[Anonymous]

#1020039

After having Graves Disease since shortly after the birth of my third child (born Oct. 24, 2004), I have, like all of you, been on a bit of a rollercoaster ride. I wanted to share a few things that I experienced and how I have learned to cope. Maybe they will help someone out there who is struggling with the disease.

I did not find the Graves Foundation or the book, Graves Disease In Our Own Words, until early this year after I had an abnormal reaction to RAI treatment. It would have been very beneficial if I had searched and found this website prior to that; but, like many “Type A Personalities”, I thought that I had everything under control. For those of you that have read the book, you will recall the book describing a “Type A Personality” and the explanation that went something like this: This person is a great multi-tasker and piles on the work continually. They work, take care of the kids, clean the house, do laundry, etc. etc. etc. and at the end of the day (when they are clearly exhausted) they stay up b/c they haven’t made “brownies for the stray cats” yet. I laughed so much when I read that, b/c it describes me perfectly. Before I was diagnosed with Graves, I went many months being just plain neurotic about accomplishing tasks (I have always been a driven person, but I became fanatical about it). As I got physically sicker, it became harder and harder to live up to my own standards and I eventually fell apart. I had three little kids (age 5, 2, and newly born), when one day I woke up and decided that I needed to do something for myself b/c even though I hadn’t admitted to myself that I was sick yet, I knew that I could not go on as I had been. I had always dreamed of having horses, so (against my husband’s wishes) I built fence around the 3 acre pasture north of our horse and brought home two horses. My husband and I have always had a great marriage; but this time in our lives was very difficult. I knew that I needed those horses b/c I needed something to focus on outside of the kids, my house, and all of the millions of things that I was “supposed to be doing to take care of everyone else”. My husband viewed the horses as “just something else that you will have to take care of” and really resented their new presence at our house. At the time, I couldn’t understand his apparent “unreasonableness” toward the horses, and he thought that I was in a way “replacing him with the horses”. It was the hardest thing that I have ever worked through (both personally and with my husband). I couldn’t put a finger on why I needed those animals, much less be able to explain it to my husband, but deep down my own self preservation knew that I needed them. Shortly after I brought the horses home, I got into “Natural Horsemanship” which encompasses prey animal psycology in order to train and work with horses according to the way that they are naturally programed (instead of the normal way based on predator instinct). In the last two years, I have learned more about myself from those two wonderful animals than I could have ever thought possible. They gave me my own “project” that gave me a reason to let go of other “non-important” things like keeping my house meticulously clean that were driving me crazy. They also provided me with insight as to my own mental and emotional weaknesses so that I could make personal changes and strengthen my character in order to become a better leader. In a nutshell, Natural Horsemanship showed me how to improve myself, prioritize, and figure out what I needed to do to be emotionally and mentally balanced. In the 2+ years that I have had the horses, my husband has come to realize what a blessing they are and how much I needed them to figure out how I was going to not only survive but to become a stronger person.

Somewhere in the middle there, I was diagnosed with Graves Disease and decided to try anti-thyroid hormone treatment b/c I didn’t want to have the radiation restrictions with such small children. I developed an allergic reaction to Tapazol, so I took PTU for a year or so. I seemed to respond well to the PTU, so I hoped for remission. Well, that wasn’t in the cards. My Graves came back very quickly the second time and I was advised to have RAI early this year. I had an abnormal reaction to the procedure that left me severely hyperthyroid for weeks. The inner mental strength that I gained the previous years helped me to get through the physically devasting hyperthyroid levels. It was an awful experience, and some of you may remember the posts that I sent out during that time, but I survived it and I gain confidence everyday that I am not just going to “Cope with Graves Disease”: I am going to find a way to to live my life a better person because of it.

It is so hard to look outside of the “immeadiate picture” when life gets tough, and consequently it is so easy to let something like Graves Disease control your life. But, it doesn’t have to be that way. Look inside yourself for your own coping mechanisms (not everyone is going to become a “horse nut” as my husband calls me) but everyone can find something that will help them to improve their emotional and mental fitness and make them better able to cope. Us “Type A personalities” tend to want to accomplish large quantities of “things”, but sometimes you have to slow down and “Take the time it takes to do it right” (quote from Pat Parelli). That includes taking the time to figure out how you can deal with a very mentally, emotionally, and physically debilitating disease. There is a way. There have been some really rough times for me, but I have made myself strong enough and balanced enough mentally and emotionally to stay focused and moving forward when things get tough. Recently, following RAI, I experienced weeks of literally feeling completely and totally out of control. Losing control is something that scares me terribly (I am a control freak), but in the long run I have been able to get through that and I know that I am a stronger person because of it.

Digging deep to figure out what your personal coping mechanism is isn’t “just another thing that I have to get done today”. It is an integral part of dealing long term with this disease. It can make you or break you; and it needs to be at the top of the priority list. Just acknowledging that you have mental and emotional side effects of the disease is the first step. After you recognize them for what they are, then you can start to figure out how to deal with them. For some, that may mean professional help, for others like me that may mean finding your own personal project that will help you focus on something other than your disease. The great thing about horses is that they are mirrors of their humans. It can be very humbling to see yourself in that light; and very empowering to know that you can changes those things that you don’t like seeing.

I know that I still have a long road ahead of me. I am looking at several months of rebuilding to get my health back to what it was pre-RAI and probably a year or more to get it back to Pre-Graves; but somewhere along the way I figured out who I was and what it was going to take to not only survive but to develop into a better person post-Graves diagnosis than I was pre-Graves diagnosis. The first step is admitting that there is a problem so that you can start to figure out how to solve it. We all have different “coping mechanisms”, we just have to look deep within ourselves to figure out what is right for us. Support from others around us is a tremendous help, but this is a very personal journey for us and it will require significant self reflection to not only survive but to thrive.

I hope that all of you out there continue to fight and search and figure out a way to “not only get your lives back” but to become a stronger and better person in the process.

Anne Burkholder
Cozad,NE

[Anonymous]

#1075805

Anne, you are a truely remarkable person! Thank you so much for posting this. A lot of people would not want to post something so personal but I know that your post helped me and probably several others too! That’s what is so great about this group, we lay it all out there if we think it may help someone else.
I am a lot like you, a type A personality! Like I said in another one of my posts, I am getting so stressed out trying to do everything by myself! I have a bad habit of taking on other people’s problems and trying to help them too. My best friend’s husband passed away a few months ago and for about a month, I was going between my house and her’s trying to keep up with both. That was a HUGE mistake! I ended up so emotionally distaught that I literally couldn’t function at all for a few days. I had to make a decision that I needed to stop trying to take care of everyone else because I couldn’t even take care of myself properlY! I, too, have taken up a hobby or obsession to help me cope – PLANTS!!! I put together a few small greenhouses and started growing plants. It is so rewarding! It doesn’t feel like a job, it calms me! When I am digging in dirt, looking at my plants, seeing new sprouts coming up — I get one of the greatest feelings in the world. I leaves me with a wonderful sense of accomplishment (instead of the failure I feel in other areas of my life). I have found that I can stop when I’m getting really upset and go out to my plants and I calm right down. I, too, am learning a lot about myself sitting there surrounded by silence and beauty! It is the alone time I desperately need! I would recommend that everyone find something to do that takes their mind off Graves, so it doesn’t consume you! Don’t let it control your whole life and become your identity.

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