For those of you fortunate enough to have Love in your life...don't take it for granted. Love with all you have in each day is the last. Always leave your partner with loving words and a kiss...and greet each other the same way. Cuddle as you fall to sleep...even if you stray in the night. Set your alarm 5 minutes early so that you can cozy up before starting your day. Sit on the same side of the booth in restaurants. Hide love notes for the other to find. Smile at each other. Hold Hands. Hug. Kiss. Touch...even if it's just hands passing in the hall or your foot to his foot in the middle of the night as you reposition in your sleep. It's the little things that mean the most. Whisper goodnight, sweet dreams and kiss him even if he's already sleeping. For those of you fortunate enough to have Love in your life...don't take it for granted. ~Angela Pearl

19 December 2009

need some serious advice about a close friend

hey there punks and kittens~
i need some advice, help, something. a friend that is very very very dear to me, (we have been friends, literally, since before i can remember), found a lump in her armpit/breast area. she said it has been very painful. she does not have insurance, so she has been hesitant about going to the doctor. well, i adore this little lady and tried and tried to get her to just go, and we would figure out how to pay the doctor bills later. i didnt feel this was something to be taken lightly. a couple of weeks went by, and she still didnt go to the doctor. so, i called one of my doctors, pretended i was her, asked if they were taking mew patients, and made an appointment. i was able to get her to go to this appointment (prolly because i rode with her and wouldnt let her out of it). doctor said that there are actually 2 lumps. she said with the sick kids in the house, maybe she could have swollen lymph nodes. but that with the length of time they've been there, she should have a mammogram and possibly further testing. doctor said that the mammogram would be quite expensive without insurance, so she told her of a couple place that will do it based-on-income or free. well, it has been 45 days (since the dr appointment) and she has not been to any of these places for a mammogram AND she canceled her follow-up appointments with my doctor. i dont know what to do. she claims that one of the lumps seems to be gone. i just dont know what to do. when i was out this morning, i saw one of our mutual friends, and she asked about the results. i told her what is written above. i told her that if she could mention it or do anything to help me convince her, please help! do any of you have ANY thoughts or words of advice for me? i dont know if she is scared or what, but she has always been around to harp on me about getting myself healthy, so i dont understand why she wont take her own advice?! please please please if you have any ideas, i'll gladly hear them all! might i add, there has been a history of this sort of thing in her family. from what i understand, one of her cousins has had 4 lumps removed (over time) from the same area.
thanks so much for taking the time to read this and if you can offer any thoughts, advice, prayers... we would be so very grateful!
also, PLEASE, if you know who i am talking about, PLEASE DO NOT MENTION HER NAME IF YOU LEAVE A PUBLIC COMMENT! i am trying to respect her privacy... but if you see her in person, i wouldnt stop you if you mention that you care about her and she should get help. also, i will prolly print any comments i get, and show them to her. ah ha! intervention?! we'll see how far this goes.
thanks again!
much love!
be well!

06 December 2009

Pa's mother passed away... and a note from me

I know it has been a while since I last updated. A lot has been going on... I just havent had time to sit down and complete the post I started a couple of weeks ago. With that aside for now, I wanted to let you know that my Pa's mother passed away on Friday.

For those of you that dont know, Brian is my "stepdad". I call him "Pa" and have let the "stepdad" title only be used to differentiate him from my Dad/Biological father to those that dont know them. But I am happy to say that I was lucky enough to get 2 dads in my life!

On a sadder note...
Here is the obituary that Pa and his family wrote for his mother who passed away on Friday

If you would like to send a card, please let me know and I will private message you Brian's address. Or, if you would just like to send a quick email, I will print it and take it to him.

Also, I would like to note that as far as I have heard, Brian and only a couple of his siblings are able to help pay for Norma's services and funeral. I am not sure how much of this he would want me to share, but I would really like to help him (them) and I dont know how else to do that other than, well, to ask for help. The services and funeral are just shy of $10,000. We all know how tight things are right now. Heck, just in general, I cant believe how much they charge for all of the arrangements being made. Taking advantage of people, especially when they are going through something tragic like this, is just sick to me.

Brian and his sister, Connie, were able to find a funeral home that will allow them to make payment arrangements. However, payment arrangements or not, the bill is still almost $10,000 and that is a lot for anyone these days. We were not sure how to word it in the obituary, but if you would like to, and are able to, make donations to the cost of Norma's funeral, we would appreciate it more than we could ever express. I dont want to post their address online. But you can send me an email or note and I will private message you their address.

Thanks in advance if you are able to help - in any way! Even just happy prayers and thoughts are wonderful! I have told Brian about all of the comments and well wishes I have received on behalf of his family and friends. Brian is one of the sweetest, gentlest, kindest, most family-oriented people I have ever known. And I can 100% say he is THE most honest person I have known in my entire life. I am proud to call him my Pa. And it aches beyond measure that I cant take away his sadness and suffering of the loss of his mother.

Thank you for your love and condolences.
Much love.
Be Well.

24 November 2009

from my heart

i have a lot of acquaintances. a few very close friends that i prefer to call family. and some wonderful family i am happy to also call friends. recently a handful of you have made me feel so loved when i have been so miserable. a note. a phone call. a voicemail. your simple kindnesses mean more to me than i can express right now. but i want to thank you for helping me feel less alone. i hope you know who you are... and i hope you know how much i love and appreciate you.

21 November 2009

what's been going on... (medical update #7)

hey there punks and kittens~~
sorry it's taken me a while to get an update posted. there has been a lot going on. thanks for your patience.

my doctors and i dont believe the lidocaine/steroid injections and/or the lidocaine iv infusion treatments are really doing any good. in fact, most of the time i feel worse for days after treatments with no pain relief once the treatment effects wear off. doctors say that i am still pretty close to the baseline i was at when i first started seeing them. no improvement really. so this coming monday the 23rd will prolly be my last round of the lidocaine iv infusion. but they wanted to give it one more try.

many of you know that the neurologist i was seeing was a quack. i am seeking legal action against him. this is still in the beginning stages. and go figure, my employer's medical leave reps denied my application for extended medical leave based on what this fucking idiot that calls himself a dr had told them. thing is, i have letters and scripts in his handwriting that completely contradict what he wrote to the medical leave board. so now, i have to go thru the appeals process. they said could take from 30-180 days. and in the mean time i still have NO PAY. i told the claims rep i find it frustrating, ironic, and confusing that i have seen 16 doctors in this time off and they base their decision on the one idiot i saw that i am trying to sue. my luck is outstanding.

now my pain dr is referring me to a different neurologist at a different hospital. pain dr wants me to have another round of brain and spinal mri and emg. thing is, they cant see me until january 4th! the fact that this is taking so much time is hurting me a lot. as of april 2010, i no longer have a job. i only get 1 year of approved medical leave. and since my extended medical leave has been denied, now they have me on a temporary "personal leave". this is worse. this still keeps me attached to my employer, but i have NO pay AND i am now going to be billed for my health insurance. i know, i know, at least if have health benefits... but without pay, how do they expect me to pay for them?

i have moved out of my roommate situation and back to my house that i own. my sister and her kids were renting my house until they could get their own place. they moved out in october. just this last week i moved back in to my place. my roommate situation was getting out of control. i'm not going to express all the details... but it was not a good situation... and in fact, i think it was a huge additive to my already high stress and anxiety levels.

now i am back in the house that i own and am trying to sell. when i moved out of my roommate situation last week, i put everything in storage. so the only stuff in this house is me, my dogs, my nephew's old bed (which the dogs and i are sleeping in!), and the dining room set i am trying to sell. hoping that the first week of december will be ready for open houses. i'll keep you all posted. i'm trying to sell it by owner right now. i just want to get out of it. i dont want to have to upcharge a ton of money just to pay a realtor. we'll see how that goes. i am also trying to sell the fridge and stove/oven if you or someone you know might be interested.

my pa's (stepdad) mother is in the hospital with a lot of cancer and is not doing well at all. "they" dont think she will make it to the end of the year. i hate when they try to tell someone "you only have this much time left". they dont know. we dont have expiration dates. and i think if you tell someone they only have a certain amount of time, they get that in their head and heart and maybe dont try because they are counting down the days. it's a miserable situation. brian (my stepdad) has been at the hospital non-stop. he's suffering very deeply about this. without going in to their family dynamics... brian lives the farthest away and has been camped at the hospital... while her immediate family that lives just minutes away hardly stop in once a week. brian's heart is just breaking. and there is nothing any of us can do to make any of this better for him or his mother. it's just so sad.

i had another round of ultrasounds yesterday to recheck the ovarian cysts. i wont go in to the gory details. i dont get the results until december 4th, but the tech said it looks to her like the huge cyst on my left ovary might be getting smaller. they said that cysts can disintegrate... but that it'll be happily unusual if this one (because of the size - the cyst is the same size as my ovary) disintegrates rather than ruptures. i've had some pain for a couple of weeks, but they said it could be slowly breaking apart rather than one huge excruciating rupture. i can do without the excruciating! so, fingers crossed, this will get rid of itself.

there is more going on... but i'm kinda tired of typing right now. i know things seem to be crazy for so many people right now. i see posts on twitter, facebook and myspace and i am astounded by all of the miserable situations people are having to deal with. broken hearts, broken homes, illness, death, medical, financial, emotional... i just wish the best to each and every one of you. i love you all dearly, and even though some of us only chat online, i still cherish any contact i can get with you. (even though i would much rather give you each *hugs* in person!)

take care of you and yours.
much love.
be well.

05 November 2009

requesting positivity & peace for my friends & family

hey there friends and family~~
i would like to take some time to request your support for some people that are very important in my life. anything you want to send, whether it be good vibes, thoughts, prayers, meditations, smoke signals... whatever... these people could really use some positive power.

My sister, Heather.
Heather is a private person, so i will respect her privacy and not give details. Heather has some could-be-serious medical stuff going on with herself recently. i went with her to a doctor appointment yesterday, and they want her to get some tests in the next couple of weeks then she will be seen again in about 2 weeks for a recheck and test results. i absolutely treasure my sister, and so very much want her to be happy and healthy.

My Pa and his family.
Brian is my "stepdad"... but he is really more like a 2nd dad to me. His mother is extremely ill with cancer. I wont go in to details, but she is not doing well. As any family would, they are struggling trying to wrap their heads and hearts around this miserable illness and what it has done, and continues to do, to their family. To make matters worse, we got a phone call today that Brian's grandfather has cancer. G'pa will be going to the V.A. Hospital, from what I understand. Everyone in this world is important to someone. Brian is, beyond words, important to me. I cant stand to see him suffer, as he cant stand to see his mother and grandfather suffer, and not be able to do anything about it. cancer is a miserable miserable scum.

My Niece, Aubriana.
Aubriana will be 4 years old in January. she is the youngest of my sister's 3 children. she is also the 3rd of the 3 to be diagnosed with epilepsy (my sis has epilepsy as well). they say it is a freak occurrence that my sister and all of her children have it. Aubriana had her first EEG last week and they have started her on depakote, which is also what Alexa (her 6 year old sister) is on. all of these kids have been so strong, and such troopers considering all they have to go through and so little that they can understand. learn more about epilepsy.

My little cousin, Leah, and her family.
Leah is 5 years old. Halloween 2008 Leah was diagnosed with acute lymphoblastic leukemia (ALL). they were told she would have to undergo about 2 years of treatment. hopefully, they are 1/2 way through at this point. she is an amazing child with a spectacular spirit! recently, her ANC levels have been far below what they need to be. she has clinic every tuesday. her ANC needs to be over 1,000... 3 weeks ago her ANC was 456. 2 weeks ago it was 119. 1 week it was 200. this is the update Leah's mom (my cousin Sarah) sent us "Counts are still low today. We are holding chemo for another week. If her ANC is still low next week then they'll do a bone marrow to verify that nothing abnormal is going on. There continue to be no abnormal cells in her blood though. Thank you all for your prayers and please continue to pray for her." for more Leah updates, please check out their family blog here.

My good friend, and a splendid artist, Jess. i dont know how much of her story i am at liberty to discuss. but please please please send her some good vibes! *hugs*

My friend, Jennifer.
her father, who was a co-worker of mine, and he was a super sweet guy... passed away friday morning about 930a from lou gehrig's disease. i believe he was just diagnosed june 2009. i wasnt able to make it to his funeral, but i heard it was beautifully done.

Justin Meldal-Johnsen (most recently of Nine Inch Nails) is a spectacular musician that i absolutely adore. his mother, Marcia Smith, passed away from multiple myeloma on november 1st. after unexplained pain for months on end, she was diagnosed september 10, 2009 as stage III, the most advanced. Justin posted this "By way of explanation:" via the Nine Inch Nails forum. late last night / early this morning he posted this on his twitter "Thanks for kindness. My Mom passed away 11/1 after intense and courageous battle with cancer. Deeply grateful for support. Time for healing."

and, for now, last but not at all least...

a very special little boy, Noah, who is 5 years old is losing his fight to nueroblastoma. His family is going to celebrate Christmas next week. Noah would like to have Christmas cards. He loves getting mail! Help us make this possible please! Send your Christmas card to:

Noah Biorkman
1141 Fountain View Circle
South Lyon, MI 48178

***i just wanted to add a note. this is a real story. my ma's best friend knows Noah's family. it is so sad what these poor children, or anyone living with cancer, has to go through.***

thank you to each and every one of you that help send positivity and peace into the world.
much love to you and yours.
be well.

ps: i got my referral in the mail today from my soon-to-be new neurologist. they sent me a packet to fill out. however, it says that my new-patient appointment isnt until january 4, 2010 at 8a. i'm going to call. i hope they can put me on a cancellation list or something. i'll keep you posted.

03 November 2009

asking for help


i think, at this point, if you know me you know that i am currently on approved medical leave without pay. i have been on medical leave since may 15th. i have had ZERO income since september 15th. if my application for extended disability thru my employer is approved, the earliest i would see a paycheck is january 25th.

this is what it is coming down to. i am going to need to ask for / accept financial assistance. i have applied for state assistance but my application is pending approval which they said could take about another 3 weeks for an decision. this is for the michigan food assitance program. according to my application results, they say i dont qualify for cash assistance. i have no idea why not.

i applied for forbearance on my mortgage. in 5 years i have never missed a payment. now i am 2 months behind. my application is still pending at my mortgage bank, also. and low and behold, while i am awaiting the bank to make a decision (which they said could take 30 - 60 days) i received a notice today that due to taxes and escrow my house payment went up about $20 per month. lovely.
however, i do have the house for sale. hopefully my first open house will be this weekend. i figure i am on medical leave and cant do anything really, so the days i dont have packed with dr appointments, i am just going to sit at the house with my "open house now! come on in!" sign in the yard. i know the market sucks right now, but my house is in a really great neighborhood and i only want what i owe on it. oh yeah, and i am trying to sell my appliances individually for some quick cash.

i was approved for disability assistance on a small personal loan that i have. it's only a couple thousand dollars, but the insurance on the loan agrees to pay the full amount of my monthly payments while i am on disability. they even kicked in retro payments. yes!

additionally, i have medical bills racking up and still have to eat and pay for home utilities. i keep the house lights off as much as possible. i keep the gas heat down and just layer my clothes and cuddle with my doggies.

i have never had a credit card. which may be a good thing, so that i'm not racking them up now. however, it also means that in my current urgent situation, i dont have anything to fall back on now that the cash i did have is gone.

anywhom, so, yes, i am to the point i need to ask for help. i have never done this. i have always been able to take care of myself and anyone else that might need it. this is new and very uncomfortable for me. but i dont have much other choice. i have had some offers from family / friends wanting to send me money. up until this point i have turned them all down.

long story short, i need help. if you are willing and able to loan me anything financially, PLEASE KNOW THAT I WILL PAY YOU BACK! --AND THAT I WOULD BE EXTREMELY APPRECIATIVE! i am going to keep a journal of anything i get and payback every single penny as soon as i can. however, please keep in mind that "as soon as i can" might not be for a couple of months. i'm still in the process of making payment arrangements with everything listed above... but i am hoping, if all goes well, to be moving in the right direction by february.

as it stands now, i need about $4,000. any small amount would be helpful.
words cant express my deepest gratitude for any help at all.
even the smallest amount is huge to me right now.

i love you all oodles and bunches!
be well.

27 October 2009

medical update on the kids in my life...

i dont normally use pink text, but i will today for these little girlies!
my little 3 year old niece, Aubriana, has been undergoing testing for epilepsy diagnosis. my sister, her son (Austin 14), and her older daughter (Alexa 6) all have epilepsy. Aubriana has been experiencing seizures, so sis got her right in for testing. yesterday she had her first EEG and she did awesome! today she had to go in for breathing treatments and as a result, she had multiple seizures. she was in a controlled environment, but it's still a scary thing. heather (my sis) said that she had one that knocked her out cold and for longer than she has ever been out before... so, i'm sure needless to say, she was scared. we all are. heather says dr is probably going to put Aubriana on the same medication that Alexa is on. Austin is now 14 and was able to get off of his epilepsy meds a couple of years ago. hopefully the girls will "grow out of it" as well.

to learn more about epilepsy, please go to

as all tuesday's are, today was clinic day for my little 5 year old cousin, Leah, who is battling acute lymphoblastic leukemia. she was diagnosed over halloween last year.

2 weeks ago her ANC was 456. 1 week ago it was 119. this week it is 200. the thing is, her ANC needs to be over 1,000!

please visit my cousin Sarah's blog here for their family updates.

also, my sister's live-in boyfriend has a son that was just diagnosed yesterday with swine flu... and his other son has been feeling sick, but not yet diagnosed. between my sis and her boyfriend they have 5 kids in the house.

please keep all of these little ones in your thoughts, prayers, meditations or whatever it is you do... they need some happy healthy strong vibes!

***this added wednesday 28 oct 09 - 742a - i found out my cousin ShawnDe has swine flu circulating in her household. she lives in north carolina with her husband, daughter, and 2 sons. from what i have heard, my cousin does not have it but her husband and kids do. add them to your good vibes list!***

medical update #6

hey there punks and kittens~~

i saw my dr at the pain clinic this morning. i was scheduled for my 3rd round of injections, but after a long talk, we decided to stop the injections and try some other stuff (since the injections dont seem to be helping). i will still be getting the lidocaine iv infusions, though. pain dr is referring me to a different neurologist at a different hospital than the previous (incompetent) neurologist i had seen before. he said it might take a couple of weeks to get in, but i have other appointments in the meantime, so it'll be fine. he wants me to have another round of brain and spinal MRIs since my previous set was back in may. also wants new / different blood workups. possibly another EMG (i'm not at all excited about that).

i see my primary care on monday 2nd (unless she gets a cancellation and i can get in sooner). pain dr wants me to discuss with my primary care about possibility of getting me on a med that might be able to cover the spectrum of pain, anxiety, and depression all in one. most of you know that i despise taking pills, but i'll do what i have to for now to get better as quickly as possible.

pain dr says he would not credit all of my current medical issues with stress and anxiety... but he says that they could be a HUGE factor as to why i am not improving. he's got me seeing a pain psychologist as well. actually, he is referring me to a new / different pain psych next time i go in. maybe new eyes and ears will notice something all of us havent yet. fingers crossed.

no more discussion of cleveland clinic just yet. pain dr said that is still going to be a last resort.

last week i was having some pretty miserable tremor days. most of you know that due to pain and lack of money i havent been getting out much. i just stay at "home". well, one night last week my sis and i went to a little holiday / food expo at the local auditorium. i had tremors terribly that day. tried to curl my hair but i couldnt function my hand to use the curling iron, dropped it on my foot. then i about lost all of my food at the expo when my tremors kicked in high gear as i was holding my food plate. sis saved my chocolate chip muffin in mid-air! thanks sis!

i know it seems like most of my recent posts are depressing. i dont mean them to be. i am just trying to figure it all out. (with all of my pain, i cant go to the batting cages to take out my frustrations, so i am writing) i have always been able to take care of myself and others... this current helplessness is new to me. i have been low on funds, but never BROKE, before. i have never been late on my mortgage in 5 years. and now i am having to file for homeowners hardship assistance. my paid medical leave benefit through my employer has been exhausted, so now i have ZERO income. i have $23 in my bank account. i honestly have no fucking clue how i am going to pay for anything at all. tomorrow morning one of the local churches is doing something they call "daily bread". every other week, this same church, takes donations from grocery stores that have day old breads and such and they allow those in need to come in and take what you need for your household. now, it's not like you take all you can get... you sign up for your household and they designate how many you can get. like 3 loaves sliced bread, 1 bag hamburger buns, 1 bag hotdog buns, 1 bag bagels or english muffins... and so on. i know i cant eat all of it myself before it goes bad, so i either dont take all i am allowed, or i take it to my sis or something. i've tried to convince sis that with her gang of kids, she should take advantage of this offering, but she hasnt been there with me yet. i kinda feel a little bad about it since i dont go to church... but a good friend of mine goes to that church and she says the church honestly does not care. they just want to help. side note, i feel like some people in line are judging me. this is a small town. i see people there that i know, know of me and where i work. they know that i have a "good" job with nice pay and benefits. they glare and stare. i know that they dont know my situation... and i shouldnt have to explain myself... but i still feel like i am stealing from the poor.

anywhom... what was i saying before that free bread rant?!

yeah, so, my dr(s) are not ruling out that my stress levels are impairing my healing process.

there are A LOT of things i dont (and cant) write about publicly right now. the main reason is that some things, well, i dont know what i can and cant say to keep my employment protected. i lost my medical leave job protection when i hit the 6 month mark, and they gave my specific job away. so now, i am still "attached" to the company, but i do not have a specific job to return to. i have until april 2010 to get better enough to return to work, or they will "separate" me from the company. april is 7 months away, which seems like forever... but i never in a million years thought i would be off this 6 months i have been off through now.

my sister and her boyfriend and their clan of rugrats finally found themselves a place bigger than my house. they moved out of my place a couple of weeks ago. so, i am now trying to get my house ready to sell. nothing fancy... i have no money and no physical energy, so i'm selling it as-is for the most part. i think i am just about close enough that i am going to try to have my first open house this coming weekend. for anyone interested, i'll be sure to post it and let you know. tell everyone you know! i have fliers with all the info if you want to pass it along to family and friends... or i can email the info to you. i just need to get out of this mortgage! i am currently renting from a friend's parents' rental property. it is super-duper cheaper and it gives me the open availability to to sell my place asap since it is empty and ready to go!

like i said, there are sooo many things going on in my life that you kids know nothing about. i dont want you to think that i am bitching without reason. and i'm sure that some of my rants come out wrong or misplaced since i have other troubles i am not at liberty to discuss, or out of respect for other people i just dont discuss them publicly. so, please bear with me when i vent. and please bear with me if i dont return emails, phone calls or texts right away. just because you might see me logged in to a website, does not mean i am staring at my computer. i leave it on a lot of times so that i dont have to wait for my computer's start-up cycles. i only "just" got my cell phone in february 2006. i did so because i had met a guy online that lived a few hours away and my family and friends we all freaked when i said i was going to meet him for the first time. they didnt shutup until i got a cell phone before i went to meet him. however, part of me knew that it would not always be used for good... that evil could come of it... and that evil is the fact that many people believe cell phones to be personal tracking devices rather than modern convenience. *eye roll* anywhom, as i was saying, if i dont get back with you right away, maybe it is because i want or need space, time, sleep, rest, blah blah blah. and thank you in advance for your respect.

okay, well, i dont know that i actually made any points in this post. sounds like just a bunch of rambles to me. seems like there were other things i wanted to address or discuss but i cant really remember them. suppose i am going to curl up with my doggies on the couch, heating pad on my head, and watch my housemate play his wii zelda until i drift to slumber.

thank you for all of your love, support, well wishes, cares, concerns, prayers, thoughts, vibes, meditations, and such!
i love you all oodles and bunches!
be well.

fingers crossed...

my next few dr appointments are going to be kindof a huge deal. i cant really reveal what "might be" - but just know i'll be yelling from the rooftops if things go in my favor! thanks for all of your love, support, care, concerns, well wishes, prayers, thoughts, meditations and such.
much love.
be well.

this sums up how i've been feeling...

21 October 2009

a very quick rant, just to get it out!

what the heck did i do in this life or any other life to curse me with what i am going through now?!

sept.28th i spoke with my mortgage people about fact that i have NO income due to medical leave & rep told me i must file for "hardship program" (8 page application) THEN i can file for "forbearance" (only a 2 page application)to help me with my mortgage payment while i have no income. now, today, i called & diff rep told me hardship program only lowers payment, doesnt help when you have NO income, & that i should be filing forbearance! i told her that a month ago i was told the opposite! she dealt with my "unhappiness" well, & walked me thru 5/3 online how to do it fastest way. but i could have done that a month ago & been done with this & had my mortgage (possibly) taken care of by now! instead, i have not been able to pay my mortgage for the first time in 4 years (this month) & it's getting late fees & damaging my credit. AND she is not sure they will retro help me, but she said she will ask about it considering the situation. GAAA!

oh... and while i was typing the above note, my employer called and said they are officially putting my job up for bid. so when i am able to return to work, i will have to apply online and interview and be awarded a new position within the company. and as of april 25, 2010 my medical leave benefit will exhaust and i will be separated from the company if i have not yet returned.

16 October 2009

explanation of medical leave junk, and asking for your ideas

this was written last night... but i thought i lost it when my computer auto-update-restarted overnight. bothered me all day that i couldnt remember everything to rewrite it (since i was in a post-treatment-zombie-haze when i wrote it about 1a). then as i was just now trying to nap but my tornado of thoughts was keeping me awake, i realized that i used the "edit posts" on my blogger to spell check and it has auto save! so, here it is.

more and more medical leave paperwork. as i have stated before, i am on what my employer is calling "approved medical leave without pay" since i have exhausted all of my paid medical leave (26 weeks worth). i am still "attached" to the company, but they have back-filled my specific job. so when i am able to return to work, i will have to apply online for a job, interview, and be awarded a new position. right now, there are no jobs open. just my luck.

also my luck... i am reading over the information on my "extended disability plan application" and pieced this together:

-i have been on medical leave since may 15, 2009.
-i have been on UNPAID leave since september 15, 2009.
-i am not eligible for extended disability until november 12, 2009.
-extended disability would allow me appox. 50% of my pay.
-per extended disability plan, i am required to also file for social security disability benefits.

medical leave paperwork cover letter noted:

-SS application can take several months.

-advised SS determinations have "entirely different standards" and more than likely i could be denied.

-your disability must be for "a period no less than 12 months"

-i have been off just short of 6 months, and was also sent a letter that states "after you have been on one year of leave and you are unable to return to work and have no impending release to return to work from medical leave you may be separated from the company."

-so, it seems a bit of a waste for me to file for SS disability benefits since
1) i dont meet the minimum requirement of 12 months off and
2) if i did meet the minimum 12 month requirement, i would be off too long to be able to keep my employment status active and would prolly be fired (excuse me, "separated") anyway.

but lets say i AM approved for at least the extended disability through my employer alone. my application is not eligible until november 12, 2009. then i am told it takes an average 60 days to be approved. lets go on the fast side and say it only takes me 30 days. november 12th my application is in. say, december 12th i'm approved. well, on this plan you get paid monthly "on our about the 25th of the month"... they say, that your initial monthly payment will not be until the following month.

the earliest i could possibly get my next paycheck is january 25th, 2010.
so, i have the terrible possibility of being on unpaid leave with no assistance from september 15, 2009 until january 25, 2010. (at the earliest!)

do you see now one of my major stress factors in addition to my health issues? i have, literally, no income. i am not eligible for unemployment or state assistance. (i would like to note that i have never used any form of government assistance and i refuse to, unless absolutely necessary. and i think now is the time i would need it, but i am not eligible.) no income whatsoever. medical bills piling up on top of my regular bills. i really need to get my house sold. i have never had a credit card. still dont. never been in a bankruptcy or foreclosure situation and i am trying my damnedest not to let that happen now.

honestly, i just dont know what else i can do. if anyone has any experience with a similar situation or suggestions, ideas, brainstorms... let me know! i am exhausted with trying to get better AND trying to figure out how this will work. i think the added stress of the paperwork / lack-of-income aspect is so very stressful it may be hindering my healing process, if even a little.

i know that sooo many people are going through sooo many of their own things right now. i am not trying to say my worries or woes are worse than yours. on the same note, i do know that a lot of you are going through, well, a lot... but that shouldnt discount the level of my situation. i hope i am not putting my foot in my mouth here. i just hope that we can all support each other and love each other and get through these miserable things together. i am always here if any of you ever want to write, email, call, text... whatever. i am here for you! i love you all so very much and i just wish we could all live happy, healthy and peacefully. together.

maybe that's just the flower child in me.

take care of you and yours.
be well.

please note: yes, i am grateful for what i DO have... a roof over my head (currently), medical insurance (currently), LOVING family, friends and canines, and each day that i wake up, alive (yeah, even though i am in pain... i am alive!)

12 October 2009

a day in the life of medical leave

my pain psychologist keeps asking me, "what do you do to relax?" and i reply to him, "well, nothing right now. because most of what i enjoy doing to relax i cant do with the pain in my hands and arms." drawing, painting, writing, artwork in general. he suggests that i write, since i fill our 1 hour sessions to the last second. but i tell him that i cant hand-write too much because of the pain. and just filling out all this medical leave paperwork is sometimes more than i can take. i type more comfortably... but still can only do it for short periods of time. which is why it has taken me a while between posts... because 1) i type until my hand hurts, then have to stop. 2) i end up re-re-reading everything because it sounds choppy with my here-and-there writing.


for those of you (and my pain psych) that keep asking, "what are you doing while you are off?" ... well, nothing. to be honest. nothing, really, at all. which i think is why my depression takes over quite often. i'm in a lot of pain that increases with movement and pressure. the more i use my hand / arm / shoulder, the more it hurts. even just sitting back in a chair that puts pressure on my shoulder blade or neck. laying down is a mess. i cant lay on my back or sides without pain on the pressure points... but i cant lay on my tummy very well either because i still have to crank my neck to the side on the pillow which pulls that nerve from my neck to my head. additionally, i have a lot of weakness in my right arm and hand, which makes even simple things difficult - even if i could work thru the pain. granted, i am doing my physical and occupational therapy along with the iv infusions and injections, but those leave me drained. i have difficulty sleeping for reasons my doctors and i cant figure out. one is pain, yes. but dr has tried me on some sleeping meds that are suppose to help with that, but they dont seem to help at all. i feel no difference when i take them. and i -d e s p i s e- taking medication. blargh. but, i do what the doctors tell me to do. they still do not have a diagnosis for me. the main dr i am seeing thinks that my previous drs couldnt figure it out because they were trying to lump all of my symptoms into one diagnosis. this dr thinks that i may have 2 or 3 different things going on. so he is doing pain treatments to see if he gets rid of one pain, what is still there and what might be causing it? ya know? he said these treatments could take about 4 sessions before i notice a difference. thing is, one can only be done once every 3 weeks and the other one is every 4 weeks. so that is why this seems to be taking forever. i am on my 2nd round of each treatment. last thursday i had the direct injections which totally suck! this thursday i will have the iv infusion. less painful procedure, but it makes me sick for about 3 days after.

so, i just sit here at my house. do a load of laundry once in a while. put the doggies outside for a bit. watch movies. look around online. read, when my head allows me to focus for a while. listen to music. eat. sit on my couch and stare at my doggies and think way tooo much about how the hell is this ever going to get better? i'm not driving right now, and even if i were it wouldnt matter because my jeep is broken. i am 100% broke financially, so i dont go out.

thats another thing that bothers me. i dread even going to the grocery store. my roommie usually takes me to my dr appointments or grocery shopping... etc. well, i tend to get weird looks from people i know from work that havent seen me in a while. i keep saying that i wish my skin would turn a different color so you could see where the pain is and that it *does* exist. ya know? i was so happy when i found this dr and he was doing my exam and he and 2 other drs in his office told me they could actually physically feel the damage in my arm / shoulder / neck. that may sound weird, but it was such a relief just to have someone say, "yes, i can feel that, too. i believe your pain."

all of this came just when i thought i was getting things in order. i was 2 weeks shy of starting a new job within the same company. a job that i believe would have been just what i needed and had been looking for. hours i wanted, new group of people to work with, less-stress job... i was really looking forward to it. i went on medical leave just 2 weeks before i could start my training, and havent been able to go back since. now, i am told, they are back-filling my job. so when i return to work, i will not have the job i was awarded before i left. i wont have *any* specific job. i will have to apply to whatever jobs are open, and i will still have to interview and be awarded another position.

most of you know that i have been planning to move, well, forever. my sis and her kids are now moving out of my house and i will hopefully be able to sell it quickly. otherwise, i have no income to pay for my house... or anything else for that matter. i have never had a credit card, foreclosure, bankruptcy, etc. now i fear my credit is going to be ruined. i dont need my credit taking a dive just as i get ready to move and will need to be filling out credit applications and all that jazz for a new place. ya know? i realize that everyone is having a hard time... in so many ways... but i'm the one that always has a way out. i take care of myself and everyone else. now i cant even take care of myself. i've never been in this situation before. if i need money, i work for it. i've had 3 jobs at once before. i am not afraid of work. now i cant do even one job. i always have a plan, or idea how to get to the next point. now, i cant see any good ending to this. i just cant find one, no matter how hard i look. "everything happens for a reason" isnt cutting it anymore for me. what possible reason could there be for all the bad things myself and / or my loved ones are going through? we are good people. why do bad things happen to good people? i dont understand. maybe i never will. i suppose until i am on the other side of this whole thing, i wont know the answer to that. maybe i'll never know.

well, i'm sure this post is just a mush of jumbled up depressing thoughts from a girl that feels trapped and hopelessly broken. no, i am not looking for pity. i do know that things will have to get better because, really, how can they keep getting worse? i know some of you think i am a downer... but really, i'm not always like this. i dont want to come off like "woe is me"... i just need to vent. and this is how i do it. i'll post this and send it to oblivion and no one needs to reply... but getting it out does help a little. and if you ever want to vent to me, please know that i am always here for all of you, as well.

i love you all oodles and bunches.
be well.

07 October 2009

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.

*** 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.

18 September 2009

i will not stop what is in my heart

tomorrow will mark 12 weeks since Pablo's passing from cancer. he was 6 years and 6 days old. i followed his story for over a year and became very attached to his beautiful Spirit. i am not posting reminders of death... rather, hopes, that his memory and life are not forgotten and his Spirit can live on in the fight for all children, families, and friends that suffer from this terrible disease. i have a little cousin, Leah, who was diagnosed last november with leukemia. i have been trying to start a fund in Leah's name. however, the banks are making me fight redtape since i am not an immediate family member. i am working with Leah's parents (my cousins) in an effort to help ease their financial burdens so they can focus on what is more important than the money - their Family. i look forward to helping Leah and any and all children that are living with cancer. the bulletins i post regarding the Pablove Foundation / Pablove Across America are all about how Pablo's family are still raising money and awareness and helping every single child they can, in memory of Pablo, in honor of Pablo. for all we know, their efforts in Pablo's honor could help cure our Leah. i hope and pray for that every day.

my dog, KaiYin, is 9 years and 9 months old. she was diagnosed with cancer when she was 3 years old. she has had 6 surgeries in 6 years. no, she is not "just a dog". she is my dog. my dog-ter. my baby girl. my best friend. and like many kids with cancer, she doesnt let it get her down. she plays and runs and jumps and lives and loves. i will fight for her with everything in me. KaiYin has been home 8 days since her 6th cancer surgery... and she proudly sports her Pablove shirt to cover her incision areas while she is healing.

i know that i have a good heart and honest intentions to make this world better in some small way. nothing was ever mentioned when i posted Pablo notes while he was alive. now, he has only been gone 3 months, and people want me to stop talking about him. i will not stop talking about Pablo, or Leah, or children's cancer. i will not stop trying to raise awareness and help these children that cannot help themselves.

if you do not want to read what i write to know or learn who i am as a person, what i believe in as a human being and what i feel in my heart... then dont click the links, dont open the notes, dont friend me on myspace or facebook, dont follow me on twitter.

i'll end this post with and excerpt from the Pablove Foundation Mission Statement:

"Every year, the Pablove Foundation gives money to improve the lives of children with cancer, at both a national level as well as a local level here in Los Angeles. As we carry out our mission, we wave a flag for anyone to see. On it are these words: Kids get cancer too. They need your help. It’s not somebody else’s problem."

15 September 2009

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.