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One Response to “Chronic Snarkopolist: Finding a New Doctor – Teamwork”

1. Linda Larson says:

   19 April, 2012 at 5:36 pm

   I’m posting this here from another board for the new people who still don’t understand about this disease and are afraid or had thought they were crazy … or told “it’s all in your head”. In January of this year (almost 4 years after diagnosis) I hit rock bottom and somehow found myself on the computer looking up this disease. On the day I found my first GD board I spent hours and hours just reading and crying, relieved to know I wasn’t alone anymore, that others had experienced some of the worst sides to this disease and KNEW what I was going through and could understand. This post here and the next one I am sending are the 2 I printed up and made my husband and kids read…it helped more than anyone could know to make a difference in myself and my family once they too began to understand.

   I do want to note that this person had chosen RAI for treatment, same as I did…that RAI is a PERMANENT option, once done, there is no going back and trying to obtain remission or using any other treatment. Since I have been the RAI route (rushed into it without first learning about this disease…all treatments etc.) I just want to say that this is NOT a *quick* fix for GD, there are repercussions down the road using this treatment as the first step, and the permanent step.

   In this post, some of the symptoms may seem extreme, I have experienced many of them myself…after RAI and I was left to go hypo (“because hypo is easier to treat”…NOT) there are a whole set of other symptoms. There is no set pattern of symptoms, not everyone will experience all of these.

   I hope that these two posts will help others newly diagnosed the way they helped me.
   Jody

   Post # 1

   What you have described been there, and the worst is that I remember being there, in hell. It seems I have suffered with this since I was a teenager, but my parents who both have thyroid problems didn’t notice it in me. I am 39 years old and feel sometimes like 60. My severe moments started in 9/98. I started to throw up and wouldn’t stop, I kept loosing weight and could not control bladder or other side movement. Ended up wearing adult diapers so I don’t have an accident. Could not work for 6 months and then lost the job I had because they said my sort term disability expired and I was too embarassed to go on long term disability. My hair was falling out and fast, even my eyebrows and eye lashes were beginning to thin out fast. My pubic
   area was experiencing the same, as well as my arms and legs. My vision was changing fast. I didn’t know but I got blurred vision at first then double vision. That was fun! On the lighter side of this, I was able to see money on the street, contact lenses on the floor, every spec of dirt, twice and even found jewelry walking one day, that no one else could see, but I could cause I saw it twice. On the heavier and more dangerous side was that driving was becoming a hit-or-miss. Trying to place a cookie sheet in the oven, I had to close one eye and try to center the objective. My eyes were dry and crusty, never slept for more than 3 hrs at a time and then I was sleeping 18 hours a day and still felt totally wiped out. Could not get off the couch or bed, could not take care of my 3 year old, or my 10 year old or my 13
   year old. I had no interest in sex, fun, laughing, the only thing was
   crying. I could not eat without choking, I could not stop my heart from racing, my pulse was so high that I though a freight train was going by. I was having 12-18 bowl movements a day. I was having panic and anxiety attacks, I considered suicide, but didn’t know why? I was very depressed, I dropped out of evening classes because I could not stay awake. Nothing I ate had any flavor to it, then the worst started to occur, I was loosing my memory. I could not remember where I was going, who I was, I had to start writing notes as to what I am suppose to do every minute of the day. I had to write directions to my doctors office and read them as I was driving.

   I was experiencing severely heavy periods, leg and muscle cramps, shaking, back aches, and my speech was now becoming slurred. My for a 37 year old, I was falling apart. Nobody knew what to do to make me feel better, I could not stand noise, I didn’t want quiet, I didn’t want lights, but didn’t want dark. There was nothing anyone could do to make me feel better or worse.

   The other thing was occurring simultaneously is I was getting gray very fast. I had never had gray hair, and within 2 week period, I was looking like I was in my late 50’s. It was like watching my life go past my eyes and mirror fast and furry. It was like watching Tim Allen in the movie the Santa Clause. It scared me, and everything I did or everywhere I went, I felt that this was my last moments. I know this was not right, but didn’t know how to help myself, until one day, this person who I knew was a type A individual, very aggressive, very intelligent, very outgoing, very flexible and very confident was not the person I saw in the mirror and did not like it. My road to recovery was to start with the RAI. After 3 months of having RAI, I was beginning to see some changes but not fast enough. I push myself a lot to the extreme and now I couldn’t even get myself going.

   I started by looking at old pictures and memorizing faces, names, birthdates, addresses and other information of family members I forgot. I started to memorize phone numbers, directions, and sports trivia. I started to use a day timer again and organize my life and
   thoughts. I got a new job that I love and respect and they respect me. I love my husband more today than yesterday and I know I need him forever as well as my children. I started doing things with them again. Not fast, but slowly, went to their sports practices. During my recoup time, I kept my 3 year old at home from day care and she was my angel. She would get up in the am and bring me juice and turn on the t.v. so I can watch cartoons to make me feel better. She use to bring me a wash cloth for when I got my hot flashes, my older children took it upon themselves to clean, wash and cook while I was held in GD purgatory. My husband loved me every second and tried so hard to make me forget my condition and kept telling me how much he loved me and it will be ok. When I felt good, even for a few minutes, I let them know and we did something together.

   I gained a lot of weight from going hypo, and now I am hoping that I can start loosing. Last night I returned to school, I have 6 classes left before I finish my Bachelors degree in Int’l Business Management and it was wonderful. The greatest feeling I got was that I took notes and remembered the lecture and told my family about it.

   I have rambled on enough, but I can’t help thinking that I am a better person and kinder person, then I was before GD. I thank my god for his patience with me and thank my family for being there. I know it’s hard and it seems impossible to concur, but we are warriors and we don’t give up, just like GD doesn’t give up. Keep smiling everyone and have a good and healthy weekend. It is wonderful to be able to share with so many of you my experiences that others could not understand, thanks so much to the people who put in so much work on this site and everything that they are doing to bring more awareness, God Bless you.

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   #2 Jeffrey Roberts

   Member #1 Publisher

   Group: Root Admin
   Posts: 124
   Joined: 22-November 08
   Gender:Male
   Posted 25 November 2008 – 02:52 PM

   HOMEWORK FOR HUBBY

   Give your SO some homework. Jean C shared this with another group and gave me permission to reprint it. Hope this one helps also.
   Jody

   Graves Letters Post 2

   Jean posted this on another board in response to someones request on what to tell her hubby because he didn’t believe what/how she was feeling…to me it was a perfect response and helped in my home more than anyone will ever know…so Jean, thanks again for this post, and for saying okay to me posting it here!!!!
   Jody

   Here’s an answer for your hubby hon,

   What is happening now is her thyroid is putting her thru hell by screwing up everything it is attached to. Before I ever even heard of Graves’ I was a healthy active woman who bicycled to work every day, ran up and down stairs all day and didn’t think twice to pitch in and shelve several book trucks of books (not too mention pushing around said trucks. Fully loaded they weighed 200 pounds easy). When I was finally diagnosed with Graves’ I was lucky if I could walk 10 feet without wanting to lie down and die.

   My bike is permanently stored on hooks in the shed. I couldn’t even stand at the kitchen sink for longer than a minute before I was too exhausted to do another dish. Even after being stabilized on the meds, it took a year before I could even think of climbing a flight of stairs and the most exercise I could do was water aerobics (I tried regular aerobics, but my muscles were still so delapidated that was impossible).

   She ain’t being lazy and isn’t making excuses. What Graves’ does to the body is frustrating and debilitating. One of the things it does is attack the muscles, making even the simplest tasks, such as walking or lifting difficult and sometimes painful. As for the weight gain, well, again that is something that the Graves’ affects. I had uncontrolled and sudden weight loss before I was diagnosed. As soon as I went on the meds, the weight came back on, even tho I still had no appetite and was barely eating anything. The problem with Graves’ is you can’t control how the body is going to react to things. In my case, my bod thought it was experiencing famine, so as soon as I stabilized it grabbed all the spare calories it could to protect against the next famine.

   Now hubby, I want to give you a homework assignment. I want you to sit down and read all the past messages on this board and you can see what Graves’ can do to people. Then I want you to hug your wife and tell her you love her and are there for her, in sickness and in health and all that cool stuff. It ain’t a nice disease and we need all the support from our loved ones to get thru it.
   Jean C

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   #3 Jeffrey Roberts

   Member #1 Publisher

   Group: Root Admin
   Posts: 124
   Joined: 22-November 08
   Gender:Male
   Posted 25 November 2008 – 02:53 PM

   A Day in the Life of a Graves’ Patient

   A jewel from Monica…

   I was digging through the archives today, reading old posts I had made when I ran across this post. Written 4 months into my journey when just coming out of my hyper phase. Written before I became burned out and cynical. The quality of my earlier posts compared to the quality of my recent posts leaves me sad.

   This was written as a compilation of the typical graves patient that was posting on the board then. It was titled “Musings of a gravesian”:

   A Day in the Life of a Graves’ Patient

   Have you ever wondered what it would be like to one day wake up in the body of someone else? Nothing would seem right, you would look at yourself throughout the day from afar thinking; who is this person and what has she done with the real me? That is what we Gravesian’s go through nearly everyday.

   In the beginning, before meds have kicked in we get the lovely opportunity to explore life as a mental asylum escapee, possibly one who was locked up to begin with because we castrated an unsympathetic spouse in a moment of graves’ rage. I can hear the defense attorney now…”He deserved it, he ate the steak leftover in the refridgerator.”

   From the time we wake up till we go to bed and even in our dreams, life as we previously knew it has ceased to exist. Join me in a journey through a typical day of someone suffering from active graves’ disease.

   After staying up till 3:00am watching Nick at Night, and finally dropping off to sleep sometime around 4:00 you awake at 4:30 with a start. Drenched in sweat you swear someone must have turned up the heat again or had the audacity to close the window even though it is 28 degrees outside. You get up, check the thermostat, open the window a little wider, throw another blanket on your spouse, go to the bathroom and lie back down. By now your mind is racing faster than superman trying to stop an out of control freight train. OK, what can I do to relax and clear my mind? I have got to get some sleep! After covering 136 subjects from top to bottom including solving the national debt crisis, what you would do if there is another terrorist attack, planning out what you will eat as soon as you get up, analyzing your last doctor’s appointment including everything you could have and should have said and making a list of every thing your spouse ever did that annoyed you, you finally drop off to sleep about 5:45. The alarm sounds at 6:00 am.

   After being unable to return to work the last 3 weeks, your weekday life has settled into a relentless routine. Eat, poop, eat, surf the net, eat, poop, eat, surf the net. Eating and planning your next meal has become your favorite past-time. A typical day’s food requirements are as follows: Breakfast: 1 bowl of oatmeal, 2 pieces of bacon, a cup of yogurt, 4 pieces of toast with butter and jelly, a veggie omelette and a piece of fruit. Mid morning snack: Peanut butter and jelly sandwich, potato chips and a high calorie energy bar. Late Morning snack: a bunch of grapes and some cheese. Lunch: You head out to Wendy’s for a loaded double cheese burger, order of chicken nuggets, biggie fries, bowl of chili and a frosty. Afternoon snack: egg salad sandwich and chips. Late afternoon snack: 3 pints of ice-cream. Dinner: 20oz steak, 2 baked potatoes, mixed veggies, salad, 6 dinner rolls and a whole pan of brownies for dessert. Bedtime snack: cereal and milk. Repeat bedtime snack every hour until you actually get to bed.

   For the enlightened Graves’ sufferer, surfing the net has become a way to take control of this disease. Of course our new found obsessive habits spill over into our computer time. Most of the Gravesian’s that I know spend an average of 6-8 hours a day on the computer in various Gravesian pursuits. This includes research, book recommendations, reading medical journal articles, looking for a new doctor, and above all posting and reading on message boards. If you read and post on a message board, it is a universal requirement to check your messages atleast 32 times a day. It is the first thing you do when you get up and the last thing you do before bed. If you post a question in which you need immediate answers, checking for a response every 30 seconds is not uncommon. You live for your friends on-line. You laugh, pray and grieve with them. No one else understands you like your comrades in arms.

   Sorting out the bulletin board that fits your needs can be tricky. As there are so many approaches to Graves’ disease management, so too are there many different types of bulletin boards. Some are just fun and games; friendly support to forget about your disease but not really learn anything about it. Others are heavily sensored and will delete any post not fitting their narrow sense of acceptable treatments faster than you can say pharmaceutical firm involvement. Other’s are more study oriented with lots of reading suggestions, links to other sites and studies and old fashioned anecdotal support. Whatever your choice, chances are a good part of your day not spent in the bathroom is spent on-line.

   With so much energy to burn both physically and mentally yet so much fatigue both physically and mentally we are in a state of constant flux. We have so much energy that we can’t sit still without vibrating our foot to the frequency of a cat’s purr yet we don’t have the strength to walk to the mailbox and get the mail. People look at us and see a person with the energy of one who just finished their 5th café latte, but, who can’t or in their minds “won’t” get off the couch. Even though we have this compulsion to clean house, we soon give that up in favor of maybe being able to cook some dinner later if our muscles will cooperate. This does not stop the fact that the house being a mess is driving us crazy.

   Since we are too out of breath to do anything physical and our heartrate is too high and sounds too loudly in our ears to let us take a nap, this leaves plenty of time left over for Graves’ rage. Part sleep deprivation, part out of control hormones and part pure frustration we tend to get a little testy at times. OK, a lot testy! We can go off on those that we care about in 3 seconds flat before we even realize what we have done. Every minor transgression is a major felony. The worse part about it is it’s nearly impossible to control and we feel lousy about it afterwards. Intellectually we know that those around us are really trying to cope with this and we are hard to live with but emotionally we feel that no one understands us, no one cares how bad we feel and no one is trying to help us out around the house and at work while we struggle through it.

   One of the worst things about being a Gravesian is not being able to get away from it. In the beginning, one or more of our symptoms will remain as a constant reminder in the forefront of our minds. We have to check our pulse 100 times a day. We have to plan what to eat carefully to get enough calories yet avoid possible triggers like iodine. If we are trying to type or write our hands are shaking, if we are trying to walk our legs are shaking. If we are trying to read or meditate our minds are wandering. We live with a 24 hour a day drum pounding in our ears called our heartbeat. We are hyper-sensitive to sounds and smells. EVERYTHING has the potential to irritate to us. Until the meds kick in, the only time we can get away from it is in our sleep and even then IF we sleep we often dream about it too.

   The only thing worse about this disease than not being able to get away from it is the niggling fear that we are losing our minds. Brain-fog can be debilitating. It starts with walking to the kitchen to get a drink of water but forgetting what you wanted by the time you get there. Sometimes you even forget to forget what you wanted. These times you get something else from the kitchen only to remember an hour later why you went in there. The only thing you can read are children’s books and the only thing you can concentrate enough to follow on TV is some silly sit-com you have seen a dozen times. You can’t stop obsessing about this stupid disease even though you know the stress of worrying about it is making you worse. You can’t slow down your thoughts slow enough to understand them. You talk too fast and too loud and most of the time when you talk to yourself you answer.

   Lest you think that this essay is all negative, there are some advantages to having a chronic illness if we choose to look for them. One of the first things that happens is it stops us in our tracks. We are given a beautiful opportunity to look within ourselves and examine the paths we have chosen and the lifestyle we are maintaining. We are given the “George Bailey” equivalent of a life improving opportunity.

   Suddenly we find out who are real friends are. We are forced to learn to say no and not overextend ourselves. We learn to value ourselves, our feelings, our symptoms and our emotions. We can no longer afford to waste time in unfruitful endeavors. We can clearly see what is important to have in our life and what we can let go of. After struggling just to get showered and dressed, suddenly that hour we used to spend with a complicated hairstyle and make-up is not so important.

   We learn how to stand up for ourselves and demand proper medical treatment. We teach our children to take care of their health while young and avoid those things in life that tend to make one sick. We have more compassion for others who are suffering particularly those who do not look sick. We tend to eat better and pray more. We are drawn closer to our source of creation or to whatever we feel sustains our lives. We become philosophical. We dream and we learn to live in such a way that best fullfills our life’s purpose. Some may need to change careers. Others remove themselves from toxic relationships. We learn to set boundaries with family members that tear us down rather than build us up. We learn to put ourselves first.

   For me, having Graves’ disease has been a journey. Somedays I curse this journey like there is no tomorrow. Other days I am thankful for the eye-opening kick in the butt. Today I am philosophical and whimsical. I started out wanting to write something funny or something that might make someone else feel they are not alone or that they can share with a loved one who doesn’t understand. Instead I ended up with a diatribe of grievances and opportunities. In any event, my goal today was to start writing and to share what I write.

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   needed you to know……Linda

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