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..

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

I WON!!

Well my day has come and i have finally won my S,S case !!! I can't belive it ! it's been 6 years and now i am soo happy . I will be able to go to doctors that i need to see have my med's all paid for . so i am just happy . i know this is short but i have the flu and i am back off to bed ..

Heart clinc @ ALL CHILDRENS HOSPITAL

Well i got to ach at 9:30 am and i got checked in to the heart clinc and they did my EKG and stuff but when it came to my Bp amd heart rate we had a big scare. My Bp was 160/100 that is very bad and my heart rate was 105 so they did it two times and it was the same so they put me in a room and then doctor martinze came in and asked how i was feeling . I told him i was feeling very rundown my chest was hurten and stuff and then he saw what i chart said ! I though the poor man was going to hite the floor he said your bp has never been this high . so he went and got the nurse and he said your not leaven yet we have some stuff to do .So i had to go to 3north on the other side of the builden and get labs and a chest x-ray STAT !! well i got them done and half way back to the office i got a very bad headach and so when i told the girls i was back i just layed down on the row of chairs and then they took my Bp agian and it was 158/90 heart rate 96. so the nurse told me to lay on the table and she turned out the light for me . Dr. martinze and Dr. F came in and talked with me and all my labs were ok but one my infulmation (sp) one was high so i am now on mobic for the chest pain and i just now got off the phone with the on call doc because my Bp is back up agian so i have a feeling i will be back at ACH on monday !! Oh and i am on a 24 hour heart montior till then too .. fun fun !!

Keepen Hope Alive

I try with all of my heart to belive that god has a plan for me , and that is why i must suffer but lately i find myself thinking that my life is more of a pain filled hell . I just can't understand why i have to suffer so much , what i have i done worng that god is maken me live a life of pain.My doctor's don't know what to give me to take the pain away, they don't know why i am haven chest pains , or why i am haven these headachs that have been going on now for 2 1/2 months . I am just finding it very hard to cope with everthing that i have to handle . I mean i am to young for all of these things to be holding me back . I was told that by the age of 23 i would be in a wheel chair full time . That has not happened but i am in one alot of the time and i have to use my cane and a walker but alot has to do with the pain . I just can't see the light at the end of the tunnal and i am running out of hope .But i know i can't let this illness take over and i know i can't give up but you have no clue how many times i have wanted too. I can't let this win i just hope i am storng enough to hold on to HOPE ..

Sick agian !

Hey well i am sick agian i have been this way for two weeks now and i am not getten any better i have had two rounds of meds for this upper resptory infection. All i know is that i am coughing like crazy, My sinuses hurt ,and my throat is killing me .

What makes to even worse is when i am sick i hurt like hell and non of my pain meds are worken for the pain plus i have tooth ach on top of all of this .

Well i am going back to bed C-YA

Holding on to hope

I try with all of my heart to belive that god has a plan for me , and that is why i must suffer but lately i find myself thinking that my life is more of a pain filled hell . I just can't understand why i have to suffer so much , what i have i done worng that god is maken me live a life of pain.My doctor's don't know what to give me to take the pain away, they don't know why i am haven chest pains , or why i am haven these headachs that have been going on now for 2 1/2 months . I am just finding it very hard to cope with everthing that i have to handle . I mean i am to young for all of these things to be holding me back . I was told that by the age of 23 i would be in a wheel chair full time . That has not happened but i am in one alot of the time and i have to use my cane and a walker but alot has to do with the pain . I just can't see the light at the end of the tunnal and i am running out of hope .But i know i can't let this illness take over and i know i can't give up but you have no clue how many times i have wanted too. I can't let this win i just hope i am storng enough to hold on to HOPE ..