people know that this is not the gateway to hell (though it may feel that way at times) YOU WILL FEEL BETTER with correct treatment.

[burksr]

#1019670

Hello,
my name is Becky and I was diagnosed with Graves last year, after waking up one morning and my eyes were swollen shut (and then dx’ed with a sinus infection in a local acute care center) that was on a Wednesday. By Monday of the next week I was in ER in a thyroid storm with a heart rate of 180-200, as sick as I thought possible. I was then stabalized, put on medications and sent home 5 days later, only to end back in the same ER several days after that with blood clots in my right leg and foot. I was air lifted out of here to UW Madison and after 5 surgeries in 4 days they did save my leg. Needless to say No one was talking to me about the Graves or that my eyes were bulging out of my head while I was recovering, and trying to heal this leg. I did have the thyroid removed as soon as it was cleared medically per all of the other things going wrong (clots were arterial not venous). I was off work for 6 months and (am a RN Case Manager on Skilled/Rehab unit) and have been seeing a doc at UW Madison for my eyes and he is recommending surgery on both eyes soon. If my next exam is stable (measuring at R25 and L24) he is considering scheduling the first of many I am told. God I am so scared, as I read everyone’s eles journey with this darn disease, it is incredible to finally really know someone else is going thru this too. I am really struggling with the mind numbing exhaustion, constantly. I do have blood work weekly per coumadin usage as well as my calcium and potassium levels flucuating so much. (I take as many as 14-16 k+ pills daily and 12 calcium/tums) I cannot begin to explain the gratitude I felt while reading some of these posts even though old, per it validated so many of the daily s/s I experience but yet no one understands around me. I hate the fact that there are good days and really bad days, physically and mentally. Not only does your body feel sluggish, and painful I ahve days where I cannot finish a sentence appropraitely.Word finding while in a conversation is huge and I cannot complete a sentence, at times because I cannot spit out what I am trying to say…..God I am rambling. That is another thing, I tend to think of everything as before and after this happened. Before this happened I could be on the phone, and yet typing out completely seperate notes or what have you/multi tasking, which I feel I cannot do now worth a darn. The concentration level is so different, you know what I mean…but so one else with out Graves does not get this at all. God thanks for listening I am going to have a good cry now…… hope to hear from someone.
Again, my thanks Becky

[DianneW]

#1073261

Hi Becky,

Wow, I do SO understand how you’re feeling! I’ve been down this road a lot longer than you have, but the story is so familiar. I remember the days when I could multi-task, but they are long-gone. Now I have a coffee mug that says, "Of all the things I’ve lost, I miss my mind the most." The ability to multi-task hasn’t improved, but people around me have learned not to feel hurt that I don’t hear them talk to me if I’m doing something else. I’m totally incapable of concentrating on two things at once. As for my memory, there’s a period right around the hyperthyroidism that seems like a fog, and people can tell me about events but I have to work hard to recall anything, even pet names or people I met during that time. My memory is somewhat better now, but I can still watch a re-run on TV that’s only 3 months old and really not remember most of it. It’s scary! The upside is that I don’t hold grudges.

The eye disease was the worst part for me. Besides being painful and uncomfortable, it was hard on self-esteem. People treated me differently, no question about that, and I reacted by withdrawing. In the last 13 years I’ve had 9 eye surgeries. After the later surgeries when results improved, I began getting more normal responses from people again, so they were definitely worth it.

It takes some time to feel better once you’ve been through all that you’ve just been through. I believe you’ll find that you’ll have more and more good days as time goes on. Most likely you’ll even feel improvement in your brain function.

A doctor at one of the GDF Conferences explained that every cell that’s formed while our thyroid levels are abnormal will be an abnormal cell, so until all those cells have had a chance to be replaced by new cells that were formed with normal thyroid levels, we won’t be completely healthy again. This can take six months at a minimum, probably much longer. The brain is very sensitive to thyroid hormone levels.

For a few years after my treatment I still felt somewhat crazy and very much intellectually impaired. The "crazy" is gone now, and I feel completely calm and sane. I still have some trouble finding words, and can’t do math in my head as I once could, but feel much less foggy-headed than I did at first.

To me it sounds like you’ve been through the worst and should be coming out the other side. Are you planning to have reconstructive eye surgeries?

Glad you found us!

[burksr]

#1073262

Thank you sooooo much for talking the time for responding to my rambling entry earlier. Dianne, Maria you have both been thru this and I am so grateful to finally have someone to talk to who has been thru this. As I had mentioned earlier I had so much medically (from the rapid heart beat throwing off the clots) going on the Graves was put on the back burner especially whenI made the decision to have thyroid removed so quickly. I did not see an Endo for quite a while, and even then with me being a nurse I think that docs just think we know everything. I finally said something to him several months ago (endo is local, but I see special eye doc in Madison) that no one has really ever talked to me about Graves. He had his nurse give me the same old tired pamphlets, so I really have leared so much here already. I did not realize that the mental delay/fogginess was part of it….I thought I was suffering from anoxia after having so many surgeries in such a short amount of time. I was grasping at straws trying to put together these contined daily symptoms. As I have read what everybody else is suffering thru daily, it was like a light bulb went off in my head!! Now I finally know what is wrong with me, thank you, thank you. As a nurse it has been really difficult daily feeling like maybe I won’t be able to do my job much longer….I will keep hanging in there because I love what I do.

As for my appearance, it has really been hard. People I have known my entire life do not recognize me right now. I am wearing glasses while at work (hiding my eyes as best as I can) per I only need them to drive. And that is new, never had any vision problems before this. I have cried more in the past year a one half I don’t understand why I look like this, and it happened so quickly. I have become very good at hiding, I work and come home period. I do not leave the house unless I have too. I am 43 and have a 23 year old son (out of house) and 15 year old son who sees his mom in pjs more often then not. It is pathetic really when I think about it. I read all the time even though my eyes are watering and blurry that is all I have left for me. By the way I have had 4 back surgeries with hardware in the past several years as well, what a train wreck I am…..

Again Thank you for taking the time to write back to me, I know how long it takes me with all the errors now. It did not used too…

Hope to keep in touch, I see the eye doc in May and will possibly set up first surgery…..I am soooooo scared. Have had so many surgerys in the past and good lord on my eyes???!!! YIKES!!! But I want to look like me again if that is possible, and he says it is!!?? I will keep reading and feel like I finally belong somewhere. THANK YOU!!!!!! Becky

[Maria]

#1073263

Becky, the buggy eyes were the worst. I totally get how you feel because my self esteem plummeted. I am so grateful of for my 2 eye surgeries (my eyes measured 22 and 24). I have heard terrible stories of multiple surgeries but I really only needed one. The second was more a vanity thing.

[DianneW]

#1073264

Becky, I hope you will consider joining us next October at the Graves’ Disease Foundation Patient and Family Conference, the weekend of October 16-18 on the east coast, location soon to be announced. It’s the greatest support group ever for getting together with others who are going through the same emotions, and for receiving encouragement from those who have come out the other side. You’ll be able to see people like Maria who’ve had the surgeries and look like themselves again. I went to my first conference about a year after my diagnosis, and seeing people who’d had the eye surgeries and receiving encouragement from them was one of the best parts for me. I also enjoyed being in a room full of people who looked just like I did.

Maria, I hope you will come too! You sound like someone who can be of encouragement to others. I’m glad you’re doing so well now.

[Maria]

#1073265

DianneW wrote:Becky, I hope you will consider joining us next October at the Graves’ Disease Foundation Patient and Family Conference, the weekend of October 16-18 on the east coast, location soon to be announced. It’s the greatest support group ever for getting together with others who are going through the same emotions, and for receiving encouragement from those who have come out the other side. You’ll be able to see people like Maria who’ve had the surgeries and look like themselves again. I went to my first conference about a year after my diagnosis, and seeing people who’d had the eye surgeries and receiving encouragement from them was one of the best parts for me. I also enjoyed being in a room full of people who looked just like I did.

Maria, I hope you will come too! You sound like someone who can be of encouragement to others. I’m glad you’re doing so well now.

Dianne I wish I had before and after pictures. I refused or tore up every pic of my eyes that I saw. The surgeon asked if it was OK to take before pics if he promised to make me look normal again and I remember crying and agreeing. I know he put them in his before and after album. Today no one would ever guess that that I had TED.

Sometimes I forget how to spell a simple word for a minute or I need a moment to find a word but our brain learns to adapt and compensate. Aside from the fact that I take a pill 3 times a day I pretty much forget I have a disease. Graves is just something I take a pill for and does not define me.

eta I forgot a word LOL

[burksr]

#1073266

Oh my god I am sitting here bawling like a baby….thank you for responding to my note. My gosh I feel such a sense of belonging now, I have finally come home!!! I am going to do my best to make it to that conference you spoke about, I will put in for PTO at work tomorrow. I am crying so hard I need to stop and get some tissues…..ok I am back whew. This is a good cry for a change, my god there auctually might be light at the end of the tunnel??? I was so sure it would stay dark forever, and it sure has been lonley. I have pushed away family and the few good close friends I had by putting myself in this exile of hell. My mom just said to me the other day , " What happened to my bubbly, fun smiling daughter?, You can’t stay this depressed forever" Which only made me feel worse at the time. But it is the truth, where am I??? Hopefully now that I have found you I can not feel so alone all of the time and maybe start to figure all of this out. Thanks again for taking the time to really listen from your hearts and respond accordingly, it sure made me ” title=”Smile” /> for a change!! Becky

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