Friday, September 14, 2018
i'm not sure what is now going on with me..... sunday the roof leaked yet again and i helped my dad clear out all my contents, i didn't feel all that bad...as always my body prefers moving around..and it was good to be up and out of the bed so the next day i went for a walk to mail a letter..and i didn't feel all that bad but did notice a lot of muscle pulling from bone pain in my calves. i als was taking two new supplements and too hyddoxizine so the day after i didn't feel all that bad, i figured the hysdoxzind calmed down my CNS .. flash dad to today and i feel so beyond bad, my eyes don't focus, i'm snapping and miserable....i walked to fast to go get something in another room and that triggered the burning pain all over again and it had calmed down i'm in ovulation cod yhe gidst time in months i have ovulation as used to, only thing is my vulva opening doesn't flare up like in the past i feel like i have a totally different body anymore ....it takes days to recover from walking and the burn def was triggered by the fast walking inside. if i wake up early enough i'm going to call the chiro office, i haven't seen him in close to three years... but if this is some sort of compensation when walking etc he will find it feeling this sick is scary ..i can deal with pain but this other stuff not so much...it's like i'm hovering just outside of sleeping but i'm awake .... seems neuro i stopped both supplements to give this time to sort itself out i also have been having trouble sleeping and woke up with the jaw pain again... laying in bed kills my spine i've been reading a lot of floxing blogs and it seems that is part of this as most started after cipro and levaquin ...levQuind is when i couldn't walk or get out of bed... it's 2am and i can't lay down just yet as i'm giving the spine a break as i was laying most of the nite i'm just praying this passes
Monday, September 3, 2018
i'm still mentally digesting the appointment. he spent a long time with me, which is a good thing. overall he is a doctor i can work well with ... after hearing my history over the last year including the last 13 years with this stuff ..here is the brief summary he feels it could be lichen planus , he examined my mouth and saw red gums and what he said was a canker sore ( i thought i burned the lip on food) try a new steroid ointment ...more money ...ughhh if it burns like the others did stop...ok he has a plan, perfect 2) pudendal nerve maybe entrapped he wants an MRN and nerve block eventually or it could be just a new presentation of my vulvodynia. he like all the doctors feels my pelvic muscles are tight ..although i did not experience pain until he was deeper in towards the back...and mostly out of past fear i was clenching he saw my pelivis was off and i had tailbone pain (both my pt found at my session) however my pt would not do internal work...this time saying last few times there wasn't much to work on....i'm so over it all... the dr even suggested i get a 2nd opinion i just don't know anymore as this really feels like a uti but not ic ....he feels that because the tissue is inflamed close to the urethra it's acting like a uti....i just dunno. i'm still having constiptation issues...heavy bulky stools now so i started probiotics again and hope i don't get an overgrowth of the good bacteria as no dr will treat that let alone use a microscope. before i look for a pt i'm going back to my chiro ... so that's the brief summary mentally i've had enough
Monday, August 20, 2018
so my gi tract, rectum or whatever did it's thing again last nite...holding on for dear life, and no matter how much laxatives i took, it didn't matter...btw they seem to flare my bladder and after peeing at 3am i was awake burning with pressure front to back. this morning things were more relaxed and the grip not so bad,but the damage is done now again...it set offeverything all over again so tonite i went and bought higher fiber foods, despite trying this briefly...i'm going to try it again. i'm at my wits end while out tonite, i sat in my car observing how easily people moved about...how they took the movements for granted...the way an older man used one had to lift his trunk etc then there was the guy i bumped into last spring...he didn't see me but i saw him...i'm worse off now then ever with my health ... i'm leaning towards hoping back on antibiotics again ...nothing else seems to be working liquid diets baby food i'm frustrated ...i just had a few decent days and now back to this...
Thursday, August 16, 2018
today was another session, and the PT was happy with my thoracic spine progress. if i can do anything it is the ability to get the tspine back to where it needs to be....it's aggressive posture retraining, no laying down in bed despite the crotch pain...it's using tripods for the ipod and sitting despite the crotch pain my favorite part of the session was when she pulled out the cold laser...ironically a few days ago a family member mentioned ultra sound... i have been intrigued by cold laser from my favorite inspirational IG guru ..he has used it many times. i think i impressed my PT...i find it helps to be able to speak the same language as the PT at times...it doesn't mean i know more than her, just that i enjoy learning about the body so we have a plan again...which is working on the outside pelvic muscles until maybe a dr can sort out the cause this may mean a trip to dr moldwin so after the session i was supposed to just go grab water, but i treated myself to a meal and two beers... certain beers actually improve my pain...getting out really helped my mental state and i met a new friend who is also on disability...he's into tech and looking for new friends... so who knows....atleast i could be open with him about my disability... i don't promote drinking, but for me it does relieve my pain...mostly beers on nitro, which are less carbonated so i have one stretch i will do t my pt did say i have been here before and it much like when she had to retrain me how to sit, stand etc mostly because my first PT really was not good and even injured my neck and is why it is what it is now so we held off on my pelvic floor pt for today and i see her in two weeks..i'm going to stay positive and do my best , that is all i can can do. as for seeing moldwin...i will have to wait until next year ...first i have to see if he takes insurance. i'm
Wednesday, August 8, 2018
i'm getting worn down..stressed to the max. the brief relief i had with the vulva burning was short lived...i forced myself out last nite instead of laying in bed making my neck worse ..it was an outside event so i walked around and stood listening to music ..and as i was going to leave i went to walk and the burn started all over again. i'm really wondering if this is somehow my bladder as i dark two small bottles of water. today , was more neck tightness and tonite i attempted a short walk and could barely walk...my pelvic are felt restricted like the internal muscles were keeping me from walking ...so i walked slow ... i refuse to let whatever this all is take walking away from me...it took me years to get to where i was and no way this is going to happen! i came home feeling rather depressed and went and laid on ice, which calmed down the pain and burning my period is starting to come early and of course the burn is worse .. i just sat in my kitchen eating baby food...peas and pumpkin... my stomach still is not right, so occasionally i will have baby food as a snack .. i don't think anyone will figure this out. my PT got back to me and said they think once a week sessions are best...i don't have that kind of money and i really think it's the tables in her new place that are affecting my neck. i don't see what once a week pt will do for the pelvic nothing seems to help that ....the burn is like an exposed nerve ending and i wonder if somehow this is how i now present with IC or is this part of the infection...like is the infection causing tight muscles and the pt briefly releases them and i feel better but then bam it's back again.... this wasn't supposed to go this way...i never thought i would have this again i need a dr that will check my hormones ..i've been suffering too long ...and i may try and get a round of doxy just to see if that helps this. with lyme anything is possible. i never have a good day...it's one big flare...
Tuesday, August 7, 2018
i woke up at 730am alrleady in pain... my mom stopped over and massages my neck and first rib area...it's frustrating that i paid the PT to do this last nite and she missed all this...my eye pain and neck is way worse ... it's a real struggle...i'm alternating, standing, sitting and laying down...i just took mores meds. today is national nite out and i may attempt to go...i haven't been out in ages and i'm in pain regardless ...i mean whether i'm standing in my kitchen here or out standing same thing ....nothing makes sense anymore. I have to call the chiro but just feel so defeated today ...and i know mercury is still retrograde but this is getting crazy. the sole of my right foot is killing ...there is just so many compensations to unravel and the PT once every three weeks is just not logical as at this rate It will take years . i'm thinking back trying to remember if my chiro ever got me out of neck pain...that was ages ago, and my traps were so tight back then , he did help with so much and even my PT was impressed, I have to admit i'm anxious as what if this fails too ...i feel like everyone has let me down ...what is going on. as i lay here i know i shouldn't be typing but u can't stand or sit at the moment my brain and body need a reset ...i need a clear path
Monday, August 6, 2018
i'm just getting home from the PT session..and my neck is worse, they said they couldn't release it and i was basically causing it by being too elevated while laying down. well ok, i'm causing my owne problems, but i'm laying down because after last session , i couldn't walk after the pelvic work and it wasn't a flare, it felt restricted my pelvic floor is more the fascia now not actual muscles and the left hip flexor the deep muscle is very tight in thenleft side, which is where all my pain has been in my crotch for a full year now i feel my PT is a bit lost about my crotch pain ...her one theory is the muscles are pinching the pudendal nerve...ok valid theory and i can respect it...but why do creams and touching the skin burn it? also last year i had horrible left side groin pain where it is now tight and the ER felt it was the five cc cyst they found...all i know is the levaquin seemed to really set a lot off, just two pills and i couldn't even lay in bed the pain was so bad...i had painacroos my kidneys ... i saw the PT back then though.. . so was this all missed ? i'm going to make an effort not to lay in my bed and stand and type and walk around more, and sit if i can .and hopefully that will help my neck ..if that's really why it's all tight ..i'm not totally convinced as i've layed like that for years now. all that being said I think i owe it to myself to consult my former chiropractor who does ART and other modalities , he isn't as expensive and can hopefully figure out why this hip flexor is so tight i just walked from one room to another and everything hurts now ..itsblike it tightens up and i need compression on it via the belt this seems to be getting somewhat worse and not better, plus i got the microgen results back and they showed a UTI it's been a lot to take in today