About/Personal Update-1/21/11

  Only the information contained within siningfromthecrease.wordpress.com and triplemmm.wordpress.com can be considered true and factual information about Mia Lueth, Jerry Grubauer and Sara Daniels. All original content within these two blogs was created and contributed by Mia. Format corrections and technical edits are performed in an ongoing basis by Sara Daniels.

Update: 1/21/10 – Mia’s up-to-date health status is directly below. The more general picture, including the events leading up to her current status, begins a few paragraphs down. 1/21/11 – This page will be set in a different format very soon. There are many issues in the HTML that must be addressed. This update is written by Sara Daniels.

I made two attempts to phone Mia this morning, then went to visit and get my time with the SFTC shared laptop. Mia did not come to the door. I did not receive a return call either. Eventually, she did respond to an e-mail inquiry from me asking if she was “okay.” The response was simply “no worries.”

Many people do not spend enough time around Mia, which is unfortunate, but something she knows will happen because she says, “patience enough to understand someone as a real human stops at the first look.” She has an outlook on almost everything that, to this very day, leaves me in a state of belief that no evil could exist if Mia has anything to do with it. When I first met her several years ago, her life was something I could not even imagine having to live. She did not hide from the complete misery, but I’d bet all odds that for anything I saw or heard from her, the actual situation was one thousand times worse.

I was a “sometimes” Washington Capitals fan. As time went by, it became impossible not to talk about ice hockey when I spent time around Mia. She gets so into the subject, that it would take a Hurculean effort to not get sucked into the conversation. I warned Jerry several times that “once Mia gets her “ice hockey love” hooks into him, there is no breaking free. Now, I find myself telling people who did not even ask that the Washington Capitals will win the Stanley Cup. I catch myself saying it with a conviction that could have only come from Mia’s relentless belief that it will happen. I joke with her by telling her she’s a “Cup Whisperer.” She always lights up with her usual semi-devious smirk and always replies the same, “I am the worst Cup Whisperer ever! But, if have to whisper that thing home – I’ll get better. You’d think more than 3 decades of practice would suffice. I shall not be defeated.” I always believe her too.

Today, I got the sense that she pulled a typical “Mia” and what “no worries” meant is actually reason to worry. There are times when she could be standing in boiling hot water with her hair on fire, in the figurative sense that is, and with no single indication of panic or fear, she will say, “no worries” as she is reaching for a bucket to fill with the boiling hot water to douce the flames on her head. She hasn’t spoken to me about her most recent job interview, however, as one becomes closer to Mia, her ways begin to be more understandable.

For example, when she reads this, I will get the look she lovingly threatens from time to time. I can hear her now saying, “Okay there Daniels, you don’t want me giving you the stink eye do you?” My ex-husband used to tell me that “Mia’s got that look again – quick Sara, you turn on a hockey game to create a diversion and I’ll go start the car.” I don’t know with any certainty, but my best instincts tell me that she’s hit a threshold limit in the mental toughness arena. She will not find my honesty here a welcome addition, but as I mentioned, once a person takes a little time to get to know her, there becomes a more clear idea of how to approach certain situations with her.

She has had a couple of job interviews. She has medication for the next 90 days. She pressured the company who holds the warranty on her crappy car to do enough work on it to keep it running for a little while longer. She has found a rental house on the water (where she feels most comfortable) that may be a solution to her current living situation problem. I won’t get into that, but I have no idea how she can even bear it. She can tolerate so much more than anyone I have ever personally known. Jerry and I do not understand how she even gets out of bed in the morning.

My point is that I did get the SFTC shared laptop from Mia’s housemate. I am going to do what I can to put Mia’s mind at ease to whatever small degree I can by cleaning as many format issues, making technical edits and updating as much of her two blogs as is possible. She will be upset with me, but the signs that she is overwhelmed by having no income and could soon have no reasonable place to live are there. Anyone in her position would be worried, scared, tired, mentally worn and about a hundred other things. Just like Jerry and I are 100% sure that she has no hockey related “off” button, we are also 100% sure she has no idea how to rely on anyone other than herself.

The best I can do for her is remove some of the mistakes and issues she’s been trying to fix on her two blogs and make updates as mucvh as I can for her. For now, I don’t know if she has taken a turn for the worse relating to the Lymphoma or is she has any other physical situation that may or not be of a serious nature. She finds some sort of inner energy source and she has not appeared to me to be overly drained when I have seen her.

If she has decided to keep to herself because he has received news that she is far more sick than she will ever let on, Jerry and I promised we’d maintain Singing From the Crease for her and she made us promise to do something very specific with her signed Kolzig jersey. I wish I could include more than I have here. Jerry and I will get in touch with her two best friends, who also happen to be married to each other, and try our best to get the singing “Cup Whisperer” back.

We are not taking “no worries” as anything other than the exact opposite. I’m sure Mia will not be as upset if she does read this when she sees this:  GO CAPS!

 

 

12/12/10 – As of 12/1/10, I am one of the many unemployed Americans. The government contract on which I worked and team captained with federal law enforcement officers was suddenly not funded and 24 other professionals, just like me, at sites across the country have become unecessary collateral damage. It’s highly ironic to me that we worked at our operational sites on behalf of a headquarters based (meaning Washington D.C.  – which may be my country’s capital, but it isn’t the hockey capital – I’m doing my part – but the Washington Capitals aren’t) unit called the “Career Development and Training Unit.” How can any organization feel that development can be considered a short-term obligation. Am I just being silly by thinking that of all the on-the-job training initiatives and well-honed, in-service training units with a mission to consistantly practice and grow the skills of law-enforcement teams/officers who deal with human life everday AND carry firearms – this mission REQUIRES FUNDING IN ORDER TO SAVE LIVES, CIVILIAN AND OTHERWISE. THE MORE EFFICIENT I MADE THE TRAINING ADMINISTRATIVE INFRASTRUCTURE AND STREAMLINED THE ENROLLING PROCESS TO DELIVER SPECIFIC NEED-BASED TRAINING QUICKLY,SMOOTHLY AND EFFECTIVELY, THE BETTER TRAINED THE LAW ENFORCEMENT OFFICERS WHO FIND THREATS TO THIS COUNTRY WHO ARE CRIMINAL FUGITIVES CAN GET THEM OFF THE PUBLIC STREETS FASTER.

Development takes time, planning and continuous analysis in order to make adjustments that fit the flexible nature of law enforcement with the goal of strengthening what works and discovering what could be better and working on improvemet. Training for law enforcement is not a fly-by-night operation that’s put in place as an experiment. Life and death decisions get made. Who would you want around you with a weapon if the poop hits the fan, someone who barely qualified with their issued firearm last year and has had no reason to clean and maintain the weapon, or someone who has had to qualify every quarter, learns a different tactical skill every time that persons qualifies and each corresponding quarter the following year, that person will update those same skills, never being allowed to enter the firing range without a clean, well-maintained weapon?Well, at least I know there are Fugitive Operations teams at my former detail office who got set-up for better, more frequent, more diverse and more operationally relavant specialized training before I got the boot. I also created an administrative training unit that did not exist when I walked through the door. I had the exact-right personal life experiences and am coach/teacher/trainer by native instinct so I had the proper tools to impart valuable perspectives to law enforcement officers about resilience and overcoming adversity when no one could or even tried previously. I will sleep as well as a sufferer of Lyphoma can sleep knowing that my job mattered and I left that field site better than when I found it. I always leave things better than when I found them. It’s my personal trademark. I am becoming aware that I will not be able to afford the COBRA health insurance and may soon not have enough money to fix my vehicle. I did make sure to get prescriptions filled and see a doctor or two before I lost my health insurance, so now the search for work is well underway. I may even go back to school on a fast-track Masters/PhD program at one of two select Maryland Universities – but only if I can snag a Teaching Assistantship/Fellowship.

I think the Washington Capitals could use a fresh perspective, so maybe I’ll start bothering people until they just get tired of me and give me a job so I can “do what I do.”

My health is stable and I am holding steady by choosing a strictly medication by pill form treatment and the mass in my neck is still hanging out there, just chillin’. I call it “the lumpster”. No other lumps have been found externally. I have been unable to get the scans I need to see if there are any masses internally yet. There’s this minor glich called “no health insurance” dropping fly poop in the ointment. I have had two blood transfusions so far, one was an emergeny, but I was abe to get my blood tests regularly enough (I’m getting really good at reading the CBC’s) that it was much easier to determine when another transfusion was in order. One day, I might end up with ten different people’s life juice in me. Keep giving blood everyone – maybe I’ll meet a fun, yet responsible, intelligent, slightly quirky, single, hockey fan that way. That’s be an awesome pick-up line – “Hey, thanks for spottin’ me some plasma – I guess I’ll just have to figure out a way to repay you somehow – got any ideas?” I wasn’t comfortable the first time I got a transfusion. It seemed a little it like an internal invasion of someone elses stuff. Now – I look at it like collecting parts of giving people who had enough to share. I put random givers in touch with each other inside my body. The people may never have met, but their life juice has! That’s pretty cool! I’m a fan of the givers of blood – THANKS!!!

For now, I am trying to put a plan in action. I am working to find another means of employment that I will enjoy and that means something to me. The urgency and time sensitive nature of losing my job and along with it my health insurance may put me in a position of having to take whatever I can the fastest and that will probably not be something I’ll enjoy or challenge me in ways that make me happy – so I’ve also begun looking online for desperate men with jobs who will marry me ASAP. Screw it – why be happy when you can drink a lot and ask your doctor for schedule II narcotics to get you through the day. I’ve got plans, contingency or otherwise. If I get lucky, Ill run across a depsperate full-on lover of hockey and if all else doesn’t fit – at least I will always have the hockey to keep me from being totally miserable in a mind-numbing, loveless marriage.

I’ll be updating a little more often while unemployed and feel free to send your desperate hockey-loving single male friends who are proponants of shot-gun weddings my way. I’m exploring all options at this point. GO CAPS (and I’m not just saying that – I mean GO, GO faster, GO smarter, GO with more conviction, GO, GO, GO) – mia

10/27/10 – Aside from watching a bunny get killed and my newly activated desire to be an internet goon that Facebook will not soon forget (shame on you Facebook – shame on you), I am working hard to get appointments to see specialists. On Friday, I’ll get a scan done to find out if I have any masses (tumors) near lymphnodes that cannot be felt externally and get a complete work-up of my endocrine system to be absolutely sure I don’t have any issues with my thyroid.

I had the “double roto-rooter” done about two weeks ago. Yes, I use that term to describe an endoscopy (which I’ve had done a few times previously) and a colonoscopy. The procedures went just fine, but I sincerely believe that anyone who gets a colonoscopy should be given a cork to put in place the day before the procedure. Geez, the prep solution one must take the day before a standard colonoscopy is like extra-sweet motor oil that will put you on a toilet and keep you there for fear of needing XL Pampers.

Everything looked okay and all biopsied samples came back negative. I will not disgust you with the reason I had to make a hasty appointment for the “double roto-rooter”. Let me just say that I found blood where blood should not be found. I actually had to have an emergency blood transfusion. Now I’ve got someone else’s stuff all in me – I’m thankful people donate blood. I was uncomfortable with the thought of having another persons life-juice mixed with mine. I have since decided that thought was silly. 

To date, I have not begun any chemotherapy or radation therapy. The visible mass in my neck has not grown or shrunk in any measurable way. It may just remain where it is, unless there is evidence that is growing larger. After pouring through a huge pile of blood cancer related reading material, I came to the understanding that many people are able to live with it and take medication to control the symptoms. Some people go through chemo and/or radiation and never get bothered by it again. This blood cancer stuff can be wide and varied, so each person who is diagnosed with any kind of blood cancer may have very unique symptoms, reactions, survivability rates, challenges and so forth.

I have not found any more visible masses. My biggest daily challenge is finding energy. I get fevers sporadically that tend appear and disappear at will. They sap me of my normal mojo faster than I can even explain. I couldn’t even walk up a flight of steps one day last week. Emotionally, that hit me hard, right in the gut. There aren’t any real patterns that I am able to recognize, or any noticable signs that have made themselves known to me, in terms of when my energy will vacate and leave me little more than a useless lump for unknown periods of time. I get discouraged a bit by those times when I feel about as limp as an overcooked noodle. This is a very new concept for me to handle. I’ve broken bones, sprained many parts of my body, bruised or cut at least 3/4 of the totality of my dermis at some point in time and even had a gum transplant, but at no time have I ever been so weak as to be unable to walk a flight of stairs.

I’ve been downright exhausted before. I’ve been in casts and crutches before. I’ve been dizzy and really sick before. Those things never took as much out of me as seems to be happening to me recently. It’s almost as though I have no muscles anywhere in my body sometimes and right now, I can’t even “push” or “dig” or “will” myself to overcome it. I think that scares me and I am having trouble digesting that notion.

Aside from the fevers and the “wet, limp, noodle” symptoms, the only other thing that is of concern to me at this point is the compete and total lack of any appetite at all. My stomach growls and I’ll see yummy things that I know I like and would love to eat, such as a medium-rare New York strip steak, grape leaves or lemon cheesecake (three of my favorites). Yet, I could get any or all of those things right in front of me and there’s a high chance I would not take a single a bite of anything.

I’m managing the best I can I suppose. It helps that the NHL season has begun. It may be unbelievable to many, not all I’m guessing though, that my days may very likely be numbered at this point, but I don’t seem to be particularly stuck on that possibility. I have 30 NHL teams to think about. Not to mention the AHL and the ECHL and on and on. Hockey just makes me happy, plain and simple. I’m very lucky – I can think about ice hockey all day, every day, and there is nothing anyone can do or say to take that away from me. I’ve always got hockey. Always. That may isolate me and may even cause me more trouble that good in some ways here and there, but when I do finally go – I’ll know I went in love with hockey despite all else. Not only can I live with that thought, but I can die with it too! HOCKEY ROCKS!

10/18/10 – As of this morning, I am about 92% sure that I will be stuck paying three months rent on a lease for an apartment in which I cannot live. I am NOT HAVING A GOOD DAY AT ALL IN THE SLIGHTEST!!!! It’s too bad it is deemed inappropriate in today’s society for a woman to just start punching and kicking inatimate objects out-of-the-blue. So much for trying to rebuild my credit. So much for any chance of getting a vehicle that doesn’t break-down and leave me stranded all over the place. So much for parking in the city for work everyday, it’s time to be a slave to the city bus schedule on the most crime-filled busline in Baltimore and having no ability to get to a doctor or handle an emergency if it comes. So much for progress.

I doubt my spirits could get any lower. I will have to sell or throw-out anything I have in storage by the end of October, because I will have to use that money to TRY to pay for a place to live in which I cannot live. If I do not pay that money, I will eventually be taken to court and my paycheck may be a traget and legally, it seems, I have no rights whatsoever! FANFRAKINTASTIC!!! I can’t rely on my housemate for help as I had originally thought. It seems that she not only has an SEVERE anger issue, but she wouldn’t know a budget if it was on fire and crawled right up her butt. She had to RELY ON ME to get to work last week, because she didn’t have money to put gas in the vehicle she barely makes payments on and could get taken away in the middle of the night by repomen at any time now. She makes plenty of money, mind you. She just views priorities as to how to manage her money in a manner in which I cannot even wrap my head around. I’m very different and I would never pay THOUSANDS of dollars to get tattoo work over 1/3 my body if I even thought I could miss a mortgage payment. It’s more important to her to buy things on E-bay than it is to pay her mortgage or gas and electric bill. DEAR UNIVERSE – THE ONE AND ONLY WAY I WILL ACCEPT THIS CONSTANT PROVERBIAL BEATING WITH NO END IN SIGHT, BOUND TO DRAG ME KICKING AND SCREAMING IN THE UGLIEST FASHION POSSIBLE TO MY HORRIBLE, UNSIGHTLY DEATH IN PROVERTY, ON THE STREETS, IS IF THE CAPITALS ARE DESTINED TO WIN THE STANLEY CUP THIS YEAR! OTHERWISE, BACK THE “F” OFF AND LEAVE ME THE “F” ALONE! SH#%!!!!!!!!!!

MY HEALTH WOULD BE FAR, FAR, FAR, FAR, BETTER IF I DIDN’T HAVE TO WORRY ABOUT BEING HOMELESS EVERY SINGLE SECOND OF EVERY SINGLE DAY!!!!! SH#%!!!!!!! IF THE THINGS THAT DON’T KILL YOU MAKE YOU STRONGER – WHAT KIND OF F’ING, BALLS-OUT ARMAGENDON AM I GETTING GROOMED TO FIGHT? FOR LOVE OF ALL THE SACRED BLUE-PAINT IN THE WORLD – I NEED A BREAK! (and a Kit-Kat bar just isn’t gonna come close to cutting it)

As for my health, I do the utmost to keep hydrated and stay active, but not to the point of completing exhausting the fuel cells, so to speak. I get fevers on and off for apparently no reason, but that is becoming normal and I’m quickly learning to incorporate that as part of my daily reality. I’ve managed to lose fat and gain muscle, which is a good thing in many ways, but I have a great deal of difficulty eating due to a lack of appetite attributed as a symptom of Lymphoma. I am always mindful of getting quality calories, take an iron supplement and work at remembering to drink a nutrition shake everyday. It isn’t the physical issues that are getting me – it’s the all the rest of the BULLS#%$! I AM FEELING THE NEED TO BREAK THINGS (I won’t because then I’ll probably have to pay for them and I’m a lady and all that SH#$)

Yeah, not at all a good day. This isn’t my proudest moment of sharing with the “pixel-verse”, but it is about as real as real can be!

I’m Mia and I seem to blog by nature. I welcome e-mails and comments. (sciencegirl99@excite.com)

For anyone who happened to notice the prose that I place in many of my previous blog entries – usually at the beginning and starting and ending with three periods (… bla, bla, bla …) and who have also happend across this “About” page, I will explain the best way I can.  I have been blogging for about 11 years and I had been in the habit of placing some form of prose in my entries. I felt creatively compelled in such a way that I seemed “forced” to find ways to release it all from the confines of my grey matter. I found that creating small bits of prose on the fly just prior to typing my entry was cathartic and increased my creative mojo.

As has been the case with me, for the last 12 years of blogging, this blog may change and morph. Incarnations might be born and die. I have many of the archives of every entry I’ve ever made in all of my former blogs (or online journals). Some day this year I hope to have  put them (my archives that is) all together on my two WordPress.com blogs, but until that goal is 100% complete – here is incarnation number 5.1. Incarnation 5.0 is my other blog known as Singing from the Crease – which is specifically targeted to contain my thoughts about my love of NHL Hockey. Check it out if you’re a fan of the NHL, goalies and/or the Washington Capitals. GO CAPS!

Any photographs found in either of my blogs or at OurStage – where my music is kept for those who might want to have a listen, are photos that I have taken, unless otherwise stated and credited.

I am a government contractor for the Department of Homeland Security. I also have occassional consultancy contracts with hockey organizations or individual players, mostly netminders, in place when time and opportunity present themselves coincidentally. Let’s just say that I am a behavioral specialist and all of my contracts invlolve some aspect of training, psychological and socio-cultural insight, mostly in team/group cooperative dynamics; natural human movement patterns and learning. As of 10/13/10, I have closed-out recent hockey related consultancy contracts and am seeking new opportunities in that area, plus I am now seeking a full-time contract to replace my current full-time work with the government, as the original 3-year deal may not be renewed next year.

Until recently, I technically lived in a barn (okay – so it’s a milk house) with my rescued cat, Emma. Emma and I have had a lot of tragedy and unfornuate circumstances in our lives over the last few years and that’s why we lived in a barn. Many of my posts since 2007 can give you more insight on that. I often refered to my very small living space as my “Hillbilly Efficiency”, the “Barn Condo” or the “Cell”. Emma has a bee-bee in her armpit, asthma, a heart murmer. Plus, she has an intersting personality that can only really be described as cat “autism”. Regardless of all of that, she is thriving and she brings me great happiness and joy everyday. She has come a long way and I couldn’t imagine my life without her. She liked the “Barn Condo” a lot, but is getting warmed-up to our new residence where she has my housemate’s young kitten with which to play. We’re both survivors, but she’s much cuter than me and her medical bills don’t quite hit the levels mine have.

In 2005, I began having medical problems that could not be specifically diagnosed. To date, many of the problems still exist and have no official diagnosis. Just prior to to the start of the National Hockey League pre-season, I discovered that I have Lymphoma (blood cancer). I have had an unexpected visit to the ER and numerous tests that I am having difficulty paying for, even with payment plans through the providers. The health insurance through my job is not excepted many places and costs me the full amount each month as my company does not offer to pay half or full insurance premiums.

I had an outpatient procedure on October 12 to make sure I do not have any sort of cancer affecting any of my upper or lower GI system. The results of the biopsies are pending, but nothing abnormal was seen during the procedure. I will be seeing an Endocrinologist at the end of this month, where I will also have a full MRI and probably another type of scan where it will be very easy to see if internal lymphnodes are swollen or look abnormal. Having that information will help determine what stage and catagory of Lymphoma I have. Since I have no choice but to work a full-time job and I was already not up to par, as some may say, the exact diagnosis and 2nd opinions will take a great deal of time to obtain.

For now, I have a basic Non-Hodgkin Lymphoma (NHL) diagnosis based on symptoms, blood work and the elimination of other causes of my symptoms. One of my sypmtoms (a.k.a. “Lymphma Itch”) is usually related to Hodgkin Lymphoma, so there are tests to be run to rule Hodgkin Lymphoma out completely as well.  I received word on 10/13/10 that there are no enlarged B cells or “follicles”, so a few types of NHL have been removed from the list of possibilities. A mass was removed and sent for biopsy, but that mass somehow got lost. Don’t ask me how that happened, but that seems par for the course in my world (let’s see how many times I can use cliches with the word “par”) 🙂 I will have to schedule a needle biopsy to get samples from a mass located on my neck.

I have very little sick time left and can’t live on short-term disability, so the doctor’s appointments have to be spread out and I cannot rush anything. I also may get stuck paying three months on a lease for an apartment into which I am now unable to move. The legality of that may be questionable, but preliminary internet searches on the subject indicate I might just be screwed. My vehicle (a 2000 KIA Sephia that’s now on it’s 7th owner – gee I wonder why so many people let this beauty go?) won’t last and costs too much to own an maintain, which happens as a result of EXTREME interest rates (18% seems to fit that bill in my mind) imposed on those who are forced to file bankruptcy due to illness (I’m one of those people). Many factors are keeping me from getting a solid diagnosis and plan of attack, so I am not receiving an chemotherapy, radiation therapy or drug therapies of any kind as of this blog update.

I was asked to keep some part of my blog updated with my progress and health status by several hockey and/or music fans who were kind enough to reach out and show concern for my well-being, so this is where I will put updates. I’ll have this page linked on this blog and my other, hockey focused blog and I’ll do my best to keep it current. I may not be pissed at the universe for giving me yet another challenge with to contend, but I am REALLY PISSED that I will most likely end-up dying because I can’t get where I need to get, pay for what I need and I’m angry as all hell that people who are far weaker than I have probably lost hope, because insurance doesn’t insure anything other than a profit. I better not get started… peace-mia

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