Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
****Today marks 18 years of first hearing those words YOU HAVE CANCER & I was doing the cancer walk for my best friend never thought I would be walking for me on that hot summer nite in Aug. of 95*yeah I still remember something like this you never forget there is a story wrote on me & I'm sure I will be the one to finish it someday why I was getting ready to go thru all theses tests for 3 months prior* first walking all nite on the track & then hearing your name called as you won something at 7 in the morning & I ran all the way up the bleachers to get the gift shouldn't of done that as I cramped up so bad couldn't walk anymore it was all worth it*then in Oct you never want to get a phone call clear from another state saying you just lost a Niece from your younger sister's only daughter at the age of 11 It hurt so much as I couldn't be here to see her grow I was in Germany from time she was 4 then saw her once at age 8*Then my surgery got canceled twice 3rd times a charm I remember looking at the clock at 12pm & hearing I'm going to put some funny stuff in u so u go to sleep I never knew it would be for 10 & 1/2 hrs long first anything *WOW* I was like huh I remember I had started out with a male surgeon he got hurt on his lawnmower by wearing shorts & rock came up & hit him so then I was seeing a lady surgeon but what I didn't know until after surgery was that my male surgeon was in the operating room for the first 5 hrs out of the 10 &1/2 hrs. I was told the reason why it took so long was they had to test each piece as I had over 50 some odd lymph nodes that was cancer & I was cut from one side to the other side of neck & was in hospital a week with a lot of staples*Then I wasn't even home 2 weeks when I get a call from my 2 aunts I thought were calling to check up on me nope they didn't know abt me & didn't know abt my niece's death they called to tell me I lost my Grandma on my real dad's side of the family so they were in shock to say the least.
Then 6 weeks after major surgery I was flown to Ft.Simmon Col. for a whole week in hospital to kill what was left*OMG that was a hot room I had to take 10 showers in one nite yes 10 & no one could come in room as I was contagious except the nuclear meds Dr to check my level's after all these years I now know what it all meant clear bk then the room was all covered in paper I had to throw everything away in bins I saw no one for a whole week except to look out 3 huge windows as it was snowing at - 19 below & had no working tv only a small radio & could not make blankets just had to take in books I didn't care abt remember it was a huge room then next morning had to start drinking so much water*juice*tea etc. & cold food to flush out all the I-131 radio- active iodine they gave me then the day I was getting out put on my clothes & had this card that was ur key to get bk in your hotel room they needed me to go to bathroom before I get on the table for full body scan an hr scan one of many to come thru to this day*yup*18 years later the card was in my back pocket yup sat down & all I heard was snap & im like OMG nooooo by this time your body is so very very weak etc... so I get the scan done walk from hospital bk to hotel room in freezing cold & time of nite no one was around finally found someone & they got me in my room I was so drained I just passed out.
Then a year later I get a call saying my younger sister almost lost her life her & another gal that lost a child at same time were heading to the hospital where they lost there child & was in a very serious car accident my sister was flown from the car & broke her neck & yet again I couldn't be here for her as I was still in recovery myself & getting ready for major move back to home state I get rechecked with another scan before I move then get re settled & checked & good 2 go for 3 years in 99 it all started again I was put thru so many different ways of treatments taken off Thyroid meds 6 weeks prior to being put in hospital low sodium diet etc...already so very weak then put in hospital for whole week don't see no one except my Awesome Steve*nuclear meds guy*to check my levels as suppose to be 5 or below before I could come out & I do not know if he is still with me today as last I went thru scan he hadn't retire yet when done with this I will e-mail him to see he always kept me warm with his scrubs as I would get so very cold in gowns so he would always have a stock in my room*I surprised him years later at x-mas time with his own handmade blanket & he didn't want to open it up in front of me so he does my scan & then always walks me out & we hug then thank god I had to stop & use restroom as when I come around the cornor I saw Steve's back getting coffee & I said see ya later & he's like get over here & put his arms around me & picked me up & said I was just abt to e-mail u thank u for the gift he had opened it up right after I walked out he luved it***back to my room remember no one can go in or out the very first time I went thru this I never knew what it looked like on outside of my door so when I came out a week later so very weaker than when I went in they put u in a very bk room of hospital by a door that always slammed when people went in or out & they have it roped off with a huge roll thing & tape then only one allowed in is Steve & nurse to open door just enough to put cold food on covered table right inside door & all the water*juice etc was already in room* one time they gave me the highest dose of 200 mil I had just hung up phone from my best friend calling & ran to the bathroom & threw it all up & I already knew if I threw it up within the first 3 days I would have to start it all over again & I was already real weak so I called the nurse to call Steve & when he showed up thinking I made a mess everywhere he was all covered up with huge black bags etc. he looked so funny he saw that I had made it to the bathroom & I knew not to flush as he had to measure it he was so very proud of me & I was so happy I had it in me long enough not to re do it even tho I had to stay the whole week to finish that time took me forever to recover from*Then in Jan of 02 I ended up going thru another surgery as the Thymus tired to grow bk have no clue how as they took out the whole Thyroid then kept going thru all the radio- active iodine treatments lost count of how many have them all on calendar's*Then in Jan again 05 I had a huge grapefruit size tumor growing on my right kidney I lost it they found thru my full body scans I go thru & my family dr wasn't just any ole Dr she was a Gem when she heard I lost kidney I had my bk to the door with the nurse helping me walk I heard this voice behind me & I didn't have to turn around I knew who it was my Vicki they helped me bk in bed & all I was told after she got me to sleep was she sat there for over 2 hrs on her day off reading the paper WOW does any Dr. do that nope she was Awesome I miss her so very much as one year on my b-day she called me in I thought just to get a check up well I did but also to tell me she was moving on to work with stroke patients after 10 years I was crushed as she wasn't just a Dr to me she was so much more she worked Awesome with my Endco that is also Awesome then I end of being with her good friend Karen for 10 years & now she has also moved on as she used to ride the bus everyday from almost 2 hrs away to come to work daily. I miss them both so much just before Vicki left me I went & got her pretty silk flowers cards & other stuff & nurse took our picture on my b-day & I have same flowers she does she went & got me to remember her by & she told me she will put her up in her new office & thru the years when she heard I still going thru so much out of the blew one nite she called to check up on me that was so very nice of her I truly miss her..
Why I was still recovering from losing kidney my Dear Grammie was on her death bed at home almost 2 hrs away she was getting new blood put in her as they couldn't figure out why she was losing blood I got to see her a week prior to her death & got pictures of us to & she remembered on her death bed she said u make sure u get her hope chested that u asked for when u where 5 I do not remember that & after she died not only did I get it but inside I got back the yellow handmade blanket I made her for her yellow guest room I always stayed in & other things & at the very bottom was a huge Butterfly quilt to this day I do not know who made it as my Grammie never sewed I use to help her do canning in a tiny 2 bedroom house & she luved her flower garden & before I left for Germany I helped her move into the 3 bedroom home she died in & I was so very proud of her getting her driver's license in her late 70's & had a really nice red car & its a shame that her grandson she gave it to wrecked it. I miss her so very much I grew up with her & I cherish all the memoirs we shared*RIP*Grammie*darn tears*I have a lot of her pretties & another thing on her death bed she kept wanting me to bring her butterfly pictures to her as she wanted to make sure I got them I have 2 of her pink swivel chairs etc...I was so very proud of her living on her own she worked hard & all she wanted was a graveside service & this was really hard on me as I wrote a letter to read with my cousin Tony I grew up with playing little Tonka trucks in her tiny kitchen & I hadn't seen him in years & he's holding me up thru it all & not only was that hard but this was the very first time I got to share with my younger sister losing her only daughter as she was buried on the end & my grammie right beside her & my sister told me it took her 5 years before she could even go to graveside it was so very hard I know there not in pain anymore & I will see them one day & oh what a day that will be to Hug*Smile*Dance*right after I lost Grammie got a huge scare that my white & red blood count bombed & this is what was going on with my Grammie I had to be put on pure liquid iron at first 3 times a day now down to 2 x a day.
Now update as of July u name it I have gone thru so many different tests*treatments*2 pet scan*bone scans*bone density scans*couple mini strokes*now 3 MRI they found an enlarged pituitary gland on right side of temple almost 9 years ago that I deal with a non - stop headache & now they found a mass on brain I was with an neurologist*only 3 visits*& all he can say it not much more I can do for the headache as the meds he put me on I was doing things I never knew I had done was passing out etc... thank god never got up to the 3 I was on 2 now only one but he's sending me bk to square one with family Dr so guess they just want to wait for it to explode before they worry abt it*** hmmmmmm ok***The eye Dr is the one that put me with him as she asked if I had ever been treated for the headache & I said nooooo only being watch for it she abt fell out of her chair as im almost blind to...
A lot of you do not know what I deal with now why some times I can't get on to let anyone know is when my health lands me flat down as it does a lot I never know when as some days r worse than others I deal with non - stop chronic nausea*inner shaking* fight not to throw up*headache*Bowels* Bone Pain*one time I was down almost 2 months I sit here a lot without anyone knowing how much pain im in as this is what I Luv to do to help anyone I can as I didn't have much support when I first came down with Cancer & this photo I put up is this is my road*journey know 2 people can walk the same road darn tears as this is my very long history of all I have gone thru & still am*total it all up almost 37 years worth*even tho will always stay 29*LOL..
***I am so very blessed to be able to be here 18 years today to share my experience*I have met some *AWESOME*friends that I hold ever so dear to my heart*I am very proud of who I am all this has made me so much stronger than I even realize at times & you all keep me going*I learn to cherish all the little things in life & stop & smell the roses along the way & oh they smell oh so good I will not let any of this beat me I will beat it ***I'm so very blessed to know each one of you****Never ever give up*** Keep Smilin*** Photo im referring to is on my photo page
Then 6 weeks after major surgery I was flown to Ft.Simmon Col. for a whole week in hospital to kill what was left*OMG that was a hot room I had to take 10 showers in one nite yes 10 & no one could come in room as I was contagious except the nuclear meds Dr to check my level's after all these years I now know what it all meant clear bk then the room was all covered in paper I had to throw everything away in bins I saw no one for a whole week except to look out 3 huge windows as it was snowing at - 19 below & had no working tv only a small radio & could not make blankets just had to take in books I didn't care abt remember it was a huge room then next morning had to start drinking so much water*juice*tea etc. & cold food to flush out all the I-131 radio- active iodine they gave me then the day I was getting out put on my clothes & had this card that was ur key to get bk in your hotel room they needed me to go to bathroom before I get on the table for full body scan an hr scan one of many to come thru to this day*yup*18 years later the card was in my back pocket yup sat down & all I heard was snap & im like OMG nooooo by this time your body is so very very weak etc... so I get the scan done walk from hospital bk to hotel room in freezing cold & time of nite no one was around finally found someone & they got me in my room I was so drained I just passed out.
Then a year later I get a call saying my younger sister almost lost her life her & another gal that lost a child at same time were heading to the hospital where they lost there child & was in a very serious car accident my sister was flown from the car & broke her neck & yet again I couldn't be here for her as I was still in recovery myself & getting ready for major move back to home state I get rechecked with another scan before I move then get re settled & checked & good 2 go for 3 years in 99 it all started again I was put thru so many different ways of treatments taken off Thyroid meds 6 weeks prior to being put in hospital low sodium diet etc...already so very weak then put in hospital for whole week don't see no one except my Awesome Steve*nuclear meds guy*to check my levels as suppose to be 5 or below before I could come out & I do not know if he is still with me today as last I went thru scan he hadn't retire yet when done with this I will e-mail him to see he always kept me warm with his scrubs as I would get so very cold in gowns so he would always have a stock in my room*I surprised him years later at x-mas time with his own handmade blanket & he didn't want to open it up in front of me so he does my scan & then always walks me out & we hug then thank god I had to stop & use restroom as when I come around the cornor I saw Steve's back getting coffee & I said see ya later & he's like get over here & put his arms around me & picked me up & said I was just abt to e-mail u thank u for the gift he had opened it up right after I walked out he luved it***back to my room remember no one can go in or out the very first time I went thru this I never knew what it looked like on outside of my door so when I came out a week later so very weaker than when I went in they put u in a very bk room of hospital by a door that always slammed when people went in or out & they have it roped off with a huge roll thing & tape then only one allowed in is Steve & nurse to open door just enough to put cold food on covered table right inside door & all the water*juice etc was already in room* one time they gave me the highest dose of 200 mil I had just hung up phone from my best friend calling & ran to the bathroom & threw it all up & I already knew if I threw it up within the first 3 days I would have to start it all over again & I was already real weak so I called the nurse to call Steve & when he showed up thinking I made a mess everywhere he was all covered up with huge black bags etc. he looked so funny he saw that I had made it to the bathroom & I knew not to flush as he had to measure it he was so very proud of me & I was so happy I had it in me long enough not to re do it even tho I had to stay the whole week to finish that time took me forever to recover from*Then in Jan of 02 I ended up going thru another surgery as the Thymus tired to grow bk have no clue how as they took out the whole Thyroid then kept going thru all the radio- active iodine treatments lost count of how many have them all on calendar's*Then in Jan again 05 I had a huge grapefruit size tumor growing on my right kidney I lost it they found thru my full body scans I go thru & my family dr wasn't just any ole Dr she was a Gem when she heard I lost kidney I had my bk to the door with the nurse helping me walk I heard this voice behind me & I didn't have to turn around I knew who it was my Vicki they helped me bk in bed & all I was told after she got me to sleep was she sat there for over 2 hrs on her day off reading the paper WOW does any Dr. do that nope she was Awesome I miss her so very much as one year on my b-day she called me in I thought just to get a check up well I did but also to tell me she was moving on to work with stroke patients after 10 years I was crushed as she wasn't just a Dr to me she was so much more she worked Awesome with my Endco that is also Awesome then I end of being with her good friend Karen for 10 years & now she has also moved on as she used to ride the bus everyday from almost 2 hrs away to come to work daily. I miss them both so much just before Vicki left me I went & got her pretty silk flowers cards & other stuff & nurse took our picture on my b-day & I have same flowers she does she went & got me to remember her by & she told me she will put her up in her new office & thru the years when she heard I still going thru so much out of the blew one nite she called to check up on me that was so very nice of her I truly miss her..
Why I was still recovering from losing kidney my Dear Grammie was on her death bed at home almost 2 hrs away she was getting new blood put in her as they couldn't figure out why she was losing blood I got to see her a week prior to her death & got pictures of us to & she remembered on her death bed she said u make sure u get her hope chested that u asked for when u where 5 I do not remember that & after she died not only did I get it but inside I got back the yellow handmade blanket I made her for her yellow guest room I always stayed in & other things & at the very bottom was a huge Butterfly quilt to this day I do not know who made it as my Grammie never sewed I use to help her do canning in a tiny 2 bedroom house & she luved her flower garden & before I left for Germany I helped her move into the 3 bedroom home she died in & I was so very proud of her getting her driver's license in her late 70's & had a really nice red car & its a shame that her grandson she gave it to wrecked it. I miss her so very much I grew up with her & I cherish all the memoirs we shared*RIP*Grammie*darn tears*I have a lot of her pretties & another thing on her death bed she kept wanting me to bring her butterfly pictures to her as she wanted to make sure I got them I have 2 of her pink swivel chairs etc...I was so very proud of her living on her own she worked hard & all she wanted was a graveside service & this was really hard on me as I wrote a letter to read with my cousin Tony I grew up with playing little Tonka trucks in her tiny kitchen & I hadn't seen him in years & he's holding me up thru it all & not only was that hard but this was the very first time I got to share with my younger sister losing her only daughter as she was buried on the end & my grammie right beside her & my sister told me it took her 5 years before she could even go to graveside it was so very hard I know there not in pain anymore & I will see them one day & oh what a day that will be to Hug*Smile*Dance*right after I lost Grammie got a huge scare that my white & red blood count bombed & this is what was going on with my Grammie I had to be put on pure liquid iron at first 3 times a day now down to 2 x a day.
Now update as of July u name it I have gone thru so many different tests*treatments*2 pet scan*bone scans*bone density scans*couple mini strokes*now 3 MRI they found an enlarged pituitary gland on right side of temple almost 9 years ago that I deal with a non - stop headache & now they found a mass on brain I was with an neurologist*only 3 visits*& all he can say it not much more I can do for the headache as the meds he put me on I was doing things I never knew I had done was passing out etc... thank god never got up to the 3 I was on 2 now only one but he's sending me bk to square one with family Dr so guess they just want to wait for it to explode before they worry abt it*** hmmmmmm ok***The eye Dr is the one that put me with him as she asked if I had ever been treated for the headache & I said nooooo only being watch for it she abt fell out of her chair as im almost blind to...
A lot of you do not know what I deal with now why some times I can't get on to let anyone know is when my health lands me flat down as it does a lot I never know when as some days r worse than others I deal with non - stop chronic nausea*inner shaking* fight not to throw up*headache*Bowels* Bone Pain*one time I was down almost 2 months I sit here a lot without anyone knowing how much pain im in as this is what I Luv to do to help anyone I can as I didn't have much support when I first came down with Cancer & this photo I put up is this is my road*journey know 2 people can walk the same road darn tears as this is my very long history of all I have gone thru & still am*total it all up almost 37 years worth*even tho will always stay 29*LOL..
***I am so very blessed to be able to be here 18 years today to share my experience*I have met some *AWESOME*friends that I hold ever so dear to my heart*I am very proud of who I am all this has made me so much stronger than I even realize at times & you all keep me going*I learn to cherish all the little things in life & stop & smell the roses along the way & oh they smell oh so good I will not let any of this beat me I will beat it ***I'm so very blessed to know each one of you****Never ever give up*** Keep Smilin*** Photo im referring to is on my photo page
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