The Big "C" and perspective

Many years ago when I first met my Rhuematologist, she refused to provide me with support groups for SLE (Systemic Lupus).  I was only 25 when I was diagnosed and quite honestly scared to death by the literature I had been reading.  I was also diagnosed with Fibromyalgia and Raynuad's Syndrome. In the blink of an eye I went from jogging 5 days a week, playing raquetball 2-3 times a week and living a carefree life to taking multiple prescriptions and cutting out most activity because of the pain it brought on and all just so I could make it from one day to the next.  This all seemed a lot to deal with and I thought wow, maybe a support a support group would help.  My doctor disagreed.  She believed my positive outlook would carry me farther than others sob stories and pity parties.  I didn't listen to her and sought out a support group anyway.  It didn't take me long into the meeting to realize that while it was nice to meet others with the same condition, the outcomes really depended on internal strengths and weaknesses and that my doctor was right, I needed to focus on the positives.

Shortly after my visit to the support group, I walked into her office and held out my hand.  In it was an entire day's worth of medications, something like 30 pills.  I told her I refused to live the rest of my life like this - taking all these pills each day and enduring not only the symptoms of the disease, but also the side affects of the medication, especially because they predicted it wouldn't be a long life.  I anticipated her telling me that it was just what it was and to learn to live with it.

I was wrong, she jumped at the chance to help me change my life, lifestyle and overall perspective!  My college training and background is medical in nature which makes for an unusual patient.  One that understands - sometimes too much or just enough to scare yourself because you anticipate what comes next.  

Ultimately, perspective and attitude travel hand in hand no matter the diagnosis.  Along with that culture, age and personality play into every attitude.  But, attitudes can be changed and updated, it's entirely up to us.

To refresh your memory these are the 5 stages:

The 5 stages of grief or acceptance:

DENIAL - "this can't be happening to me". Not accepting or even acknowledging the loss.

ANGER - "why me?", feelings of wanting to fight back or get even with spouse of divorce, for death, anger at the deceased, blaming them for leaving.

BARGAINING - bargaining often takes place before the loss. Attempting to make deals with the spouse who is leaving, or attempting to make deals with God to stop or change the loss. Begging, wishing, praying for them to come back.

DEPRESSION - overwhelming feelings of hopelessness, frustration, bitterness, self pity, mourning loss of person as well as the hopes, dreams and plans for the future. Feeling lack of control, feeling numb. Perhaps feeling suicidal.

ACCEPTANCE - there is a difference between resignation and acceptance. You have to accept the change or loss, not just try to bear it quietly. Realization that it takes two to make or break a marriage. Realization that the person is gone (in death) that it is not their fault, they didn't leave you on purpose. (even in cases of suicide, often the deceased person, was not in their right frame of mind) Finding the good that can come out of the pain of loss, finding comfort and healing. Our goals should turn toward personal growth.

Get help. You will survive. You will heal (at least emotionally), even if you cannot believe that now, just know that it is true. To feel pain after loss (loss can also be a chronic illness or even a situation where we do not have control) is normal. It proves that we are alive, human. But we can't stop living. We have to become stronger. Helping others through something we have experienced is a wonderful way to facilitate our healing and bring good out of something tragic.

YOUR BODY IS A TEMPLE ~ THE ABC's OF HEALTHY EATING

Many of you know about the ongoing struggle I have been having after being diagnosed with Ovarian Cancer.  Even before the cancer, I struggled with living a clean eating and healthy lifestyle to cope with the aspects of Systemic Lupus.  Now sandwiched right before the cancer diagnosis was also a a diagnosis of Systemic Scleroderma which now labels me with a "mixed connective tissue disease" label.  Oh and by the way none of them have cures.  This makes want to find a way to live even more healthy so I'll be around for the cures!

Without going into a long story, many years ago after the Systemic Lupus diagnosis when I was in college and after 6 months of taking Progesterone and various other drugs, I went to my Rheumatologist (a fortunate recent referral and a truly great doctor and caring woman after several other doctors who really had no clue) and said I can't live like this!  The Progesterone had put almost 60 pounds on me, I could no longer play racquetball (something I did 3-4 times a week) or jog (something I did 5-7 times a week after being a cross country runner in high school). It took me years just to take off that weight.   LOL at least I was a 90 pound weakling prior to the steroids!

This great and caring doctor sighed with relief and asked me to sit down so we could talk!  Really, she just wanted to chat and chat we did for an hour and a half.  I truly believe that she changed my life forever!

The first thing she did was refuse me a support group - I know that sounds strange, but she truly felt I was better off with my positive attitude working through the steps with guidance.  Step 1 was to change my eating habits.  Remember I was in college, always eating on the run from whatever vending machine was close and diet everything to keep from putting on any more weight.  So, she had me write down my diet for a week and guess what?  When you see it in writing you realize how much all those "a little here" and "a little there" things add up! After that realization was Step 2 - eliminate the "non food" items from my diet.  She qualified these "non food" items as anything that didn't have a direct receptor in the body.  This included saccharin, aspartame, splenda, anything processed with ingredients the average person can't pronounce and preserved in a box or a can.  Below is the new food pyramid in an easy to read and follow format.

And here is an easy to follow breakdown!

It is a personal choice, but she also asked me to stay away from pork and shellfish - you know the bottom feeders of the world that will eat anything!  As she put it, garbage in, garbage out via your kidneys and liver!

Step 3 was to get regular exercise, proper rest and meditation to care for my whole being.  Oh and to avoid stress - yeah right, not easy in this world.  Sound advice for anyone, healthy or not!
.

So, the bottom line is that you were given only one body and despite popular belief, it cannot be easily replaced and does require the proper fuel and rest to work properly.  The easiest way is to start with a good diet.

BUCKET LIST ~PLANS FOR THIS WEEK... BUCKET LIST

PLANS FOR THIS WEEK...  NOT MANY!
YOU SEE,

TODAY I AM CELEBRATING LIFE.

On 12-29-2010 my life changed forever with a cancer diagnosis so of course I made a BUCKET LIST.  No, not because I'm dying, but because I'm living. I'm doing well and recovering. Miracles DO happen.  Then life kinda got out of control and I forgot about it.  It is time to start thinking about it again make some fun plans.

There are so many things I want to do before I do die, but there never seems to be enough time, money or energy so I'm making a list as I go and changing that.  I'm fortunate that I have already done so many things, but there are so many more yet to do!  I no longer stress out over the small things and they were right, they are all small things! 

• #  1 - eat a hangover burger - 12-28-11
• #  2 - go to a PRO football game
• #  3 - go to a PRO hockey game
• #  4 - finish my novels
• #  5 - finish my cookbooks
• #  6 - get published
• #  7 - Go to Vermont/New England and see the changing colors in the fall
• #  8 - Go to Disneyworld/Epcot Center
• #  9 - Go to an Olympics
• #10 - Get a postcard series of pictures published
• #11 - Go white water rafting
• #12 - Go Deep Sea Fishing (if only for the pictures)
• #13 - Design and publish a quilt pattern
• #14 - Travel 1st Class
• #15 - ...

Every time I update this list I will change to the current date to show my progress.

5 stages of acceptance is all relative...to how you CHOOSE to deal with them...

Hi, Tamy here from OUR KrAzY kitchen, Always Eat On the Good China, 3 Sides of Crazy where life hasn't been normal in quite some time and Tackle it Tuesday on Saturday here at The Motivation Station. 

Martha talked about the stages of change on Wednesday.  I swear we are on the same page as I was already writing about the stages of grief and acceptance.

One of the things that we all have in common here at The Motivation Station and in life is that nothing ever stays the same and we are always presented with something new to learn to conquer.

My ex-husband used to ALWAYS say, "I HATE change, quit changing everything."  Most people do hate change, but wake up people, change is inevitable.  It's called life and it is ever changing.  When I was young I'd say, "but it's not fair".  My dad's favorite response was, "where is it written that life is fair?  Fix it or learn to adapt to it and move on."  I do believe that is where I learned my positive attitude.  It really is easier to adapt and be happy, try to see the positive in any given situation than it is to moan about it and be miserable.  I miss my dad.  He's been gone 17 years now, but I try to remember his little one liners and the happy times.  They always make me smile through my tears. 

Anyway, I believe life is all about change and that learning to cope with it as it happens will help you through life. I believe in Murphy's Law, the Domino Effect, Payback's a Bitch, and Karma. I also believe that Pay It Forward and living by the Golden Rule go a long way to keep the former from happening to begin with. I believe everything happens for a reason and that life is one big adventure.

Now despite these beliefs this brings me to my current situation, my aunt Sharon who is also my godmother and was a great role model in my life.  She has end stage Parkinsons disease and I am currently living with my uncle to try and help.

Parkinson's disease (also known as Parkinson's, Parkinson disease or PD) is a degenerative disorder of the central nervous system that often impairs the sufferer's motor skills, speech, and other functions.  Parkinson's disease belongs to a group of conditions called movement disorders. It is characterized by muscle rigidity, tremor, a slowing of physical movement (bradykinesia) and a loss of physical movement (akinesia) in extreme cases. The primary symptoms are the results of decreased stimulation of the motor cortex by the basal ganglia, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the brain (specifically the substantia nigra). Secondary symptoms may include high level cognitive dysfunction and subtle language problems. PD is both chronic and progressive. PD is the most common cause of chronic progressive parkinsonism, a term which refers to the syndrome of tremor, rigidity, bradykinesia and postural instability. PD is also called "primary parkinsonism" or "idiopathic PD" (classically meaning having no known cause). While many forms of parkinsonism are idiopathic, "secondary" cases may result from toxicity most notably of drugs, head trauma, or other medical disorders. The term Parkinsonism is used for symptoms of tremor, stiffness, and slowing of movement caused by loss of dopamine.  It is possible for a patient to be initially diagnosed with Parkinson's disease but then to develop additional features, requiring revision of the diagnosis.

So knowing all this about how and what I believe about life, the type of illness she has and the fact that I too have a chronic illness* that does at times limit my abilities, I have trouble understanding where my aunt, the god fearing, rock to many in life, fun, positive, adaptable woman went.  At one time she was a candidate for the brain surgery, but refused it.  She now says she wants it, but the window has closed on that opportunity.  Personally I would have jumped at that chance if for no other reason than I wouldn't want my family to have to wait on me hand and foot 24/7.  After 20 years her care was killing my uncle.  Long story short she is now in assisted living, placed there by the state because she refused to do the things necessary to attend to her situation.  I pray that I have the grace to make the "right" decision for my family as a whole if ever that situation presents itself to me.

She has serious control issues.  She wants to manage this disease and make it conform to her narrow minded ways.  She was presented just this week with new medications and a new regimen that should give her 50% more "good/on" times.  If only she'd stay open minded enough to try it.  Traditionally she'll take one dose, say it doesn't work and demand to be back on her "safety net" meds. The doctor has told her it is useless to make an appointment with her if she refuses to try what the doctor suggests.  Her normal way of dealing with this is to change doctors until she finds one that agrees with her.  Like I said there are serious control issues which brings me to my main point, The 5 stages of grief or acceptance.  Knowing these and living by them can make any life easier, yours AND your families.

The 5 stages of grief or acceptance:

DENIAL - "this can't be happening to me". Not accepting or even acknowledging the loss.

ANGER - "why me?", feelings of wanting to fight back or get even with spouse of divorce, for death, anger at the deceased, blaming them for leaving.
BARGAINING - bargaining often takes place before the loss. Attempting to make deals with the spouse who is leaving, or attempting to make deals with God to stop or change the loss. Begging, wishing, praying for them to come back.

DEPRESSION - overwhelming feelings of hopelessness, frustration, bitterness, self pity, mourning loss of person as well as the hopes, dreams and plans for the future. Feeling lack of control, feeling numb. Perhaps feeling suicidal.

ACCEPTANCE - there is a difference between resignation and acceptance. You have to accept the change or loss, not just try to bear it quietly. Realization that it takes two to make or break a marriage. Realization that the person is gone (in death) that it is not their fault, they didn't leave you on purpose. (even in cases of suicide, often the deceased person, was not in their right frame of mind) Finding the good that can come out of the pain of loss, finding comfort and healing. Our goals should turn toward personal growth.

Get help. You will survive. You will heal (at least emotionally), even if you cannot believe that now, just know that it is true. To feel pain after loss (loss can also be a chronic illness or even a situation where we do not have control) is normal. It proves that we are alive, human. But we can't stop living. We have to become stronger. Helping others through something we have experienced is a wonderful way to facilitate our healing and bring good out of something tragic. 

*I have Systemic Lupus, but as my Rheumatologist is proud of saying, "you'd never know it, because I refuse to let it show."  I belief that is my cross to bare/bear and I refuse to let it affect my life when I can.  Because of that attitude though many people, family members included tend to say you look fine so you must be fine and they heap more and more on my plate to deal with as the family caretaker, sometimes for both mine and hubby's families.  Still don't know where I got that job, but am trying to empty that plate!