why am I back here again and how did this happen

I forgot all about this blog. I just stopped writing , I stopped dealing with anything pelvic related and lost touch with so many. I was doing so well, I had two relationships last year , but at the end of the last ne something happened. I'm back here again, laying in my bed typing..knocking it will hurt my neck and hands. so i will get to the point. Last year around this time I had a PT session for my neck , the next nite I took myself out and sat for hours talking to this random guy about the guy i was dating. what a waste of time and of good health...i had decided that i wouldn't contact him again but then during a tipsy weak moment i texted him and he called me. he wanted me to come to his place but I didn't want t walk up all those steps again. yes i said steps and said sitting I was doing alllll of it again! I spent the nite at home alone ..but the next morning he texted and knocked on my door he was going to the beach and wanted to give me a massage well as i was getting ready for my showers he was massaging me then rubbed himself on me as i was not wearing anything i quickly washed off in the shower and felt ok. i drove to the beach ..we walked in the water but some splashed n y crotch....i had forgotten my change of clothes at the car ..epic fail i felt the rawness at the top left crotch ...again didn't make anything of it ...changed as soon as i could , again going up more steps and later sitting on a hard booth seat to eat. this guy has no clue of my crotch, how far i had come and everything that i was about to loose. as we were walking i had some urgency , and some irritation and itching but what was really bothering me was my foot and i really wanted to just stay down there....round trip is difficult for me...but he was selfish and to be fair has no clue all i dealt with . the days that followed were met with extreme itching at the top of the vulva, my period came early...i would get biting sensations in my leg, then i had clitoral pain and irritation with peeing. i had no gyno...no dr other than my urologist ... i got into see an obgyn and at the appointment he was terrible with the speculum, hurt me and wouldn't listen...wanted to blame it all on my muscles what i remember so vividly is the pain when he moved my cervix , it reproduces the pain in my left hip flexor , he felt it was either yeast or contact deemititis he did not run a yeast culture and he did not send my urine to the lab. the next week i saw one of the top dr in the country who failed me as well..he forced me to get yet another speculum exam , he did not think it was yeast at all ..smh....i had no clue then how far down the rabbit hole I was about to go. yeast cake back positive on culture his Np refused to give me meds that would work or have worked in the past..i got worse so off to urgent care i was urgent care later found a uti and at that point it was a month into this nightmare i did all the right things i got right to doctors etc. so i took the cipro and felt much better , i could sit again, and walk and i had my life back or so i thought the meds ran out, and i got my period and pain came back again the pain was up near the urethra on the skin ..so back to urgent care i go ad that dr refused me cipro and said levaquin..he swore i had a kidney infection ..aka my usually tight muscle to him was me guarding an organ i regret that i didn't call my pcp but he a few days prior didn't believe the cipro was working, but it was and it did . the rest is history ...wait lists and circles, pt confirming pelvic floor muscles weren't part of this that's the short version, there was an ER visit, intense kidney pain, a missed trip to florida, tears and more tears the medical community has made so many mistakes, they have failed me. i feel abused and broken ... i just don't understand how one dr can't just run proper cultures!! rule stuff out of heck put me back on antibiotic to see if it helps! i basically eat and lay in bed oh and did i mention the now fecal impaction after the cipro and the months of suffering? my pt at the last session feels that the superficial muscle is entrapping the pudendal nerve and thus pulling on the left skene gland...so when i said well this is the pain i've had for a year how can this all be....and she says the uti was causing it all. even she has in a way failed me creams feels like hot acid poured on me ...it's basically the left skene gland and what feels like the urethra or clitoris on the left side. how can not one dr figure this out...i'm sick of it. i'm so fed up i had bactrim in the closet and started it today...i need relief. ok, have to stop typing, as my wrist hurts ..felt good to get all of it out there ..out into the universe and hope maybe just maybe the universe sends some answers. PT tomorrow more money ..and no real relief she's all i have though

It's been awhile

I'm going to give this blogging a go again. I've mostly not posted because overall I am doing better. I'm writing more to just get something off my chest because I can't keep having it over in my mind, I tend to over think. So, let's see...on the dating front ...I've had some prospects...nothing really panned out though. So, I've been chatting with someone I interact with almost daily, I've been talking on and off with them for about two years...recently it has been more on than off in regards to chatting when I see them, So recently the conversations have gotten more personal. I am fairly quiet and really keep to myself. But this person has slowly gotten me to come out of my shell so to speak, their light hearted, off the wall nature seemed like just what I needed. So fast forward to the other day..they make a joke saying oh I bet u are on x site... And I'm like what is that? Is that a real site. They say yes..kinda smiling and laughing a bit. So they explain the site...and I ask if they have a profile and they do. All the while I am thinking...why is this person sharing such a personal thing with me of this nature. The convo continues and they mention they used to model when they were in better shape. I of course think this is just one of their jokes. The convo continues with more flirting on their part.... I decide to just go with it. Later I check out the site...and since I'm somewhat of a good detective I finD their profile, I stood their stunned and I'm sure my mouth was hanging open.... All this time I thought this person was a guy...come to find out they are transgender. i always questioned if they were possibly gay...I knew they were pan sexual. It took me awhile to let the shock where off... A lot didn't and still doesn't make sense. The flirting, the banter....I started to think way to much about all of it. With the spotlight on the transgender community of late, this is in my face daily... I find this person very nice to chat with They seem, fun, and odd in a quirky way. we are both somewhat reclusive and have some things in common. We can chat for awhile. Many would probably Run away at this point, but for some reason I feel drawn to figuring this out. Figure out why they mentioned that site...find out as much as they are willing to tell me, Today I interacted with them, but we both were rather subdued ...I am in a bad ic flare. But there definently was something missing from the conversation today. I have to wonder does he know that I know? I'm just not so sure. Maybe he just felt awkward or vulnerable or maybe I'm over thinking, I always feel like I live a lie..faking being healthy just to get thru life. Wondering when to tell guys about my illnesses , the sex etc....and here is this guy also hiding and in a huge way faking. I'm not sure where this will all lead,,,originally I was giving myself until the end of the month... So I will see them again tomorrow and I'm going to bring up a few things, maybe even that site. See how they act. The flirting last week was a bit over the top.

My last well years

Hello Readers/followers- it has been a year since I posted- im coming back here tonite because someone suggested I start a blog..and then I recalled i had this one. when I got sick in 2005 it was sudden.. one moment I was vacationing the next i was beyond sick .. scary sick. ER type of sick. I tried to continue to work but could not. Then for a brief period of time my work forced me back and they saw that I could barely hold my head up at my desk..so I was placed back out on leave. I was bitter for a long time.. and too sick to even write a final goodbye email to all my coworkers and friends. I never really gave that aspect much thought.. The fact I was not given proper closer...how I was just cut off from the world I knew... I had a full life.. friends, a good job. A few nites ago I deiced to look up a few former coworkers..when I looked up this one guy; I shortly discovered he had passed away in 2010. It left me shocked..hurt and all typed of other feeling rolled into this big ball of emotional upheavel. he was young.. left a family.. we hung out as a group.. and had a lot of fun. while i was fighting for my health and my life consumed by this illness.. they all moved on.. and he even passed on. I feel robbed... im not even sure this guy knew what really happened to me... im not sure if it was circumstances..or if i stopped communicating with some...not by choice.. but circumstance. regardless, i may try and get back in touch with a few of them... im just feeling so much loss..i can even express it in words.. maybe the correct word is cheated.. i feel cheated out of the life i was living.. can anyone out there relate to any of this? if i could talk to this coworker again...i would thank him...thank him for being part of my last healthy years...thank him for the laughs...looking out for me.. etc. you just never know , i guess when you might be spending your time with someones last healthy years. as for my health-- I switched to a new PT last spring..and saw significant improvement---my neck still remains a trouble point for me.. and i struggle with htat a lot im seeing a chiro out of state.. who is helping i started taking glucosamine and that seems to have helped my IC I saw a new urologist 3 months ago and she did not feel i have IC...my bladder for the first time ever when palpated did not make me leap off the table...it did NOT even hurt! she felt it was V pain.. glands were visibly irritated... i asked for gabapentic cream and she Rx that for me to use during flares...it seems to help The rest of my world is still very stressful...the mold in my home was never remmediated...iwas conned out of thousands..by a guy who pretended to be a friend and so concerned about my health was nothig but a fraud. this causes me the most stress as I am now looking for a roomate. Its odd though.. the healthy segment of my life..i forgot all about it..until the other nite... im going to start to get back into my old mindset again.. but only more improved. Ive been through a lot since 2005...ive learned a lot ... im hoping in time that I will gain more acceptance of this passing of the coworker friend..and acceptance for all the loss surrounding my last well years.

Purple

You know those photos where you can highlight certain colors to accent a certain shade? The apt in the Dr office was like that photo. I noticed immediatley the purple stability ball used as a chair behind the Dr desk ( i have a purple ball at home) Then as he sat down I noticed he was wearing a purple tie with purple pinstriped shirt. and there across the desk was me.. wearing a purple sweater. and I thought for a moment what it must have looked like for the student seated beside us. Did they notice the color scheme as well? I didnt say anything.. but I thought to myself how ironic this all is. ... anyway... back to the appt itself I decided to go back to one of the Dr i have seen in the past to rule out/in and infection. As fate would have it they had a cancellation for today. There is usually a very long wait to get into see them.. so I was thankful. I drive down.. and think this isnt so bad... I drive through the city and remember all those times i would drive down those same streets in burning V pain. I remember the time my dad had to drive me because i was too sick to drive.. ouch there goes my neck.. have to massage it at the next light. Finally I arrived and found a spot to park and I made my way across the lot into the doors of the hospital and up via the elevator. I was mentally preparing for all I had to remember to ask the Dr. Upon arriving i was greated by the very nice staff ( not something one with the V is used to or atleast not me ) I was relaxed and I made myself as comfy as I could be as i waited. I read some breast exam pamphlets and other hormone stuff out on the tables.. wondering when I would hear my name when in the distance over the hum of the heating systme i heard my name. Undress from the waist down.. ( havent heard that in ages i thought) Wow the table of insturments no longer makes me nervous. I dont feel nervous. The dr comes in with a nurse and a student. asks my permission for them to be in the room.. wow. The Q- tip test- not bad.. wow.. im shocked.. have i really come this far... no.. wait that burns a bit.. but very slight. hmmm then the speculum... well that HURT.. pinching pain.. and a lot of spasm.. even when it wasnt openend all the way it was the larger speculum...im not used to the large ones and this friggin hurts... ugh.. I was in a flare already this sux. The Dr is quick and is saying that the pinching is probably coming from the outside. while on the table i silently disagreed as in the past the outside burn wouldnt have allowed the speculum.. this was deeper inside.. bladder??? muscles.. I dunno. Ok speculum out.. that didnt hurt coming out.. this is new to me.. wow. So, that also tells me it was deaper inside the pain ok, now for the digital exam.. ugh.. this hurts .. too fast movments with muscles in spasm... arghhhh. time to get dressed.. that was quick.. time for me to get dressed and go next door to talk. No infection... im doing much better than the last visit two years ago. In fact the Dr joked with the student about how he did not pay for me to come into the office that day bc earlier they were discussing how PT helps patients.. and there i was probably one of the PT success stories or atleast stories where the muscled refer burning. anyway... he was concered about me still having so much pain with the speculum and again defended his opinion it was coming from the outside.. i still disagree. he suggests cream... this time gabapentin, baclo, amnatriptalyne.. i remark how the last cream caused itching and burning he felt it was the base. I disagree. So, it was time to shell out the cash for the parking and drive home down the bumpy streets with muscles in spasm... but the V wasnt burning. i could live.. just wish the spasm wasnt so bad. as i type this i am in spasm with some V burn on the left. The spots that were tender were 4 and 8. which coincide with where my muscles have been tight. Overall i see this as progress .. i am still flaring and was made temporarly worse by the exam... but i will get out of the flare in time. So, i would say the purple day turned out not so bad after all.

PC flaaaaaaaaaaaaaaaaaaare

No PC does no mean politically correct. Or personal computer.. or anything simplistic as that. PC is the pubacoxygeous muscle. I know i spelled it wrong.. maybe when Im not in so much pain I will correct it. Im worn im drained.. i have too much burning to be defeated. Im pretty sure i know what triggered this.. the thombrosed hemmroid. It sux no other words for it. there i was doing so well... walking ready to step it up a notch and get to the gym per the PT to use the treadmill. Simple I thought. BECAUSE I yes ME had forgotten all about this muscle. I had forgotten because for many blissful months it was not a factor and IF it was it was so beyond minor. An obtrator ocassionally towards the outside... but nothing like this. Honestly I have not been feeling OK for about a month now if not longer. I had to goto PT two weeks earlier... I may have to see the osteo this week after just having PT. I dont get how this is not calming down... and it feels like i just had PT yesterday as if the muscle just wont calm. It hurts to stand... which those who read this blog know standing was all i could do... well now it appears my body does not like that... feels like a lot of pressure and tugging. yes my time of the month is due in a few days... could be why i feel even worse. but i need to get things done... and this is making it so difficult.. The BuRN intense like sunburn.. in the left side of the V... from a person not at all used to this burn in years!!! for me after years of getting V injections and crotch creams.... it was discovered this PC causes me the burning. so i naturally freak when it gets like this. Once a few summers ago it was triggered and did not calm down for MONTHS. I try to not let my mind go there but it is so difficult. When i find myself going there i start some deep breathing... because when I cry it kills even more. ugh and grrr. I know if i made it there... my body knows the way back... and i know i have been way worse... sooo.. here is hoping that the flare ends when the period starts... and i can get back to baseline. and please PC can u stom engaging already... I promise im working on building some muscles so you dont have to work so hard. thanx. it is so odd because the SIJD has not been that flared up... at all. in the past the PC is flared from sitting too much, a fissure.. constipation.. carrying heavy items.. praying very hard and doing my best to relax.

the waiting room

i drove to the appointment both anxious and hopeful. i rode the elevator with a nice couple headed to the same floor as me...upon arriving i entered a waiting room full of people ...this is not something u want when u are dealing with what they eXpect is a thombrosed hemmroid.....so there we all sat...well i stood...and as time goes on u make small talk...at one point we were ready to order in a pizza....one by one we get called back. im next and im super anxious....i just want the pain to stop...for my mind to be at ease for my faith to be restored in the medical community....it is my turn...that time sure went fast. ahhh im back with the kind dr..i meet in his office first...then off to the exam.....not sure why i was so axcious..i mean my crotch has been looked at by many...ive had this exam before when treating the fissure.....im inverted and...it hurts the exam...but i breathe an relax and realize ive felt way worse....i mean common this girl has had vulva injections!....so he confirms a thombrosed hemmroid .rx cream and pain med...and im on my way. upon exiting i see a wonderful display of xmas lights and i stand aand relax and take it all in. so good news no fissure bad news this will take time. it has been a rough few weeks.

If only healthy people knew what this was like-- really knew what it was like

It is tough to juggle things outside my health realm right now..... and it doesnt take much to stress me out ... some people dont understand this.   I'm going thru a lot right now.... and just need a break... but cant take one ... because i have so much to figure out.

I cant let others bring me down- because i have a lot to figure out regarding my health.

Im in somewhat of an SIJD flareup.... there is a storm coming and im not sure if i should cancel PT.. since i will see the osteo next week.. or not.


im sick of these decisions...  sick of the added stresses.   its also a hormonal flare up.. i tend to do better during my period.  and now all is burning.  

i cant wait for my bath... mostly i just wish i would stop attracting drama... i need to focus on me and my health i cannot allow anything to get in the way of that.

i dont care if im alone anymore... i just need to figure some crap out.  

sure it would be great to go back in time , but i cant so i must try to focus on me now... and eventually hope things work themselves out...  in time.    I have gone a long time without PT.... the osteo flared me but then helped.....