Sunday, October 25, 2009

What is a life worth ?

Morning everyone !!

I have been pondering for a couple of weeks now. How does one put a value on one's life? Why and/or how, does one judge what someone elses life may be worth? I guess I write today based on a conversation that came about yesterday.

I am one of six children. Since the passing of my mother, and quite frankly, long before that, we all seem to be in our own little worlds. I having somehow been placed to be the caretaker. At one point being told by a brother that it was my job as the girl. Who the hell wrote that rule I would like to know?? In any event, I did take care of my parents, and have for seems like too many years now. I would take care of my mother again, bed ridden, any day, as I loved her tremendously, had respect and admiration for her lifelong strength in dealing with multiple issues, many of which my brothers have NO CLUE. I will be the first one to say that I was raised in a dysfunctional home. With that being said, I now feel, that I will no longer be the caretaker, not for my father, and certainly not for my brothers. We were all raised the same, in the same household, I am sure that they have their "issues" .... WE ALL HAVE ISSUES !!! When you reach the age of 50, pushing 60, and you still hold a deep grudge, for whatever reason, that is YOUR issue, not mine. For the one who claims he was on my mother's "whole journey," GROW UP. It is not all about you, it is not poor me, it isn't what you did or didn't do, and when the chips are down, own your own shit, and stop blaming everyone else.

Okay ... LOL .... now with that off my chest. Lets get back to what makes a life valuable.

I am not a rich woman monetarily speaking. I feel that I am exceptionally rich in the people I have as a continuum in my life. I am sorry to say, that my siblings are not, nor have they been, a continuous influence in my life. I own my own shit. I know I made mistakes. I married to "get out" too, a decision I may rethink in hindsight, but then, I would not have my precious and wonderful gift of my daughter. Yes, my daughter, who has also taken on responsibilities that are not really hers to own. She is totally responsible, she pays for ALL her own bills, her portion of the rent, her car, her insurances, contributes to the maintenance of her grandfather, etc. I am curious as to how many of the other grandkids are even aware of what their own parents may have sacrificed for them, to go to college, have a car, live perhaps rent free. Out of all bad situations can come a very positive outcome for future reference and guidance.

What I am trying to say, is that I feel that in my recent undertaking, I too, am deserving of being a little selfish in wanting my life to be extended for a few more years, I would like to say at least 20 .... that would only make me 66 years old at death. Now .... whose decision is it to say that I should not undertake the opportunity presented to me at this time in my life? Life as I know it failing rather quickly since the death of my mother, and continued monitoring of my ever demanding father, to be a little selfish and rid myself of the toxic relationships that hinder my decent health.... I think that one belongs to me.

I realize that the fundraising efforts set in place by my daughter and coworkers is a gesture I could not begin to repay, but I am ever so grateful that people in my life on a day-to-day basis find that my life, and the things I bring to theirs is worthy of say .... $20,000 ..... hell it costs that much to give birth ...... and so much more than that in a lifetime to raise a child.

In a nut shell, there are laws against elder abuse, negligence, consequences to be paid for all of life's actions. I, at this point in my life, am not willing to lose my house, my car, my job, or my life, risking the safety of my father, or those of strangers in the event of some accident, because others don't want to see the "BIG picture" or are so incredibly pissed at the past, the present, and a reason for the future I guess, that they no doubt live life in a hostile, toxic environment. We are all human, everyone deals with things in their own way, some healthy, some not so healthy, I too, had to learn that lesson, and not in such an easy manner. I am sure this posting is going to piss off some folks, but perhaps, open eyes to the fact, that what and how you live your life, does not rule the way I live mine. I have a conscience, I like to sleep at night, I do not go out of my way to lie, tell stories of untruth, or to intentionally hurt those I care about, or even those I don 't know. Life in today's times, are difficult enough without holding onto these toxic feelings, it boils down to the fact that it comes time to grow up, realize that certain people are never going to change, let go of past hurts, try communicating instead of blaming everyone else for what is wrong in your life, and learn to appreciate the small, everyday happenings the God offers each and every one of us.

I am being offered a new lease on life, will I make the most of it, without a doubt. I am still going to care for those I love, I will just learn to distance myself from the repeated toxicity of negative talk and reactions. I know my mother loved each and every one of her children, in spite of their differences. I also know, without a doubt, that at this time, I don't think she would be so proud of certain behaviors. For me, I know how much my mother appreciated me, loved me, and supported me, in spite of our differences, she also taught me how to disagree with others, and not hold a personal grudge because opinions differed. That gift alone, is worth more to me than any other lesson life has to offer.

I am about to venture on a journey of unknown outcome, hoping for a bright future, a longer future, and a healthy future so that I may watch my daughter marry, earn her degree, flourish in her career, and perhaps give birth to grandkids (I can really wait for this last one, I don't feel old enough to be a grandma yet :P) I would like for those future children to know who I was, what I stood for, what I did with my life in the face of extreme difficulty at times on many levels. I chose to overcome, to win, to be not a victim, but a survivor with smiles and laughter, even when it hurts. Through tears, can come a bright tomorrow and a better understanding of who we are, and how we impact those around us.

Have a wonderful day !!
Peace and Love
et

Thursday, October 22, 2009

It went very well today

I had my appointment today ..... I sometime feel like I have some sort of love affair going with my GYN's office and staff .... LOL .... another two hours there today, I am a regular compared to most. The doc I saw was pleased with news he gave me and faxed off the last of documentation needed for the transplant. I am now only waiting for one more doctor to get his documentation either to me or faxed to the team. It is getting closer to receiving the date of meeting in San Francisco.

Each step closer I get, I seem to get a little nervous as to what might come of all this. I am sort of running out of options for methods to manage my disease. This seems to be my last hope of extending my life in a healthy, vital manner. Always having been a very independent person in nature, I can't imagine what my life may entail if I were to lose my sight, lose a limb, organ failure, the list goes on and on, and as I age, having lived with this disease for 37 years, those odds seem to lose their favorable odds. I know that some of the choices I have made along the way were not in my best interest and that is my own doing. However, I have worked very hard to stay on top of my health, cope with the stressors that have been dealt me, and to do it with little to no impact on those around me. I am saddened to say, that no longer happens and really, what can the dog do for me when it comes right down to the dirty???? I have to keep the faith, learn to keep breathing, and take it all as it comes. The breathing part can be an issue sometimes..... Hilly says I have a tendency to hold my breath when things are stressing me, I need to stay focused. Still have commitments to tend to.

Anyway .... perhaps this weekend I will try and touch on some of the deadly aspects of this disease and how I got to this junction in the road of life. For now, I have work to complete here and I could so right this minute put my head down on the keyboard and fall asleep.

To all, enjoy your evening!!
et

Been out ....

Morning all my loyal followers !! ;P

I haven't posted in a while, was out sick most of last week with 5 coworkers .... all with the "CRUD!" Really took it out of me. Went back to work this past Monday, barely got in my hours and got home, and was out cold by six o'clock Monday and Tuesday nights. Just completely wiped out. I think I am on the up-swing. Got my flu shot this week, arm is still sore, but worth it if I don't get it again. I had a case of the flu over Labor Day weekend ..... that so totally sucked.

Anyway .... I have a doctor appointment this morning to have some followup testing done. I am almost there with the paperwork retrieval. This process has been sort of time consuming in all the calling and followup required, but on the whole, ALL of my providers have been exceptionally helpful, supportive, and on top of getting results back to the transplant team. I am very happy to report that. It has been sort of a wake up call for me, I too, have a denial aspect at times in which I try to ignore what is really there and plug on with my daily commitments. Lately, however, it is harder and harder for me to ignore what my body is screaming at me.

All I can say for today I guess, is that this whole experience is going to be incredibly humbling being someone who has never really been a fan of asking for help. It is such a totally eye opening, heart opening experience to learn that people really do care, that society and community can come together and be such a gift of love and support. To ALL ..... again, I thank you!!

Have a great day!!
et

Saturday, October 17, 2009

Fund raising

"Fred" aka Hillary, as now with her own visual of what's going on, I sort of wanted to protect her privacy. She is off and running with the fundraising efforts. She coordinated with my boss and coworkers a hugh yard sale event. She was able (with her first handout) to secure a storage facility donated to us by American Storage here in Prescott AZ for two months and the yard sale set for December 12 to be held at one of the parking lots ( that is my understanding at this point anyway). I am not really in this big loop, but I am so very proud of my girl and the support of my friends. Follow her efforts on her blog at

http://fundraising4hope.blogspot.com

Friday, October 16, 2009

What a week !!

Hello all !!

What a horrible week it has been. Big project at work that would of offered unlimited overtime went bust due to poor infection control. Half the office was out either all or part of the week due to some sort of virus going around, and I came down with it on Tuesday afternoon. Started to get the scatchy sort of cough at the back of my throat, tried to ignore it as I had to take my Dad to the doctor, and many hours ahead to complete the project. By 1:00 am I was hacking like none other. By Thursday, I was down and out hard on the coach, "Fred" went down as soon as she got home from classes, and the dog was down from 11 that morning for more than likely, eating too many grasshoppers!!! Anyway ... here it is Friday, my upper abs feel like I have been working out all week, which we all know is so not the case. .... LOL. Today was the first day since Weds. that I actually put on a pair of jeans. I am feeling so very drained.

So ... I think the weekend is going to hold some much needed rest and "puttering." It will all still be there next week.

Okay .... well ... got an email from the transplant nursing head, or whatever her title is (I am very foggy, and weak right now). She is very nice, and has a wonderful sense of humor. Which of course I had asked her about in our last conversation. I really do appreciate a sense of humor when having to deal with all this medical stuff, it makes it a little easier to take, and let's face it, some of the manners in which they go about things, you can almost see what they are thinking, might as well voice it, get it out on the table. At least that way we all get a laugh and I am not viewed as completely nuts!!!

I got some more of the needed information today, so that will have to go off. I had to cancel a doctor appointment this week due to being sick, (How much of an oxymoron is that?? ;P) That paperwork still needs to be FAXed and just pulling together the last couple of pieces .... and continuing to hold out hope. I know this is just the beginning but if we don't get things moving soon I fear I will lose more of what brain cells I have left. (Imagine, and it's not even due to anything illegal....LOL). The loss is due to multiple low blood sugars, dangerously low blood sugars, as low as 28, recently most have gone to 36,38, 32 ..... still .... WAY too low. With each episode like this, the brain is at a loss for oxygen due to the fact that the cells cannot metabolize as they should. Glucose helps the body metabolize, using the glucose to energize the body, when that cannot happen due to too much insuling in the system, other parts of the body begin to break down. I will try and make this clearer in other posts. Bottom line, too much glucose, not enough insulin, ketoacidosis; too much insulin, not enough food (carbs) to counteract results in low blood glucose levels, causing the body to begin burning muscle, than fat, and depriving the brain of oxygen.

Right after I gave birth to "Fred" I was taken to the ER on multiple occasions in the first couple of weeks at home, (after spending 8 days in the hospital). I was hit so hard by these low blood sugars that I was coherent one minute, and laying on the floor the next. One time, on top of my newborn baby girl, and alone. When the so called husband finally arrived home, (I was passed out) I was to blame, and basically he called me a bad mother, two weeks into being one). I was told these were seizures, the next one, so resembled such. I could hear, see, but had lost all control of the things that people WANT to be in control of, especially at 25. I could not move, had lost my bladder control, could not talk, and was in a seizure-type low blood sugar and again, taken to the ER. Upon arrival in the ER, to the same ER doc I had encountered at least twice prior in this week, he informed me in an arrogant tone, that "Everytime you do this, you are killing off brain cells!" ....... Like I was freaking doing it because I was having the time of my life!!! ...... I will be the first to admit, in all my years of having to deal with the medical community, I can honestly say there have only been a handful of doctors that I would have just as well would have slapped than listen to them spout off thier MD intelligence without any sort of human compassion or looking past what they see in front of them. That there are times, when people have no control over what thier bodies do, in spite of what they might do to try and prevent these episodes.

Trust me, as a young child, teenager, and right up until I was in my early 20's, I did everything possible to keep my disease to myself. I was very .....I don't know if you would call it cautious, or just that I didn't trust people very easily, but I did not want to be treated differently, like when I was in grade school. Well, certain people have been with me for a LONG time, the ups, downs, and all the in betweens. Others, they came for a short ride, and decided I was not worth the effort on thier part to invest too much time in. That is okay, some of them I don't think I could have taken for any length of time but certainly taught me about myself and certain situations. KARMA ..... ahhhhhh ...... look that one up !!! ..... LOL ..... the whole, "what goes around, comes around." ...... I believe in that sort of stuff and thus far, has proved to be true on many levels.

Okay, well ..... I have some cleaning up to do having been laying around trying to regain some strength from being on the couch for 3 days. I am still very tired, and still coughing, but not so bad as I had been, I think I can actually feel this thing moving through my system. At the bottom of this entry, you will find a link to a PDF file that compares the treatments/knowledge of yesterday to the treatments and trials of today in regard to type I diabetes, the barbaric methods used years ago to the discoveries of today. I am sort of proud to say that I have survived much longer than statistics anticipated, and doctors told my parents back in 1972 (I was born in 1963) so I guess that would make me fall into the "yesterday" of the article. I do remember the two types of insulin, the "peak" of the dose, the test tubes, which later proved so very ineffective (I knew there had to be a reason for my not wanting to do it .... LOL) I any event, read it, and ask questions if you would like. I will try and send you out a personal experience ..... God knows I have more than my share of personal experiences to share, and if for any reason, mine may help someone else or prevent another from making the same sort of mistake, so be it!!!

http://www.nih.gov/about/researchresultsforthepublic/Type1Diabetes.pdf


Have a great day and be well!!!

Love & Light
et

Wednesday, October 14, 2009

Everyone's down

No big post tonight. Imagine, me, the dog, and "Fred" all down with something .... FAST.
Started at work on Monday I do believe, didn't take long. I got a few hours in this morning, just woke up, hurt all over and coughing so bad it hurts.

Anyway ..... word has it several people at work were out today with the same thing, we were all plowing along on the rush project.

Enjoy your evening !!

PS: "Fred" got a storage shed donated yesterday for two months to store stuff for the mungo yard sale. With the help of coworkers, they are all hoping for a huge outcome. Moments like this that make me all wishy-washy.

later
et

Sunday, October 11, 2009

Sunday ......

Good Morning!!

I thought someone said Sunday was a day of rest!! LOL .... am just dropping in between rooms. I am just hanging out today, cleaning up. Tomorrow starts a new week and one which will no doubt be long and taxing on my body and brain alike. I will spend this afternoon trying to come up with stuff to pack in a lunch bag .... LMAO so that I don't scare the crap out of boss at anytime this week. I know it isn't funny, and I certainly don't do it on purpose, but sometimes I feel like I have to graze all day long just to stay on top of things. Complex carbs, something sort of sweet in the event of dropping, lots of water, fruit, salads are good, but it's getting sort of cold, so I like soups, etc.

Anyway .... I have lots to try and accomplish today, and like always, there doesn't seem to be enough time in a day to get it done, or enough energy in me to accomplish all I want in the short period of time. When my body screams at me, I have no choice at this point in life but to listen to it, and often times I don't. I push, and push, and push, and then me goes BOOM!!! ;P ..... I try to do all my pushing on Friday and Saturdays, as then I have Sundays to recoup before going back to work, not always the case.

So on that note, I will try and do some educational entries this week, keeping them fairly short, due to my work schedule, but the rest of the paperwork goes out this week, so hopefully, things will really get rolling soon. This to some might not be a great gift, for me, I am hoping for that Christmas miracle .....

Wishing all my followers ..... LMAO .... I always wanted to start my own .... well..... thingy .... with followers and the whole 9 yards !!! ..... HAVE A GREAT DAY !!!

me

Saturday, October 10, 2009

FYI

Herro ..... hehehe ....

Just thought I would make a random request here. For those who have dropped in, looked around, did some reading .... PLEASE, feel free to introduce yourselves, make yourself known, if you want to go "en cognito" ;P ... feel free. Let me know what you are thinking about this whole venture, questions you may have, suggestions for a better tomorrow, personal connections, to me or a loved one with the disease... anything. It's only been a couple of weeks, and to me this is sort of like journaling, I could go on forever at times, not always with any real direction, sort of a venting process. So help me out here .... LOL .... ask away.

I look forward to connecting, reconnecting, and just meeting some new people through this process and educating as I go along. Mind you, this is only my personal story, I can only educate you all on what I know, (not to blow my own horn, but I know a lot!!) on this topic and a few of the ones that go along with it. Complications can be hell .... but ... I like to just plug on as the disease does not and has not defined me, it is just part of my life, something I must deal with on a daily basis. That is not to say I can't enjoy all the pleasures life has to offer, and most things others enjoy doing. Although, now that I am 46, and knowing my body's limitations, my adventurism isn't quite what it used to be ... but I am a hell of a cheerleader !!!

Just something to think about.
Again, enjoy your day !!
me

morning joe

Good morning all !!

Well ... here it is Saturday morning a little after 6, cause Maggie doesn't really care what day of the week it is, or that some of us might like to sleep in .... hahha ... at least til 8. Been up for about an hour, so I guess my day has to start pretty soon. I'm having my coffee, just checked out the news from around the country, and some world headlines, and of course ... my usual obituaries. I have always read the obituaries, ask a couple of people who have known me for years. I used to think they should combine them with the classifieds. You know, Mr Smith dies, leaves 3 BR condo on east side, 07 BMW, etc .... lol ... cut down on space, but today, they charge so much to print them that they don't hold the information they used to. I still find them interesting to read, not sure why.

My mind let me down again last night when I neglected to inform of my dental appointment. Geez ... I would rather be cut with that scalpel. I was in the chair for 2 hours for a cleaning, and they had to numb 3 quarters of my mouth to do it. I was numb until noon, having been in the chair from 7-9. I have to go back to have a couple of cavities taken care of and some restorative work on caps, etc. Transplant team indicated that dental work needed to be complete so that when they kill off my immune system, if an abscess or anything flared up in that department I would be screwed in so many words. So that is underway. An expense I really can't afford, but it should have been taken care of long before now anyway.

Expenses are going to be a tough one. During the course of the transplant and follow up year, all my medical expenses, medications, etc will be covered by the trial. Unfortunately, travel expenses, food, and lodging will not, there is no funding to provide that luxury. So "Fred" has begun to spearhead a community education fundraising campaign and has involved some of her coworkers and some of mine. It is so amazing to watch her spring to action. She too, has set up a blog to follow the progress. She has lots of big ideas and I have asked her to slow down, but she thinks this is the way to go and she is finding it exciting and a "happy distraction" for her at this time. So follow her along on how she is doing with this journey and the progress which will be made to accomplish the travel expenses. If more than is needed is acquired during the process, all left over funds will be donated to the JDRF at the end of the trial period. I know that the economy is in a bad way these days, and that people are struggling all over, but, I am a person who has always been very hesitant to ask for help, now I need the help of my life is destined to end sooner than I would like it to, and no doubt in a very unpleasant manner. So if you can help, or know of other ways to help please follow "Fred's" blog and drop her ideas. ANY sort of help will be greatly appreciated in taking on this journey. It is not my idea of a beach side resort vacation, (which I would really LOVE to have) but a trip that will perhaps lengthen my lifespan and help so many others that are living with or have been newly diagnosed to be one step closer to finding that ultimate cure. I see it as a win-win for all who get involved, not just to help me, but to help mankind. So, again, thank you for all of your support !!!

Am off to clean up the kitchen, and start the laundry. "Fred" has a class this morning, and then we will be with my father for part of the day, or until one of us comes close to stroking out. Time is always an issue over there lately. "Fred" and I can only handle so much "Twilight zone" in an afternoon, hahhaa ... It takes a lot of mental prep just to deal with him for a few hours, and then we are both totally mentally and physically exhausted. Sad but true.

So ... you all have a great day !!
Get out and do something for yourself .... or .... stay in your jammies with a good book and just "hang" .... I like to do that once in a while ... rainy days are great for that!!

Enjoy !!!
me

Friday, October 9, 2009

TGIF !!!

Another hectic week at work. The older I get, the harder it is to keep going for long periods of time. This week, I had two episodes of extreme lows, which as stated before, really take there toll on my body and mind, losing hours. On Wednesday night @ 2:30 in the AM my BS spiked up to almost 500!! That was incredibly painful, and the only conclusion we can come to is that it was a rebound high, from an extreme low. That threw an even more body bashing experience for me to overcome. Most of Thursday was pretty much miserable coming back from this. I went into work late, as it was almost 5 AM before I was able to fall back to sleep from the muscle and abdominal pain. When I got to work, everyone knew that I was not feeling well, my color was bad, I was sluggish, lets just say, "It ain't pretty." Co-workers were checking on me almost hourly, someone poking their head in the little window of my office door making a thumbs up or thumbs down sign for me to respond. My co-workers really are so incredibly supportive of me. I can't imagine why at times, I feel like I have a whole bus load of babysitters .... LOL. They all know how twisted I am, yet, don't hesitate for one minute to come to my rescue or do something so heartfelt. I really do appreciate each and every one of them !! I have been so totally blessed with all the friends I have made over the years. Today I got an email titled "PRICK" ... a coworker at the facility I was at yesterday, seeing me, wanted to make sure I was okay today, where I was at and who was around to check on me.... hehehe .... I had to respond with, "are you calling me one, or want to know if I have??" ..... as "prick" is how I refer to my finger sticks. ... :P

I was informed today that next week is going to be taxing on our department. As in I am going to have to do 12-hour days for at least 3 and perhaps all week. I hate deadlines, especially when they are due to someone else's lack of response. Oh well, this too, I am thankful for, as I always need the money, and to have a job where so many others have lost or don't have one. I also have a doctor appointment, and have to take my dad to see his doctor. So ... next weeks entries may be sporadic, if anything at all.

On another note, on Monday, I will be dropping my last envelope of information into the mail for the transplant team. Yippie!! My doctor appointment on Tuesday will FAX the information needed from there and I should be good to review completely. {{{{ fingers crossed}}}} I should have a call from them within two weeks. I was told by the nurse in charge that once all the paper work is in that it would not be long before I got the call to come and meet them, review, go over the protocol of the trial, the schedule for the following year, testing for type and match, etc. Exciting and scary all at the same time. I guess that is what life holds for us, at least it has for me. Sort of the "pick your poison" theory. Change is always scary, you know what's comfortable, do you stick with that even when it no longer works? I learned this when going through my divorce. I spent what seemed like months, on several occasions, sitting around staring at the walls, in my holey sweatpants, wondering, HOW. How would I take care of and provide for a small child, how ?? It came down to change, I could not help my husband at the time anymore than I had already tried over the years. People need to want to help themselves, and yet I continued to get "hurt" (in more ways than one). Was I scared?, you bet, petrified!! I knew it wasn't working, and I knew that it would never get better as it had only gotten worse over the years, in spite of the support I felt I tried to give him at my own expense. I do not regret my decision, for I feel had I stayed in the relationship, I would already be dead. That was something I was not yet ready to do, and here I am 17 years later and still fighting to stay in the fight.... LOL. I do believe that what we do in our lives is our own choice. This is my choice, and to have the support and encouragement of such a wide variety of people, friends, family, co-workers, medical staff, etc. is truly phenomenal. All because they like me ??? ..... LOL .... go figure!!! I have always tried to live my life based on the phrase "treat others as you would want to be treated." Don't get me wrong, I can and have put up a good fight along the way! I really am not sure what I have brought to people's lives that makes them so giving, caring, and supportive of me, but all I can say, is that I am the one that has truly been blessed!!

Okay .... well .... I hope everyone enjoys their weekend !! If you have nothing to do you can always come over and help me clean up the yard ... hehehehe ...... (can't knock me for trying ;)~

Later
et

Thursday, October 8, 2009

10/7

Hey!!

Not much to make note of today. I had a really bad night in which "Fred" wanted to haul me to the ER. BS spiked really high in the middle of the night, not really coming up with a reason, causing intense abdominal pain, nausea, and muscle rigidity .... that is the worse. In any event, by the time we got me back down to a normal range (average two hour rule) it was almost 5:00 am and time for me to get up, which I didn't ! I still feel like someone ran over me and am just totally beat! I did go into work for a few hours, then decided to bring some work home. Dinner is in the oven and I will be headed to be early this evening ... (sort of thankful it gets dark early now, less guilt on my part ... LOL). I have to be in the dentist chair at 7:00 am in the morning. This is also a requirement for the transplant, they don't want any sort of dental issue coming up when they kill off my immune system. That would no not be a good thing!!

Anyway .... timer went off so dinner is ready.
Enjoy your evening!!
me

Wednesday, October 7, 2009

Hump Day and Mental Health

LMAO .... Mental Health .... now there's a topic.
Might as well get this one out of the way early on. Seeing as I work for a mental health facility, have a few family members who have done thier life work in the field, one or two I am sure have been trying to analyze me for years and only seeming to discover ...... that I have a dirty mind.

Living with diabetes has been a tremendous juggling act for many years. When I was first diagnosed at the age of 9 I had all the usual feelings of disbelief, denial, anger (this one lingered for a long time), and the why me syndrome. I was not really accepted all that well when I returned home from my long hospital stay. Kids at school somehow believed that I was "contagious." I had just started the 4th grade when I was diagnosed, and kids at that age can be pretty tough to start with. Add me, and daily trips to the nurses office, or my insulin kicking in when it was no where near time for lunch, or having to leave the classroom for various reasons, like having a snack. I hate it!!! I didn't like the whole feeling different thing. I think this is where that chip began to develop into the "don't mess with me" attitude.

I did not realize until years later, the hell I put my mother through. For the rest of the family, my older brothers were not really around much that I remember, and the two younger ones, no doubt felt a little pushed aside, my father had a chronic illness and was no prize to deal with, your basic dysfunctional family of the 70's. Not that I will take blame for the way their lives turned out. My oldest brother was newly married in 1972, the next was a senior in high school and entered the Air Force, so he flew off within a year, and the next one, closest to me was still in high school, but had a girl friend, or two, or three .... LOL ...and also left for the Air Force right out of high school at age 17, that left me at 10/11. I just don't really remember them at this time of my life. I can honestly say I don't really remember much about life prior to being diagnosed. I did the whole dance thing, which I did for a long time, and managed to get through school with good grades. I was not a stupid kid by any means, but I felt very out of place, different and could never really put a name, or finger on why. (That near death experience at the onset played a huge part in how I was feeling, fearing telling anyone).

Needless to say, life went on, in a rather turbulent manner for a long time. I refused to give myself the injections that I had so proudly shown the nursing staff I could do on an orange (BFD) !! It was a whole different picture when you had to plow that thing into your own ass, arm or leg. I became increasingly more miserable and no doubt made my mother's hair whiter and whiter as time went on. At the point of my reaching adolescence, not only did I have the raging hormone thing going, which REALLY wreaked havoc on the system. Moody BITCH was a total understatement in my case, a friends mom once described me as "Jekyl and Hyde" in a matter of the time it took to go to the bathroom.... LOL. In hind sight, I was not the most desirable person to have around. I was sort of a loner, the class clown, yet bright, intelligent, and years later finding out intimidating to some. I knew how to entertain myself, and I enjoyed being around older people, or being alone. I had a feeling I knew why, but even they would irritate me at times. "Did you eat?", "Are you suppose to be eating that?" .... cut me some slack people and get off my ass was what I always wanted to respond to these sorts of statements.

At some point, I want to say 5th or 6th grade, my mother took me to see a psychiatrist, not being able to tolerate my moods anymore. (At the time, the results of blood sugar on moods, was not really clear.) My first encounter of several over the years, this one at her discretion, the rest at my own, minus one, that was a sneaky ploy. In any event, lets just say, I have been thrown out of not only a bar or two, but a couple of doctor offices as well. I was pissed at the world, and I needed to find my own way, on my own terms. I did pick up on some strategies to cope, but not with the help of this guy. I basically shut him down too. I learned to love my music, my dance, continue to enjoy the arts, animals, the ocean and I guess you could say I sort of secluded for a while. I went to school, but I always felt like garbage, somewhat alone, with the exception of my BFF who has been with me through all my bad stuff, and my good stuff too, all the way from Maine, since the 6th grade, a true friend. Mind you, back then, there were no glucose meters, no pumps, it was glass test tubes, take a whiz in a cup, every morning, a call to the pediatrician to get a dosage for the day, and the rest was sort of "wing it." In those first five years or so, I bet I landed in the hospital once a year for a week at a time. (The Edmonton Protocol discovered that the results of those long term effects of blood sugar managed back then were dangerous and so very inaccurate)

I sought psychiatric guidance again in my 20s during an abusive marriage, getting no real guidance from the Catholic church .... (this is autobiography material) and again when I began to suffer from nerve damage, and chronic pain in the mid-90's from multiple sources. The last psychiatrist I dealt with was a specialist in the practice of psychopharmacology. I worked with him for about 8 months, and multiple meds. At the end of our meetings, he sat across from me, scratched his head and stated, "I can't seem to help you, but if you ever get depressed, you come see me." WHAT !!! LMAO .... your joking right????

I have, as stated earlier, a very warped sense of humor and I use it at every opportunity I get. It has been documented that people who suffer from a chronic disease, or chronic pain, (I have both) suffer from depression. I have over the years suffered my share of depression as well. I miscarried multiple times, all depressive situations, I had a bad marriage, a cheating husband, emotionally and physically abusive (nothing personal against anyone, it's a fact), I had health issues, and ultimately, I was unhappy with my life. I have had to make choices, and I am the one who has dealt with the consequences of those choices. I am not claiming to be an angel, I did some things I regret, but on the whole, I came out okay. I am a survivor, I learn as I go, some of those lessons are painful, those make us stronger, they make us appreciate what we have. Strive to be more, be a better person. So when it comes to mental health, don't let it bring you down, think it through, pick the problem which requires the most attention at the time, acknowledge it, allow yourself to feel whatever it is you might feel, deal with it, and move on to the next. You will most likely find something totally amusing about the issue later on, or in my case, often times while you are in the midst of it. That whole Victoria Secret thing still makes me smile and laugh out loud (LOL) !!

Okay ... that is today's topic ... guess it is sort of a therapy for me as if I had the $$ I would be seeking a beach front weekend to cleanse my soul to renew my outlook, which has been a little down lately. I think some of it may be burnout !! We all need to take care of ourselves to be any good to someone else. Thanks to all my friends for laughing with me, we do it so well, and so often, and so many times, over absolutely nothing of any importance, just stupid things in life ...

On that note, I wish you all a wonderful evening!!

{{Hugs}}
me

Tuesday, October 6, 2009

10/5

Hi,

It is Tuesday morning, I will be working from home today as I have been rather ill for the last 18 hours, not sure if it was something I ate, or residual effects of the flu I had a couple of weeks ago. I was really knocked out by that, and the flu shots haven't even arrived yet. This whole flu thing sort of scares me at times, I get so violently ill from it that it messes up my whole system. In any event, I will watch my blood sugars today and try to get some rest in spite of putting in hours for work.

My new position at the clinic has added responsibility, and I push myself harder than normal to keep up and make things happen. I know I should pace myself, but .... I do enjoy my job, not to mention it pays the mortgage.

Emotions have been a little on the bubbling side as well the past week. Stress levels can also effect blood sugars, which is where my humor has come into play over the years. There are, however, times when I must let the feelings flow. (Usually, I consider myself the "pleaser" the "stuffer", not much really bothers me until it is time to blow). Yesterday was my father's birthday, and I am sad to say, with the exception of a phone call, I pretty much avoided him. My own feelings of one year ago to the day of taking my mother to the hospital where she never came home was weighing heavy on me. Yes, I went to work, yes, I took part, but deep inside me was a heavy feeling. A feeling of tremendous loss. My mom was my best friend, we talked about everything. She understood, and took part with my warped sense of humor. She herself had it!! Anyway ... this too shall pass. I feel her with me everyday, but I miss her physical presence, the ability to hold a heart felt, intelligent conversation, and end it with a huge laugh. I also have noticed within myself one of the things I miss the most, is holding her hand. It was our way, of telling the other, I understand, I love you, I know what you're thinking. In many of my photos taken with my mom, we are holding hands. Human touch to me is an incredible translator, a way of saying things, without saying a word and can be so very powerful. I don't consider myself to be a touchy, feely sort of person, but I do always hug those I care about, feel close to, haven't seen in a long time, etc. My way of sort of letting out a big "HOW ARE YOU" .... "IT's GREAT TO SEE YOU" ..."Thanks for your help, support".... "I lOVE YOU!!! " It's powerful stuff ... hahaha ... and I don't get enough of it !! LOL ... good thing I have my dog, Maggie. She loves to be touched!!

Okay .... well ... today's mission for me is to keep an eye on my blood sugars, when not feeling well like this, they have a tendency to go up and down, depending on how much I can get into my system. I will try and push the fluids today. To be honest, I am running out of stuff to drink that sparks an interest anymore. Water is always good, but really ......

I have to try and accomplish some "real" work today ... it will no doubt be a long one.

Enjoy yours, wherever you might be !!!

me

Sunday, October 4, 2009

The word is now out there

Sunday evening and I will be calling it a night soon.

I guess now that the word is out there, I should take this opportunity, and maybe over the next couple of nights, let you all know what the process may potentially hold.

The Islet transplant, is not an organ, but cells. They have proven to be a huge step in the regenerating of new cells that produce insulin. I will gather my statistics at a later date, for now, lets just ease some anticipation. The cells will be removed from a cadaver donation and injected into my liver in HOPEs of regenerating new cells. This process can be done up to three times during the trial with most patients requiring as few as the one, but most likely two. The cells will be extracted from the donor pancreas, bathed in a process while my immune system is "killed off" to ready my system for the cells, then injected into my liver to begin the regeneration process. Antirejection (immuno suppressents) will need to be taken for the rest of my life to prevent rejection). As Type I diabetes is an autoimmune disease, that was what killed the cells off in my system originally. My own immune system attacking itself, killing off the production of the cells.

It is my greatest hope at this point, that I pass the final phase of selection on my trip to San Francisco. I should know when this might occur in the next few weeks.

My decision to take part in this trial is that my blood sugars have now gotten to a point that there is no warning signs when I "get stupid" (language lesson to be posted in a day or so ...LOL)
or my blood sugars bottom out. "Fred" can tell you I am not an easy person to live with at times not knowing where I am or what the hell is going on, and losing several hours at a time due to this happening. As I have gotten older, the usual signs and symptoms of low blood sugar, like sweats, shaking, weakness, have all but disappeared. I now just go directly to "stupid" no coherent means of knowing where I am, who I might be with, loss of focus, not knowing what I am suppose to be doing, etc. Every time blood sugar drops below a certain range (mine has gone as low as 28 and I am still standing) brain cells are compromised. Now multiply this happening over a 37 year span and it is wonder I have any brain cells left at all. This of course poses many dilemmas in daily life. I hold a full time job, I work from home as well, not to mention all that yard work that doesn't seem to get done in a timely fashion making my house look not as pretty as I would like it to. LOL .... where are those men when you need them ??? (For those who know me you know there isn't one of those in sight :P). All joking aside, it has come to a point where I have been instructed by two endocrinologists that this is an opportunity for me to gain more time with life and hopefully slow and stop some of the progression of the complications that have settled in. I am so hoping for a new memory chip as well !!!

The last couple of years have been exceptionally stressful for me, taking care of my mom, and her ultimate passing, and now trying very hard to cope with my father (which has become an ultimate stressor not doing me any good in the health dept). The doctors I deal with (6 total on a regular basis) have all thrown their support behind this decision and have helped me get my records and paperwork into the team faster than most. That if I don't take this opportunity to quote my endocrinologist out of Phoenix at my last appoint on Friday was "these lows are going to kill you." Those lines rang similar 12 years ago when I went on my pump due to digestive complications. I was told to "put your affairs in order", damn, if only I could have had one !!! LOL ..... I refused to sit back and just wait to die. I researched, found the pump has advanced dramatically since I had "Fred" in 1989 and WANTED it!! My PCP at the time didn't think I was disciplined enough. I proved him wrong, and when I left his practice to move to AZ he had many patients wearing a pump, where he hadn't had one until me. It was a learning process for all that were involved. I continue to thank them for not giving up on me, allowing me to use all options available to me at the time.

In that time, I have gone back to school after being declared "disabled" in 1996 due to complications. After almost 10 years of being out of work and having read anything and everything I could, I declared I may be disabled, but I am not dead yet. My body my not cooperate as it once did, but I still have my mind and I would like to keep moving and going ahead until I crap out completely. Then have that big party.

I guess my point here is that people need a reason to get up in the morning. For me, I need to feed myself, my quest for knowledge on certain subjects has always been a way for me to pass the time. I have also had to use my humor, which as many of you know, has not only served me exceptionally well over the years, but can be in the very least, a tad bit twisted. I won't apologize for this, most of the time, I am just verbalizing what most are thinking and afraid to say. I can not begin to tell you how many operating room staff I have had laughing due to my twisted overview of a procedure or manner in which we go about "sedating" someone. In any event, brace yourselves..... LOL !

Ok ... well, again, for those that are looking to find more information, JDRF.org, click the tab "Research" and you will find info on the Islet Transplants. This will happen at the University of California in San Francisco and hopefully before anything really impairing for me occurs.

Well .... my pillows are screaming my name as 5:00 am comes early.
Thanks to all who have inquired this weekend and I look forward to having you along for the ride. Don't forget, I love to sing ... hehehe ....

et ;)

Saturday, October 3, 2009

Informational reading

I am so happy to know that this adventure has sparked such interest in Type I Diabetes and the complications that can come from it. For those that like to do this sort of reading, or for those that know someone, or have a loved one who lives with this disease on a daily basis, please check out the JDRF website (link off to the right). It has a multitude of information, including info on the clinical trials currently taking place, and research underway. There are also pages that include information on some of the topics I hope to hit on in the next year, i.e., being a kid, a teenager, giving birth, STRESS, relationships .... (relax, I won't go into in depth detail) I know some of you can't handle the "bad images" .... LOL ... that might arise.

On the serious side, the JDRF has been the foundation I have followed since my early 20's, they have made it their mission to find a cure, and they have certainly put all they have into the science and making it happen. (They were part of the trial back in the 80's when I was carrying "Fred" and going to the Joslin Clinic in Boston for my care). Please take some time and learn more. There is a huge difference in the workings of people who live with Type I vs. Type II, I am part of the small minority, take some time to walk in my shoes, then add "regular" life stressors to that and see what could be a potential result over time. (I have been at this for 37 years, already past the expectancy given to me in 1972). That alone, means miracles can happen. Let's take it to the next level!!

Thanks for reading !!
Enjoy your weekend !!
et

Friday, October 2, 2009

What a GREAT day!!!

No ... not because it's Friday, as I still have work to complete here from home this weekend.

I had such a mind-blowing experience today at work. I was with co-workers and my boss (I will refrain from using names at this point as to not jeopardize the privacy of those I am associated with) a wonderful woman, and likewise, addition to my life, called an impromptu meeting out back. I assumed that we were going to casually discuss some duty changes that have been occurring. To my surprise, it is said that the meeting was to brain-storm fund raising ideas to help me with transportation/hotel/meal expenses that will not be covered by the trial!!! I was so totally taken aback. I NEVER in my wildest dreams thought I would get the support and backing I have from these incredible women!!!! I am totally blessed with the people that have come into my life over the years. It was very hard for me to not break down balling this afternoon. The excitement that has been created, the concern, so heart-felt and concerning for me that I was just overwhelmed. I am not a real religious person, having been raised Catholic, and falling from the church many years ago, when my marriage came to an end. But, I can say that I consider myself to be a very spiritual person. I do believe in God, I do believe that things happen for a reason, I do believe that we will be taken care of in an afterlife of sorts. That how we live on earth, will ultimately reward us when we are done with the bodies we reside in here for something so much more rewarding. Therefore, I have over the years, been so totally blessed with the people that have come into my life, people who have shared my joys, laugh with me, as well as at me....LOL ..... I find myself so amusing at times, who could possibly not laugh at some of the things I say or do, without a thought? I don't blame them, I totally enjoy laughing with them, even if it is at myself. Let's face it, life is pretty funny if you thing about some of the stuff that happens, and for me, laughter has been my out, my way to cope with too many difficult situations to write about. (I am saving all those for my me-moires ... hahaha)

OK, well back to the meeting, I can't thank these women, and a couple of men to date, that have offered their support, brains, ideas, and whatever other adjective I may be missing to help me accomplish this journey. Without them, I would not be able to ease my thoughts of "how am I going to do this" they are making it known, they want to help. For that, I am so very grateful, and so touched, I am so feeling the love!!!!! and it means more than my words could ever express.

I am so thrilled at the conversations that this journey has sparked, in private homes of my friends. The interest taken in how this will effect my future, and my overall well-being, physically and mentally. These people, for whom I will be forever indebted to, have taken my cause to heart, they want to learn, they want to experience. I am not sure how they feel on perhaps a medical, mental, or ethical front as to what I am getting involved in, perhaps, some will post questions and feelings to learn more as we go along.

To all of those of spearheaded this initiative, my heartfelt LOVE and GRATITUDE to you ALL!!!
If I wasn't "special" before .... hehehe .... I certainly feel like I am "special" now.

When I arrived home from work this afternoon, after having to deal with my father, who has been wearing on both me and "Fred" over the past year, my daughter, "Fred" had a whole list of fund raising ideas and was so totally pumped with enthusiasm that the dog thought she was playing and began to get a tad rambunctious. It was so amazing to watch, I am not sure what to do with all these feelings I have swimming within me. I have never felt that I was anything special. I feel I am a good person, try to treat those I love with love and respect, a loyal friend, with a good heart, but that is about all I could ever offer anyone. An ear, a shoulder, a place to lay your head if you needed it, etc. I have received so much more in the friendships that I have established that these people have no idea. If they do, please know how much I value the loyalty, caring, humor, and human kindness that has been given to me.

Maggie is chucking a "nutty" to go out, so I will end here for tonight.
THANKS !!!! to all my angels .... for it is here on earth that we learn to fly!!! and my angels that have gone before me to watch over me through this phenomenal journey.