my brain is in thinking mode having some contemplation with myself

here is what has been going through my head basically since thanksgiving. i have been really thinking that i need to learn how to live more independantly. I need to know how to pay the bills and things if something happens to my parents and need to feel fufilled with this stuff. here is the delema. i dont talk to mom about this because it really upsets her because for some reason i feel that she thinks she will be here forever. I wish that were the case but that is not how it works and I am in good enough condition to do things independantly just neeed so way to learn how and some way to get more independance with my transportation.
i know my options but i am really having a huge issue bringing this up to my family. I dont want to make them feel that i dont like living with them because I do honestly its just the thought of what am i going to do when that dreaded event happens and trst me I am not wishing it on anyone Mu parents are great this is just been going thoguh my mind actually for quite some time and i have brought it to my parents attention and they had the reaction of i hate living with them. i dont hate living with them here I just sometimes feel trapped because there is not any form of public transportation in out town. i dont want to sound selfish but if i dont learn how to be independant now when am I ever going to.
here is another question are these thoughts that go through every ones mind or am I just worrying for no reason at all. i just dont know who i will turn to if soemthing does happen and being unsure is really not comforting. mom and i have had a constructive conversation on it and she agrees that there are not many family members i could actually count on if something should happen to her most of my family members help out now because she is there to explain things to them and that i need to have transportaiton to my appointments because when i try and explain they just get frustrated and think i dont need to see the docs and i am using my medical issues to get attention which is really hard. i love my family and my parents are the best in the world and if it were not for them I would not be who I am now but there is so much to think about pretaining to my future and it scares me sometimes because in my house mom is the only driver besides my sister who has her son to be concerned with and im sure she wont be here forever either lol not in death terms just she will move on. but any how I dont think anything is going to happen in the really near future but it is somrhting tha needs thought or at least i feel it deffinately does.

had a really good day yesterday

Thanks giving was really good yesterday. I helped stuff the turkey and heled make the stuffing and put the turkey in the oven and a few other things so mom didnt have to do so much on her own. We had a really nice day and it was actually relaxed usually everyone is crazy trying to figure out what to do or needs to be done lol typical holiday behavior for our family lol but this one was very relaxed and went off withour a hitch. The day was spent with family all day and with the two puppies that was interesting but it was good all and all I enjoyed it very much despite my not feeling 100 percent

happy thanks giving

happy thanks giving to all who follow my blog. I had a wonderful thanks giving gift today ha ha not. the GI ordered more blood work when i went in so i went to have that drawn at my primary docs office and low and behold it was five tubes. The lady even sat and told me the colors lol two yellow two red and one purple cap. I had my CMP CBC Viotamin D thyroid stim hormone and a sed rate drawn. so needless to say it was not a bad blood draw things went smoothly but not my favorite thing to do just before thanksgiving.
I am not feeling too wwell again today I am cramping badly and very naseuated. i am hoping this round it may just be a 24 hour bug cause mom just got over something this past weekend. I dont want to go for another three months in pain. I do however intend to enjoy the time iwth my family as much as will be allowed with my not feeling well.
my bladder pain is being very annoying right now as well. between my stomach and bladder today has not been a very quiet day lol. i did manage to cook the pumpkin pie earlier and make it to my appointment so i think I can call it a productice day

a little on everything

Well the upside my stomach is feeling better. I have been using the philips and today started the colase. I feel so much better now I am not cramping anymore at this moment. As far as the IC goes I am taking the Elmiron but it could take up to six months to fully work. Right now the bladder is doing pretty good too. It has calmed down alot since the proceedure has been done. it took about threee days to calm down but it is doing well for the moment.
As far as the Cp aspect goes it is there lol. I am having some increased joint pain because of the cold and increased spasticity but I am hanging in there. I went out with the family yesterday for the first time isn a while. We dont really go out shopping and things unless it is around the holidays So I am glad i was feeling well enough to go. the only hard part is needing to know where the restrooms are because even though my bladder has calmed down i still have alot of freequency.
We are starting to decorate for christmas which is fun with the puppies not really lol. the have knocked some of them down already lol I have my nephew today so I will be busy and on my toes all day so i am taking the time while others are here to post this. I have a lab appointment for more blood work on wednesday and then I hope I will be set with docs until January.
I have a few things now with the Elmiron that i have to watch for but that is nothing new for me side effects are just a part of my life lol. i really have to watch for abnormal bruising though because the Elmiron can cause blood thining. I dont understand how but I know it can because of the patient information packet so im going to be over bigilent for a few months lol. It is so hard for me to put mew medications into my body i hate it. Right now I feel like my life revolves around meds.
I take meds for my bowels in the morning and an elmiton then in between I take my usual daily meds for blood pressure depression and a few other things then at noon i take another Elmiron then at five anotehr one and then before bed my other medication for my bowels. it is so difficult but worth it if they help. I definatley know the bowel regiment of colase and philips are helping still skeptikel on the elmiron. That is the hardest of the meds to take I have to take it one hour before or two hours after a meal so it requires some planning

Gastro appointment today

Well the gastro appointment went well as far as I am concerned. I am now suposed to be taking milk of magnisia pils and colase 1 or 2 pills a day for the next four to six weeks. I was doing the metamucil and wondering why i was getting more cramps well that question was answered too. she said that i was just putting more stuff on top of an already congested belly and it was probably not helping much. she told me that I needed to get my bowels moving more regularly and then add the metamucil back into the diet. i need to ask if there is one that is not flavored out there lol they taste nasty. i went to try and get the stuff at the pharmacy and they did not have the pill form of milk of magnisia so yeah im waiting to see if they can order it in for me.
i had a different doctor today and i was talking to her telling her about being born early and that i almost had to have my bowels scraped to get them moving as a baby. she asked if I was in maine medical center in the NICU ansd I told her that i was and she proceeded to tell me that she was most likely one of the nurses that took care of me when i was there. I find it kind of nice to know that i have met one of the people who may have taken care of me and I also at teh same time find it kind of surprising but any how i hope she was one who did care for me because she is very caring. i have to keep my appointment for january to see how the new recomendations are working.
I was suposed to take the meralax but after the taste of it in the gatorade I dont think I can stomach it. After it disolved it was not horrible but it is just the thought of it lol that is whey i asked to be put on a pill form. i also have to have more labs drawn yaya not. i am having CBC CMP thyroid and vitamin D tested i think there may be a few more in there im not sure.
i am going to take my first dose of elmiron today. i will only be able to get one dose in but it is a start. i am nervos about it as I am with any medication that is new to me. I dread it actually but it needs to be taken to see if it will help. I am hoping that it does. Other than that a fairly ordinary day today.

another aspect of living with many chronic conditions PA from the insurance

I just heard that the PA for my medication for the IC called Elmeron was aproved so now I am going to have to go through the Pa process with two of my medications now the other is for my reflux it is not really that difficult for me since i dont have to submit the paper work the docs do that I am just the one who waits for aproval or denial notices. thankfully as it stands now they are both approved i hope with all the change that is most like;y comming our way for medical purposes will mean thaat it is still covered.

another chronic yet treatable condition for me

Well as I said yesterday wehn I posted one of the posts i had my catheterization test done. the IC suspission is confirmed. Not what I wanted but it was what was suspected. the cath was tough but mom was there to hold my hand and yes even big people need that sometimes lol. They instilled both solutions one was not too bad the other made me want to fly off the table and go pee within like two minutes. It burned alot and then when we were finished she put the rescue solution into my bladder and it was like gone within a few minutes it was so cold that it basically numbed my bladder instantly. it felt like Ice was going in there. and not often does ice feel good in the bladder but this time I was glad for the relief.
She asked me which solution I thought had the potassium in it after the test and I answered her question with 100 percent accuracy. it was number 2 and it is not alwasy given in this fassion they switch it around so that it keeps the test more accurate but trust me If you have IC you know imediately basically which solution it is it feels much different that the saline solution from the get go. with me it felt much colder and I imediately felt the need to urinate and then as it sat there longer i got pain and burning. not exactly how i wanted to spend my tuesday afternoon but hey its over with now. I got my flu vaccine as well so i do not need to make another trip to see the primary as of yet. I am hoping to get a few months after all of the Gi stuff is done and the OB is done.

This post is geared more toward life with erebral palsy for me

I was on you tube a while ago watching videos of the many who share information on their lives with cerebral palsy and under one of those post someone posted that they felt sorry for the person because they had trouble speaking and moving. well this is what brought this post to light for me as I know the blog has not been related to CP hardly at all.
fotr those who have not gone through to read my full blog I was diagnised with spastic dipligia cerebral palsy at 18 months of age and it still affects every aspect of life today. I am unable to drive and unable to walk long distances without getting tired. When I go cristmas shopping for example I have a list of everyone who I need to shop for and get most of them done depending on who I am with because those ones i can not do because they will get the hint that the gift is for them lol. I usually only go out shopping two to three times at most for christmas gifts becaue it really stresses me alot and I get really tired and when I get overstimulated my cranky side shows badly.
another way that CP still affects me today is I still have a startle reflux and others like to use it to get a laugh and depending on the person I usually dont mind i normally laugh along with them.
Also i am learning that as a young adult with cerebral palsy that certain things that pertain to having cerebral palsy come along for example I have joint and muscle pain now tht most people my age do not experience. aslo I notice that as the weather gets colder it gets harder for me to control my spasticity and that seems to be getting a little worse with each year at this time. I just wanted to let others know how the Cp effects my life each and every day.
I have also had alot of peole ask me if I wished i were different or normal, My answer to taht is no I have not wished to be different for a long time. Yes it took me alot of tiem to realize that it is ok to be me and what others think does not matter but i am at that point now i am completely happy with the smart healthy young woman I am today.
I have been teased and things and that just makes me realize now to look at what is on the inside of people because that is where the most important things are. I dont like the saying beauty is only skin deep because when alot of people look at me for the first time they do not see my beauty because of my differences. I see my self as normal and beautiful but others need to take the time to get to know me on the inside to realize that my insides are the same.
i hate it when people feel sorry for those of us with cp that is not what we as people want and yes that is what we are we are people that are just like non disabled people on the inside. all we want is respect and most of all acceptance. this message does not pertain to my blog followers you all know from personal expereince that this is the case. it is for thos who do not understand what life is like to be permanantly different. we love ourselves and we were put here for a reason. It may take us longer to fined that reason but we are here and we were put here by god's grace and I thank him every day for the time he has given me on this earth to watch my nieces and nephews even the non biological ones who call me auntie grow and change.
I feel that I was put here to make others understand this condition and I am doing my best to do that in the only way I know how. I am not paid to do this but I feel it is my place people neeed to understand how it is to live with CP or any other physical or mental disability. try walking in our shoes for a while and you would wuickly realize we are not that different in our wants and needs.

CP is only part of us

Cp is part of me

This is true you see

it is just a part of me

I may look different

i may walk different

But my feelings are no different

On the inside I am the same

of my disability i am not ahamed

Ion the inside I am the same

I feel love

I feel hurt

i feel happy

I feel sad

i feel glad

I feel mad

We all have feelings

that is what makes us human

My feelings have been hurt

some have made me feel like dirt

those bad times I have over come

tiem it has taken some

but those I have over come

now each tiem someone is cruel

I no longer get blue

I tell them about what I have

and after some feel sad

i tell them not to feel bad

i am who i am because of my CP

but it is only part of me

this I wish everyone could see

I love my CP and I love me

This was just a poem that I basically threw together because of what i saw tonignt I hope it helps to get the point acoss that those of us who are disabled just want to be treated normally accepted and listened to. See my CP thoughts do come back lol I am sorry the blog has gone so awry but I have had alot going on to all of my faithful followers thank you for knowing and understanding throguh personal expereince what we want and need and thank you for doing your best to take care of gods special people we are all special in our own way but god put us here for a reason. seheila and steph i love watching Bren and malayna grow and change and love hearing from you on my blog if you have any specific questions on how CP affected me in any way through life please feel free to shoot your questions even if you have soem ideas for topics of posts on CP i am fine with that as well.

very nervous

I have my catheterization tomorrow for potassium sensitivity test to test for IC a chronic inflamation of the bladder lining. I am not looking forward to it at all. I had a cath when I was four and remember it clear as day. I am hoping this one reveals an answer though. I want to stop going to the docs thinking I have infections when I dont. I am so frustrated

ugh tired of it all

Ok i thought i was on the road to recovery with my tooth but now im not so sure I think it is actually an upper tooth causing the pain. I know that some of the pain and pressure was relieved yesterday after her digging in there but today I cut back on the IBupprophen and one of my upper teeth is really sensitive to anything touching it so I am going to wait until they get my permanant crown in from the lab and bring it up to them then and have her look at the tooth that I think is the big culprit. until then thank god nicole gave me ibuprophen because i will be using it lol
anotehr update on the GI issue I have been trying to keep u all posted and I am now no longer eating onions cafine apples with skin on them or dairy and I am starting to feel better. I have started taking metamucil again even though it is roigh on MY reflux because of the orange flavoring in it. I will be asking the GI if there is a different type of fiber suplement that works the same without flavor in it.
My face is so sore right now because I am trying toonly take three Ibuprophen a day because they are 800 mg and I dont want my stomach to wind up sik any more lol. I just wish things would give me a break. I do not know if I posted this on here but I went to the hosp on oct 21 because i thought i had a uti well they treated for one again but guess what the culture was negative yet again. so I took yet another un needed round of antibiotics only to have symptoms pretty much stay the same and had me thinking i was in for another round until the doc said it was not an infection so yes and yet again the bladder pain got me. fun fun not at all. the only reason i go to make sure they are not uti is because i have had so may recurrent ones and it can cause kidney damage if it is one and it is left untreated so it is a loose loose situation. The only thing I hate is they could have called me and told me to stop the antibiotic when the culture came back but they didnt so i took all of them like a dilligent patient and did not need them.
I am still currently having both dogs which is fun lol they play constantly and nearly knock me over at least once a day but that is ok i guess they are company when no one is home for me that is a pluss

happy veterans day to all as well

i already posted onhere today but this deserves one of its own thank you to all veterans and those currently serving and also those many who have lost their lives fighting for our country. My dental appointment also went well It is not abcessed and it was a big piece of food stuck between my fillings that the dentist herself had trouble getting out so i gues my flossing would not have done the trick even though the food make it feel like I had a huge abcess bubble in there. i also think that my TMJ is bothering me again because of them doing the crown it gets bad when they have me hold my mouth open for a long time but I hate riding there so i usually try to do as much in one appointment as possible. well I think im done for today ill post again soon

the plan to get me feeling better is this for right now

Her plan right now is just to sit back and let the Gi do what they need to do as far as meds and other things and then if I need to see her I am able most of the time to be put in same day she said unless she is covering for a vacation. she is also letting the OB finish her testing and then we are going to go from their. she said that the docs will most likely give me a time frame when i need to follow up with her and we will go with that other than that I have no plans at this time of going back unless things go awry on me.
I did not have a urinary infrction the last time they put me on antibiotics either they just did it as precautionary once again. I am so tired of it and yes I am still having symptoms so I am glad the Ob appointment is comming soon.
she did also take the time to explan to me that the medication that we are going to try If I test positive for Ic may not work and in the end i may end up with a spinal stimulator implanted into my back but she also told me that was like step 12 and im only on step 2 so that was really helpful for my anxiety. it really honestly went well. I am satisfied witht he transition as it stands right now. And in all honesty happy that she is standing back letting the others do their job but not pushing everything else off onto me alone. I know if I need suport or evein if i have a question i can call her and she will do her best to help me. i am hoping that haing the suport system in place with make me feel more secure with my choices and other decisions. i did not knwo where to turn before only to my OB now she won't be getting the brunt of everything even though she was more than happy to offer any suport i needed as well thank you Jenny P for everything and to Nicole for making the transition for me very comfortable and easy.
Basically she does not want to step on anyones toes but she wants to know what is going on so she can offer her imput and recomendations as well.

first appointement with new doc went well

I had some anxiety about meeting the new doc but once i got to the point it went very well. I have her the updated info on the GI and now need to let the GYN know to send me results or send them directly to the primary so that they know what is going on with me. she was really good about just listening. i was actually able to carry on a conversation with her so that is a plus. Most of the conversations with the other were just her offering opinion and thats about it. Her reaction to my being having IBS she basically said that I have symptoms taht can not be placed any where else and that IBS is really hard to deal with but guess what she did not tell me I needed to learn to deal with it all on my own so that was a huge plus too.
I am now currently having a toothache so back to the dentist i go in the morning bright and early. Not really wanting to go but it is needed. I have been taking 800 mg ibuprophen every four hours when it is suposed to be sic to eight hours. I am so tired of feeling pain its so hard to deal with

feeling kind of lost in the world right now

I am feeling lost. I wake with cramps most days go to sleep with them. I feel like pain is taking over my life again. I want to do so much for one getting back to being able to babysit on the weekends. I miss that so much. I cant do it right now though cause I nevr know when the unbearable neasua is going to get me or the cramps that just happen when they decide. I am afraid to go far from home right now. i basically go to appointments and with my parents and my aunt and that is it. I have not even ben able to visit my firend in over a month because of them being busy and my issues boy think depression is setting in again aghhhhh. this is my least favorite part because for so long i fight against it but then every time it gets the better of me with each bought of pain. I miss being able to smile without having to force it out. I am just so tired sorry I am complaining yet again but hey its my blog so i guess i have the right ot do that.
My hip is bothering me again but that is my secret for now unless it gets to the point of not being able to walk I refuse to go through more hell than I have to. I think its just becausse it is getting colder and my spasticity has been increased lately because of the cold. i am hoping that if i use heat for a few hours tonight it will calm down some. It is so hard to have so much pain and little explanation for it sometimes it would be easier to have something that shows when they look for it at least it would not be iluding the docs anymore. and to my followers since i see i now have four brendan i like the new wheels Malayna i love the ABCs sweet girl I hope to get to know Brendan like I have Malayna even though its not a personal relationship and to steph if you follow regularly and have any questions about CP please feel free to shoot them my way and i will do my best to help you in any wany I can.

interesting time last night well early this morning

First off to sheila thanks for listening or reading my complaining lol. i went to bed fairly early last night and not too much was going on outside. Well got woke up around 11 or midnight with wind and no power. We never got power back until this morning after daylight. I don't like power outages. They are tough for me because i can not see well at all. When it first happens mom usually has to help me and get me a flashlight because i dont dare to move because I am afraid of tripping over a toy or even more so the dogs lol. that is one beg reason I don't think it would be good for me to live alone but then again if I did live alone there wouldnt be toys everywhere lol but hey its great at theese times to have my family.
I am hanging in there with everything. i am now currently having cramping because I have been starving all day today which is unusual for me. i am normally lately not really able to finish my meals so I have been picking at small ammpunts all day long. making some lunch for my niece and my little cousin and guess what im gonna eat yet again lol I hate this going from not being hungry to starving its annoying but i do the best to honor what my body and belly both want.
I have a headache this morning because of not sleeping well last night i was up and sown alot which happens to me quite a bit even without being sick. But it also had to do with a few phone calls that we gor around nine or so but oh well I slept as good as can be for what was going on last night and after lunch im going to nap a little with the igrls.

ahhhhh!!!!

I am getting so frustrated. Ther is so much I am doing to try and get through this and it feels like i am not getting any where. I have found i can not eat caffine and onions. I can not eat apples now with the peels on them. i dont know if i can do them without the peel raw but i can eat them cooked in apple crisp and stuff so I supose ill e experimenting with apples and cooking here soon lol. cooked apples seem not to upset too much. I am just getting tired of the constatn recurrent sy,ptoms. I am also frustrated because it comes and goes so often and each time it comes back I am in so much pain and so neasuated. I am about to run out of my reflux meds as well but thankfully it is close to the scheduled appointment with the new doc so I should be able to get right back to the schedule. I run out tomorrow and go in on wednesday . well I feel like I am complaining here.
Oh dont know if I posted this recently but my GI appointment is moved up to november 16th thankfully. It is with another doctor but I am hoping she can give me some information on this condition even though I have had it for a long time. i was diagnosed at the age of ten or so but it has been so long since i have had a bought like this one. I am just patiently waiting for my appointment and hoping that i get a couple more good days in here.

awsome day today

I had an awsome day today. i did not have any cramps at all. It felt so good. I forgot what it feels like to not have cramps. I just really need to figure this out because i did not eat much at all and i think that is why I did not have so much pain. need to figure out my triggers. Yep that is my goal

feeling stir crazy and nervous about a few things

I am still not feeling 100 percent but I am feeling better at times than I have in well over three months. I am hoping with lots of suport from people and friends and most importantly hopefully help from docs to figure this out I will be on the road to recovery sooner rather than later. I know that in order to get the suport i need I have to ask for it but maybe now ill be more comfortable asking for it I hoope.
I have gotten five get well cards from one of my friends and his famil. I definately feel the love and suport from his family and most of mine as well. I just miss not being uptight about earing. I am wondering if in the begining it was a virus and now it is causeing my GI tract to be in a flare of My previous IBS and I am just having a really hard time getting hold of it. I have not had a flare in a long time and never one like this one.
I am really kind of nercous about seeing my new primary doctor on the 10th I am scared that she will react to me as my other PCP did. I pray she does not because i rreally need suport. My other PCP was under the strict idea that I have had abdominal issues for so long that i needed to learn to deal with them on my own. I agree on the part of learning to manage them but also need a suport system to help with that. I have my family but none of them have the issues with the bowels like I do so there is no one really who can help me to change my dietary habits in the ways that need to be domne and i am starting to get the idea but its still too much for me right now.
There are a few things i have found I can not tollerate much
onions
caffine
and apples raw I can eat them booked but the raw seems to be a lottle much to digest right now.

On the learning curve yet again

I am currently researching IBS more thoroughly than ever before. i am so frustrated with this whole thing. I was diagnised with IBS at the young age of ten and have not ever had symptoms this bad in my life. I printed off some information on it today so when i read it later I hope it may shed some light on why this is happening to me. I do not understand the whole picture. I was just always told that I had this and if it bothered me to figure out which foods it was but now I feel like I am just gonna have to give up one all of my favorite foods I ate an apple today and got major cramps. I just dont know any more. I am frustrated and again ready to just let it all go. i am sick of the constant fight to get answers and mostly just tired of the pain

had fun last night

i had fun going out with the kids and I even got a couple pieces of candy lol wasn't planning on it but one of them was my cousin lol and then I got a piece at a store we went to. I did dress up I was a silly looking clown just had the face done and that was it My nephew was elmo from sesme street and my niece was a butterfly. How did malayna like trick or treat if she went I know some things she is very uptight about with her cision and things so hope she had a fun halloween too