Thursday, December 31, 2009
But something's have gone well i have gotten a pain mangment doctor to help me with this chronic pain from the EDS, FIBRO, CFS . he changed my pain pill's and changed my other pain med's and it seem's to be helping and i hope i can keep it under wrap's . I also have manged to get my headache under wrap's but some thing is telling me i will need to call my doctor because i have been getting small headache's.
But all and all i hope 2010 is a better year.
Saturday, December 26, 2009
we all slepten in on christmas day and that was nice and we all got up and watched some tv then we all ended up fallen asleep. so we had our family dinner so that is about it for christmas.
Monday, December 14, 2009
they said ( i am so sick of hearn about how hard you life is, you don't do anything at all to make it better.) and this came from someone that i really loved so we found out who had said it and then i got an text message that said i am removen you and i nevre want to hear from you agian.
so i have one thing to said to that person and that is SCREW YOU !!!!!
Sunday, November 15, 2009
7 years have pasted and it has been a living hell for us all. Me haven to be in and out of the hospital for surgery's for problems from the EDS, Haven doctor's tell me that it's all in my head , friend's beening lost because of my illness and friend's dieing from it , and now haven a friend who is very sick because of eds.
But the thing that make's the hole thing so hard is that i went to USF on friday because my heart doctor was worried about EDS and heart problems . So i had this set up for a year so i go and the stupid doctor tells me that i don't have eds . I just sat there and cried for years i am told one thing and this person tell's me this without doing the test that my doctor asked to be done to check me for different types of eds.
I was alone mom could not come with me because she is not well so i went to the appt by myself and i am told that i am crazy!! that the pain i am haven is because of my depression and that i have no eds trates!!! My life is turned upside down i don't know what or who to beleave anymore.
So this is a life of hell...
Friday, October 30, 2009
Iam happy to say that my headache's have started to go away after a month and a half ugh i was getting so sick of my head hurten me all the time and this was not one of those headaches were you could just go on with your everyday life this one was keepen me down . I didnot come out of my room much at all i mean for like the past two week's i have maybe come out of my room 3 times but that was to leave the house for other doctor appt's .
Well i got back home around 2:30 this afternoon and i was so wiped out i took a nice hot shower and a nap . so here is the update !!! This doctor was so nice and he knew about eds and stuff so he was asken me where my pain was today and luckly this was a bad flare day so he could see how it effected me . So he asked me about all my med's and i told him that if my current pain meds were helping me i could not feel and diffrent. So he changed my pain meds and he upped one by 100mg's . and he told me he wants me to have phsical/aqua therapy so i will call the place on monday.
So all and all this was a great today !!!!
Thursday, October 22, 2009
Sunday, October 18, 2009
But i geuss i will see what happend's well i am going back to bed my head is killen me
Thursday, October 15, 2009
Why do i have to suffer alone in life
why must i fight this invisable fight everyday and everynight
Why must i lay in bed squrriming in pain unable to rest find my long to short day.
Why must i put up with people's give me dirty looks
It must be that they can't see my everyday fight. they judge me on my looks
and what i do why do you care it's not like its you.
I have many things wrong with me it's a given fact.
It must be it must be that you can't see what is wrong with me
So you seem to prejudge that.
I fight alone day and night this invisable fight
some people will never understand and that dose not seem right.
I ask god why must i suffer alone day and night
Why must i fight this disease all my life
why must i suffer in pain .
Everyday and Everynight.
Tuesday, October 13, 2009
Here are some photo's of my pet's she took!!!
These are some pic's brittany took..
The shells we found when we were at the beach hehe it was fun ! Some of the pic's from Fort De Soato beach and historical park. It was fun and we got so much sun burn..
It was all going great but when we got home from the beach i could not touch my ear's and its because they both were infected .....UGH i will not get another any thing like that done again. So we had to go down to the er for them to take them out Oh God that HURT.....
My ear's before they got to them!!!!Nurse Phile
Sad because they are going to take the new ear rings out.
Thursday, October 1, 2009
I asked her two year's ago if she would like to come and stay with us for a few week's and she was like yes!!! So last month i got her plan ticket can i told her that the dream trip was on !! I know she is worried about commen here and stuff because you see we have never seen each other we have only talked on the phone and on the web. I have to say i am a little worried to because i am scared that she will not like me but i know it will all work out .
So she will be here for 2 week's and thank god the weather is changen and getten alittle cooler so it will be nice . I do feel bad because she will be on a plan for like 5hour's but it will all be worth it just to see my friend for the frist time. I also know she is worried about money i told her not to worry this is a gift we both have stressful live's and it will be nice for her to get a way for a little while.
So brittany i will see you on saturday !!! CAN'T WAITE !!!
Monday, September 21, 2009
here is the (left hand)
hand layed out flat finger's hyper flexed!!
Friday, August 28, 2009
As the sun goes down in front of meIt reminds of me of where I want to beWith you and you aloneHold me in like you were made for meI'm losing faith in gravityI just need to let you knowAnd I just need to let you knowI'm not going to come downDown off of these cloudsAll these heroes come and goBut you're still standingYou teach me to rise upTo open my eyes upAll these heroes come and goBut you're still standingYou're still standingYou know the world's confusingI don't careI crawl into your atmosphereI know you'll make it rightYou're all I need to knowI'm not going to come downDown off of these cloudsAll these heroes come and goBut you're still standingYou teach me to rise upTo open my eyes upAll these heroes come and goBut you're still sandingI believe that you can save meAnd you'll never let me fallI'm not going to come downI believe in what you've shown meThere's ahero in us allI'm not going to come downDown off of these cloudsAll these heroes come and goYou teach me to rise upTo open my eyes up
Thursday, August 27, 2009
Well the Amoxicillin i have been on now for over 3 weeks is finally taken hold of the Upper Restory Infection . Two weeks ago mom had to take me down to Bayfront because i was getten sick and my Doctor was out of the country and i called the office and they said that i could not get in so mom and i end up going to Bayfront ER because that is were they told us to go and well we got there are 10:30am and did not leave till 6:00PM !!!
So i was give a diffrent type of amoxillin to take and it did not help so mom took me to the walk in clinic last Thrusday because i was still sick as a dog and getten worse . Well it turns out i all also had a case of very bad tonsil infection so geuss what had to come out NOW!!!! Great another trip to bayfront in the next few months.
Not going to be able to see the pain doctor because the car's A/C wants to act up so there gose that trip.So no pain meds for a month or two because my medacare dosenot start till october so and there are no more pain doc's that will take what i have now so i have to waite.
But on the hole i am doing better i am all healed up from my last surgery the doctor is going to keep me in his system because he is really the only doctor that will do surgery on me because of the eds. Soo that is all i have to report for now ..
Tuesday, August 18, 2009
You know i though we were best friends i call you up to hang out and you give me some stupid ass reason why you can't like your sick or your in to much pain ! Come on if you don't wanna hang out with me if then tell me and it would not be a problem but your not tellen me the truth and i know that there is no way your sick very week end and shit like that. Girl your such a fucken lier .
Your the worst frind someone could ever have , I wish i never got to know you, yes i tell all my friends about you and they all think your full of shit. I saw you at the store the other day with your mom and you looked fine your not sick you lien pice of shit!!!
I never wanna speak to you agian and i hope to hell your happy that you just lost a 2 1/2 year friend ship BITCH!!!
Monday, August 3, 2009
So after that i was not able to have pain meds for 12 hours andthat was HELL.. But i am home and i am happy to be home but i will update more later
Tuesday, July 21, 2009
Friday, July 17, 2009
Thursday, July 16, 2009
I got into the car and mom knew right then what was wrong i called the doctor and they told me to go to the ER even though i had only 1 hour before my appt. So mom ran me down to the hosptial and then she went next door to all childrens to drop off the gift. So i was in with the nurse at the er and this lady was just plane nasty to me she said ( well if you have a doctor appt in one hour why are you here !!!) I told her i called the doctor and he told me to come right down . Well after said was nasty to be i got up out of the wheel chair and said them to for get it because i did not need this crap right now.
So one of the men to take people to and from the hospital to their cars came and got me and mom looked at me i told her to forget it and so we called the doctors office and they said just to come down. So we got there i was not even in the door and one of the nurse came out and said come on back! So my doctor who is Dr. Huguet came in and told me that this has to be taken care of now !!
So i am going in for surgery on wesday the 29th of this month to have my hernia's fixed so that is my update for right now !
Monday, July 13, 2009
Heart wise i am going ok i don't have to go back to All Childrens heart clinic till the fall which is a nice break for me i mean i love my doctors there but not this much lol!! But DR. Martinze is keepen a close eye on my heart and my PVS to make sure it dose not get out of hand!
Eye wise DR.Hess said that my eyes are ok and he can't find any thing to do with eds in my eyes which is good .
The bad news time. I am haven alot more pain and joint problems and my left knee is action up agian this is the same one i hurt 2 year's ago when i fell.Also i have to get 4 teeth pulled because the eds is maken my teeth very thine and they hurt so this happends on the 23rd of this month Can you say (ALOT OF PAIN OH GOD NOT LOOK TO THIS )!!!!!!!!
Now for the big trip in the fall i am going to go back to USF Medcial center and going to be Re-typed for EDS to make sure there is nothing funny going on i go there in november on the 7th i think .
Oh Mom and i are going to be interviewed by fox 13 news same time soon and its goign to be a thing on EDS . I took to on myself and wrote to the doctor who has a spot on the news and she said it would be a great ieda to do a show on eds. Not sure when it will happen but i will post when i know .
WOW I GEUSS THAT WAS ALOT (LOL)
C-YA ZEBRAGIRL OUT !
Saturday, July 11, 2009
Thursday, July 9, 2009
To all my EDS FRIENDS i am so so sorry i have not been there for you . i am just really fighten to get up everyday.
Monday, June 22, 2009
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.
Wednesday, June 10, 2009
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
Tuesday, May 26, 2009
Thursday, May 14, 2009
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
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
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
Monday, March 30, 2009
Friday, March 6, 2009
Wednesday, February 18, 2009
Tuesday, February 17, 2009
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
Monday, February 16, 2009
Monday, February 9, 2009
Saturday, February 7, 2009
Yes i do things not because i wanted to but because i have to i have to pull myself out of bed every moring and go to doctor's , shoppen and other stuff even if i am hurting like hell and still no one get's it . I am on 4 things for pain one is for neavr pain and one is for muscle pain and then there is some thing for my head achs and then my pain pain.
So when you say you hurt and think i am going to feel sorry for you , GEUSS AGIAN !! Your pain goes away Mine DOSEN'T !!!!!!