Saturday, December 31, 2011

the final day of 2011

I guess it is normal to be a bit reflective as the year closes.  However, as 9PM rolled in I found myself rather depressed an alone-   I could just picuture everyone out and about at the parties...  friends were posting on FB to parties I wasnt asked to attend- and well my imagination got the best of me.

but a funny thing happened- the closer it got to midnite the less down I felt- I spent the last few min of 2011 ringing in the new year with a friend who also has the three amigos as her friends...   I got a surprise phone call...
and then the nite suddenly became much brighter...  a neighbor on his trumpet, kids in the street and fireworks lighting up the sky....  I went outside , in the fresh air  and soaked it all in... enjoying it all... not wanting any of it to end.   I still find myself wanting to go back out there for one more finale. 
so I made it thru one of the loneliness New Years ever...

I have a lot to do to work on me in 2012-
I must get back on track with a routine to work on these muscles
I have to sleep better and eat better
limit stress
live more for me
in away i feel some relief, but also so pressure as to what is instore for me in 2012
I never want to relive a year like 2011 ever again, it did not treat me well at all.   I learned a ton, but at a great cost.

so- as i stand here typing this i feel my PFD is tight... but I have hope that this year I will improve like never before- I have hope and a chance

Wednesday, December 14, 2011

Period trying to kill me AGAIN

This all started Sunday nite when I was woke up with what I thought were cramps.... I say thought because I still am not really sure ... so I thought OK, my period will start....well it didnt and still hasnt started... it is just hanging on causing all kinds of havoc in my GI tract and my PFD... my pelvis across the top hurts...I dont quite understand why THIS month and why now...when my body seemed to be showing signs of makes no sense.

as I lay here typing..I still do not have a flow... but yet can feel the uterus trying to contract.... this sux... i wonder if maybe the flow will not this the month I loose my period for good...will I be stuck like this are all things that go thru my mind.... FEAR is the worst thing right now.

Heart stuff- last nite while on the phone with my friend and after I had just eaten i was lying down on a heating pad... and felt this flutter in my throat and I had to cough.... sometimes this happens and it goes away but this time it did not....  thankfully i was on the phone with a friend of mine that also has a similar health problem.... and she had me take my was 120 resting... and I could feel my heart beating very fast.... and kept having to cough.  

i wore a heart monitor in the past... and it didnt pick up anything.... i really think this is all hormonal... because like i said this period not starting is causing me a lot of pressure.... type of feeling....ugh.... so frustrating...

and why at a time when I was doing better........... im so worn from this. 

guess a gyn appointment is in order.  because there is something seriously going on.

praying really hard the period flow starts today and it will be an end to this misery.  I am still going to try and get in my walk and some excercises... i cant let this get in the way of doing that.

Sunday, December 11, 2011


I am hesitant to post this as each time i report something positive it gets whipped away..  However, this time even if it does I know i have reached this point in my journey.

first of all my PFD is holding its own again.   I am so releaved to be able to do an internal on the rt side and have a lot more room in there.. like normal even.  WOW.  and the trigger points are more localized.

obtrator closer to the outside (PC muscle ) on the left...  and sometimes similar on the rt side too.

I now know when my leg needs a pull to correct the SI upslip (frustrating that this happens more than I would like)

but my PT said now is the time if there will be any chance to get past the stage i am in now I MUST get disciplined...and encorporate strenghtening    MUST. do it.  So I have started.  sloowly.

yesterday I did leg lifts over the ball and some leg lifts while on all fours.  today I did the usual lap around the neighborhood... weather is getting cold but I seemed to hold up OK.   some SI pain and a little feeling like I have to have the leg pulled...but I did it.   I did it while having one of the worst nites in a long time, as my period tried to kill me... which felt like an attack on my GI tract.  but i DID it.

it feels good to be i remember the days when I wasnt.

I also have my appetite back, which I am beyond thankful for...

I started taking a supplement Samento and ultra flora probiotics... which i think are really helping me to feel better.. odd as that is.   whatever i am doing seems to be working... 

I have some emotional baggage hanging around though.. that sort of keeps coming to the forefront that I must just put to the back of my mind and propel forward.

my new saying is ' i just keep walking'   and that I do ... i havent walked this much in YEARS... and it sure feels good!  Physically I am walking and emotionally i will be walking as well.  I must if I want to regain my life.  or some part of my life.

I have hope... and I will not stop believing I will again get on that eliptical.. and have a more stable SI joint...
my new goal is to get back to the gym and I will do that in 2012 no matter what I will get back there.  and once back i will keep walking while there too... and i will never stop going again ever.

in 2007- i was in a very good place while going to the gym...however my PFD was like a pfd is better and external just is not strong enough...sooo like the PT said this is my best shot... and im going to make it happen. 

Sunday, November 13, 2011

bladder flaaaaaair

ugh, and grr and ouchie this sucks.... 

it started I think now with maybe eating spinach(which generally never bothers me)
and then my GI tract didnt like me eating black eyed peas...not sure why that is, and I cant tolerate peas either and last week pinto beans hurt me...ugh.

so last nite I decide to try the grapefruit see extract that came in the mail that the bad bacteria in my gut is sensitive too... I googled it before taking it and most with IC said they were OK with it...well like everything with MY bladder it flared me.

so last nite sucked and then today really sucked....
then I think I added another offender Quionia the equation (which in the past i have tolerated) 
I think because the bladder was inflamed already and I added the GSE... now everything is hurting it.

so I have been taking baking soda in water and just waiting this out...but man does this HURT and since I havent had t his in quite sometime, because I stick to the diet...ouch.   

im also frustrated that I cant ingest good the GSE... but can eat poisons from fast food places etc... makes little sense.

also when I was first dx... it seems I tolerated more foods...maybe because I didnt notice the flare as much since I was always in one, I dunno.  Also now I never get frequency as a symptom of a food is odd how that it is pain and early AM retention... 

yea, so it sucks.
weight loss is bad again too...tough to eat while in pain.
have a Dr appt on Monday that I hope I can sit to drive if not will cancel to the following week.... it is to go over the thyroid results.
so far I like this Dr...but I am not getting my hopes up...I like that he ran the labs...he is willing to try and figure otu what is wrong with me... he said it will take time and it is a process...he gave me a very thorough exam. 
it is just difficult to treat someone like me with a bladder like this that reacts to supplements that are supposed to help.    looking at my labs I think i have more of an iron problem than thyroid..... 

gosh this bladder is so angry at me...I didnt mean to piss it off so badly..........and if I was going to plan it heck i would have ate something yummy like thai or chinese...sheesh...i dont even flare this bad with alcohol...the very little that i have had.  

this is where everyone with these diseases really needs to give yourself credit for hanging tough during nights like this.  waiting for the 2nd round of meds to kick in...and hoping tomorrow is a better day. 

Sunday, October 30, 2011

this nite is tough

the constipation acted up last week and as a result aggrivated the fissure again.... it wasnt even constipation really...was just too large to pass...... so that upset the IC muscle on both sides and the left PC muscle that even after PT would not calm down...  so it was a mess....and today I had more BM nightmares.... and my PFD is a wreck.... the fissure is reinjured and I have even lost my appetite.   Loosing my appetite is not good because I am so thin to begin with..............I just wish this could correct itself already.

I have a second opinion with another colon dr this week and hoping he will prescribe the new treatment for fissures that most of the Dr are prescribing that actually helps to heal them.    Im very worn tonite.........I feel like the Doctors are missing something....I have been dealing with this fissure on and off since last November.

I fear it has something to do with the mold here but I dunno.......I just dunno anymore.
I have a marathon week of Dr appts.......even one tomorrow on Halloween which is usually off limits...and now I wish that it was because I have no clue with the pain I am in how I will sit that long to get there. 

I need a miracle to happen for this to be cured and for me to start gaining some weight.   I am also loosing ground on walking etc because of this pain.......guess i will eventually push thru it...ugh.   somehow push thru it ...... keeping fingers crossed by Friday I might have some answers.    it is just every time I think I am making ground I get pushed back down again.   It rained and snowed here yesterday....who knows if that is a factor with the mold... I sure cant figure this one out.

Friday, October 21, 2011


yes mixed... all mixed up, mixed feelings...that is what i feel mixed.

PT appt was rather interesting.... despite my increased activity ...walking more, visiting an orchard...etc... my PFD held its own for a month now.... right side was normal and the left had the obtrator right near the opening at a tone of a two.   when she released that it caused V burning ....ugh.

the is suspected the sacrum was off.... and when I told her where my pain was she also found a very very sore ligament...that really really hurt like a biatch..when she released it but boy did that feel good later...amazing what that release work does.  the rt side needed a correction and leg pull too despite me correcting so much during the week...suspect it was due to the sacrum being off.

now here is the most interesting part...I have been having problems with my neck for a few weeks... but kept forgetting to bring it up to my PT....  she seemed to know what it was just by me describing the symptoms.... and went right too the area...turns out it was my rib causing some of the pain....odd , right... for the first time in years I had full range of motion with my neck... amazing.  today though feels a bit sore... but overall dizziness is gone... amazing...     so frustrating that PT is the only one to figure anything out about me...Docs just dont know what to make of me and my symptoms...but she figures it out.

I am feeling so overwhelmed with life though lately..... just wish I could deal with my health and that would be it the good old days...but I just cant.... 

I also have a low tolerance for people who seem to only be about themselves....I just cant deal with them at all anymore.... so far I have distanced myself from one person that used to be part of my support they no longer are and that is my choice...for once. it does hurt as I got a msg tonite...that really ticked me off about them....  I was accomodating them....and shouldnt have been...lesson learned...heck we barely talk anymore anyway... and I feel myself avoiding them...dont feel like fitting into their life.... heck i dont even fit into my own life.  their email made me a bit more depressed.

  I am starting to be thankful for those I do have...and not wishing that I had those other types in my life... I guess it will all work out with those that should be in my life staying.  the above person is oblivious to ME and my life......and that is sad very sad.  

I am rather worried though about ths burning with urination....why I have it it possibly yeast.... I just dont know....but what I do know is I dont like it.   the fissure is also acting up...seems it just wont heal...  and that is rather scary too....  im just so damn overwhelmed.

so , yes mixed... hopefully that more activity gave me less PF symptoms but -  worried about the burning etc.

Friday, October 14, 2011

slight improvement i will take it

PT session was better this week...although I lay here recovering as I usually do the day after PT.  Overall for three weeks now the PFD is holding its own...this is with adding walking two blocks and strenghtening....  the leg pulls are what is the key keeping everything aligned especially after any walking.... it is tough living alone and needing a pull... I am thankful for my mom when she can stop by and give the leg a good pull and get me out of the pain.  It is a miracle really.

back to the PFD..the rt side needed a leg pull...internal..the PC at 8 and the IC were at a one tone wise...although her release really hurt- she explained it was because overall the PF was good and I now felt that more because those were the only tight spots.  Lft side was the obtrator and that was at a two. 
she showed me this one exercise and WOW i  can now see what she is talking about my rt side is so beyond strenght at all and probably why I keep going off on the rt side... I need to work on this, like really work on it. 

I am actually bummed tonite, because it would have been a walking nite, but I am too sore still... frustrated a bit , but I need to recover and not push things.
I have other health issues too though, head pressure, sinus like symptms , dizziness and some stomach issues... somene said it is a bug...but I think it is the mold issues here I am dealing with. 
I just pray this PFD stays like this so I can rebuild this rt side....  I need more muscle.

as my PT said even cancer patients can get strong again, so I am determined to do just that. 

I did once again loose someone in my support network.... I think this will be the final time resolution can be made with us...and while it hurts  a lot ... I will put all that hurt into physically making myself better.   it just sux as they were in my life for awhile now.... truth be told though, they did some hurtful things.... sux when things must come to an end.

hopefully, though the PFD will continue to hold out...i Really need a break from it...and I want to remain positive that I wll improve now that I have added in exercises.   God please make this happen.

Saturday, October 1, 2011

dont over think

I'm trying to remember these words my PT told me at the last session. She is so beyond right....and this reaches even outside the PT rhealm of things.

Ive been so used to trying to figure otu my own health that I am constantly over thinking things.
she told me that is what she is there if an excercise she suggests doesnt work for me I will tell her and she will figure out why and where to go from there.   So, that is what I have been doing with the physical part... Im just going with it.

I am happy to report that my PC muscle on the right is back to fact the whole right internal was close to normal..the left was tighter but not by conclusion the fissure was driving those muscles to stay tight.   I never thought I would reach this point and here I am.  so it is time to add in the strenghtening to it.... and try to regain some muscles.

My period this month has been heavy and Im still dealing with those other symptoms that no Dr can figure out.
and on top of that two friends who were part of y support network...are just causing me too much angst.

I t hink I just need to retreat inward for awhile...  and just be by myself...   it is just hurtful to be going thru all of this and then hav more hurt on top of it.  Im sure I am just more sensitive now...but still.   neither of them have any issues with me...or atleast they never bring it up to is always me having issues with them.  

I just wish I could get my life back...... so I wouldnt need this type of support...  maybe it is time now to be my own support system once again.   sucks though    ...I just feel so alone.

Wednesday, September 28, 2011

the Dr marathon has began

Im going to just write about todays appointment........ Im so was 2hrs with a cardiologist...most of which was testing.   Im laying here now with a heart monitor on..which is itching the shit out of me.   Im not supposed to sleep on my side, but with my PFD issues... that is how I sleep.   Not sure if this will even show anything at all.

the Cardio didnt seem to know what to make of my symptoms.   and I got a bit annoyed when he asked ' how are your nerves'   I had to think for a moment...what was he talking about here... because when someone says nerves to me... I think real nerves.   So I asked for clarification...and then he said how is your stress, anxiety... ever been to a psychiatrist.... I thought WTF....   the Dr last week asked similar... I have to wonder if these are standard questions now... I am so far removed from Dr... that this kinda stung a bit.   I wish it was just 'nerves"  asses all of them..   

I have a lot of new scary I lay here...something is wrong with my throat... I did have some chicken broth... but it is like menthol is in my throat...a very odd sensation that sort of pulses..   I have many new symptoms..  
eye floater is worse
cant seem to sleep
startle reflex has increased
cognitive dysfunction is very bad
driving makes things worse...
somewhat off balance and dizzy...
cant get out of bed in the morning.

Im living in mold too and I know that isnt helping anything as I lay here I can smell it, but cant find another place to live and that is stress alone... but so not causing these odd symptoms.
I think they maybe hormonal too... I am more sensitive, my period is sort of starting with the normal brown spotting.   I dont know what to make of any of t his but it mostly started while on the cipro or after...with that constipation.

I just feel so wtf is going on already with that too... sensitive to so many things right now...and so tired of being sick and alone.   guess I need to build up my support network again. I lost someone I thought was going to be there...they sort of are coming back...but it is causing more stress for me to have them in the picture...Im not sure what to do about it really- damned if I do damned if I dont.... but I think something will have to give.  I will sleep on it for now.

I am still living
my GI system seems to be recovering, very very slowly but recovering...and I am beyond thankful for that...   having a BM daily is a gift from God.   just wish I could gain some weight. 

will be thankful when this monitor is off of me for good. tomorrow morning...

I feel like I just need a good cry. 

Thursday, September 8, 2011 officially worried

Im worn out..I have used up all of my reserves...every last bit of them.

I am still suffering with the fissure....   had PT and the obtrator on both sides was very very tight...something I am not at all used to...not even close.  It took me back to the beginning days of PT...those painful , painful days...  then the PC was still tight...  it sucks, I cried, and it still sucks....

I have to go easy on myself , yet I want to know why I am like this, how to get back to my baseline.....  I just dont know what to make of any of it.

is it the mold here making me sick now....since these symptoms started when that did.  or was it the antibiotic that stirred stuff up.
all I know is that it hurts...really hurts.
I guess with something like a fissure you cant expect the PFD to just go along with it.   It is just that the last time i had the fissure the IC muscle was always tight.....and now that it just has me worried.
I really have been sick for a month now.......... and this really sucks.... 

positives-   I can now eat again....not so much before...and I feel hungry and full.
goal- to rest... have the pc relax thus having the V have less burn
overall goal...heal that fissure.

Sunday, September 4, 2011

my period is trying to kill me

i lay here completly defeated....I have not had a period like this in MONTHS....   last nite I thought for sure I would pass out from the pain.... it was the uterus I think... stiring up the oberator...and wow did it hurt....that on top of the bowel.....  I am so worn out..... I guess this is what labor feels like.

Im not even sure why my body is allowing for a period since my weight is so low..... I also think some sort of infection is at play here.... because my vulva really feels burny...... it sucks... and there is just nothing I can do about it.   the fissure does not seem to want to heal...... I just dont know what direction I should really go in with this or what Dr I should see.
there is more mold here in this house...could that be it....I dunno.    All I know is that my period has not tried to kill me in quite why now.... I literally am back to peg one with all of this.

Saturday, September 3, 2011

Satruday nite setback

As I lay here at 2AM on a Saturday nite I have to wonder will this setback ever end.?   This reaches beyond the pelvis and seems to be more systemic.  

This is technically day one of the period...which is usually not all that bad... but for some reason the last two months have brought with it more burning.  Although last month I was getting thru that UTi....or the UTI that wasnt..

I have the usual day one pains- more intense though and even had some jabs early on tonite while I lay on the heating pad.  
Ive been having odd reactions to foods too like the cereal- yesterday after I ate it I fell asleep and had yet another bought of sleep paralysis...then this morning woke up feling drugged.   and more sleep paralysis last nite.   Im not sure what to make of any o this... because this is also what happened the last time I ate this same cereal and the reason that I stopped.
this morning I ate it and didnt seem to have that reaction.  I dont know what to make of it.
the fissure continues to be horrid...and BM's are so messed up.

the vulva burning is back...yes you read that correctly it is back.   It sux...and I am having a difficult time dealing with it...I am mentally drained from it.
good news I guess is that the PC muscle was tight on the right side during the last session....which is my patter for the V pain.... I also was having more redness.
but as you can imagine I am not at all happy about this.   Something in July triggered this...and now it flares up now and then after being quite for MONTHS.

weight loss is bad too again....  like i said my entiere body is very pissed off right now and I just wish it would calm down already.   Im doing the best I can do to cope... while making sure I eat atleast three meals a day no matter what.   Im praying that I will get back to baseline...and my body remembers what it is like to have the PC not flare...the fissure to be  healed etc.

how on earth does one go from a PF tone of a zero to such a is just so not fair.

some often view setbacks like this as a time to revist something...maybe to find another piece to this maybe that is my time now........... I just want this burning to go away and for things to be back to baseline...gaining weight would be a good place to start...four lbs would be wonderful

Thursday, August 18, 2011

From UTI to extreme constipation..... mercury retrograd attacks the pelvis

all kidding aside... Mercury is retrograde... and it appears this go around my body is under attack.

the never ending flare was a UTI that didnt culture any bacteria out yet the antibiotics helped.   Well, after that was done.. I started to have stomach issues... constipation.... and then out of nowhere..I became severly constipated...not able to go for hours.. until i took MOM and a suppository and then finally I went.... but damn did that F up my PFD and tear my fissure.    So, I think everything is OK....after I have two BM's in a day... WRONG. yesterday I could not go felt like the fissure was not allowing it to pass and the pressure was terrible.... not to mention how woozy i felt etc.  Also yesterday I decided to try and add calories to my diet thinking all was clear in constipation land.... 
I am the worst I have ever been right now.......well maybe next to the time that I was also on Cipro and had similar happen which landed me in the ER... my stomach really has not been the same since that bought...but I could deal.
I had to cancel PT..which sucks because my muscles are so tight which is just adding to this.  put a call into the colon doc...who called me back personally and went over what he felt would help....   I did one of his treatments...and it is killing my stomach... feels like I have to go to the bathroom...but cant... I dont think I actually have to go...I think all these laxatives are going crazy in my body right now... I need a GI needs a damn break already.  
as a result my PFD is bad...and V is starting to flare up as is to be expected.... I may try to do an internal.... but not sure.  
i feel so ill i cant stomach much but broth... I dont know if it is the laxatives...or if I have some sort of infection that the antibiotics caused.   all i know is this is very rough to deal with......  im not used to feeling this ill..... and it has been a long time since I have.
I wish I could remember how I healed back then.... all I remember is barely eating anything for a few days...
Im praying very hard that this passes...praying even harder what ever it is can be treated or just goes away..... the nausea is really tough to deal with...and it comes in waves....
my body needs a break in the worst way. and Im not sure when or if that will happen..... so I have to just be tough and wait it out and know I will be OK again.   I got thru the last flare of the bladder now it is the GI...and I think most of that is the laxatives....    and the PFD causing havoc.....   I wish I could have gotten into my PT...but that will have to wait now five more days... seems like forever.  I guess that will give my stomach time to chill out...because that is what is driving the muscles right now.
hopefully, I will rebound and be back to baseline soon...real soon.
I have to say my friends have rallied around me as well as family.... i have people in my corner and this helps me to continue to fight........   I find myself thinking I will take vulva burning over this any day..... and I would.... because this is complete misery.

Tuesday, August 9, 2011

the never ending flare

it is like some rollercoaster ride.   and Im really scared this will not go away or calm down.   
ok I have so many factors contributing to this mess.... I have my period now trying to kill me, which it has not done in months...maybe a year.   It hasnt started and it does this thing where it just hangs on....and then I just wait until it graces me with its presence.   so im treating a uti that may or may not really be a UTI.... and it has caused havoc on my system.... my stomach once again is in constipation mode, so much so that I had to do two shot of milk of magnesia...just to ease the pain, but I think it flare my bladder or something has flared it.  

the burning urination is gone though so for that I am thankful...but this pain is so horrid....... I just want the period to start already.    I also feel so emotional....  for the most part friends have really stepped it up...calling , and checking in on me........ I like the support, really value them....and the distractions they have created.   but it sucks when I am the one slipping and Im normally the one to be strong and offer that I was doing so good and now not so.  

in a blink of an eye all was washed away.  One friend wrote to me tonite, it will calm down it has in the past and it will again you just have to be patient...........and I guess that is what i will have to be patient. but it is tough when everything is on fire , burning away...  ugh.    this is a living nightmare. 

so I am just going to pray this works out, heck I made it thru worse flares... the fissure debacle.....that took forever to recover from...the eating gluten and having constipation for quite sometime.... so bad I couldnt even get self PT.   so I made it thru all of that.....and then had a very good maybe this is just another dip....that will allow me to have another great period in time.   I refuse to let my mind wonder...I just want the pain to stop..... I think once my period arrives I will feel much better...probably drained but better. 

it is funny because I am usually so protective of my PFD....but right now I just want to get thru the moment.... thru the pain.....and the PFD will take care of itself.

there is not one trigger I can think of that would have stirred all of this up...nothing....and that is what is so difficult about this.  I have to just adapt and know that things will just work out.

Thursday, August 4, 2011

Full Circle- UTI Hell

as I entered that door- I recalled that cold winter day back in 2006 when I had first visited the urgent care..... the Dr thought it was just a UTI.... and it ended up never going away.

today- I entered again- after going thru a week of what I thought was the PC muscle recovering from PT, then a food flare.... and then some odd thing only involving the left side of the vulva..... I said this is not going awayt his is getting worse this has to be an infection.  but which one.... yeast, UTI... wtf!

so I peed in the cup...and they checked it and came in and said it was positive for nitrites and wbc...and trace amount of blood (possibly due to me having IC) blah, sucks.       So I told them what usually works for me...and they will be sending it out for culture.   By the amount of pain I am in right now I am certain it is ecoli.  I just hope something cultures, because then I will know for sure it is not yeast.

this sucks though the pain is terrible...and I went to PT (yes I must be insane) but some of this felt like muscles...but during the session she said they probably would just go back to tight (great so wasted money possible) atleast externally was corrected which again took

So, at one point the PT says this is what I was saying when things just happen when you are going along fine...then you deal with that and see where you are.... pt is super supportive ....but this is frustrating....I actually wish i could be more like them the non worrying type.... that never doubts they will be back to baseline again... but I fear this.....
im not afraid to admit I am afraid this is 06 all over again..... maybe it is the fact I no longer see my NP....and this is the first UTI without them. on board.... with the encouragement that this will get better- I take the meds and come back for a recheck.... 

my family doesnt seem to understand -as they have had UTI's and still expect me to do things for them next week that I know I cannot...I am being told I have to...well I cant unless I really improve drastically.    even when i say I have IC they say yes and I have been screaming in pain with UTI's ugh...frustrating as all I just stop trying to explain.  

so yea, I am without a real urologist following me and that was OK, when I wasnt having as many bladder flares... but now it seems like things are back to who knows what this UTI will do to the state of the bladder. 
I just hope this is what this is, because why on earth would it just affect the left side...wth!   I try to just focus on other things , but it is so tough mentally let alone to physically deal with this..... 

I need this to just go away and I will never ever take my daily symptoms for granted again.   being able to sit is first on the list.

So for the next few days I am just going to try and rest- as boring as that is...i have a UTI to recover from and kind of a double whamy of sorts. I will try to remain positive and focus on knowing I will get thru this and not allow fear to grab hold.   fingers crossed something shows up on the culture too!

I guess sometimes we are given things like this to show us just how bad it really could be...and even though we werent 100% - how far we really have come...... 

Thursday, July 28, 2011

setback take TWO

I dont think I have any tears left after crying for half an hour tonite until I got tired of the tears.

I knew I was in trouble when the vulva was red again...I knew I was in trouble when I had the burn back...I knew it... and knew what probably was the cause.  the damn PC.... 

but even though I attempted two nites in a row to do the self PT... it still was beyond tight at todays session.   Man did that sucker hurt on the right side at 8 o'clock.  damn it PC.   and then I go right to the why...what did I do to trigger that.

and I do that because for MONTHS the PC was OK.... and I have been more things I shouldnt have been
i could barely lay down tonite...can barely even sit or semi sit on the couch, standing hurts.... heck everything hurts to even breathe.      She also had to put my sacrum back in yet again, so that always makes things even more miserable as the muscles hate to go back into place

so here I am just like after 4th of July....

PT does not want me to loose hope.... and she is very supportive...and she is right... this is probably just minor and I will go back to baseline.... I am doing more now...I am doing all that I can. to manage this horrid condition.
sometimes it isnt so horrid.....
the progress I have made is profound- but I panic (that is what it is panic...fear)  I fear i will spiral down...I fear the vulva will stay red.... I cant let Fear win....  this has to just calm I am determined to find out where exactly that PC is...and how to release the darn thing.... 
she said by this weekend I can sit again, but to not put too much pressure on that area until what she did calms down.  the burn is pretty bad.... i guess even though it was released it still is very very angry at me...
really I wish the PC and me could live in harmony... I dont mean the PC any harm...  I dont know what makes it so angry.

on a positive note the left side was near normal... the right not so bad really.... overall picture, not so bad...  but yet I am so beyond miserable.  
I had hope, I now have panic.   My PT has brought me back from some pretty bad flare ups...horrific ones like the one time that I had injections and they flared up the PC so badly that for MOnths ( i swear it was atleast three straight months) of PC burning.... and tightness that would not let up...   yea , so I guess in comparison this isnt so just burns. 
and i have stuff to do... stuff that I now had to cancel sucks... but I guess that is life with this mess.

it makes me appreciate my good days all the more though....laying here like I am now used to be my daily norm. actually it was worse than this...flares that only capsaisin could control....  

my one wish is that this burn goes away.


Saturday, July 23, 2011

progress and some new hope

Last Monday nite- as my period was ending I decided that I needed to somehow get rid of the iritating, burning and muscle tightness that I almost always get at the end of the period.
So, I used the valium- and waited until i was relaxed and decided to just go and do an internal.  I didnt over think it, just basically found the spot that hurt and as the saying goes 'hung out there for awhile'  and for the first time I felt it release...  I actually felt the darn muscle release.    then to check my work.... I did a 2nd internal and sure enough it released.

I took the rest of my nite meds and went to sleep.  it was the most restful sleep I have had in quite sometime.  AND the next day I woke up and felt so close to normal..that irritating pain was gone....I as able to run errands and do much more than i usually can....
I as in shock really, but enjoyed every moment of it all came crashing down not soon after i came home.

mostly the external stuff...tight core muslces.....     I did a 2nd internal of the week that nite, but it didnt work out as well as the first.......and the external muscle pain just built up. 

oddly at the PT appt it was revealed the rt side was forward...even though i did a correction that nite..... my left needed correcting once the right was done.   AND internally.... it was basically normal on the rt and at a 2 on the left.
so I think that by doing the internal I am doing something for sure as this happened in the past as well. 

oh and I also was able to do some light strenghtening too....  

since my session I have basically just been resting- and enjoying my muscles not being tight....or feeling off.   It sure feels good to be put back together again.   Tonite though it was time to stretch again and do some light strenghtening   ...i need to try and do this as much as possible if I ever want to improve. .  

I am very hopeful that I am no managing this the best that I can right now.   I have to just stick with t hopes to build the muscles and get back to where i was a few years ago with this external stuff.   I think I can do it, but it is going to take a lot of time and patience and balance...lots of balance.
but I am hopeful for the first time in a long time.   

that being said I am going thru ovulation and everything is known to flair with me during this sux... but again Im not going to let it get in the way. 

I guess this will be day one of progress
1- set of exercises

Tuesday, July 5, 2011

S is for Setback

In all fairness to my body - I have done way more than I physically should have the last two weeks....

that being said the analytical me- really wants to know how I can go from a tone of a zero to now a tone of a

2/3-with the dreaded PC tight....arggggh

I think I am slooowly coming to the relazation that on some level my brain has to stop trying to analyze this.... things arent black and white... not even grey.... often there are no answers.
What I lost today was hope- on some level I saw the sign of a zero as my body finally being able to cope with increased activities.........what I missed was the fact that the tone of zero probably shouldnt have been.

If you think about it - those that are familiar with SIJD-  the joint needs muscles to stabalize it.......... I was doing no strenghtening at all...... the zero never should have been.  

that being said it did happen, so on some level I really do think my muscles are improving.

I sat there with tears in my eyes though at the pt session.... the PT is very supportive told me to remember  how far I have really come... look back.... because this new baseline.... is much different than how I was in the past.   So very true.  and I will hold onto that.
the reality blow though was when they said that this is something that will need to be managed...not something that will go away. 
I have been viewing it as such- I just wish I was better and knowing what was wrong and how to correct it myself before the downward cascade starts. I have to wonder will I ever be able to do self PT correctly....

Im back to watching how I sit, and after basically just living more free... this is so rough.  it is almost like I am afraid to move... even right now as I type this I wonder am I somehow affecting the muscles Iand the joint.
 I also am noticing that this is more SI joint that is what sets everything else off.  frustrating beyond words...but also somewhat of a breakthru that I am able to pinpoint what is causing me pain. 

my goals still remain.... walking a block
adding stretching.  

as I drove home today it seemed like everything was in slow motion- Im not sure why it was like that, maybe a chance for me to stop and take in the small things in life...   I just wish the three amigos didnt control my life so much... if only i could just stay aligned.... I think I would be so much better.  

Monday, June 20, 2011

zero tone

At last weeks PT session- after I told my PT about my week and everything I did- she was estatic that my right side had a tone of ZERO- yes you read that correctly like a normal human!!!!!   
I think with everything going on in my life right now this really has not set in- my life is super stressful and hectic right now...but damn a ZERO!!!!

this coming from someone who couldnt even have a qtip inserted, could barely stand PT at all.... and now years later suddenly for no real reason, it is a ZERO.

how on earth does that even happen?  I am not sure-  I thought my PFD was more symptomatic lately, but I think it is the external muscles...and the SI joint....  I really dont know what to make of this as I still am very limited in what activities I can do....  i have to wonder though.... how my PFD has been holding its own...dont get me wrong I am not complaining at all, i will take this, especially right now...take anything I can get.  I can notice a slight difference...i feel a bit lighter in the pelvis...but it is not a drastic difference..........I would think I would notice more.... odd really odd.

the left was at a 2 though tone was, still pretty that has been at a 4 as well a few years ago.... 
i want to work on stretching....  but am afraid to upset this balance that somehow I have created.

the PT thought purhaps it was because of the stress I clenched my butt and the pelvis relaxed.   I dunno, but felt it needed to be mentioned here...for times when this might flare back up.

I also notice the IC seems better, I can eat some foods I couldnt before... sweet potato chips for example...bags of them at a time...  when before they would really bother me. 

I hope this lasts...atleast for a little while.

Tuesday, June 7, 2011


Im not even sure what to title this entry- 
 the last few days I have had more pain- i think diet related. or I should say I know diet related... :(  the flare of the worst kind.
this entry isnt about my health really- just about a falling out with a so called friend....aka fair weather friend-  I guess I just got used to talking with them a few times a day-for the most part they were supportive if anything with providing me with an outlet to the real world , i suppose-   then some time passed and I sort of forgot all about them...until they contacted me-    and what I thought maybe was a moment for them to possibly apologize-for things to go back to the way they were-   turned out to be a conversation I would have been better off not having- it wasnt all bad-    it ended with them saying keep in touch.   gee thanks.... all those days where they were supposedly so concerned about my health about me etc...and that is what I get..keep in touch..... Im not sure why this has such an affect on me-  usually I just let things like this bounce off of me-    maybe because I seem to attract mostly fair weather type of friends....maybe because I thought this person was different...and maybe I want things to be the way i 'thought' that they were. no other way of saying just sucks. 
Im disappointed - and generally ticked off.    Meanwhile I am trying to regain the upper hand with my health and for the most part today I thought I was- but now I am burning yet again.  probably need to do some self PT-   I need my health and general well being to get back to the way it was a few weeks ago...sans this fair weather etc.   I need to shake this off....I need to get back to ME and my goals....strenghtening being number one priority.  

Monday, May 30, 2011

It's been awhile.....

I usually only post wehn  am feeling terrible, however...I would like to share a few better weeks that I have had.

somehow- it my surprise and that of my PT my PFD is somewhat stable....I dont know why, I dont want to even question it....even when I totally over did it a few weeks ago the PFD did not flare... it was more my back and other external muscles.............does this mean they are trying to work again, I dunno.

the week before last- I had to skip PT bc they were not avail..........of course I panicked at first but to my surprise again I survived the week break from PT, well I did better than survive, heck I felt the best I have in quite sometime.........

Im not sure if I felt better because I went into the previous weeks session in so much pain from overdoing it... that being out of that pain felt great, or that the SI Joint was calmer thus allowing me to be more functional.  I am thankful for that few weeks... very thankful.

However, something happend at last PT session, I went in feeling OK, and came out worse...ugh, I so dislike those type of sessions.  no real reason behind it.   possibly the hormonal shift.
so now it is that typical SI joint congested feeling...ugh and grrrrrr.  I try to correct what I can even now doing soft tissue work. I dont quite have the self PT down...but I think I am doing something...  so I will keep doing it...  tonite i did it and didnt feel all that bad, so we shall see.   I basically just try to find a spot that hurts...and just press there... and forget about what position it is... 

I have also noticed that the first day of my period is not as agozingly painful...I attribute this to my PFD not being so bad.   it kind of came as a shock to me when I look back over the last three months and say....wait a sec I am improving, I dont lay in bed on a heating pad during day one.

I have a loooong way to go though, I still desperately need to add in the core excercises.... without them I will not improve..or have any hope of getting past this....   it is tough for me... because it seems just when I want to get started my PT session does not go well and I am left flaring for days after and then not right until the next session. 
I really do think if I can add some muscle to my gluttes to support the SIjd.... I think I will be much better off.

My new goal is to start those exercises...  overall though I am happy with how far I have come and hope to continue to move forward...Im sure I will have small setbacks along the way.... like after last weeks session...but I am determined more than ever to get better.

Wednesday, March 23, 2011


Definition of VULNERABLE

: capable of being hurt : susceptible to injury or disease vulnerable to nutritional impairment—Journal of the American Medical Association>
vul·ner·a·bil·i·ty \ˌvəln-(ə-)rə-ˈbil-ət-ē\ noun, plural vul·ner·a·bil·i·ties
doesnt seem so bad when you read it in black and white- however  it seems being inflicted with the 3 Amigos has left me open to being vulnerable.

It seems I am way to giving of a person even with all I am dealing with daily- I still give myself way too much- and because of that I find myself in a rather unpleasant situation.
A situation I should have known better to avoid-  or at the most stay detached.   I put myself on the backburnner for this person...being available to them...and in a brief moment of 'need for support-  well on top of a person not being there for me- I was basically lied to on top of it all.  ( I cant go into many details as I dont know how reads this blog) tonite reality struck loud and clear- 
BUT it was a wake up call for me- and now I have to figure out how to properly deal with this.
I have a few thoughts right now like Ignore this person until I feel up to talking without feeling hurt
discuss my feelings(probably would not be received all that well)  especially my thoughts on them lying and being a tad self absorbed.   
unfortunately I have to have dealings with this person on a business type of level.
the phrase never mix business with pleasure has a whole new meaning.

but I cant go along pretending or pushing my feelings aside...  this friendship just doesnt make me feel good anymore.   If it did obviously I wouldnt be writing this and giving it - its own blog entry. 
I'm always available or made to feel like I have to be ( or I get texts, multiple phone calls, IM's etc)  ugh

There are those that prey on vulenerable people- and I hope I am wrong about this person- but that feeling tonite is very strong :(  

bottom line- im struggling to get back to baseline and I have no time for this stress and hurt feelings to enter my world.    
This has knocked me off balance and I dont like it one bit :/

dilator- epic fail acupuncture- mini fail

ugh, and sigh....grrrr.   so beyond sick of this mess I seem to be in.  tried the dilator after about a year hiatus- was stunned that it didnt hurt my vulvodynia (progress I thought)

but I think I went overboard with it- and have been in a horrid flare.... feels like my entire pelvis is tight.... restricted even... I have PT in the AM and cant wait to see her.

Acupuncture- the needles kill me- like really hurt - she worked on my back at the last visit.... and all the spots my PT works on she found immediately said they are all tied to my bladder.  I was in agony.   I dont know what to make of all of it.

as for my other symptoms- Im kinda scared- weight loss again and I think the lyme is flaring. or something is.

my period is iratic and im at my whits end with that - and what to do....ugh

Thursday, March 3, 2011

The agony of defeat

I stand here typing with my stomach in severe spasm...  my GI tract is a wreck - and out of nowhere the last two days I have been in severe constipation....   well constipation in the fact my GI tract stopped moving.   It just would not come out.

I didnt know the severity of this until I went to PT today and she could not even press on my muscles internally.... the stool was protruding into the vaginal vault :(   so it was a half azzed session.
I immediately left there and got on the phone with my GI dr how said to take M of Magnesia-  so I did a shot of that in the drug store parking lot and barely made it home.   The next hour was spent in pure agony... but finally I got relief

only to be left with more PAIN....OMG it feels like I gave birth to my bladder or something it is crazy... I seriously do not know how women give birth.  Of course I have a crappy Pelvic floor so that most likely is why this is so painful.

Before I left PT - she said I would need to do my own internal...and to try and get into see her (not happening she is booked solid until a week from today)   I dont even feel like having anything in that area touched at all.... it is terrible.

I feel toxic and sick and have no clue what triggered any of this-   and didnt realize I was that backed up....

so back to peg one- the story of my pelvic pain career......any progress is met by a new symptom taking over.

- on a more positive note the friend who I sorta distanced myself from has been there for me the last few days/nites.... as has a few other friends and my mom.

I have people in my corner pulling for me-  I just wish somewhere out there was my answer.    I am determined to figure this out....I have to. 

Ok- time for me to drink some peppermint tea and try to sooth my tummy and take my meds to hopefully try and sleep ( I can only hope) 

Monday, February 28, 2011

or not....

I think I may have over done things today- I went out to over five stores...... in and out of my car... I felt OK while out but once home... things felt off.... frustration really set in and I took a hot shower in hopes it would relieve some of the pain.......... it didnt do all that much I attempted self PT

I think I reproduced the pain, but now it is the wee hours of the morning and I have burning, I think vulva or bladder possibly....  Im feeling rather down as well... 

A positive is that I was able to go out and go to those stores- walk around etc.   things I havent been able to really do in awhile.

I just wish that the strenghtening I am doing would be more noticeable to me....  ugh, and grrrr

I also did some research on SI joint dysfunction-  I was diagnosed with this... and the symptoms I read are most of what I am dealing with.... it is rather scary really.... how much the SI joint could possibly be playing a role in all of this.   It seems that the treatment is building up the muscles around the joint to give it more stability, which is what I am working on.


Also someone who is sorta new in my life- who I thought was becoming a trusted friend... well... i have had to take a step back from them now....they clearly dont understand all I go thru- they seem compassionate, offer to help etc-  but I find myself distancing from them, yet wanting to talk to them at the same time.... an odd feeling of sorts. I put on an act for awhile with this person...but then when I had a setback...things got messed up..they said something that I did not appreciate..and now they are fine with just letting me be-  but is that really what I want?? not really...   I dunno sometimes I feel like the only people I can relate to are those that suffer from this stuff-    

Emotionally I am in a really weird place- missing people from my past who up and walked out when I got sick-  but am I missing them...or the me I was when I was with them...hmmm.  I have even had dreams with some of them in it.... 

tomorrows agenda will be to buy a new core ball-  I am looking forward to getting that in hopes to speed up the muscle building process.  other than that I will be resting...

Saturday, February 26, 2011

Cautiously optimistic

I have been hesitant to blog-  call me a tad superstitious...  after my last blog post- I thought I would never recover-
looking back on symptoms- I think that was a combo of hormones, stress, gluten, GI symptoms.. Pelvis gone wacky.

For the last two weeks - although I have seen ups and downs...

I am happy to report that I am back to doing strengthening exercises-  it is baby steps..but  huge accomplishment and yes it is in the beginning stages...and I am nervous that one bad flare and I will have to abort and loose all the ground I have gained(or what little so far)   so while I am there doing my strengthening next to those healthy running miles on the treadmill-  I can visualize my muscles getting stronger in hopes that one day the muscles will be strong enough to support my pelvis... so it will stay in alignment.  If it stays in alignment there is hope my PFD will improve as well.

Also another bit of the puzzle was solved....  it seems that when I have what is perceived by my body as vulva pain it is actually my PC muscle that is tight.  Last PT session it really hurt when she released it on the one side and I was amazed at how the PT reproduced some of my pain.... odd how that muscle can wreak so much havoc and cause burning??    I wish i was better at self PT-  maybe one day I will be. 

My Gi symptoms are still bothering me however, which is adding to some PFD tightness...

I still get frustrated when my muscles get super tight from any kind of activity... seems I cant walk forward without flaring something... frustrating when just taking out the trash causes this type of reaction.

For now I will take any gains I can get and remain optimistic  and if nothing else if I do have a setback I will have this entry to fallback on to remember just how far I have really come. 

Friday, February 4, 2011

out of nowhere it now with me

Last week was terrible.... i was taking two showers a day just to try and feel better and NOTHING would work.  Baking soda and water, did nothing...and I knew I was in trouble.  although instictively I knew what needed to be done to my pelvis I just couldnt do it to myself.

I had PT this week- and the culprit was discovered -  an  outward pelvic tilt and an obtrator  that was very unhappy..........but I was thrilled when the PT reproduced the pain I was feeling all week long.... I should have known it was that muscle as I was experiencing cramping and hip pain.  

My hip still hurts, and I cant figure out what is causing my symptoms...I dont know if it is bladder, yeast, or possibly hormonal.... it is sad that I have taken a step backwards with this pain....... because I felt so much better after the PT session.... so I dunno what happened.

I took a nap tonite, I felt like I had a fever.... i dont have the patience to wait this out- I find that the most difficult in all of this.... I was used to one norm and now have been thrown this curve- 

My PT did give me some hope she feels my PF is doing so much better and encouraged me to add strenghtening in attempts to keep the pelvis more aligned.   im sad that I cant start that now with these symptoms like this.    I have tried just about everything I can think of to relieve this pain... i dont know where it is even coming from.   Feels like possibly the bladder and IC muscle. 

Praying that in a few days this goes away...and things start to calm down or sort themselves out.
In case this was or is related to diet changes i have gone back to the bland diet....
ugh what a living nightmare this is