...trying to find my way...

**i posted this in my introduce myself, not realizing it couldn't get responses.... i hope its not an issue re-posting here, i'm just looking for anyone who can relate or just an ear to listen / eyes to read. i'm just feeling so lost and sad right now**

-sighs-
feeling a little overwhelmed and quite a bit depressed.
i have been silently lurking the boards for a couple weeks.
and managed to make one pathetic post so far. :/
i'm not sure where to start or what to say.
my apologies in advance for this may be a little lengthy.
i will start backwards and work to present day.

back in '03 i was relatively healthy, 23 yrs old and a great career.
in May i started to develop exacerbated gastrointestinal issues.
i went for a colonoscopy and went from an IBS diagnosis, to ulcerative colitis.
by end of june early july i was barely passing bowel movements
and suffering from extreme exhaustion. i was reaching the 3 wk mark with no BM.
my dr gave me suppositories and special diet to follow.
2 days later i was found on the bathroom floor at work and rushed to the hospital.
i was diagnosed with an impacted colon and flushed out.
they wanted to keep me over the weekend for observation.
the weekend rotation drs came in on sat. and asked me if i had ever been tested for mono.
even though i had no enlarged spleen and no strep they still asked to run the tests.
i came back positive with very high numbers in my labs.
along with alarmingly low white blood count.
they sit me down and ask me to sign a consent form to have an H.I.V. test done.
my heart sank. i have no family in state, i feel like crap, and scared out of my mind.
they proceed to run the test 3 times each coming back negative.
but unable to figure out why my white count is continuing to drop.
my mom booked a flight to come in the following tuesday to help take care of me.
monday i inform the drs that i have numbness and weakness from my bellybutton down.
they try to tell me this is normal from laying down so much. but i told them nightly i walk laps around the nurses station. they agree to do an MRI and CAT scan.
but find nothing and send me home. the next day we pick my mom up.
i can barely run to her (i do a crazy little run greet to her when she flies in).
she knew then, that something was very wrong, beyond mono.
2 days later the numbness and weakness has moved up to my chest and i'm starting to have a hard time breathing.
i call my gastro and tell him whats going on and he was shocked i was even released already.
he tells me to get to the hospital right away and he will meet me there.
by the time get there, the numbness is to my collar bones and patches in my face.
and im paralyzed in my legs.
by the time i get to a room, i am paralyzed from the collar bones down and can barely breath.
they treat me with I.V.I.G and tell me i have a rare form of mono that triggers the guilliane barre virus.
i was paralyzed for a week in ICU. and told there was a 90% chance i would never walk again.
(that was not an option for me)
i was in a wheel chair for a year, had home PT, water PT and gradually moved from a wheelchair, to a walker, to a cane.

(fast fwd)
over the next few years i am diagnosed with:
systemic lupus
fibromyalgia
transverse myelitis
sjogrens
raynaud's phenomenon
osteopenia (my calcium is fine, but i'm vitamin D deficient)
bone marrow deficiency
neutropenia
leukopenia
anti-cardio phospho lipids (but do not suffer from blood clots)
tubal atrophy of the kidneys
hypo motility of the bladder (had to self caht for a long time)
hypo motility of the colon (can go 3+ weeks with no BM but alternate with colitis)

ugh the list can go on….
fast fwd. again to current,
i have been dealing with female issues ever since i started my period.
i always had a heavy flow, clots, extreme pain, lengthy cycles.
i would also suffer chronic cervicitis, misc. pelvic infections, and eventually 3 pregnancy losses. (later finding out due to the anti cardio phospho lipids)
'04 was my most major loss (almost 6 month along)
the other 2 pregnancies were within the first month.
(2 yrs ago i just started my period again after a 6 year stop)

this past oct. i was diagnosed with a yeast infection that with back to back treatments would not go away. (eventually becoming painful)
my periods were now coming 3-4 times a month 5-9 days at a time, heavy clots,
and stay in bed pain (despite pain mgmt i'm on).
my gyno urges me to have a sono done and i was informed of fibroid clusters on my uterus.
after quite sometime consulting my heart, mind and body i knew that a hyst. would be in my best interest.
with having systemic lupus, 3 miscarriages already, and the anti cardio lipids
(which put you at high risk with pregnancy) i knew the best decision for me was a hyst.

my L.A.V.H with robotic assist was scheduled jan. 28th.
i was cleared by my oncologist with 5 day blood thinner injections,
he requested i stay in the hospital 2-3 days for observation (seeing as my white count was 2.3 day of surgery)

it has been nothing but a nightmare since the evening of the 29th.
the hospital was advised not to remove the cath too soon because of past complications.
but it was removed anyway, and after 7 hours with no urination i was allowed to be given an in-n-out cath.
they received only blood return so they consulted the dr. and came back with a bigger gauge foley cath. this time.
i passed over 1000cc and was told i was no longer going to be given my blood thinners. (the dr felt it was not necessary, and went against my oncologists wishes)
i immediately placed a call to my oncologist and the 2 drs. consulted and agreed to put me back on them.
instead of sending me home, they offered to keep me another night.
but after all the drama and hassle i just wanted to go home.
never dreaming the nightmare that was laying ahead.
i was released by 5pm, drove to the pharmacy to get my 3 day remaining injections, only to find out it was going to cost MORE, because the dr canceled them , then had them re-approved. causing a problem with my ins.
(so i couldnt fill them do to finances)
come midnight thirty i was being rushed back to a ER closer to home.
i could not void even with the cath.
all the hospital would do for me was flush the line and send me home. -sighs-
i later begin to learn that i can only seem to fully void when laying down.
if i'm sitting down or standing i get a heavy feeling in my bladder.

2 days later i return back to my dr and he is in agreement with me to not remove the cath.
(if i can't void WITH it how will i void withOUT it)?
sadly his solution was to return the next day and have him remove it in the morning.
should i have any issues urinating just return to a hospital and let them re-cath me.
(my jaw dropped, that just did NOT seem like a good solution).
so i said i would find a urologist and go from there.
3 calls later each office agreed it sounded urgent but couldn't see me sooner then feb. 11th.
as we are driving home i crash hard. i called another hospital near me and basically got the run around that if i came in, i would be considered a high risk.
and that i needed to go back to the original hospital that did the surgery.
(which is about 30-40 mins from me).
i called them and they inform me that i need to come into the ER but they cant guarantee me a urologist or internist will see me.
(it is all up to the ER dr. and what they feel is needed).
AND that they placed a call to my gyno he said he was seeing me in the morning to remove the cath. (which was false, because we agreed i was going to see a urologist and see him next, on my post-op follow-up)

so i kept myself as comfortable as possible and toughed it through the night.
i recalled one of the urologist offices last friday and they said they could see me at 3:30.
the dr was concerned with being taken of the cath. too soon that it hyper-extended my bladder. (possibly causing nerve damage)
so i was instructed to take a med for 5 days to help my bladder/urethra contract.
take lax to get my bowels moving (to make sure that wasn't hindering my bladder)
-i opted for lots of prune juice for 2 days instead-
i returned back to the urologist wednesday and had the cath. removed.
i was unable to void on my own. resulting in the cath. re-inserted.
not only do they decide to go from a 19 gauge to 22 gauge cath.
it was not inserted all the way before the balloon was inflated.
i screamed bloody murder and yelled repeatedly for the nurse to stop.
i then felt a sudden pop (when the balloon popped backwards into my bladder)
the pain was un-merciful! im now crying feeling like i have razors in my urethra, and voiding blood.
only to have the nurse shrug it off that she knows how to cath., the pain will go away, and just use some bacitracin.
(again my jaw on the floor amazed with how poorly i feel like im being treated).

then to add insult to injury as i'm leaving the office they inform me that i'm on the waiting list for the neuro-urology office testing.
i have to go for a urodynamic test with video. (the dr is concerned that i have nerve damage). which has been scheduled for the 19th.
my gyno is hit or miss returning my calls and making me feel like i'm on the back burner.

so here i am, another trouble sleeping night.
in terrible pain, bleeding in the cath. still, vaginal bleeding w. clots, second night now throwing up blood, running 99 - 100 fever alternating terrible night sweats and hot flashes. my whole entire mid section hurts and i want to rip my cath. out i'm so uncomfortable. i'm scared out of my mind, terribly depressed, feel like i'm a huge burden with the people i'm living with….i just feel so lonely -cries-

Wow! I do not know what to say, other than I am so sorry you are dealing with all of this and for the amount of time you have had to endure. I hope you find a way to get some relief and solutions soon.

Is there any way you could find a really good primary care physician that you can trust to guide you through all the different specialists? Or perhaps a medical advocate? It seems like you are going to need more help than what you are physically going to be able to provide.

((((HUGS)))) to you. I wish there was something I could do to help.

Another wow. Makes my own problems seem so insignificant.

I wish I could be there to get my other half to yell at some people for you (I'm not allowed right now).

I know it's not much but all I can send you is some love and hope it makes you feel that bit less alone. *huge hugs* xxx

I am so sorry to hear you have to go through this. I wish there was something I could do to help, some wise words of wisdom, but all I can come up with is Im hear to listen,and help support you in what way I can.. It sems so insignificant to what you are facing, but please know me and all the sisters are here for you to help you through your journey. My thoughts and prayers are with you.

I will pray that you find the right people, doctors, etc to help you. I am so sorry you are dealing with this. I agree that you need someone that can get things done with the doctors. As the saying goes, the squeaky wheel gets the grease. All this stress is not going to help you. Big hugs being sent your way. Please keep us posted!