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.

people with disabilities

these are things that we have
it does not mean that they are bad
normal is something that most have never had

so our lives we must rearrange
We must learn to accommodate
sometimes we must compensate
because disabilities we can not change

They can sometimes be a pain
they can make you feel very lame
Most of all we realize we are not the same

Certain people use this to be mean
Our insides are left unseen
this does not mean that we can not beam

Feelings and thought we do have
just like every other human being
Even those with disabilities deserve
to be both seen and heard
we do not deserve to be treated like nerds
or to be friendless and kicked to the curb

we love lifer most of the time
Most of us say this life is mine
and through it all I will shine!!

This is a poem written for all of us with disabilities mentally and physically. this is how we deserve to be treated. some people treat us unfair;y and this is wrong. We know nothing different and for us this is normal.

I am different

I am different
this is true
I am different
so are you
everyone is different
that is what makes you , you

well this poem is one that was inspired because i lived my life listening to everyone say how i was different. I always thought yeah i know i am different but we are all different in our own ways. if we were all the same then this world would not be very interesting. i know having a disability makes me unique but everyone is different.

My Mother my hero

My mother is my hero
always fighting with no fear
with broad shoulders to bear
every single wet tear

had it not been for her
telling me what i needed to hear
A chair i might wear

i was delayed
whenever i played
she never laid a label
she just shouted hooray

I was always told how i was brave and bold
Even though i did not fit the mold
I was her special baby to hold

my mother is my hero
for telling me to never fearo
never labeling me a zero
My mother is my hero

This poem is dedicated to my mom for everything she has done for me in the past 23 years. she was the one who always pushed me to reach my full potential. Mom i love you.

Surgery confirmed

I got my confirmation paper on Friday and called them to confirm this morning. So surgery is three thirty friday afternoon. Not looking forward to it. I have to be there at one and starve after midnight thursday which is going to be hard because it is such a late surgical appointment. I will post to update on how i am doing once i am feeling up to it
Talk to everyone again soon

i made a mistake this morning

Well i was feeling pretty good this morning except for a few minimal cramps and twinges in the hip and stomach. I got invited to go christmas shopping with my sister for my nephew and my big mistake was saying yes.
I am having a big increasi in my hip pain now that i just got back and cramping more. I can not wait to get these issues dealt with so i can resume my normal life. I am usually much more active before i started having these problems i was going for a walk each morning. And yes that is with the blessing of CP and oh my how i miss bing able to do that. I wish i could turn the clock back a year and hit the redo switch. Unfortunately there is not one of those in anyone's life so i can't do that and just have to take things as they come.
Sheila how are you and malayna doing? Was your holiday a good one ? hope you were both able to enjoy it amd hope malayna is continuing to walk.

A song that we can relate to

I have bought the song the climb on the Hannah Montanah movie after it was recomended to me throguh the CP network. i do not know how to post music vidios on line but if you can find it on line i strongly recomend you listen to it. You can put it in as a search for the title and it will come up. it is a great song even if you are not a huge hannah fan. I was not until i heard this song now it is one of the top songs i listen to
It relates to how our lives sometimes feel. i know most people have rough points in their lives but it is tougher with a life long condition. And the big part of the song is that no matter what you need to keep trying and never give up. I am a big fan of music because it helps me to relax.

just a little on my day today

I did not sleep well last night because my hip was bothering me but i stayed at my sisters house. I am tired today but still trying to have a productive enjoyable day. That is about it for now oh yeah and the lovely rain is back. Surgery a week from today yuck. i am getting really anxious now ahhhhhhhh!!!!!!!! I hate this so much.

more on my depression

I forgot that i talked in earlier posts about my depression. I don't remember when it started but it was at a fairly young age. I have been recieving cunseling, (Talk therapy for a little over a year now and that has been really helpful for me. i know not everyone has the gift of a voice to use and i am thankful that i do.
well onto my diagnosis. i have a condition called dysthymic Disorder. it is a form of chronic long term depression. the symptoms are not as severe as major depression but they last much longer. In this disorder you can have a condition called double depression with the severe symptoms too that will last a short time and then the regular blah feeling will return.
It is a hard condition to deal with because no one really knows how it feels and then they wonder why i just some days don't feel like dealing with everything. I know every one has some form of depression at some point and if this is the case then i strongly suggest getting assistance to cope with it. it is not a label and most of all it does not make you a bad person like some people have previously been told.
I delayed getting help because i did not want to be labeled as weird or crazy. I would not recomend that ot any one if you are feeling depressed for a prolonged period of time with no cause please seek help it will make you a stronger person and most of all it wil make you feel better even if it is a long process.

Good day today even with rain

I had a painful day today because of the rain but it was still a good day. I made fudge for thankgiving. cooking is something i love to do but there are times where it is near imposible to stand long enough to finish something.
I had pain today but i pushed through it to finish what i wanted to do for a change rather than letting the pain get to me. I try to do that all the time but It just seems to make me more fetigued and i have just learned to let my body do what it needs to most of the time minus today. Thanks giving is a special holiday for my family as most are and i wanted to participate. Over all a good day. Family is all comming tomorrow. I am not much for crowds but i just tell myslef the holidays come once a year better enjoy them while i can. Hope you all enjoy your holiday.

my day today

i am doing pretty well today considering everything. not feeling 100 percent actually. i have a slight headache i am hoping it does not get to the point where i need a trip to the doctor. I had to call the hospital today to see where in the process we were with my surgery on the fourth. it is a good thing i did because i have been waiting for a call and they have tried sending the packet in the mail so they are resending it so i can have my pre op instructions. Nothing ever goes easily lol.
I have to stop posting right now because my little nephew is here to visit me

Rain is comming again i do believe either that or its getting colder out there

Most likeley it is both. My hip is really stiff right now again and my legs have been bothering me. Since i got diagnosed with my hip issue and it has started giving me problems i have had more back pain to. Although i have a slight c curve of my lower spine my back never really bothered me until last december or so. I am getting older and with it unfortunately is comming more uncomfortable joints and things. That is Ok I learned to deal with my CP when i was younger. I have faith that i can deal with the new issues with the help of my special people. That is about it for my post today. Hello to Malayna and sheila. And thanks for being so dedicated.

My weekend

This weekend has been good. I have been feeling fairly good minus the moderate pain it is nothing like it was a few days ago. A couple of mondays ago i was in the hospital with it and now it is bearable. I am so happy i spent the weekend with my nephew because i have not been feeling up to it lately.
I al glad that i feel well enough to spend time with him. I miss him lately because i have not been feeling up to par but things are getting slightly better. I really just wish that i would hear something on my hip because that would make me feel so much better to have less pain there. It is hard having so much pain on the side of my body that is stronger. I don't know if i have explained it before but i have spastic dipligia but i also have weakness on my left side which means that both sides are tight but my left side is weaker so it is tough right now. Thanks for listening.

Pain is lessening for now

Today the pain is not quite as severe both issues have seemed to mellow out for a bit. It normallly does not stay this way long but i am thankfull for the small break. Surgery is exactly two weeks away for one issue. Gettting anxious. I hate this process
For Malayna keeep up the good walking girl!!!!

Still having a tough pain management time with the rain

I hope it will let up soon because the dampness increases my spasticity and makes the pain level worse. Cold is a very difficult thing for me because of that. Winter is my least favorite season. If i get too cold i have difficulty moving my muscles and it takes me a long time to get from one point to another. I have been staying mostly inside on the computer and updating on here. I am glad for the computer.
To Sheila, Does Malyana have similar issues? Just curious so i can relate more to help you.

Thankful for my wonderful orthopedic

He is sending something for the pain because he can not hurry the boston sergeons or Maine care along they have to decide in their own time what will be done. I just wish i knew of a way to find out where i am in this process. It is getting pretty tough to deal with but im still plugging along Nothing can knock me down for long lol

Pain stinks right now

Today has not been the best day for me. This morning i woke up and my day started with my hip popping. Since it has done that it has been feeling like there is something pinching in my hip. I am supposed to be waiting for surgery. I am possibly going to boston for it and have still not herd anything and it has been since August.
this hole thing actually started last December. It has been a long haul. I called the orthopedic this afternnon and they did not return my call so we shall see. I have not heard anything from the sergeons in boston and the orthopedic doc says that hehas not heard anything either. They will get in direct contact with me. I am begining to get frustrated.
I don't really know at all how to figure out where the eintire process is with insurance processing and Prior authorization or if they are even foing to cover it here. this is so confusing to me and it is once again just one more obsticle that I have to deal with because of excess stress and strain on my joints from the CP. For any one who is looking for the aging information on CP tis is what some of us have to look forward to. I am still loving life as much as I can though. Can't let it push me down or it will be a climb to get back up. Thank you to the dedicated people who read my blog

Another surgery comming up for me yuck

I went to my appointment and the doc scheduled a surgery to remove the cysts or at least drain them to give me some relief hopefully. No surgery is a 100 percent guartenteed success though. It is the begining of December so don't get alarmed if im not on much around that time. How are things with everyone else. Thanks for the comment Shelia

finally starting to feel bettr!!!!!

the resperatory infection is finally better thankfully. I am still not feeling 100 percent though but its getting better. I am dealing with other issues though to. I have ovarian cysts and they have been bothering me lately so its a loose loose situation. Oh well I can't really complain I guess i am lucky to even be here to experience any of this even if it is pain. Well thats it for now

A story about the overly caring people

I was helping at the farm again and someone came in and had a couple of kids with her and she was like you are limping are you ok? I was like yes i am fine. She then said well why are you limping? I explained that i have CP and that is what causes my limping.
She was like well you function well for having that condition. I know that. I am thankful for that. Then i helped her get her purchase and when she was leaving she was like have a wonderful day and i am sorry that you have CP.
I do not like people who are like that. I told her not to feel sorry I was born this way and i know nothing different and this is me and i am happy to be me even though i am a little different. I can do most things that everyone else can except drive because of the visual impairment. I have nystagmus and astigmatism.

Hello to all who are reading

I have not posted in a while. I have been sick and went to the DR this morning to find out that i have an upper resperatory infection. He gave me antibiotics because i normally end up with a bacterial infection any way even though they say most are caused by viral infections. Well I hope all is well with everyone out there i have been thinking hard on another story to post but have not had any recent incounters with people who have reactions Or maybe it is that i just ignore them. I am not so sure.
I am definately ready for the cold weather here to be gone and it has barley started. I really dislike winterI have alot more pain and sickness in the winter

another story

well as i said before i sometimes help a friend with her farm stand, I was helping her one day this summer and someone came in to buy some stuff. I don't remember what, any way they were like you are gimping did you fall off of a pair of roler skates ond hurt your leg
I just kind of looked at him and was ike um no, I am not hurt. I had no idea how to respond or what to say, It was very awkward to say the least. I sold the murchandise and just kind of thought about it and was like oh well i guess I just have to let it go.
I hate the reactions people give me but even more so the asumptions they make. I really wish that rather than aproaching me that way that people would just say something like well why do you walk that way or Did you hurt yourself? this is much more polite rather than just making assumptions.

In response to Sheila's comment

Well i thak you again for viewing me as amazing but I don't really see myself as any more amazing that the next person in line. Having CP is just a part of my life as it is yours and your daughters. I have battled for a lot but that is just something we must do to get the things we want and need. As I am sure you know nothing comes easy with CP or any other chronic condition. Best of luck with your daughter and Keep your head up and keep climbing no matter how hard it gets

The depressoin that a chronic medical condition brings with it

I unfortunately have had a long term issue with depression. It is hard to explain why but it happened. I would not change who I am if I could because i am a great person and i would not be me if i had not been born with cP.
It is tough not to become depressed though. I still have to deal with everything that comes along with this like the rstrictions it puts on my life. There are some that i can not control. I will never be able to drive because of the visual issues that i have which i have talked very little about but i will fill you all in on those later.
I never really felt like i fit in wht everyone else because everyone just really wanted to be helpers. I will admit that is how i met the friends i have but they were willing to see beyond me needing assistance and let me just get to know them and they actually helped me to become more independant in many ways.
I honestly think alot of the depression comes from having to deal with all of the medical issues from such a young age. I still have more trips to doctors than others my age. That is just how it is because my imune system is weaker than everyone elses from being born early. Teh docs said it would catch up and i will admit it has done a great job but it still has its faults.
I do not like having depression and have been working incredibly hard to learn to cope with it and am hoping to eventually become free of it but even if that does not happen i am learning how to take control of depression not let depression take control of me. That is so important but sometimes its tough to do. I usually take things day by day and go from there that is how life works best for me.

my relationships

Well I am 23 and I have a great relationship with my family and few friends. I have an interest in guys but i am not sure i am ready to attempt that. I have never had a relationship with a guy. I never even dated going through high school.
I am getting tot he point of where i am begining to wonder if it really matters as long as I am happy. Before i wanted it for acceptance but now it does not matter who accepts me because the most important people in ly life are my family and they accept me for who I am and i onve that. I have hope that i will someday meet a man who will accept me for sho I am but i am not in a huge hurry right now.
I don't really know the eason for lack of relationships but i know some of it has to do with the fact of never really feeling accepted with my peers.

Just to let you know how im doing

Well the weather is starting to get colder which is not fun for most with CP. My legs are bothering me and my muscles are stiff. My hip is bothering me but that is not uncomon. I am pretty much used to it all but sometimes people do not seem to understand that someone can actually get used to feeling pain.
people ask how i do everything i do if i am in as much pain as i say I am? I just give them the honest answer of I just get up and do it and try not to think of the pain. I know there are many out ther ewho are worse than me and that always seems to be what others say too and to them keep going Stay strong, I just sit and think and tell myself it takes a stronger person to live with CP.(and any other chronic medical condition)

A funny story when i was younger getting my braces made

As i said i would give stories of times in my life to share weather it be past or present here is one of many.
It is very odd but this is one story i will never forget. I was probably four or so and had to go have my braces adjusted. I did not like this process much and when the orthotist went out of the room i ran into the area wehre they did the PT and was in there playing when he returned.
Well needless to say i am pretty sure i was one of his favorite patients because he let me sit and play while he fixed the braces so they fit corrently or maybe it was just because it was easier for him lol. These are the kinds of doctors that all kids need the ones who are willing to incorperate play or an activity that we like into our appointments. I know they say that docotrs are not supposed to be fun but this guy was and he will be remembered forever for that

Any questions or information anyone is curious on

Please feel free to comment or leaave your questions. I will reply through a post

What i am going through right now

Well, I gave you all some of the information about my younger years and may still add to it with stories as i remember them but I am 23 years old and will be another year older in a month. I am starting to experience some of the issues of aging with CP.
I am more stiff as of the past three or four years. It makes it harder for me to get around. I also have hip impingement syndrome and it is quite painful at times. I think it may be related to the wear and tear of living with this condition for so long. Even though i am going through all of this i still try to remain happy go lucky. Sometimes it is tough. I am waiting to hear on surgery to fix my hip and hoping it plays out so i can feel better and get back to my old self again.

comming to the realization

a few years after graduating high school i got to thinking about the phrase mom always said to me about the fact that if people could not accept me that i did not need them as friends. I finally realized she was right and in that aspect life has been much better.
As i said before i have the few friends who accepted me as me even with my diffferences and realized that inside i was a great person and those are the poople who really matter. It took me a long time to accept this and wow now that i have it is so much easier. I do not cry nearly as much and i am more able to say well if that is how you want to be than fine. I don't even know what caused me to come to the realization but whatever it was weather it be my maturity kicking im or my acceptance of the stupidity of others i am glad that it finally happened.

coping with the reactions

At this point in my life i was still a high school student wanting acceptance. I was not getting that from too many people. I was in a situation where my ed tech or aide would help other people with things that they needed assistance on and they would interact with me in her presence but other than that i had very few friends who would interact with me on their own terms until i started going to all of my classes on my own and asking friends for their assistance. That is basically how i met the few friends that i have today most of which i have litt;e contact with.
There were still many others that would walk by me and laugh or stare or make thier particular rude comment. there were also others that thought i was cool because i had biggger books. That was ok i guess but all i really wanted to do was fit in. It was tough to cope with the reactions and frustrations of things like that. Things have changed alot since graduating now i will move on to the part of my life i am in now. the issues of being 23 and the present

PT

This is one of the least favorite things about having CP I must say. the PT's said that it was supposed to help and make me feel better but i felt that it hurt me and it was really uncomfortable for me. I hated the isolation too but the discomfort was just sometimes overwheming. After each session i would havr alot of sppasms even though it was supposed to streach my muscles to prevent this.
I had some PT's who listened when i said it was begining to get uncomfortable and would change the plan for a bit from streaching to balance and other things but most of them just told me that they did not think it was that uncomfortable and kept going. I hated that because it was my body and when i said it was uncomfortable i think it was right?
I think my body and mind knows what it feels they can't because it is not happening to them. Now luckly i can do the streaching myself and it is not nearly as uncomfortable because i take it slowly and work up to being able to streach my leg muscles freely.

OT

I liked Ot for the most part. There were some things that i hated. we did gluing and cutting and alot of things to improve fine and gross motor skills. I did not like glueing because i hated how it felt to touch. Other than that i liked doing it I did alot of braiding that was really tough for me but i liked a chalange. Most things in life have been tough for us with CP so whats a little chalange here and there? I did not like the testing that came with those programs though because it was very tireing and some of the things even in the end were challanging. I could not draw a diomand for the longest time. and cutting is still tough for me to a certain extent.

The depression following surgery

when i was going through the surgery and recovery I got really depressed. It was really tough because i could not leave the house and after a few weeks of not seeing my friends at school it got really tough.
I remember having some depression before that but this was worse than anything it is tough not to get depressed when you feel isonlated most of the time. I was glad that i finally got to go back to school.

the dreaded S word

My orthopedic doctor talked about surgery freequently but he needed to wait for my muscles and tendons to stop growing before her could proceed with what he felt would be the most helpful of surgical options for my particular case.
I had what is called a tendon transfer surgery on my left foot and ankle area. they split the stronger tendon and put soem of it on one side and some on the other side of my foot by cutting it down the middle. It was very very painful. I was in a chair for three weeks or so then i went to a walker. I missed four or five weeks of school and went back just in time to take my final exams my sophmore year. I had to keep up on my work the entire time too because i did not want to retake my sophmore classes when i was a junior because that would have been harder than keeping up on the work it would have been twice the work load.
It was a long recovery for me i was stuck in the hous alot and it was done in may and the cast stayed on until july. It made for a long borring depressing summer. I am glad that was the only surgery that i had done for the CP. My teachers were amazed to see me come back to school the end of that year. I told them i was going to but i guess they did not think i was going to. One more time of many that i proved everyone wrong.

Bracing explained

I do not remember when exactly i started wearing braces but i can deffinately discribe the process for those who do not know what it is all about. Well first let me also explain the two types of Braces that i wore through the years. They were both AFO'S ankle foot orthotis I think is what it meant. either that or Orthotics i dont remember all of the medical wording.
One of the Braces that i wore was metal and it attatched to the bottom of my shoe underneath the sole and went to the knee. It had a joint like my ankle so that i could walk. It was heavey and it was in the begining only on one leg. Around the time i was in eight grade the orthopedic decided to put them on both legs. That was tough and i hated every minute of it. that is when i decided to change to the other type of brace. It still had the same name but it was made from plastic and alot lighter.
I did not really like the plastic because of sweating and the fact that it enclosed my leg except for the front which had straps over the knee area and ankle to hold my legs and feet into them. The only benifit was that they were much lighter when i had them on both legs and it made it much easier to move.

The fitting process
Well this was intersting for me with the sensory issues that go along with CP. They wrap the limbs in plaster from the knee to the toes and then wait for it to harden then they remove it and begin the process of molding plastic to the contours of the limbs. Well while they did this it was witing for me a few weeks or so.
Then came the actual time to try them on. I would put my foot into them and try to explain where the uncomfortable spots were. kind of tough for a youngster actually and then they would trim them down until they fit comfortably which sometimes took more than one trip. They would think they got all of the uncomfortable areas and then i would start getting skin breakdown so back we would go. It is quite a process.
Needless to say i had a great relationship with the man who made them. Out of the doctors i met he was one of my personal best. He took the time to ensure everything was ok before he sent me on my way.

More medical Casting explained

As I said in a previous post I had Cereal casting two or three times when i was in my younger years. Cereal casting is where they put casts on the more severely affected limb in this case it is my left leg to help straighten and reposition muscles and streach them.
I hated this because i was young and dealthly afraid of the loud cast saw that they use to get thim off. I have visual impairment which makes my hearing much more sensitive than most. I am not sure but this could be the case with most with CP. this is what caused my fractures on my heal because it softened the bones and i got bumped with a door shortly after so i had to go right back into another cast while it healed.

Some of the medical stuff

Well every since i can remember Doctors have been a mojor part of my life. that is not really my favorite thing.
When i was younger they tested my kidneys alot because i got alot of urinary infections and they wanted to make sure that they were not damaging them. I still get them but it is not nearly as freequent. Kidney testing meant alot of blood draws yuck.
I went through casting when i was younger which i will explain in its own post. after that i got a fracture in my heel that required being injected with some type of dye that showed on x ray so they could find the fracture.
I also had to go through alot of appointments with the orthopedic and the other person who make my braces. I was also more prone to being sick from being born early i guess because evry time someone around me got sick i ended up with it. For quite some time i was on an antibiotic that i had to take twice a day. I hated that. I used to run and hide lol. At least it kept me from getting sick so much.

The last bit on school

Wel as i said school was tough for me for many reasons with needing assistance in class to being separated from my peers even though it was for safety to the name calleng. It was so hard for me to figure out why some people are like that. Now i know that it is how this world is.
As i aged I really just came to block out everything that people were saying if it was not nice or something that hurt me. It was tough to make friends but i did have quite a few who accepted me for me and for those i am thankful
GraduationWell after four long years graduation finally arrived. It was a nerve racking time for me. I was nervous just because of the normal jitters bu also had to worry about the unfarmilliar surroundings so i did not fall and get hurt.
I had a friend who i will call my little helper. Her name is Ally. My mom was going to help me get situated in the correct line and place but then ally came along and said that she would help
I was very thankful for that because it is kind of awkward to have to accept help from mom infront of all of my peers
Project Graduation
I went to project graduation because it was an oppertunity that i chose not to miss out on. I do not regret going but there was not too much that i could do. ther ewere alot of sports and other things but nothing that i was really Physically capable of doing. I did have a cartoon drawing of myself done. Other than that i sat and talked to ally. It was a long night but i had fun. except not being able to participate much.
I hope that classes who have project graduaton in the future will think of more activities that will accomadate the physically disabled if they are capable of going. I am glad that i like to sociallize because if not it would have bbeen a borring night.

Some info about the good classes and teachers

I have been talking about negitive stuff with my experience in fine crafts class. Well i had so many good teachers and experiences with teachers that it is tough to talk about all of them.
In high school and throughout it took a special teacher to know how to handle my situation and i had some who knew. there were only a few that it came to as natural. Here is one experience
I had to take government and Economics as a requirement for graduation because even though i was considered special needs i was in regular classes so I was expected to meet all requirements for graduation accept the forign language requirement.
Here is the story. I would walk into my class and sit down and she would have everything ready for me before class even began. I was supposed to have a copy of board notes and all of my work enlarged so it was easier to read because of my visual impairment.
I have to say that this particular teacher is the only one who took the oppertunity to learn how to do that. It gave me independance because i did not have to call upon my aide each time i needed something enlarged in that class at least.

Fine crafts in high school

I was a senior when i took this particular class. As the high school years went on My aide was doing soe other things with others who needed help because i had a group of people in each class who would assist me with things i needed help with.
On this particular day i was in my class and i was making a stained glass piece. The teacher showed me how to use th soddering irion. I told her that i needed help because i did not feel comfortable doing that without assistance. she said that i could do it on my own and the friend that usually helpped me out was not at school on that day.
I tried to do it on my own and ended up buring myself not seriously thankfully. I did finish the piece but only soddered one side of it and then wnet to the clinic for ice after class.
This is just an experience that i had where a teacher thought she knew me better than i knew myself.

As I always say we know our limitations if we ask for asistance give it. If not leave us alone.

the four longest years of school

High scool was a very long adventure for me with good times and bad ones. Freshmen year was again rough because i did not know my expextations and it took a long time to adjust to everything. I Still recieve PT but not OT abd this was tough because i was taken from my fourth period class eack day for a half hour. In my high school we have 84 minute periods rather than the eight shorter periods like we had in middle school, So missing thirty minutes meant you missed alot of information.
Another issue that was tough for me to adjust to were the longer periods of sitting because in middle school my teachers would let me walk up and down the hall outside of the classroom to streatch my muscles to keep from getting to stiff and uncofortable. That very useful and helpful oppertunity disapeared in high school because if a teacher saw you in the hall qith no adgenda signed than it was not good. I did get to go for some walks with My aide when she had to go do something and i had no work to do but let me tell you that was not often.
I spent most of my time doing my studies because high school is even harder to keep up in than the lower grades. There is so much homework and assignments looking back i really do not see how i did it. I guess it is probably what most of us with CP call the amazing CP strength. I will be piosting more on the experiences i had in high school under different titles. I remember these times more than any other nut wanted to try and give every one a view of each aspect of life with CP. Oh and to let everyone know i graduated with honors. I have always strived to do my best. that was probably one of the hardest things i have done. I graduated in 2004 thankfully it is over.

being eliminated from certain classes

Middle school was so different. this was the begining of me really starting to feel segregated from my peers. As i said i was taken from some of my regular classes for PT And OT. This was The year that I Started having adaptive PE class which i understand was for my own safety and Am fine with it but it was a tough adjustment.
also Industrial arts was begun at this time. I could not do this class because of my visual impairment. I completely understand that now that i am twenty three and understand my limitations there. I was really frustrated and angry though because i felt like i was being taken from my class mates and it was hard.
I was offered a one on one cooking time with my aide or a study hall to keep up on my work instead. It was helpful but there were so many questions that i got asked like where were you durring IA. and i would have to explain andpeople would tell me what i was missing and that made it kind of tough.
It was a major adjustment with alot of changes. this is tough on any person but especially so on someone who needs assistance and is put into a new situatin with new people.

The transition Elementary to middle school

As I grew older and realized how most people wee being toward me it became harder for me to feel like i fit in. Middle school was especially tough because everything was bew including my aide. I had the same one through most of my elementary years excpt for a year and a half.After i finished fifth grade she decided to stay at my elementary school with another child who also has CP.
this was really hard on me. I was very upset for most of that summer and then i just started to acccept the idea and the first day of sixth grade cam. I remember the feelings like it were yesterday. I woke up and i felt really scared. I felt very sick to my stomach and wanted to stay home with mom.
I went back to being very clingy as mom calls it at home and school both. For a coouple of days i would not talk even to my aide, And it took longer for me to talk to anyone else. After like a month i was finally able to talk with the teachers. I knew by this time that I had cerebral palsy and it made me different than my peers in most of my abilities accept mentally. I walk differently, sometimes talk differently especially when i get tired and i also see differently. People started to pick up on that alot more in middle school and most of them acted more as helpers to me than friends. the help was great because i developed more independance. And as the year went on i made friends a few very special ones.

ally is one that comes to micd she was different from the moment i met her. she was quiet kind and willing to listen. and to her thank you so much for taking the time to get t know me and keeping in touch through.

Also angel who i still talk to over the phone and computer now. You know what it is like to be different and the difficulties. It was so easy for me to relate with you. You were always willing to losten. You have beeen one of my best friends through thick and thin thanks.

When school started getting tough

I loved school for the most part up until i was in the fifth grade. That seems to be when most people and most of all I started to realize that i was not the same as everyone else. I knew i had to wear braces on my legs before then but it did not matter to me or anyone else.
Once i hit third grade i could not tie my shoes and all of my classmates could that was my first realization. After that the questions started comming. that is around the time when people could ocasionally find me in the halls without my aide because I was becomming more independant and could fully button and zipper on my own.
I fould that people oddly enough waited for me to be in the bathroom befre they would actualy ask me what was wrong. I Don't mind the curiosity byt the thing that got me was why in the bathroom and why could they not ask me in the presence of someone who could help me to ecplain things.
I was always told you have CP and that is what i told everyone. they were like okay well what is that. that is a question that i could not answer then. Once i told them that i had something it was almost like i had something that they were going to get. Well for most I had special friends who accepted me for me from day one but for most it was a task to try and fit in. Those special people i hope you know who you are The one that comes to my mind right off from elementary is Angie. And to her I would like to say thanks for being a friend and i wish when we reached middle schoo we were not separated. I am thankful that i met you and you treated me as an equal.

Preschool years

Well these were the good years school wise any how.
I went to two full years of head start. My mom and sisters were very involved in that I had a wonderful teacher named sue. After the two years of head start i went to a daycare for the Physically disabled (wording not intended to be offensice)
Durring this time i was recieving in home PY and OT along with some other services. I do not remember all of them. I did not mind PT or Ot durring this time. They tended to incorperate it into playor the daily activities that i was doing. Everyone just seemed to accept me and did not care that i was different. At this time i am not even sure i realized that i was different than others,

The begining

I was born on december seventh. I was a thirty two week preemie baby. Mom started leaking water when i was sic months along. The doctor said that it was Mom urinating herself. By the time i was born mom had an ifection and i had to be taken emergency C section.
I spent time in the NICU as mosyt early babies do. I came home on New years and weighed three pounds ten ounces and that is what i weighed when i was born. I was hospitalized again for phenominia.
Once the time came for me to start meeting milestones mom noticed i was not meeting them on time. I was late to do most things and i never walked until i was almost three years old.At 18 months i was diagnosed with spastic dipligia cerebral palsy after many appointments to rule out other issues that is when the battle started. I do not know where i would be if I did not have my mom. She is a very special person.