Frustrated with a little positive stuff in the end

I am still waiting for the urine culture results to come in because they sent it out to be sure and i called the GYN the other day because things are getting worse and they were like we can not do anything until the dip results from the PCP come back and as a matter of fact why did you not call them.
i explained to the that i was told to call the office if things got worse along with letting my PCP know because it was probably not a Urinary infection. They were like well we can not do anything until we know for sure. So here I am still having discomfort more than usual and nothing is being done besides them talking to me and saying that they wished there was something more they could tell me.
How frustrating this is getting. I have an appointment with an endocrinologist comming up on Tuesday and if it is no better i am going to ask him about it as well. I am finished being put off by everyone. I did not talk to the GYN directly and had i been able to i am pretty confident that more would have been accomplished. Thanks for listening. I hate being so negative and wish i had more positive stuff to talk about.
I am going to add a little about the wii in here because that is great. I have the game wii sport and it has baseball and tennis and a few other things on it, I am pretty good with the bowling but baseball is tough but I was pretty impressed with myself the other night. i hit a home run for the first time and if i never do it again that is fine I can say i have done it once that is an accomplishment for me since i did not think it would happen at all.

Gotta love The endo and the hip

I have been having a tough few days with my pelvic pain. I thought i had a urinary infection so i went to the doctor and had a urine dip done and it was negative for any infection.
she was talking to me and said that it was probably from the Endo because sometimes when it act up It can make it feel like a UTI so now it is a waiting game until I see the Ob again. i hope it starts to give me a break here soon because i hate feeling like this.
The hip has been tough too because it has been so cold and now my spasticity is giving me trouble because of the weather so I am staying in where it is warm as much as possible. I am learning to love a good book lately. It helps take my mind off of everything I love to do that as much as possible.

the Wii

I Just read the comment from sheila and the wii is fun but seriously takes alot of patience on my behalf. I have trouble manuvering the controler because of visual spacial issues but i will get the hang of it. I am improving each time i play.
malayna would probably enjoy one once she gets a little more steady with her walking and balance. How has she been doing with her walking lately. Still steadily improvign I pray. I actually get tuckered out after about 15 or 20 mins of play so it is really a work out they are not fibbing there. Glad you guys had a good holiday.

the holiday

I had a great holiday. i got a wii which is taking some getting used to. i like it and i will have an easier time playing it after they fix the hip. Kindo of tough to stand for long periods of time but thats fine by me. It's very fun. the time with the family has been great.
I hope everyone had a great holiday as well.

My day today

Well, i did not plan to get on here today but had some spare time to let everyone know how today went. I got both the H1N1 injection and the seasonal flu today so I do not need to make a return visit for anything.
that was nice as the other nurse had me under the impression that i could only get the seasonal flu shot today. it was a great relief since I am going to need transportation to and from doctors allot in the next six months and with multiple trips to the doctors sometimes my family and friends get frustrated with the docs if they can do two things at once and do not and i can say that I do as well LOL I do not like going back and fourth all the time. The doctor free days are enjoyed so much. I will be relieved when the injections are done and i can begin to resume a somewhat normal routine not revolved around the appointments. I should be used to it by now but it gets no easier even though i Am much more patient now it still sucks lol.
I can not believe it is going to be Christmas Eve tomorrow. It is going to be busy but much enjoyed for me. I love to watch all the little ones enjoy their Christmas gifts. it is the best feeling ever.

Today's news

Well i received my endocrinology appointment and my follow up appointment to start the lupron in the mail today. I do see the endocrinologist on the fifth of January and then sometime after that see the OBGYN I don't know the exact date yet will be back in a few days to let you all know how my holidays went hope you all have a great Christmas and a happy new year. i am going to enjoy them n matter what this pain is not going to knock me down. i love Christmas and the time with the family.
I have been amazed at how quickly the Ob clinic has been with getting me appointments. sometimes doctors still amaze me LOL/

fighting with the docs again

Doctors are so frustrating. i just don't understand them at all. The doctors got flu shots in for the season finally and i am on the high risk list because of the CP and airway spasms. I don't have asthma but spastic airways. I talked to them this morning and they were like well why is CP not listed in your chart????!!!!!!! It should be All of the doctors that i have had know that i have it and the official DX was made when an MRI showed that i was actually missing a portion of my brain. I don't know what parts it is but they are supposed to come to a point and i am missing the tips.
Well that is interesting. Seriously these people think that this condition just disappears after you get so old. i think not. I even told the nurse this does not just disappear. i know i have it and everyone else knows i have it. It is sad i have been their patient for five years or more and they still fail to notice it anywhere in the charts. I obviously have disabilities as i qualify for SSI. Not that it is something that i want to get here but that's how it goes i guess. Well that's about it for my frustrations for now.
Well the decision was finally made at like almost two this afternoon that i can get the seasonal flu and the h1N! because i am considered high risk for my age group. Hello I knew this i have been living with CP for 24 years now and always had to have them. I don't know why it was such a hastle this year usually they are sticking them in me with very little prompting and this year I pretty much had to beg lol

Follow up went well

Well a not to self, I need to stop getting so uptight about things before they happen. i don't see that happening though. My appointment went well. As always she took the time to answer all of my questions after she read over her info that I needed to hear. Unfortunately what i was hoping to be a dream became complete reality. I knew it was not a dream but it just fully sank in hearing her say stage three endometriosis this afternoon.
I am going to be starting Lu pron injections after I have an appointment with an endocrinologist because my prolactin levels have been running high as well and this is not due to endometriosis but could definitely be a cause for my irregular bleeding so another doctor here i come. I can not start any treatment because it will interfere with his test results and I told My GYN that i did not want any chance of that i don't want to go back fifty times. she agreed and now i am waiting for the referral and appointment to come.
I was not expecting this so it threw me a curve ball but having everything i do I have pretty much learned to expect the unexpected.

extremely ancious

Well my appointment is now pretty much here and i am dreading it seriously. I know i need to go but it is one of those things that I would love to avoid. i can not do that now though because I have family who know about it and knew about it from the get go or at least before I did so they are awaiting the next step. I am too as for hope of not having pain any more. it has diminished some since the surgery but not like i had hoped. SOO nervous

Getting nervous already

Yes it is only Monday, My appointment with the doc is not until Friday but i am already starting to feel my anxiety creeping up on me. This one is going to be a tough one to get through. I will push through it though. it will be good to talk to the doctor to actually have her explain things to me though since she is the on that was actually doing the operation. i was too out of it to even remember anything much even when they sent e home. If i did not have help at home i would have been made to stay in the hospital and actually i asked to stay and they said that it was not necessary because i had assistance at home.
That is Ok with me though because I was happy to come home and curl up in my bed. the only reason i asked about staying is because i was not sure with my hip if they were going to be able to get me up. I'm not the easiest person to assist when I'm out of it lol.

Sitting here dealing with the cramping again

It is nearly 11 PM here and i am sitting at the computer typing as i can not sleep because of the cramping. My cycle is near and post surgical so far nothing is different besides I can reach without feeling a pulling sensation so that is a relief as far as the pain and cramps go they are pretty much the same so far. The 18Th is my follow up so i am looking forward to her insight and recommendations. I joined a support group online for endometriosis today. it is nice to connect with others who know what I am going through.
The last portion of my weekend is going to be spent babysitting which i am looking forward to except the fact I'm not really feeling great but i will get through it and enjoy it as much as I can.

My Dad

this is a poem that i wrote for my dad,

I have been told of all the times
You bounced me to settle my cries
You would hold my head in one hand and bounce my toosh with the other
that would usually work after a couple of tries
To settle my cries

I have heard that for many nights mom slept with her feet in your face
This was not supposed to be her place
But you took it with never ending grace

no matter how things have been
Your love never ends
I remember when i was sixteen and had surgery
every thing was blurry

the first thing i remember clearly
was you lifting me over the stairs
In that incredibly heavy chair
for you that was not fair
However you did not care
about that big heavy chair
You lifted me as though you were Rick Flare

I am now 23
this is tough for me
I want you to see
You are ever so special to me
you never let me slide through the cracks
You were there to hold my back
You never did slack

You made sure we had whatever we needed
you taught us to never act conceited
this is something that can never be deleted
Even after god has deeded your life completed
those special memories will never be deleted

i have been extremely lucky to grow up and still live with both of my parents.

appointment with primary doctor today

Well the doc says i am doing well overall and is surprised with my depression that i am handling things as well as I am right now. Things went great until the end when she was like well with all of these surgeries make sure to watch your weight. Yes does she think i am not constantly forced to think of that all the time on my own time. I sometimes just don't know how to react to some things. I know she is saying that because she is trying to watch out for the best for me but i can think of better things she could have said.
the good news is that she did get the update on the most recent surgery and knows about the endometriosis so i did not have to fill her in on that. It is very different i went in all prepared to fill her in and did not have to I was amazed. that is when you know you have a good doc My GYN is great. Sends everything yes gota love that.

Appointment comming up with my regular doctor

I'm not really looking forward to it because she seemed to be against me having the surgery from the begining so i am nervous to know what her reaction is going to be friday. I know that the only person who knows my body is me but not being believed makes things really tough.
I want to tell everyone who reads this not to let others make choices for you because the think they know what is best for you or your child. You are the parent or the patient make them listen to you and if they do not find someone who will. It is so important. I have been to so many doctors and only had a few who lostened. It has made things so much harder because you go to them for help and then they don't accomplish what is needed but you don't know where else to go and it seems like it is never ending.
well thats about it for today. and i am going to end by saying you are the only one who really knows what is going on with you or if you are a parent you know your little one better than any onter person.

Dealing with another long term condition

i am finding myself going through a similar phase as i did when i was finally able to realize that the condition of CP was a permanent but treatable condition. Well this is happening again as the endometriosis is permanent but treatable as i am too young to have a hysterectomy even though i am almost positive that i do not want children in the future. do not get me wrong I love them to pieces and have plenty of chances to interact with them and love every minute of it but i don't know if i am physically able to cope with the daily grind of a child.
I have babysat since i was sixteen so i know what it is like to basically raise a child as i have done overnights and general care for up to a week at a time. I love children but i think that was experience enough to tell me that they are not meant for me. I still sit and love it but with everything that has been going on lately medically it is so hard to do right now. I miss it alot.
Well back to the feelings portion, I have gone through the crying phase just the other night because even though i do not want children it is tough for me to think long term on having another chronic condition to cope with. i am angry and frustrated as well and i know this is probably normal but honestly I can not seem to shake it and just want it over with. It has been a tough week for me and i just in all honesty kind of feel lost right now. and very thankful for the help of friends family an a great counselor and yes this includes the Internet family as well.

post op appointment made this morning

Well, I am slowly beginning to feel better. I stayed up most of the day today and had a few visitors a people that called me that i was able to talk to so that was nice. I made my post operative appointment this morning as well. It is on Friday December 18th. I will know where my next step is then and will have more news at that time on the surgical aspect of it all.
It has taken some time to let this all sink in and i am still working on it. It was a very shocking thing for me to hear. I am handling it well though and hope to be feeling better soon. It will not be a easy fix, there is not a cure for this and it is just manage the symptoms as they come as long as things do not get worse. I will be sure to update often and keep you all posted on my happy moments too.
Oh the best part, I did have an enjoyable 24Th birthday even though i was recouperating. I did not do much but it was a nice day overall.

more on surgery

Well as i said i would update more once i was able to sit up longer so here you go, The surgery went well overall, The diagnosis was very unexpected to me though. We thought it was a fluid filled tube. That is not what it is though. It is Stage three endometriosis. Another blessing for me to have to deal with. I am not sure what the next step is but i know for sure it is not a full hysterectomy because the surgeon said that i am way to young for one. I will update again after i know more my post op is in two weeks so it will most likely be then that i update again.

post surgical update

I am home, Not feeling too great but well enough to do a quick updaye here. The surgery went smoothly as possible and i am on the road to recovery again. I will post more in a later update when i can sit up for more than twenty mins at a time

Thank you

I want to say thanks for being so dedicated to my blog and reading all the time. thanks for sticking by me even if it is through the computer. Ny family is wonderful but its great to know i have others looking out too.

Anticipating surgery

this is a poem that i just wrote like ten minutes before posting it here thanks for reading it.

I hate these feelings
My anxiety is about to hit the ceiling
I hate this dreaded feeling

The anticipation
Then the aggravation
and finally the frustration

this happens during the recovery period
when my physical condition is deteriorated
My lack of Independence is then stated
this period is definitely hated

I hate having to depend
For me others must fend
I am always glad when this period comes to an end
My thanks to everyone i will send
For helping me until the end

the hospital is nearly impossible for me to bear
Sometimes at the ceiling i just stare
pretending i am not there
the feelings are so hard to share
before i did not dare

I used to put on a brave face
locked my feelings inside a case
I would act as though i was not fazed

When i had my foot done
to the hospital mom did come
anxiety she had some
i acted as though i had none
Wow that was not fun
I was glad when that ordeal was done
Home i wanted to run
When the nurse finally said home i could come

A poem written about past ad present feelings i have prior to surgery. I had the foot operation done when i was sixteen years old and it seems like it was yesterday and have had a few since and they are no easier.

Pre op called

yeah the hospital called in the pre admissions department. I am all set there. Now though i am not sure weather i will be coming home or not though because they are sending me to admitting rather than ASU so i am thinking it is gonna be an overnight stay for me. Not exactly something to loos forward to but if that's how it has to be that is it i guess. If that happens though there is a good side to it because when i come home i will have better pain control so that will be good.