IC awarness month begins tomorrow

Interstitial cystitis

Frustrated

I am a step closer to getting my brace and shoes but i am just so frustrated. the doc told me that it was ok to try and walk with my sneakers on and I have but My ankle feels so weak. at points it feels like it will give out on me and today it did when i went to sit down and wait for my nieces bus i fell on the ground. i did get up and was fine but it is so frustrating. It is so embarrassing to fall. People forget that i have CP because I function so well. When i say I have fallen they are like well everyone falls not too many that i know fall at 26 just trying to walk lol Dad is doing well no real changes to report he is still struggling with sppech and other issues but he is trying so hard that is about all for nowOh and as of september 1st my blog will be dedicated to IC awarness as it is yet another condition I am diagnosed with i hope that all of my readers enjoy learning about this chronic misunderstood condition

ggot my fitting yesterday

I finally got fitted for my leg brace yesterday yay on that one woot woot. It will have a design on it i think its puppies but im not sure either that or small teddy bears they looked liek puppies so i went with it lol and its white with the outlines on it in grey so its not too bold yet not nland either pics to come when i get it I am doing better with the loss of jake now and to answer to sheilas comment if I have not already yes he has been sickly since he was a puppy he had stomach issues from day one i was truly blessed to have him for the 2.5 years that i did h ewas a wonderful companion always knew when i need a cheer up or kiss miss him so much but he is happy and pain free now Dad is doing well also he is able to move his right leg a bit and he is trying to talk much more since being home it is a huge adjustment but it is good all around I see the GI tomorrow for six month follow up

sad day today

My beautiful baby boy passed this morning he was loved and spoiled for three good years He will be missed but never forgotten mama loves you baby

I think things are headed in the right direction now

I have the appointment for my brace fitting it will be august 21. I can not wait. I am getting really frustrated with the lack of independence that I have right now. I am still unable to take more than ten steps in the boot without losing balance. Family is starting to get frustrated because they feel that I am doing it to be lazy and that hurts so much because that isn't true. I want so badly to walk. if i wanted to be dependent I wouldn't have had the surgery. I would have let the contracture and the actual term for my condition planters flex get worse and just let them do it al. I chose the more painful route so I could remain independent for longer. I am just frustrated and beyond words for how long and hard this past year has been. Please just let me get through the next day is all I keep saying to myself.
I definitely know that no one realizes how much cerebral palsy still affects my life today. the doc at the rehab facility asked me why I feel with the boot on and better yet why I was still on crutches and he is on them due to a permanent issue with his legs as well. I am not sure what it is but lets just say it was a bit awkward and embarrassing I felt so small. i do not understand why people can not just try to understand how this is for me. They seriously keep telling me i could be in dads shoes which trust me i am thankful that I am not He is my hero. he is so strong to get through this. His strength has kept me going to get to where I want to be agian. I want my dad back It just int the same without him.
On o good note the floors are nearly done for him so he can come home Tuesday yay my dad is comming home. It isn't coming fast enough I want it now I miss him so much I have not been in to visit him the past couple weeks cause I have just been too down and i do not want to bring him down with me. he does not need it.
I have been struggling with how CP has and is till affecting me lately I know the damage is non progressive but I still do not think people understand that my level of spasticity really fluctuates with weather fatigue and just in general from day to day. the student PT tried to say that I did not have any tone in my leg when she was doing passice range of motion on my knee well she found it in the portion where the knee is bent back. they said it is mild. Well just so happens that I made sure I had enough sleep the night before lol and that i was as relaxed as possible.
I have a major fear that after this surgery I am not going to be able to regain my independence to the point that i want and it scares me really alot it has just been a tough time for me right now I am still trying to keep a smile on my face but it isn't easy sorry for the book but I just needed to get it off my chest
I have also been retaining fluid but they tested kidney function and it is still good o I am on low sodium diet and elevating my feet which ha I have not been able to elevate since Thursday because of everything going on but the good news is my kidneys are functioning

not a good day today

no fitting for the brace today and the physyatryst or how ever that is spelled had no idea why i was there except for the fitting so it was a waste of a trip. I am still to swollen for the fitting they recommended I wear a compression stocking to keep the swelling down or ted stocking. I am still stuck watching life pass me by

Appointment today was good news

the doc that i saw who is not my usual doctor said that the IUD was fine so he was not sending me for an ultrasound which i think should have been done because i had cysts last time i was checked by ultrasound which yes are normal if the ovaries are functioning which mine should be but mine sometimes tend to get a bit larger than they should so I need to be monitored for that but oh well it will be done when it is needed i guess at least i get to keep the IUD which I am praying stops the bleeding completely after a year or so. I just want a functional life back. I am so tired of choosing between what I want to do and what my body wants to do usually the body wins or else it is miserable pain for me. I have a better quality of life now than i did a bit ago but I still feel like allot of my time is spent watching moments that I want to be part of pass me by. It is a very sad lonely feeling I feel so alone even in a room full of those I know love me dearly sometimes it is just so difficult. I know I'm complaining lol sorry.
the workers started laying the new sub floors today so at least the process has been started cant wait for it to be over with I want my house back lol It is in total chaos right now I would take pictures to show the work that has been done but I think I am going to wait till it is complete  to avoid sharing the mess with all of you  dad is starting to get more verbal he is on a diabetic diet so If he does not chose the correct foods he gets less than is listed on the menu and he is getting very upset as no one as far as i know explained it to him or if they did he just doesn't like it but hey if that is how we are gonna get speech back than keep it up
I go for my brace fitting tomorrow which i am so ready for yay i cant wait until I have it so done with this air cast thing  ready to walk. I think I will need Pt though as I still can not stand in the shower every time I take one like I was able to before the surgery. i need to gain more range of motion and strength in the lazy leg as I have chosen to call  it. I knew eight weeks of non weight bearing was going to set me back but this is more than i expected.

my life is a crapy roller coaster ride right now

On the surgical front things are going better but I have the appointment Tuesday to get fitted for my AFO so not looking forward tot hat as it is still very sore. Dad is coming home soon as well which is meaning much more stress here with trying to get everything done for him the ramp is nearly finished but still need to get a shower put in for him and floors redone as they do not want him on carpeting as it is too difficult for him to navigate as he begins to walk more on his own
the roller coaster ride does not end there My endometriosis is acting up really bad right now this is only the third period I have had since having the maraina placed five months og so it is doing something I just think its going to take my body longer to adjust to it than normal or then again it may not be the choice my body chooses to accept just have to wait and see my gyn said that usually once past the six month mark patients love the maraina well its fast approaching for me and im not sure im that patient lol.
I have to have it checked on Monday to make sure the IUD is still in position as im not six months out yet and in major pain again ugh not wanting that one either haha just done with all the doctors and their torture. I know it is to make me feel better but just so done  I am also retaining fluid right now and im not sure what to do about that one I should probably call my primary doc on Monday to see what she recommends.

Improvement for me and a major milestone for dad in recovery

First off dad is now back on solid foods no more ground mush yay dad for all the hard work and learning how to swallow enough to eat solids again. It is going to be a long road but each step is one closer to him coming home. he got to have a steak sandwich for dinner tonight my aunt stopped and picked it up for him the smile was awesome . My dad is finally coming back to me  I knew he would but its finally happening. Oh and a funny story the speech therapist showed him a picture of a woman who was swimming under water but had her mouth open smiling and when she asked dad what she was doing he said drowning. thanks mom for informing me of this story haha. hes right though if u have your mouth open swimming your probably gonna drown
the good news on me is My foot is starting to improve i think. today I have had less pain but have also been taking ibuprophen which i should not be but i need relief I can not keep this up for all the time I have until i go back to see the orthopedic.