While I was out getting groceries today - someone who works at the store I frequent and often makes small talk asked...'so do you work, go to school, what do you do? " Just coming from a pretty painful PT appt.... the only thing I could think of to say was ' I am between jobs' to which he gave me some advice...to just relax...and let my mind unwind... his advice was sincere........ if only I was really between jobs.
technically It could be viewed as between jobs- I mean I am between Doctors right now... maybe I could have answered with ' medical researcher' or thought of something funny to say......possibly at a different time, when I wasnt burning away...maybe I would have said something to make him laugh....
this is a struggle for me though and I thnk about it often- how on earth will I date again with this mess- my last bf had health issues of his own (he could relate to me) I didnt have to explain....
How on earth can this be explained to someone that lives a normal life- I dont think that it can.
I could see it now- a date- well I cant eat gluten, oh no, cant go for coffee , oh that flares my bladder, no, cant do that I cant walk that far.......oh this here...this is the cushion I have to sit on , if not I flare.
I dont know if it is possible to date a normal man. Heck I cant even make small talk without lying.
maybe i will just avoid interacting with him in the future....
Tuesday, May 11, 2010
Burning ...burning.
When I used to get the vulva injections I really had less burning....now I just have to learn to deal with it (somehow).... since I am not really comfortable returning to the practitioners I really do not trust.
Im worn out, tired of trying to figure all this out- where is the burning coming from.
I had PT today- just from going out to do a normal activity so many take for granted I am in a pretty bad flare...the burning has increased...plan is to see if the burning stops..as possible cause could be the very very tight PF muscles. I have been more active the last three weeks with Dr appts...the driving, sitting, walking, etc has impacted the pelvis...
Sometimes I envy those in the motorized scooters- I often think it might just be easier for me to figure out how to get one...I could just sit and not have to walk or stand ....
No one could even imagine what I go thru- the severe muscle tightness just from walking....
it seems to me that although my bladder (IC) seems to be better(dont have to stop as much to pee or use port o potties etc) the muscle tightness has gotten worse(or I notice it more...possibly?)
Im tired of putting on that happy face- tired of pushing thru daily activities...and most of all sick and tired of this burning. It was under control... dammit!!
I long for the days last summer that I could walk down my street a few blocks and back.... mostly I just wish some Dr could figure out a treatment plan that could help some of this.......
I didnt go to med school and I am beyond sick of playing Dr.
Im worn out, tired of trying to figure all this out- where is the burning coming from.
I had PT today- just from going out to do a normal activity so many take for granted I am in a pretty bad flare...the burning has increased...plan is to see if the burning stops..as possible cause could be the very very tight PF muscles. I have been more active the last three weeks with Dr appts...the driving, sitting, walking, etc has impacted the pelvis...
Sometimes I envy those in the motorized scooters- I often think it might just be easier for me to figure out how to get one...I could just sit and not have to walk or stand ....
No one could even imagine what I go thru- the severe muscle tightness just from walking....
it seems to me that although my bladder (IC) seems to be better(dont have to stop as much to pee or use port o potties etc) the muscle tightness has gotten worse(or I notice it more...possibly?)
Im tired of putting on that happy face- tired of pushing thru daily activities...and most of all sick and tired of this burning. It was under control... dammit!!
I long for the days last summer that I could walk down my street a few blocks and back.... mostly I just wish some Dr could figure out a treatment plan that could help some of this.......
I didnt go to med school and I am beyond sick of playing Dr.
Tuesday, May 4, 2010
Self PT
ugggghhhh-- today, I was finally recovering...PFD felt a bit better, but my PT wanted me to try the Crystal wand again and do self PT between sessions. So I tried it again, and now I am worse than I was before.... hurt more to sit tonite..(more in the piriformis area) which makes no sense to me at all. Urine stream is affected too.. however my vulvodynia did not flare this time...so one positive thing ...
I really fail miserably at self PT... it got so bad when using my thumbs that my PT told me to stop doing it. My muscles are generally tighter than the average person with PFD...so this complicates everything...
all I know is I was feeling better before I tried self PT...and really hope I wake up tomorrow feeling like I was earlier today before the Self PT .......
It is sort of a damn if you do damn if you dont place I am in... I did the PT because I needed to try it again...and I wanted to prevent the muscles from tightening or getting worse with my upcoming appointments... but now seems it was made way worse.
PT has ended for me...unless I can pay out of pocket...
I also did a pelvis correction today too- and for whatever reason the last few times even that has made my muscles tighter. (Maybe it didnt need to be done, but how on earth can you tell .... I rarely can tell if my pelvis is off...
praying tomorrow I wake up and things have calmed down... this is beyond frustrating.
I really fail miserably at self PT... it got so bad when using my thumbs that my PT told me to stop doing it. My muscles are generally tighter than the average person with PFD...so this complicates everything...
all I know is I was feeling better before I tried self PT...and really hope I wake up tomorrow feeling like I was earlier today before the Self PT .......
It is sort of a damn if you do damn if you dont place I am in... I did the PT because I needed to try it again...and I wanted to prevent the muscles from tightening or getting worse with my upcoming appointments... but now seems it was made way worse.
PT has ended for me...unless I can pay out of pocket...
I also did a pelvis correction today too- and for whatever reason the last few times even that has made my muscles tighter. (Maybe it didnt need to be done, but how on earth can you tell .... I rarely can tell if my pelvis is off...
praying tomorrow I wake up and things have calmed down... this is beyond frustrating.
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