post to sheila

I know that you read my poem on here about my mother. In your comment you said that you only hoped malayna would look at you in that way when she is older> In all honesty I truly believe by watching how well you guys do with her that she will. I will be honest that there were time that i dispised what my parents and unfortunatly mostly mom had to make me do But now that i am old enough to hear about where i could have been had they not been the what they were I know to apreciate every aspect of it even the pain that I had durring PT scessions. All that i have to say is that if Malayna says sonething hurts durring a scession be sure that teh PT listens to her and if they do not I know you will do the advocating because i went through alot of pain because My PT't felt that thye knew what was best for me een when i said it was uncomfortable and for that I learned to hate PT. Now i try to complete it on my own and can't right now because of my hip but can not wait to get back into it it really does help with the muscle spasticity in my case.
Oh I was completely amazed with Miss malayna's willingness to open for the dentist. I was always put out by a specialist when i was her age and then when insurance stopped paying for that i stopped going alltogether because the tactile issues were just too much for me. Mow at the age of 24 I go when i should for the most part except for the couple exams i missed over the past year because of all of the other medical stuff right now.
I still have issues with stuff being in my facial area and with gaging but the dentist i have now is great about it. When ever i have gaging he will offer me suction and water spray and that really seems to help to relieve it. I always though seem to be really tired after dental appointments because of the increased anxiety that i have with them. it has gotten so much better but is still tough for me. I just wanted to offer my insight on some things and let you know how they affected me when i was younger. I will go back through and re browse your blog to see if i can cover any more ground with my experiences I hope you do not mind this.

mRi scheduled already

my orthopedic doctor scheduled me for my mRI on the hip already. It is on march 16 at ten thirty. i am not looking forward to it at all i hate enclosed spaces. I still have alot of sensory issues too and the noise is still too much stimulation for me with my bision issues. i hope they offer some really good ear plugs lol. i had one when i was 16 as well to diagnose the extent of damage to my brain. i kept haing invoulentary movements and they had to re take some of the images so in the end my firs one took almost three hours to complete.
i am not happy about another one either since it will be done on my legs which have the most spastic issues not fun. And no medication to help relaxing. I forgot to ask and he may or may not have given it si im just going to be brave and take it like a champ malayna you inspire me even though i have Cp as well you are my new found little buddy hugs to you and mommy

orthopedic appointment over with

No good bews on surgery he changed my pain medication and now wants an MRI done because the pain I am having he says now is disproportionate to what he is seeing on films. It is the same pain I have been having just the medication is not helping. So frustrating so another appointment for me yippee skippy.
Blood work was a piece of cake lol never thought I would say that in my life. My mouth is feeling much better for the time being but will still need the root canal. Not looking forward to that one but hoping its not too bad. Other than that no news how disappointing. Getting frustrated no doctor seems to make sense right now confusing? yes thats it deffinately. How is Malayna doing and my adress is jennifer berry 492 @ gmail.com without the spaces thanks for offfering to send an invite
I will update again soon

crazy week for sure

Well where to begin? Monday i got a call from the endocrinologist office saying that i need repeat blood work. i saw him on January 25 and am just hearing from them now. so I am going to get that done and to my orthopedic appointment tomorrow.

Today I had a dentist appointment and come to find out i did not have an abscess but I need a root canal because there was decay left under filling and now the root of the tooth has died and they want to keep the tooth in and not pull it because pulling it will most likely Make my TMJ symptoms worse.
I also got my impressions done today an interesting experience with gag reflux and tactile issues. I wanted so much to spit them out but had to stop and say they will just do it all over again. It was tough but i got through it. I was surprised because the dentist that i had noticed my spasms in my lower extremities and asked if I was ok because i was shaking. I had to keep telling him I was fine and tell him again that it was because of my CP. St least he is observant of all bodily language that is what those of us with conditions need. And to Sheila I will update again tomorrow as well I saw your comment I am praying that this appointment brings good news rather than more stress and doctors torture we shall see
Thanks for being an important part of my support system I look forward to your comments and updates on on miss malayna do you have a blog of your own? If you do feel free to post the url here and i will visit you

Orthopedic appointment number ? comming on feb 24

This is getting really to be crazy. i have been having alot of pain this past week and called to see about getting my pain medications changed to something a little stronger and come to find out i need an appointment fo him to even be able to do that. i am hoping that i can get something figured out with this next appointment because something really needs to be done. I want so much to be able to walk unaided again. It is the worst feeling to go from being an independant walker to requireing crutches all the time. yeah I was expecting this stuff to come about but not quite this fast. Any way i will update on the appointment when it is through and i know more talk to you all again then.

Lupron again

I had my second injection today of lupron. i do not regret getting it even with the side effects the pain relief is wonderful. Today was an interesting one though because the nurse came into the room and said she was going to give the injection in my hip. I straight out told her in these words no tyoure not. this was after she asked me what the crutches were for and i told her my hip. she than offered to give in in the butt muscle which would have worked fine but standing for long enough knowing that if I have a pain while getting it did not sound good so she finally agreed to give it in the arm which is the spot i got the firs one because of the hip issues. an interesting day and glad it is over for sure.

Another update

Well we thought i had an abcess but we were wrong. I have TMJ disorder. I am getting my shot tomorrow. I heard from the orthopedic secretary again and she said that boston was suposed to call me on the 26th of January and have still not called. this is getting frustrating and harder and harder to take the letdown of veing told it will be soon and then hearing they were suposed to call on the 26th and did not. I am afraid that by the time i get in there to have this done my modility will be really off and difficult to regain because of the CP and i am just really kind of afraid here.
I do not want another surgery but this is an ynavoidable one. I am afraid of the entire thing. I will be away from eceryone for some time and then the recovery will be six months or so. i just want it over with so I can begin the whole process and better yet I want to know if they are going to do it and insurance will cover it because if not another aproach is needed. I can not keep going like this forever it is painful and limiting my abilities more than the CP itself does. Well i am going to get going here and hope that malayna and Sheila are doing well. Miss hearing from you.

writting to let evryone know how things are so far this month

Well this month has been crazy just like the others in the past lol. I went to the doctors again friday because I was having tooth pain. It sucks. I am on antibiotics for a week I think it is and I have to get in to the dentist soon. I have an abcess. I also have My second Lupron shot on friday the 12th. I am bleeding again but this one has no pain with it. Amazing. i called the doctors to make sure that what was happening with the freequent irregular bleeds was normal and thankfully it is. Other than that not too much has been going on. Mom is recoveruing very well. Other than that my time has been spent reading and working on staying positive. that can be tough sometimes especially when things just keep on comming. I still have not heard anything on the boston trip yet. Even after talking with the secretary and the doctor so I don't know what is going on there again.