Multipule medical conditions really suck frustrated right now

Looks like I will be adding yet another physical therapist to the already confusing realm of life. which means telling my story another fifty times. I was in pt for pelvic floor issues and had the script sent for the orthopedic issue because they do orthopedics there but there is a waiting list for the orthopedic issue and there is no estimated time they can give that they would be calling for evaluation . I am so tired of having no consistency when it comes to something so important. I really struggle to understand why on earth they force those of us with cp and other issues that affect our function physically or mentally to go through all of these therapies through school and for me even before i started school i was three when my life of therapies started they force us only to turn around when we are in high school to say oh you will no longer receive this service on a regular basis. then to find that hardly no pt places take my insurance I have been to three different places for pt since i had regular pt in school absolutely none of them seem concerned with anything I have been treated like another number until i found holistic PT. The treat me like a person not just an issue. I am struggling on weather to call any other place they gave or just suffer with the pain until I can be accepted back into holistic. I don't want to feel like just another number again. One of the places that i went for pt actually told me I do not have tone issues which is far from the truth seeing as i have the diagnosis of spastic cerebral palsy and that is one of the places that accept my insurance. I feel so frustrated all I want right now is to get things so that I am not in pain all the time. the pelvic floor therapy has been wonderful and I am in much less bladder pain. I am ready to make permanent change in life and stick to the things i have to do to change but it is so hard to do that when I am feeling tossed between places. i went to the orthopedic yesterday and he said things are looking in the right direction even though I told him i was still having hip pain and he did not feel that I need a follow up with him the goal of surgery was to get my foot bracable well ya its now bracable but my original complaint was hip pain and I am still having that portion of the issue. He does know that I am supposed to be going to physical therapy and was satisfied with it. Just feeling very lost right now. going to see what the primary doctor recommends before i jump into anything. I am not for making these choices on my own

update on walking and pt and happy thanksgiving

wishing all of my blogger family who celebrate a Happy thanksgiving. Had another pt appointment yesterday she wants to phase out of the pelvic floor stuff because that is going really well and work on cp related stuff. She worked on my legs yesterday and said she is surprised I am walking and as functional as I am with my spasticity. that was really shocking for me. i knew it had gotten harder but living with tightness i dont realize it She told me to get another script for pt where I am having hip pain so lets see how this goes Im not sure that my insurance will cover any further pt but we shall see I see the orthopedic on the 28th and will be adressing the issue with him to see what he thinks. i went to see a physiatrist once and didnt really hit it off with the group they told me a had very little tone but aparently i have more than a little so I think i will skip going back to them and see where regular old pt goes

brace pics

the brace is finally made and fairly comfortable it only really gives me any discomfort first thing in the morning when i put it on after having it off to sleep. Still on the lookout for any skin breakdown or pressure marks but so far have not seen any hoping this helps to prevent any further need for future surgery

pelvic pt update and brace update

I finally got my brace on Tuesday and I had another session of pelvic pt today. Which means that she had to watch me walk  typical pt ha ha its good though cause it shows that they are looking at the whole person not just the one problem I am there for which is why I really like the pt that i see now. she instantly said better walking so i take that as a good thing and so far the brace is going well the only thing is I have to watch for skin breakdown or tender spots which i knew but just didnt remember to do so but I will be checking tonight and if anything is found letting them know where  to see if adjustments are needed
PT i never thought i would say this but it is officially helping. i can feel a difference this round it doesnt just feel like extra work yes its hard and it is work but it is decreasing the pain and symptoms of my bladder so I am willing to work my butt off if it means relief. keep the positive thoughts coming though cause I often jynx myself when i share the good news. I have been able to sleep through teh night now for two nights with no meds for pain.
the endo is still tough but I can say that I now know when that is acting up rather than just feeling constant pain I am much happier and feeling better thank you all for the continued suport and I hope all of you are well. Would my Emma and Malayna or their mommies drop me a hello I have been thinking of you both alor latley hugs

My crazy life continues

I am currently doing physical therapy once per week in hopes of reducing my pelvic pain and bladder issues. It seems to be helping a bit but it will be a long road and a continued commitment beyond the eight weeks to see marked improvement. the physical therapists i have now are wonderful ladies. One that i work with i met a long time ago back in school it has been really nice working with her again she was one of  the few physical therapists that i had back in my younger years that i was able to connect with. My main physical therapist this time around is wonderful as well. she has taken the time to try to get to know me and has a bit but I have not been really allowing full connection I have told her all the important info that she needs to know to treat me basically how it works is she asks the questions i give the answers it isn't quite a two way street yet lol I am working on that though. It has always taken me a while to connect with people  especially in the physical therapy or doctor stand point. so many are not caring and just treat the issue they don't see me as a whole person which is really hard and over the many years I have just come to expect that so when i find someone who is different it catches me by surprise and I guess i basically wait to see if they are going to change tides to speak as time goes on.

They have told me information i did not even realize this trip with PT I really love the fact that they take the time to explain everything and double check that it makes sense and better yet they try their best to incorporate the exercise routine into my daily activities which really helps. I know that some of it isn't able to be incorporated but i love the fact that a lot of it is they are working really hard with me on strengthening my glutes pelvic floor and the large muscles in the tops of my legs and the appropriate way to lift. that's a tough one for me since I have basically invented my own way of moving that works best for me.

Dad is doing well he is improving slow but sure he has been doing a lot more standing lately today we had issues with out hot water heater and my uncle was fixing it he got up from his chair in the hall near my bedroom door and walked in and was watching go dad woot woot I am very happy to see this it is going to be a long road but he is determined and will overcome this too. We went to a play last night called the mericle worker it was really good Dad used to clean for the school that was putting the play on and they all miss him so the drama director invited us to come it was nice and he got to see a lot of people he worked with before his stroke he was very happy and enjoyed it.

I had a bad spell with hip pain again which seems to have been connected to the cyclic pain of the endometriosis because since i have stopped bleeding and the pain of the endo has calmed it isn't painful weird how things can affect life sometimes. I have to go for an x ray to make sure nothing is going on though because my doc ordered one I will more than likely be talking to my gyn about this soon to see what she thinks after i explain the whole scenario to her

I am still waiting on my brace and shoes but I think im getting them Tuesday yay for that i cant wait. I am not usually happy with having to wear something all day every day but it might help with more of the hip pain as well and it will help prevent my ankle from getting tight and my foot becoming plantar flexed again which was very painful. the surgery was hard and the recovery seemed never ending but i do not regret it now. I had a few very difficult times during recovery but i made it and I am thankful that i found a different doctor who treats me well and listens to me when i say something is not right. My new orthopedic is wonderful too I have made quite a few changes with medical providers in the past few years and they all seem to be for the better thus far
I hope all of my readers are doing well and relaxing as much as possible I am not ready for teh cold weather yet but its here guess i will have to struggle with another winter