Tuesday, December 29, 2009
Wednesday, December 23, 2009
I gave my multi vials of blood and by the time I was sitting in the exam room the doctor could chat about the numbers on the screen. Most numbers came back good - liver, kidney, sugar, etc - but the hemo count (my main baby) has dropped back from the 14 in late September to 11.
He asks, "Have you been feeling tired? (Crap!)
"yes, a little, but I assumed it was running full throttle and the season and..." (Crap!)
"I will order some extra tests of Bs and Irons too" (Crap!)
"It maaaaay be that when the last of the drugs left your system your body has struggled to take up the task of making good blood on its own. This may have been temporary and we will see it improve as you body gets stronger ... or it may mean that we are looking at one of the Mileo blah-blahs that mean your body is still destroying your blood and we will begin to talk treatment..." (Crap!)
"Don't worry yet because 11 is just below normal (12-15) and not necessarily a bad omen. Have a happy holidays, OK?" (Crap!)
"I want to see you in January again to test these numbers" (Crap!)
OK, tantrum is over. This is going to work out and I just need to concentrate on the positive and cut the Crap attitude! I can do anything .... I have God on my side!
Monday, December 21, 2009
Maybe that is where the fear comes in? If anything is wrong and I need to resume - anything - I am financially toast. Luckily, we had been saving for a bathroom in the basement and so had a little nest egg when 2009 hit. As of this paycheck my insurance at work went up over 100 more a month and thanks to city property taxes our mortgage has done half again as much as that. Some say I should have sued the 'old bad doctor' and there are times I wonder if I heard right when I listened to the inner voice.
Ah but then if I question that voice every time I cannot say that I live by faith can I. Faith is trust and I trust God will not leave me flapping in the breeze.
I think the only affliction my doctor will discover is that I did not loose the weight he wanted me to loose by the next time he saw me. Sorry. It is just a combination of work stress eating and the long run of holidays. Hey buddy-let's see you deal with what I deal with and loose weight. HA!
There, that felt good.
Friday, December 18, 2009
We went to Target and created photo cards for the first time ever. I ordered 100. I wanted to send to people I had never sent to, people who had touched me this past year, people who are keepers in my life...and yes, of course, some of those political people who reside in work or family circles. This may be the only one they'll ever get but it feels like a closure action, on the high road. Between the cards and the stamps, the cost is one of my gifts back. Right? No, there should be something wrapped under the tree for me. He insists. I insist. I smile because I am going to loose this one and ...even that is not important. I love him and if he needs to buy me something - that's fine too.
- I am OK with my hair now. It has stopped falling out and I have adjusted to the new look--and hats.
- Work is unchanged but I am redoubling my efforts to evolve so that I can endure. I actively try and look for the positive bits--what I can do, what I have accomplished, who around me are blessings (either partly or in their entirety), and the security of a job with benefits that provides me with food and shelter for myself and the man I love. Change does not happen overnight, only the knowledge that change must occur...the process is hard, but rewarding work.
- I have launched my art website. It is just a start but I feel good that I am finally moving forward, albeit slowly. No more being the servant who buried his talents and displeased the master.
- Dad has driven down from his home west of the twins, in 'da nort, and will be with my sister until Christmas day. The he comes to my house for a week. I am already grinning. True, we will have some grating and tension to go with the joys because I am his stubborn child and 3 adults in the house for a week is a trial, but more celebration than aggravation.
I am really, truly blessed and look forward to the new year with great joy and anticipation. It will be another wonderful year-perhaps even better than this one, and this would be hard to top!
Monday, November 30, 2009
Tuesday, November 24, 2009
"Say! How about, instead of getting a butch hair cut and being depressed, I pull out all of my old hats! I used to wear hats all the time. Hats are swell and they keep your head warm and - golly - winter is just around the corner. I have cowboy hats, knit hats, baseball hats, vamp hats, voyager hats, skunk-skin hats, Amish hats, pillbox hats, top hats...why you name it and I probably have one. Golly Gee sure! That's what I'll do."
OK, yes, maybe so. Not a bad idea. OK, but without the accent.
Monday, November 23, 2009
Except that I have lost about 60% of the volume in the last 30 days and although it is just a temporary loss as a result of the stress my body underwent last July, it rattles a woman's vanity. Just a couple years and it will be back...or so I hear. At least it isn't all falling out from Chemo ... it could have been that.
For most of my life I have had a lot of hair and all the way to my waist and I enjoyed being able to bun or braid or mop or whatever it. I like variety. I have never liked the maintenance of daily curling iron regimes - just not me. My husband trimmed off a foot so it is shoulder length now but really thin. If I cut it short I will need to style it or something and besides, I am heavier and older and wrinkly now and short hair will be so radically different for me - and it will be thin and wispy to boot. I am now obsessing about it and that is just vanity!
I never thought my hair defined me but I guess whatever becomes our norm becomes who we are and we build some degree of confidence around it even if it is on a subconscious level. Maybe I need to reinvent that part of me?
For now I think I will just cry some more, OK?
Wednesday, November 18, 2009
Don't misunderstand this post. I am not sick again or in some kind of traumatic spin - I just am in transition and need to decide on and act on the question, "who am I and who do I want to be tomorrow?" I feel like a 12 year old again.
Thursday, September 24, 2009
I am OK, and I am grateful.
Tuesday, September 22, 2009
Well, I am not in control and it is unrealistic to assume it could or should be fixed instantly. Besides, what is fixed, or even normal? It is this kind of skewed thinking that made me, an intelligent and self sufficient woman, become ensnared in an abusive relationship years ago and I should know better as a result.
The reality is - I am a woman, with all of the wonderful pros and cons of an earth bound biological creature ranging from physical maladies to emotional imbalances. Oh, sometimes I do it better - much like being more fit when I have been doing sit-ups or riding my bike. Other times I am out of shape because it is late winter and the holiday eating and the cabin-bound activities have left me that way - or I have been sick and it takes a day or a week or a month or several months to get back up to physical norms...or emotional norms. It takes time ... and discipline ... and patience ... and self forgiveness.
I am battling depression. I read the articles that told me that this weaning process from the medicines will cause depression but I still internalized the emotion. And I got mad at myself for it like I had control over the effects of powerful drugs, and their withdrawals. And I expected myself to be instantly right again without the long process of getting back in shape. Somehow I forgot that I would need to build my body and my mind back by doing exercises. I would need walk and do emotional sit-ups. I would need to find a new balance and a new normal.
And I am annoyed with myself because I just realized that I had told myself that if I were a stronger person, a wiser or more spiritual person, a better worker, everything would be great, right now!
Thursday, September 17, 2009
I cannot tell if the problem is that my new optimism was merely a chemical vapor built on medication that I am now being weaned off of, or a genuine flicker of my true, positive, core self that retreats when confronted by negativity. Either way, I need to get control pretty quickly or I am going to revert back to the angry and unhappy person I had become.
I want calm. I want optimism. I want balance. I realize that I should not expect either the people or the environments that are a part of my daily activities to change because I want them to. In all actuality, many do not need to change at all. Even if I could become a positive catalyst to those elements that are negative in nature, change is not fast. Leaving the negative environment is not the entire solution either because if part of the problem is my own control over how much negativity I internalize, I would only take it with me when I go and reinfect the new place. Besides, if leaving is the best plan for me, doing that would also take time and I need to stop the decline now, before it becomes entrenched again.
So I sit quietly and try to glue little handles to the good thoughts and feelings that remain from my near death euphoria so that I can hang on tight ... for dear life.
Thursday, September 10, 2009
I find myself thinking of the chrysalis of a Monarch butterfly. Unlike many other butterflies, the monarch caterpillar creates a marvelous lime green shell with gold dots that masks and contains the incredible transformation that it makes as it becomes a wondrous butterfly - an amazing butterfly capable of migrations over thousands of miles.
As I reread my last post I realize how frightened and desperate I was to leave a record in case I did not emerge from my chrysalis. But I did emerge. What I went through was as close to death as you can get without actually seeing tunnels of light and watching paddle dances from 6 feet over your own body. Close enough for me.
I won't relate it all here because I have told my story to friends and family in a variety of venues over the past several months of recovery. Most times the telling was done as much for me as for them. I am celebratory as I think of what I have experienced and have found clarity and order in the oratorical process, giving it credibility and structure like some Homeric adventure.
My perspectives have changed. My priorities have changed. I have changed.
Every sunrise reminds me of a statement one doctor said,
"If you had stayed home a couple more days, you probably just would have gone to sleep and not woke up. I don't know how you went this long. My thinking is that you were just too stubborn to lay down and die."
What if I had died in my sleep--in Chicago 3 days before--or at home the night before we went to the ER? What a selfish and stubborn thing to do to people I love.
If I had died ... if the music had stopped suddenly... that would have been the end to painting, music, colors, light, flowers, embraces, smiles, etc. in my life. Yes, I do believe in eternal life but to shortchange this life in some kind of complacent 'betting-on-the-come' attitude must surely be an affront to God since he has supplied us with abundant blessings and talents to use in this one. Suffice to say I am embarrassed and humbled and determined to do a better job with NOW - this earthly life. I do not want to get caught with regrets of the undone, or regrets for the unsaid, or regrets for the wrongs done to others.
In this process, I was reminded of the woman I was in my early twenties, who was open and happy and fearless and driven to live with passion and unfettered love. My relationships reflected it and my art reflected it and my life reflected it. I was unwaveringly positive and strong. I am not so naive as to think I can be that youthful woman again, but I am determined to regain as many of those spiritual strengths and enduring qualities as I can - and live my life as it was intended ... from here on.
This is the day that the lord has made. Let us rejoice and be glad in it. Absolutely. Then I will have few regrets.
Wednesday, July 8, 2009
- Late May. Healthy. Decide to go to the doctor and kick the tires. Prepare for a new adventure of job and diet and exercise. All tests came back exceptionally good except for triglycerides. OK. I will consider medication to speed the process.
- May 29. Started on Tril*ipix.
- 7 days on and I am struggling with side effects-bad ones-all of those on the 'call your doctor immediately...' list. Nurses take notes. No call back.
- I press the issue and call 2 more times. The afternoon of the 11th nurses leave message at home-"stop, you're overdosing. Cut the pill in half."
- I call back the next day to ask how to split a capsule--count little balls? The nurses tell me the doctor will call in another med instead.
- I leave for an out of town wedding on Friday afternoon and decide to take a break from bad meds and plan to start new ones Monday morning.
- Start new med Monday the 15th. Symptoms worsen. I start calling again by Wednesday. Stop med after Thursday evening and call doctor's office Friday morning to say I am done. If he disagrees HE can call me back. Med free June 19th on.
- At this point my pee is still the color of tea, my heart rate runs 138 if I walk over 15 yards, I am so exhausted I cannot raise my hands over my head to wash my hair, my ankles look like cantaloupes, and I cannot think straight so work is minimized. My fiscal year end is toast. So is my brain. I am pretty sure I am dying and no one is listening...except Ray.
- We have no air conditioning the next week so I left work each day by 1 with the 'too hot' excuse. No one questioned and I went home to bed.
- June 25th, one week out. Go to a bluegrass festival and continue to pump water and self medicate with what I consider to be logic. I nap alot. I wonder how much damage is permanent.
- 29th, 11 days out. Staff all say I look so awful that they're past worried. I am now the color of a ripe banana and peeing tea. Calls resume to doctor. No response.
- Wednesday I crash his office and force an appointment. I am due to go north camping on an island and am concerned about dying where the ferry access is 45 minutes. Besides, I need to know how long before this passes?
- Doctor walks in room and is floored. Jaw dropping. I have no differentiation between lips and cheek-it's all yellow. Bottom line of what he tells me is-"...if you had not stopped when you did on June 19th you would be dead. You are in liver failure and kidney failure. You are one of the exceedingly rare individuals (1%) who cannot take anything remotely akin to a statin. Statins will kill you. I am so sorry." That last part was repeated numerous times.
- No, I am not a litigator. Sure I have a case but this is between he and his staff....and he and God. I did not tell him that.
- What now? He said it will take a month to begin to recover. I take control of my health and am eating natural diuretics to shed the water (asparagus, brussel sprouts, green tea, cranberry, etc). I am eating a liver recovery diet (as if I had hepatitis) so no organ meats, big dairy, caffeine, pop, etc. No alcohol for a year.
- I am $350 into a national library conference that starts this Friday night and I have no idea if I can walk to a shuttle buss? I am so mad I could scream but too tired to. I am now praying my job search efforts actually fizzle because I couldn't even if I wanted to.
- I must concentrate on trying to get through each day. I must try to get enough done so as not to loose my job. I must hope that I can rebound and do all my year end reports before my boss comes back on the 25th. I must keep on praying. All things are possible through Him.....and I believe in Him.
- The doctor said that everything is reversible. I pray he is right - although my faith in him or any medical folk is pretty transparent right now.
Pray for me. It is the only thing that I know is certain to help. I will work on the rest.
Tuesday, June 16, 2009
Maybe I am not destined to write a blog? I don't immediately turn to this venue when I need to process life. Instead I curl to the inside to introspectively sort and plan and address events, good or bad, and perhaps I am too private to expose that process to others?
So once again I offer a small list of life's milestones to act as markers and perhaps lend some explanation to you, the reader.
I have stopped doing all art. This is not just a real shame - it is a cyclically adverse detriment to my survival. It could create a disconnect - a virtual chasm - between me and all that does work well and make me who I am.
My Grandmother died. I dearly loved her and she will be sorely missed. To be realistic, though, she was 108 and had a wonderful life and I could not hang on forever. I will see her again. It does remind me that life can end at any moment so we should not tarry but go forth and do... and be... and to thine own self be true. She was.
The stresses of my work have begun to manifest in physical ways and I am trying to acquiesce to my Dr.'s consult and take pills for one of the issues. Not a bad intent except that we are now on med #2 in our attempt to find one that works and that I can tolerate. As a result, I am 3 weeks into the process and I am still almost incapacitated by the side effects. My brain is mush, my muscles all ache terribly, I am so winded I can hardly walk down the hall, and my heart pounds at 130 beats a minute when I do. It's like I am having a heart attack. If my quality of life is so adversely effected then perhaps I would be better served to stop this blind dart game and gamble with the risks?
I am exploring new opportunities to enhance both of my professional toolkits. Whether I stay here or not for my library career will be determined by others - but I must look out for me and mine. I need my life back. I need my happy back.
Writing happy thoughts can certainly help correct a mis-perception and realign ones thinking towards optimism, but, it can also make one a Pollyanna ostrich with her head in the sand. I am inherently a happy person so I just need to pull myself up and move on so I can be myself...my real and happy self. I need to feel genuine again.
I cannot predict when I will write again but I don't think anyone is following this blog anyway.
Monday, February 23, 2009
So, what about all of these missing entries? I can't just epistilize ad naseum or I will become grumpy in the typing of them and defeat the whole purpose of this task. I could note them with out fluff but that is a bit provincial and bland. Still, it would let you know I had been paying attention...
- Painting buttons. Who knew that fabric artists were in need of someone with the skills to paint in small scale, in a utilitarian manner, to embellish their art form. Who knew?
- Give myself away. I donated a little watercolor to an art gallery for their auction to raise funds.
- Do more than expected. I have tried to be a conscientious employee and stay a bit longer than I need to, do a little more than expected, and be a little more helpful than deserved.
- I have attended several workplace social functions and found the good in them, either through the people who were in attendance or in the pure ideal that I am employed when so many are not.
- Dived into social networking and became a member of the big FB. whoa! Fun but a genuine time vampire so I am now learning how to reign it in and not play during working hours. Most assuredly I am not going to get sucked into all of the infernal gifting that is such an annoying and adolescent part of it all. Can't we just say hello and put a verbal arm around each other's shoulder when it is appropriate? Oh, oh....I feel a curmudgeon coming on. Stop it.
- Spent a loving weekend in the big city to the east celebrating my wedding anniversary. It was good. I had fun. I am still in love after all of these years. The rest of that one is all positive and will stay in my heart.
- You know, I could actually go on and on because that is what happens when a person begins to count their blessings but now that I have mentioned my sweetheart, I need to go home to him.
Be well and be happy... and God bless.
Thursday, January 15, 2009
When I was a child I loved to read animal and adventure books by London and Kjelgaard. Their books took me places I loved to go and most of the settings were away from towns and into the forests. They often took place up in the north lands of Canada or in Alaska and when London talked about how bitter cold it was I was always entranced because I could not completely comprehend cold beyond southern Illinois. Cold there was not going out without a coat in January and rain usually turned to sleet or ice. We hoped that lone December snow might happen for Christmas and Easter meant we were assured of forsythia and daffodils and lace anklet stockings with lace around the top.
This morning, as I walked out to the truck, I thought about those books by London I had read as a child. I remembered how he had said that it was so cold that when the man spit that the spittle had frozen before it had hit the ground. The air could be sharp and cutting and you had to respect the cold because it would kill your fingers or toes so fast that you wouldn't even know it was happening. I remember how the writing gave me images of blue and gray shadows and of dark sleep lurking just out of peripheral vision and of hearing that was heightened because of the cold air. He wrote of a love and a fear and a respect for the environment that I have come to share.
As I sat in the truck warming up the engine I smiled to myself and remembered . . . and can't really say if it was my layered clothes or my memories that made me warm and comfortable right then. Yes it's cold, but I wouldn't like living down south nearly so much as I do up here.
Monday, January 12, 2009
Saturday, January 10, 2009
It will be a good day. Dad is home safe. One of my dearest friends had successful surgery yesterday. Two other dear friends may drive to our town today (roads permitting) just to play with us. My husband is a true blessing every day and I love my two fur children. Life is good.
Thursday, January 8, 2009
My Dad is on the road today driving back to his home up north. His route crosses several state lines so I am pretty happy that the weather is fine. Tomorrow, his original departure day, we are anticipating an Alberta clipper with snow all day and he would have been driving straight through it. Bad. I would worry for anyone dear to me but he is 86 so I am probably extra protective. As it is, he has checked in periodically and he is almost there. Thanks, God.
All in all I feel quite a bit better today. Despite several irritating moments, I do not feel as combative and sensitive. Perhaps it is the lack of sugar or perhaps it is a renewed determination to let things go, but I am doing OK. I suspect trying to make behavior modifications is similar for anything that has a habitual hold on mind or body, be it addictive substances, food, drink, or attitude. For years, I have been on such a progressively downward spiral that anger, depression, and hopelessness have become commonplace. In a way, it seems a reasonable concept to yoke my endeavors to loose weight and loose the negativity into one push, because both take vigilance and perseverance to become the new foundation that all else rebuilds on. Onward and upward.
Wednesday, January 7, 2009
Tuesday, January 6, 2009
I am no exception and I have thought quite a bit lately about dieting, my job, the economy, and starting a new blog with a new bent, motivation, and tone. You see, I believe that perspective can be altered by attitude and attitude can be redirected by the manual exercise of repeatedly focusing on the positive. Christians count blessings and zen masters reject negative energy, so it appears that the concept is an old and viable one - this focus on the positive. I want to begin again and this time be happier.
True, I cannot go back and undo all those things that I wish had turned out wrong, and I can't just create my own version of the witness protection program without loosing the good parts of my life so far. What I can do is try from here forward to do things the way I know they could be done. I can look to the good in people, take note of all of the beauty around me, and make a concerted effort to strengthen the positive aspect of my nature. I believe that then my perspective can swing back toward positive forward motion.
This is my goal, my new year's resolution - to get back on track becoming the best version of me that I possibly can by pulling my mind, my body and my talents into a more cohesive and well aligned spiritual being. I know that I will be happier for the effort and I suspect that anyone who knows me will be happier too.
Read along if you like. It is just one woman's attempt to effect her life and who knows, you may discover you prefer the positive too? It can't hurt.