Monday, November 30, 2009

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

Sunday, November 29, 2009

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.

Friday, November 27, 2009

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.

Wednesday, November 25, 2009

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.

Tuesday, November 24, 2009

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

Monday, November 23, 2009

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.

Sunday, November 22, 2009

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.

Saturday, November 21, 2009

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!!!!

Friday, November 20, 2009

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.

Thursday, November 19, 2009

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

Wednesday, November 18, 2009

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

Sunday, November 15, 2009

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

Thursday, November 12, 2009

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

Tuesday, November 10, 2009

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.

Monday, November 9, 2009

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

Thursday, November 5, 2009

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

Tuesday, November 3, 2009

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)

Sunday, November 1, 2009

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.