angela medical update #5

here we go. i have been writing this on and off for the last week-ish when i feel up to it. so, please bear with me if it's drawn out. i think the last thing you all were told was that i didnt have enough details to talk or write about what was / is going on with my job / medical leave status. is that right? well, that is where i will pick up my story from. if after you read this you have questions or i missed something, just ask.

i would like to preface this with the fact that i have been with my current employer for 6 years and 4 months.

i call my medical leave reps all the time. fax and email them all the information they might need... and prolly even some they dont. i just want to make sure they have everything they need to keep my medical leave current and approved, and i know that sometimes drs get too busy to complete all your paperwork. so i try to stay on top of things. seems like i am always getting medical leave reps' voicemails.

i knew i would be cutting it close with my approved short term medical leave (stml) payroll exhausting just before i could file for extended medical leave. finally, one of my reps called me on thursday september 24th and said that i have approved stml until monday october 26th. and she sent me a letter (so i have it in writing). as of october 26th i would no longer have job protection under stml benefit. however, i am not eligible to file for the extended disability plan (edp) until november 12th. i still dont quite understand this detail. so, i was going to have to talk with my employer about allowing me off for the 3 week gap without losing my job. also, my stml payroll would be exhausted, so i would have 3 weeks without pay. now, i am not guaranteed to be approved for the extended disability plan. i am "eligible" to "apply" for it on november 12th. this is ridiculous to me.

so, thursday sept 24th i find out that my stml expires oct 26th and i need to talk with my employer asap about covering the 3 week gap without losing my job.

well, friday september 25th at 630p i get a phone call. literally, as i am walking out the door with my stepdad to go to his birthday dinner. we wait to leave since i am on the phone. one of my medical leave reps says that her office does random case audits and my case happened to be audited. they found "discrepancies and miscalculations regarding my time and payroll". so, i ask her what she is talking about. she said that they forgot to add in the time from when i was off previously for my broken foot, and that that would lessen my remaining time available. she went on to say that with the previous medical leave factored in, my medical leave benefit actually exhausted on september 15th, 10 days prior to this phone call. WHAT?! how did she not have this information when i talked with her just yesterday?! she had to know the case was under audit! i was hot! but i tried to keep my cool. i asked her "what does this mean?" she said, as of sept 15th my job protection and payroll are gone. they were already late paying me my medical payroll for a couple of weeks, so she said that now i just wouldnt get paid the retro-pay because it's not there. she said, "one good thing though, you are able to keep your medical insurance for 6 months." i said, "whoa whoa whoa wait... are you telling me i dont have a job?!" she said, "well, with the new dates, you should have returned to work september 16th. so now you will have 10 days unexcused." but this is not my fault! 1) i am not able to return to work right now, let alone 10 days ago. 2) even if i was able to return to work now, i dont have a time machine, how the fuck am i suppose to return to work in the past?! what the fuck?! these people are driving me insane! it's bad enough what i am going through medically, let alone dealing with all of their bullshit! (please keep in mind that i have 3 medical leave reps, one in texas, illinois, and ohio. how stupid. and each of them seems to pawn things off to the other.) rep says, "can you go back to work on monday?" ... uuummm... NO!!! if i could go back to work i would! i am not in pain and broke by choice! c'mon! so i ask her what am i suppose to do? she tells me that i will need to speak with my human resources and supervisor right away to ask them if they will allow me to keep my job yet stay on medical leave. she also recommends i call the clara abbott foundation thru my employer as ask about employee financial assistance. i ask, what about my remaining vacation time? (keep in mind this is on friday the 25th) -- she tells me, "well, with your 52 hours of remaining vacation time factored in, that would bring you to half a day yesterday, thursday." so i would still be 1.5 days in the hole. how is this happening?!

i write down every detail as she is saying it so that i can quote back to what she told me. which is also why i save voicemails and prefer to get emails and letters. anywhom. we go on to my stepdad's birthday dinner and i dont mention it. it's his night. i dont want to bring it down. we had a really nice night with a few friends and family dinner. i think we all needed that.

over that weekend i was a wreck. i couldnt stop trying to figure how-the-hell-is-this-going-to-work-out in my head. it was a mess. i was a mess. i've been having bad dreams and sleep issues for quite some time now... but since this weekend happened, i have had a completely miserable time sleeping, and when i do sleep, i am having ferocious nightmares. nightmares so bad i wake up sweating and crying and sometimes screaming. all this turmoil is tearing me apart inside and out. how am i suppose to heal with all of this?

monday september 28th i went to my employer. didnt get to talk with my supervisor, but i did talk with hr and employee nurse. i told them my story and begged to keep my job. they took notes and sent me on my way. hr called me later in the day and said that yes, i have exhausted everything. i have used all of my sick time, vacation, family medical leave and short term medical leave. my next option is extended disability plan, but for some long drawn out reason, i cant apply for that until november 12th. so, all said and done, i have no job protection as of 1/2 a day thursday september 24th. hr said that they will allow me to be on "approved medical leave without pay". i am allowed to keep my medical insurance for 6 months, but since i have no job protection they are back-filling my job. so, when i am released to return to work full-time with no restrictions (this is their requirement), i will keep my 6.5 years seniority and bid rights, but cannot go back to the job i had. i was told "you may apply for, and will be considered for, other positions for which you may be qualified." i will have to apply online and interview for each job. thing is, right now they have no open jobs posted! and the job i am losing is the job i have been wanting for a while now. job, hours, money, people... i went on medical leave just 2 weeks before i was suppose to start this new job i was awarded. i am very bummed about this. but what can i do?

so, now i am on "approved medical leave without pay" all the while my regular bills and dr bills are adding up. as suggested, i called the clara abbott foundation to ask for financial assistance. i never ask for help. i have always been able to take care of myself and everyone else. this is miserable for me. well, clara abbott foundation said they cannot help me because i am not currently on payroll. they said that you must be on payroll to receive assistance. i said, "i'm sure you get this a lot, and i am not trying to be a bitch about it, but why would you only help me if i AM getting paid? why wont you help me now that i have nothing?" she said the foundation has to draw the line somewhere and that anyone could go on a leave without pay and just soak up the free money. so they will only help people that are on payroll but struggling with bills. so, if i had called them 5 months ago when this all started, they would have given me money until my payroll benefit was gone. stupid stupid stupid. but i didnt know that 5 months ago. no one told me until after the fact. kinda like the whole thing with banks charging so much for overdrafts. you dont have enough money so we're going to charge you for being broke. the rich get richer, the poor get poorer.

now i am filling out and filing all kinds of paperwork on my own behalf for extensions on my billing due dates, as well as all of my medical leave stuff. multiple offices in the same companies (including my employers medical leave) keep sending me pages and pages of info to be filled out by me and my doctors. they are all the same company... why cant they just share the info? to top if off, each of my dr offices charges $10-20 each time i have to have paperwork filled out for medical leave. what the fuck is a person suppose to do?! a friend of mine suggested i get a temporary power-of-attorney, but i dont have anyone that knows enough about all my medical stuff to be of good use in that capacity. this, i suppose, is partially fault of being single and detached from everyone for such a period of time.

just as i think it cant get worse, i end up in the er, again. as many of you know i've been having serious insomnia. well, last tuesday i didnt get to bed until about 4a wednesday morning. i was up and down a couple of times. then i finally gave up on attempting any more sleep and got up about noon. went to the bathroom. fed my doggies. and while my doggies were eating, as i walked from the kitchen to the living room, i doubled over in pain. crazy effin abdominal pain. thought i was going to be sick, so i got to the bathroom as fast as i could. yelled for my roommie to let the dogs out when they were done eating. stayed in the bathroom for a few minutes and realized i wasnt getting bathroom sick, but my pains were getting worse. i told my roommie something was seriously wrong and i havent felt this kind of pain since before my partial hysterectomy in august 2006. (partial hysterectomy = only my uterus removed) i called my primary care dr but she was booked the rest of the week. they advised me to go to the immediate care center. so i did. my roommie drove me there. it's just over an hour away. i was there about 3 hours and all they did was urinalysis and bloodwork. dr finally strolls in about 315p says, "well, we dont do radiology after 3p, so all i can suggest is you check back in 5-7 days or i can send you to the er of your choice." what a fucking idiot! please keep in mind that this entire time i am still in pain! so, we transfer to the er that i prolly should have just went to in the first place. another waiting room. they finally get me in to a curtained room. 3 different people come in, literally, one right after the other (passing at the curtain) and ask me the exact same questions! gaaa! finally they did a quick over the clothes exam. eventually they decide to do a pelvic exam. *** warning, slight detail personal medical talk here *** they take me to a closed room (not a curtain room) for this. dr says he doesnt think it's anything serious, all my workups came back normal, but he is not sure what it is just yet. he is going to try to "manually elicit pain" via the pelvic exam... and if "by chance" he does, then they will order ultrasounds. but said he honestly didnt think he would find anything. then we got in the private exam room. i wont go into graphic detail, but lets just say that yes he was able to "manually elicit pain" and i about came off the table. i yelled, and tears were flooding when he did. he is a resident doctor and i felt sooo bad for him as he was feeling bad for me. and so, now for the ultrasound order. they didnt have time for me to drink 42 ounces of fluid, so they decided to fill my bladder with a catheter. i had never had a cath before, and i hope to all eternity to never have one again. especially painful while already having abdominal / pelvic pain. skip to ultrasound. radiologist was super nice to me. she talked to me a lot and showed me the screen as she was looking around. i am sure she was trying to keep my mind off the pain, but what she had to talk about wasnt much better. she pointed out to me all of the cysts on my ovaries. yay. she had to do an external and an internal ultrasound. oh joy. she took a bunch of photos and they sent me back to my "room". removed the cath (thank heaven) and we (me, my ma, and my roommie) waited for the dr to return with results. they said i have multiple small cysts on my right ovary. my left ovary has a cyst the same size as my ovary should be by itself. so, my left ovary is 3.3cm and the cyst on it is 3.1cm. they believe my sudden onset pain was a cyst rupturing. they think it had also been on my left ovary. they advised pain meds, rest, and return to see my hysterectomy dr asap.
so, the next day, i called my hysterectomy dr. they tell me she is on medical leave but i can come in right away and see the dr that is filling in for her. so i did. fill-in hysterectomy dr said that this current ruptured cyst would take about 4-7 days for fluids to absorb back in to my system, so expect pain to hang out for a while until that clears up. she confirmed that i have multiple small cysts on my right ovary, that she believed to be "non-threatening" meaning they are too small to rupture and she believes they could just disintegrate themselves. however, she said the large cyst on my left ovary is most likely too large to go away on it's own. she asked that i come back in about 2 months for another ultrasound, since there is "nothing emergant to be done". she said that i should expect for the large left ovarian cyst to rupture before then. she said if it does not rupture, and it grows, then they will discuss removing my left ovary. she said if i remove only my left ovary and keep my right ovary and cervix, i will not need hormone treatments. so, now i'm at the mercy of the lesser of two evils. either it ruptures and i am in agony again waiting for the whole thing to repeat itself... or it doesnt rupture, it grows, and they have to remove my left ovary. like i said, the lesser of two evils.

so, i no longer have an income, but i am still "attached" to my employer and on "approved medical leave without pay". i am still undergoing multiple therapies for my head / neck / shoulder / arm / hand things they have not yet diagnosed and the pain has not subsided. i am still in some slight pain / aching from the ovarian cyst rupture last week. but i think that is fading well. i am still having serious sleep issues. i have no idea when i will be able to return to work. my sister and her kids are moving out of my house this week, so i am going to try to sell that asap so i dont have a house i cant afford at this point... and i dont want anywhere near foreclosure. i have never had a credit card, my only major debts right now are medical... i'm just trying to keep my head above water. ya know?
vets said they are able to do KaiYin's radiation / chemo in fort wayne, rather than perdue or michigan state. that is easier for me. it'll take about 3 months. once a week for four weeks. then every other week for eight weeks. total should be about $2500. of course, she is still recovering from surgery, and i am broker than broke, so we cant start this right now anyway.

tomorrow (thursday) i have my 2nd round of trigger point injections. 1st round they gave me 2 in my skull (yes, literally, in the back of my head) and 7 in my shoulder / neck area. it is a lidocaine / steroid cocktail. friday if i am feeling up to it (since injections knock me out) i might have occupational therapy. next week i have my usual occupational therapies and 2nd round of lidocaine iv infusion. that one sucked as well. the iv procedure is less painful than the direct injections, but the after-effects made me pretty sick. each of these will be done once ever 4 weeks and they said it could take 4-5 times before i notice relief. glorious, right? but what else can i do? i am posting my schedule in the right hand column ------>>> if you want to keep up with me. or feel free to email me and i will get back with you when i am feeling up to it.

fyi... like i said, i currently have no income... so i'm having to prioritize... there is a slight possibility i might have to temporarily disconnect my phone for a bit. so, i'll keep you posted as i know more, but if you text or call me and i dont get back to you for a bit, it might be because my phone is off. i'll try to give a heads up if that is going to happen. so, email / twitter / facebook whatever is the best way to get me.

thanks to everyone for you continued love and support.
i love you all oodles and bunches!
be well.
~angela

*** adding this 1054p, same night ***
i really feel like some people think i am faking this. (mostly the behind-the-scenes medical leave and such people) i have been off work and on medical leave for about 23 weeks. in this time, i have had over 30 dr appointments (i stopped counting after 30), i have seen 18 doctors, and been given 16 prescriptions. really, someone could possibly think i am faking this?! who would go to this extreme for time off? it's not like i'm on vacation here. i am in pain, broke, and stranded at my house unless someone drives me to a dr appointment or grocery store, etc. i just wanted to vent that. so, there it is.

angela medical update after 1st lidocaine iv infusion

first off, thank you to everyone for your well wishes, thoughts, prayers, meditations, and such while i have been going through this miserable medical mystery. i appreciate your support more than i ever get the chance to tell you. thank you.

yesterday was my first round with the lidocaine iv infusion. i think, initially, i was more worried about the procedure than i was about the after-effects. the medical office requires that you have a driver to take you home after the procedure. my sister took me for this appointment. thanks sis, i love you! i got checked in at the front desk and then a nurse came and got me. she took me to this little room with an over-sized medical recliner, a heart monitor, iv stand, and a waiting chair. she had me sign some papers and she explained to me how it works. she was super nice and kinda relaxed me when we started talking about our pets. anywhom, she hooked me up to the heart monitor and explained that once she got the infusion going she would start at the lowest setting and gradually increase the levels depending on how i was doing with it. she got my iv started (she was good! i barely felt a thing!) and set me on the first level. she said that basically i would start to feel like i had one tooo many margaritas. (which is why you need a driver) she sat and talked with me for a few more minutes and since i was doing fine she kicked it up a notch and left me for a bit. the receptionist came back and wanted to know if my sister could sit with me. i said yes, of course. Heather came back and said that she was going to walk around the mall but it was closed that early in the morning. so she sat with me and we chatted. i could tell i was feeling more and more drunk and i kinda had to concentrate on not laughing most of the time. nurse kept checking on me and kicking it up to the next notch. i was really having to focus on talking with Heather... but it was nice to spend some time with her. i love my sister very very much.

eventually the nurse said "now you're at full blast!" yay! i could certainly tell! it was so weird. i mean, i've been drunk before, but i havent drank in a couple of years and just sitting there with the drunk feeling coming over me was odd. she left me at full blast for a while then came in to disconnect me. she said i did well and that the front desk would set me up with another infusion 4 weeks from now. earlier, the nurse had explained to me that the people with the best results after this treatment usually are the ones that go home and do nothing but rest. she said no mowing the lawn or doing laundry or anything like that. she also said that they need me to keep a journal of how i feel from now until my next infusion. she said that i wont feel better right away. she said it will be slowly noticed things... like... i'll notice while standing in line at the bank that it doesnt hurt so much to stand there, or it doesnt take as much out of me to vacuum, or i can wash my hair, tie my shoes, or hold the phone to my ear for longer without so much pain in my hand and arm... and a list of other examples. she said they need me to pay attention to all those sorts of things and journal them.

i checked out and they set me up for another infusion on thursday october 15th. we got out of there and sis took me home. my roommie, Michael, had stayed home to watch my doggies for me. KaiYin specifically since she is only a few days out of her 6th cancer surgery. i got home and c r a s h e d! i didnt just feel drunk at that point... i felt hungover. i felt miserable. my entire body was angry. i fell over on the couch and was attempting to explain to my roommie how it went and i think i just passed out. he let me sleep. i woke up a few hours later, still "hungover". i asked Michael if he could maybe fix some dinner while i showered. he did. my shower wasnt really as relieving as i had hoped. but dinner was yummy! we ate and watched a movie, then i cuddled my doggies on my couch while Michael played online and read his book on his couch. i guess i must have passed out again because i didnt wake until this morning. suppose i needed it though.

and how lovely that i get to wake to dealing with medical bill collectors. really?! the bills they are calling me about are from appointments on 05.11.09 and 06.11.09 ... may and june... it's only september! it's been like 3 months and i am s t i l l on medical leave for the same reason i was then and they are already threatening me with collections?! they say i have 15 days to pay a few thousand dollars IN FULL or they will send me to collections. really?! you people are ass holes. and i realize some people "are just doing their jobs" but you know what? you dont have to be condescending, heartless rocks during our conversation. when i worked for blue cross and blue shield in north carolina i actually got "talked to" by my team leader many times about the fact that i was "helping clients tooo much" (kinda like mr incredible when he was his secret identity bob parr during his day job at the insurance place in the movie "the incredibles"). the way i saw it was, if someone is calling their health insurance company then either they themselves or someone they love has been sick or injured. they are going through enough without having to deal with money and bills. so i always did all i could to help them. we had a $500 cap per client that we, as customer service specialists, could issue to clients without a signature from higher up. so, if i could help someone, even with only $500, i did. anywhom... my deal right now is (primarily) docs and i are still trying to figure out what the hell is going on with me and why am i in sooo much pain! yes i realize i owe medical people money, but i'm on medical leave only getting medical pay and I AM paying my copays and percentage insurance at every visit and paying for my prescriptions and gas money driving back and forth ( i'm still not driving but i give gas money to the people that drive me ) keep in mind that i still have to eat and pay rent/mortgage and such... no, i cant pay your thousands of dollars er bills in the next 15 days. sorry. what they fuck do they expect?! gaaa!

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exhale. sorry about that, folks. this stuff just drives me insane. i am 1,000% grateful that i have a job with benefits and medical leave and medical pay and family and friends that help me when i need it... i am honestly grateful. but i am also worried that docs are still trying to figure out what is wrong and how to fix it and in the meantime my medical leave is almost exhausted but i am still not able to work and i worry about losing my good job and all it's benefits ... oh and i have suffered from depression most of my life, so that's a huge help throughout this ordeal. i am not looking for sympathy or pity or anything like that... sometimes it just helps to vent. even if no one ever reads what i write, it does help to get it out. the only thing about writing that does not help is the fact that my hand hates me for all the typing / writing so i have to do it in spurts.

okay... i have been writing this in between medical bill phone calls. these people are driving me insane. i think i have made/taken my last medical phone call for today. * i need to fax some stuff which means i have to get out of my jammies and out of the house and be seen in public. * blargh. additionally, my cell phone has been acting up. it powers off just whenever it feels like it. i havent been able to notice a pattern. battery is fully charged. anywhom, so i need to get that in to be diagnosed. yay, dealing with more customer service people. phooey. so, if you have sent me texts or called without answer and left voicemails, i am sorry. half the time i pick up my phone and notice it has powered off so i dont know what calls i might be missing that dont leave messages. i did the software upgrade on it this morning, but it doesnt seem to be helping.

*** nice, roommie just got home and said that while he is out running his errands he will fax my junk for me! yay! and i am not sooo concerned about my phone at this moment, so i suppose i will stay in and continue to rest today. that is a relief. ***

this is the current version (remainder) of my medical schedule as i know it to be, right now:

wednesday september 16th i see the pain psychologist for about an hour, then after him i see the occupational therapist who should be giving me a TENS unit i will take home with me.

thursday september 17th i see the pain doc for an "occipital nerve" block injection ( direct injection to the nerve in the lower back right side of my noggin ) as well as "trigger point injections" for the pain spots. yay.

tuesday september 29th i again see the pain psychologist

thursday october 15th lidocaine iv infusion #2

they told me that each time i go in for one specific treatment they will then set up my next appointment for the same treatment to be repeated. so i'll keep you posted as more appointments are made. hopefully they and i know more soon... the not knowing is sometimes the hardest part.

thanks again to all of you for your continued support and understanding.
i love you all oodles and bunches.
be well.
~angela