Thursday, April 29, 2010

Kudos to my PT

My PT always seems to know just the right words to say... she is calm and very supportive. She 'gets' that I am not the average '3 amigo' patient. My body and muscles react much differently than the average patient... just a simple stretch will tighten my PF muscles. I can be flared from PT for a week after... walking, sitting, standing, driving makes my muscles super tight.

An example- I am still recovering from the exam the Uro did in the first week of the month at the appt(that I chose not post about her on the blog)

What my PT understands I just wish my treating NP could understand. I was told I was non compliant at the appt I chose not to post I requested to have my file sent to me and read it Np states patient refused exam , patient refused TP injections (when what in reality was happenign was my PT was advising me not to get the internal exam because it was setting me back way to far in treatment with WEEKS...and the TP injections set me back two MONTHS over the summer... I thought I would never ever recover it was THAT to see in writing that it is how my NP viewed it was upsetting. and they just dont write refused...they underline it three times and write it in it is some sort of offense to them.

It isnt my fault my body reacts this way... I try, but if I was going to get vulva injections every two weeks and it was flaring me each visit when she did the internal exam... why couldnt she understand this... at one point the week of the injections I was having three internal exams that week. Two PT visits and one with the NP. and why not fully document what I was telling her ... the reason why I didnt want the exam. again shows how she does not get my '3 amigo presentation' Also, If she had made it clear that internal exams are mandatory then I could have decided not to get the injections as often.
Nothing like thinking all is OK when it is not.

At the appt I chose not to write about a lot happenend...I was accused of things that I saw today were never on my chart!!! Yelled at etc..for things that never were written.

After seeing my file-(which by the way is missing a lot , not sure who they had copy it but it is far from complete) it is clear that the team I put my trust in, really never did understand my condition. and sadly I dont think they ever will.

So, I am thankful that my PT gets really gets it and I know she must get frustrated that simple things flare me... but we have tried to work around it and do the best that we can. She has never given up on me. and never wrote that I refused certain treatments..etc.

I have a ton to think about- can I possibly return to this i even want to? the vulva injections are way past due for me and I do think I need them NOW...but can I go back into that office...knowing what I know now...I dont know that I can.

I think I am sort of being propelled in a new treatment direction by these latest events... I need some time to reflect and a clear mind to reach a decision that makes the most sense to me.

Until then, I am going to recover from PT and pray my muscles return to the tone they were at last week.


  1. You have to trust the people who provide care for you. It sounds like you really can't trust this doctor anymore. The problem is that we don't have many options on health care providers when it comes to these issues. I hope that you can find a different doctor because when you're in such a vulnerable situation it's really important to have a supportive doctor who listens. Good luck.

  2. Thanks for your support. and you are right I cant trust that Dr anymore or the clinic as sad as that is. Looking back I had issues when I first got sick of them thinking this was anxiety, because I couldnt tolerate even a q-tip exam. and that word anxiety was written in big bold letters underlined, with exclamation points.... (and this is coming from a top clinic for these conditions)
    but like you said there really arent that many options. It is as if I have no rights at all there... and my PFD gets tight just thinking about them.

    I have lyme disease as well- so it makes my body very sensitive to so many things...and like my PT said I am not the 'average' patient. Thank God she gets it.

    Thanks again for your support.