Hey everyone sorry its taken me so long to repost but i have been haven a hard time . I have been in so much pain that i have been in bed for the past 3 days and i spent my birthday in so much pain i couldnot endjoy it . But i have been getten my headachs back so i have been so druges up and nothing is helpen . I called my doctor this moring and told the nurse that i want the number to the pain clinic .
So i hope he calls soon because i can't take much more of this pain. I have not been sleepen much at all and if i do fall asleep its only for like 1-2 hours. so i just wanted to pop in . My mom found a good way to help my dry mouth she got a snow cone maker from walmart and its been very handy
will but date agian soon.
Monday, June 22, 2009
Wednesday, June 10, 2009
New Stuff commen up !!
Sorry i have not posted more but i was in the hospital for 4 days last week !! i called my doctor because i have been more stomach pain and it was not leten up. So he told me that if got any worse to go down to the Er and mom and i said ok. So on June 2nd my uncle and mom ended up taken me down i was in really bad shape i could not walk , stand ,sit , or for that matter lay down .
So we got to the er and they started a I.V. can gave me some pain meds and then the doctor order a C.T. scan and x-rays with all the info in hand the doctor came back to the room and told My mother and i that i was not going home . My mom and i just looked at each other and we said why ?? The doctor said you have a Intestinal obstruction !! I just sat there with a look on my face that said WTF!!! she told us that my intestinal track was twisted up around my colon.
So my mom went home with my uncle and i was taken upstairs to my room and they have me on just I.V. fluids and NOP ( nothing by mouth) it was like that for 2 dayz and i was so druged up because i was in so much pain. Well around 5:30pm i geuss it became untwisted because i felt soo much better and i was able to use the bathroom !!
So my doctor come in around 10:30 pm that night and asked how i was feeling i said well a lot better but i am still very sore. With out missen a beat he said you will be for a few dayz .
Well i have not been out for a week and mom had to take me back to the ER on Monday because it happened agian and this time i had to drink four glasses of contrast ( that stuff is nasty ) and it was twisted agian and so they gave me some meds i can't rember what it was but it untwisted it so..
That is what is going on i do to my doctor in the am to see what the plan is
So we got to the er and they started a I.V. can gave me some pain meds and then the doctor order a C.T. scan and x-rays with all the info in hand the doctor came back to the room and told My mother and i that i was not going home . My mom and i just looked at each other and we said why ?? The doctor said you have a Intestinal obstruction !! I just sat there with a look on my face that said WTF!!! she told us that my intestinal track was twisted up around my colon.
So my mom went home with my uncle and i was taken upstairs to my room and they have me on just I.V. fluids and NOP ( nothing by mouth) it was like that for 2 dayz and i was so druged up because i was in so much pain. Well around 5:30pm i geuss it became untwisted because i felt soo much better and i was able to use the bathroom !!
So my doctor come in around 10:30 pm that night and asked how i was feeling i said well a lot better but i am still very sore. With out missen a beat he said you will be for a few dayz .
Well i have not been out for a week and mom had to take me back to the ER on Monday because it happened agian and this time i had to drink four glasses of contrast ( that stuff is nasty ) and it was twisted agian and so they gave me some meds i can't rember what it was but it untwisted it so..
That is what is going on i do to my doctor in the am to see what the plan is
Sunday, May 31, 2009
TOOTH ACHE
OMG when you have eds haven a tooth ache hurts worse then a normale one !!! I have a bear taped to my head to check my face warm ! the pain is so so BAD!!!!!!!!!!!!!
Tuesday, May 26, 2009
Newest up date !
Hey everyone i am so sorry ihave not posted sooner but i have been sick and i have been very very down . Frist off i am out of my anit- depression med's and i can't get more beucase the mental health place is not going to carry the cymbalta anymore and then they gave me something different that i have tryed and its make me very very jumpy and i was breaken down and stuff like that.
So i have to waite till June 11th to go back to my (PCP) and see if he can give me the cymbalta agian because i was feelen pretty good on it . I am still haven trouble with my GI track and i have not been able to get to the GI doc because my health coverage has changed and i now have my medicade card so i i have to waite till june.
My pain (UGH GOD I HATE IT !!!) i am going to ask my doctor to send me to a pain clinc because the pain is getten so bad i am chewen on my lower lip and its all sore and bleeded and stuff. so that is not good . my lortabe is just not doing it any more and i feel so sick all the time and half of the time i do get sick !
I go back to the heart clinc on june 1st for them to check out my (PVS) and to see if my heart is ok from the EDS. but other then that i just try to take one day at a time because that is all you can do .. AND DUCK TAPE NEVER HURTS TO USE TOO ...
Thursday, May 14, 2009
Not so good news :(
Well i went to the doctor 2 days ago and i found out some not so good news ... Frist off we found out i have 2 hernia's one is on the wall of my stomach and the other one is looped around my colon. Now i have to wait to see a GI doctor god only know how long i will have to waite. But what got me mad the most is that i had this CT scan done at the ER last month when my mom took me and I can't belive my Doctors office didnot call and tell me or have me come in sooner.
I mean its bad now but with the EDS that makes it worse. I don't know what to think anymore..
sorry this is so short but we have bad storms in the area so i will make it longer later.
I mean its bad now but with the EDS that makes it worse. I don't know what to think anymore..
sorry this is so short but we have bad storms in the area so i will make it longer later.
Wednesday, April 29, 2009
Carzy Life....
Oh my god i feel like i have been running around like a chicken with its head cut off !!!! Between doctors , Er trips and more. Mom had to take me to the er last weekend because i was doubled over in pain becuase my stoumch was hurten so bad and we have found out that i have a ulcer..
So i have to stop taken some of my meds because they will make the ulcer worse but at the same time they are some of the meds that keep me going and that help with my pain. On top of that i am still waiten to get my new health card from S.S.. because my pcp wants me to see a stoumch doc and the health incs. i have now will not cover it so i am in hell so in the mean time my doctor gave me some thing called (carafate 1 mg) to help coat my stoumch and gi tracki have to take this before every meal and at night. and i was put back on (zantca 150mg ) two times a day.
My pain is getten worse and i need to see a pain doc which i will start next month i hope i have found one that will take me and he seems nice and he said he will do what he can to help me cope with the pain from the EDS, FIBRO, so that is nice to have a doctor like that . there has been talk about putten a med port in me so when i am in alot of pain they can just inject the meds but i will all so be on pain pills. and i will be going back to USF for more testing and to be retyped for EDS. because we know i have type 3 with type 4 overlay but my doctor and heart doctor want to make sure there is nothing els going on.
I am still able to walk (knock on wood ) becuase i have a lot of friends with EDS and its really i hate to use the word but its crippled them . I do use my cane and stuff alot more then i use to and i use the eleciitc carts at the stores.
well that is all for now ..
huges to all my friends..
So i have to stop taken some of my meds because they will make the ulcer worse but at the same time they are some of the meds that keep me going and that help with my pain. On top of that i am still waiten to get my new health card from S.S.. because my pcp wants me to see a stoumch doc and the health incs. i have now will not cover it so i am in hell so in the mean time my doctor gave me some thing called (carafate 1 mg) to help coat my stoumch and gi tracki have to take this before every meal and at night. and i was put back on (zantca 150mg ) two times a day.
My pain is getten worse and i need to see a pain doc which i will start next month i hope i have found one that will take me and he seems nice and he said he will do what he can to help me cope with the pain from the EDS, FIBRO, so that is nice to have a doctor like that . there has been talk about putten a med port in me so when i am in alot of pain they can just inject the meds but i will all so be on pain pills. and i will be going back to USF for more testing and to be retyped for EDS. because we know i have type 3 with type 4 overlay but my doctor and heart doctor want to make sure there is nothing els going on.
I am still able to walk (knock on wood ) becuase i have a lot of friends with EDS and its really i hate to use the word but its crippled them . I do use my cane and stuff alot more then i use to and i use the eleciitc carts at the stores.
well that is all for now ..
huges to all my friends..
Thursday, April 9, 2009
New heart problem....
Well i went to the heart doc yesterday for my bp check and for my pvc's. I have been feeling very run down and tried lately so my heart doc did a ekg and bp on me and then i was called into his office. My heart doctor is one of the nicest men in the world he cares so much about me and all of this other clinic kids and adults.
Well anyways i found out i have some thing called ( Pulmonary Valve Stenosis) this is when the valve opens to let blood flow from the right ventricla to the lungs is narrowing . In my case its not very bad right now which is good but if it gets worse they will have to do one of two things and others are 1. a heart cath .or 2, heart surgery agian soo well will just have to wait and see what happends .
But about my pvc's these are extra heart beats and it gets very boredsome to me so i have to wear a loop heart monitor till may 7th . I can take is one off and on for showers and stuff so . Dr. M said he is going to wait and see what comes up before he dose anything he said we may end up putten me on heart meds for it so . that is the update for now .
Oh and i am sick agian soo that is all
bye for now
Well anyways i found out i have some thing called ( Pulmonary Valve Stenosis) this is when the valve opens to let blood flow from the right ventricla to the lungs is narrowing . In my case its not very bad right now which is good but if it gets worse they will have to do one of two things and others are 1. a heart cath .or 2, heart surgery agian soo well will just have to wait and see what happends .
But about my pvc's these are extra heart beats and it gets very boredsome to me so i have to wear a loop heart monitor till may 7th . I can take is one off and on for showers and stuff so . Dr. M said he is going to wait and see what comes up before he dose anything he said we may end up putten me on heart meds for it so . that is the update for now .
Oh and i am sick agian soo that is all
bye for now
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