Tuesday, July 6, 2010

Ramblings and Observations

So if any of you have heard Johnny Cash sing, The Beast in Me, you understand what I am about to say...if you have not heard it...go listen!

We all have a beast...even though we don't always want to face it, admit it or knock it down. I myself have several...yikes...so hard to admit. The beast of RA and Fibromyalgia that has struck me all the way down today.  But more 'bout that later, because the fun stuff is so much better!

Two of my dearest friends Brad and Shirley came to Albuquerque from Amarillo on the Goldwing. (a NICE bike!)  We stayed at the Drury Hotel, which is a great place with TONS of extras. 



I tend to be a people watcher, and one observation I noticed this weekend is that 99% of the people staying in a hotel are generally happy.  On one of my morning smoke breaks, I noticed that everyone would tell each other "good morning" or some other kind of general humanistic statement.  It reminded me of the 2 weeks prior to Christmas; everyone gets cheerful and joyful.  Shirley and I decided to bring back the good ole days and we laid out in the sunshine, which brought on even more cheerful thoughts.  I LOVE to give Brad a hard time and tease the heck out of him.  We are great at bantering back and forth at each other.  One thing I have to say is just how much I love and respect Brad as a husband to Shirley.  He was so patient with us girls being goofy and taking forever at everything we did!  (I am SURE he wanted to choke at least one of us a time or two over the course of the weekend!)   My respect grew even more as I watched Brad open the car door for Shirley in such a loving way.  Brad, you rock the male world!

I am enjoying my new status of a divorced woman.  This has been a huge issue for me to "deal" with, but now that I am, I am so happy to have that chapter of my life over and done.  Now, I can really learn who I am in my little casita and just enjoy the rest of my God given life.  Mack enjoys it too!


Even though it was a very relaxing and calm weekend, the ugly head of my beast reared its ugly head this morning.  The brain fog is as if I had just awoke from a deep coma. My knees, ankles and back are killing me!  I called my rheumatologist this morning to see if I could get my infusion.  This is another sore spot with me right now.  Medicare will not approve Rituxan until I am in a full-blown flair.  WTF??!!  It has been 6 months since my last infusion, and now I have to wait until the pain is visible to the naked eye of Medicare.  I started taking Methotrexate again to try to relieve some of the destruction going on in the joints.  I do not like to take it, as the side effects are wicked, and it makes me so sick. 

My ramblings and observations for this post have made me tired.  So,I will put all stress and feelings of lazy guilt aside; and enjoy some quiet time reading and enjoying a beautiful summer day.
Cheers to the world and have a hummer of a day!!






Monday, April 26, 2010

A funny thing happened on the way to my bible reading...I learned SO much!

So everyday, I open the bible and read the verse I see first; much like one would open the newspaper and head straight to their astrological sign. Anyway, my bible opened to Isaiah 65, and my eyes fell upon verse 20. This was very profound to me, because for the last 5 1/2 years I have been in turmoil, anger and pain since my son, Raymond, died. Not only did I question God why he took my only child, I questioned why he did not "allow" me to have any other children. This has been a huge source of contention and misery to me for such a long time. I received my answer today. Whew, it took so long, but my time is NOT God's time.

I am not going to quote the verse, because I would like you to look it up. Isaiah 65:20.
You may be saying what does a bible verse have to do with my blog. Well, let me tell ya!

As I read this verse, it made me realize that this can pertain to my RA and Fibro as well. These diseases are terrible, and wreak havoc on everyday life. Most of the time we are in EXTREME pain (99% of the time, us RA'ers will tell you that we hurt, but that we are doing ok). We do not want pity form those of you who do not have the disease. We want understanding.

It drives us RA’ers CRAZY when we tell someone that we have Rheumatoid Arthritis and they say, “Oh, I have arthritis in my pinky and knee.” The two are as different as the north and south poles.

Rheumatoid Arthritis is an autoimmune disease and the best way to describe it is our military fighting America instead of the enemy. Sounds ridiculous right? That is what an RA and Fibro body does, constantly fights and destroys the new and fresh blood pumping through our veins.

The fatigue is debilitating beyond compare. I am still in a severe fatigue over a 2-day yard sale a week ago. Everything that we RA'ers and FMS sufferers do has to be in little "spurts of time". That can make those of us, who enjoyed life in a much different fashion prior to our disease, feel lazy and not worthy. We beat ourselves up enough to last a lifetime of flogging!

 
That being taken off my chest, the rest of the story. Isaiah 65:20. I know that there will come a time that the pain and fatigue fought by the military in my body will be no more.


That my friends, is the rest of the story!

Saturday, January 23, 2010

How do we define happiness?

For a long time it seemed to me that life was about to begin - Real Life.

But there was always some obstacle in the way, something to be gotten through first,
some unfinished business, time still to be served, a debt to be paid.  At last it dawned on me that these obstacles were my life. This perspective has helped me to see there is no way to happiness.  Happiness is the way.So treasure every moment you have and remember that time waits for no one.  Happiness is a journey, not a destination!"


I have been really thinking about what defines happiness in one's life. 
When we think to ourselves, "am I happy", we think about our life over all...should we look at the small doses of smiles, eye contact, giving to others, touch, petting an animal, looking at the beauty of nature...and put it into a "whole picture of happiness"? 


I don't think that we can be happy 24/7 unless we take the small doses of life and make them to fit into our happiness cup.  According to Dalai Lama, the very purpose of our life is to seek happiness. He also explains that none of this will produce happiness, if your mental attitude is negative.


John 16:33 says, "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."  We will never know the first thing about God as a true and loving friend until we come to the full realization that He wants man to be happy. Many people blame God for the wars and diseases that ravage the human race. These are all the doings of man!


Having RA can cause me to have days of "unhappiness", yet...I am a happy person. 
Having divorce looming causes a great source of unhappiness, but no one can take away the memories and laughter that was shared, not even a piece of paper.

Sometimes the smile on my face hides the pain I feel inside



  • I define happiness when I make eye contact with a stranger, and they smile.

  • I define happiness when I sing to the top of my lungs at church.

  • I define happiness when I get to spend time with Andre.

  • I define happiness when there is a hug given in truth and honesty.

  • I define happiness when I know that I will see my son again.

  • I define happiness when I hear a big belly laugh from a friend or stranger.

  • I define happiness when I look at beautiful mountains and wide open sky.

  • I define happiness with love...this story to be continued..

  • I define happiness with working hard to avoid being co-dependent, it only hurts.



  • So how do YOU define happiness?


    Friday, January 1, 2010

    Happy Twenty Ten!!

    Last night, I reflected on the last 15 years of life, through my journals.  I laughed out loud and cried equally as much.   Now, I KNOW I am not alone when it comes to reflection of the past and the dreams of the future. 

    While reading my journals, I rediscovered that I am a very happy and joyful person all the way to the core of my inner soul.  I "thought" the prior statement was lost somewhere within me, hard to access like a scratched record.  In fact, it was never lost, nor hard to access.  I access it daily. 

    The major thing that I keep revisiting in my mind and through the journals, is called "CARE".   My counselor told me once, or five times, that I care too much.  What?!!  How could anyone not care too much for others and life in general?   Looking back on the journals...I told me one thing, yep, I care much, and love deeply.  I still don't think that is necessarily a "bad" thing, but I do know it was a source of unhappiness...especially in the last 2 years. 

    My personal opinion is that it's not the caring that causes unhappiness...it's the sense of not being able to immediately fix the things we care about. My own personal belief is that if we dedicate ourselves to handling our part we should be happy that we are making a difference (even if in just a small way) and accept that not every problem can or will be fixed by our efforts alone. We can hope, however, that our action might inspire others to do the same.

    I can't fix several things that I "wish" could be fixed
    • I can't fix the fact that I have Rheumatoid Arthritis and Fibromyalgia
    • I can't fix the broken marriage...lord knows I tried and wanted to.  (this has been a huge source of sadness over what might have been.  But neither of us were the perfect Virgo)
    • I can't fix the fact that my son died
    • I can't fix the past of myself or others
    Although, I WISH I could change all of the above things the fact is..."It is what it is."  and "it" is LIFE.  Say it outloud, Life is what Life is.  Profound, huh?!!

    I took this picture in September.  It had a very profound effect on me, because we can have things that can bind us in life, but we do not have to be bound by it to continue to bloom.









    What I Can do...

    • Put RA in the back pocket (although, I'd like to hock it!)  and accept the change.  I will not let it define me nor continue to tell me that I am "damaged goods


    • Allow others back in


    • Never lose who I am again


    • Soften my heart and let go of the learned fear to love again


    • Always, always remember the love, laughter and joy that a child can bring to life daily.  And TEACH them how to love and care for others by example

    So with a new year..."We will open the book. Its pages are blank. We are going to put words on them ourselves. The book is called Opportunity and its first chapter is New Year's Day."
    Edith Lovejoy Pierce.

    Thursday, December 10, 2009

    50 years of someone's life

    The last few weeks have been way too busy for RA comfort, and my unwanted friend is starting to tell me so. I HAVE to keep trudging along, as Sunday is a big day for my parents. They are renewing their vows said oh so long ago.


    As I sit here this morning, I find myself thinking about what has gone on in the last 50 years. (I am only 47, so some of it is just imagination)

    We all could not discover and share each other's worlds 50 years ago. WOW, now ain't that somethin'!

    One thing that I keep thinking about is how far the health care world has come. Yesterday, I seen a little huddled up lady struggling to walk through the store. Of course, I already knew that she had RA, no need to ask another sufferer who was not given the opportunity of medications like Embrel, Rituxan, Orencia or Humara. I asked her if she would let me help her with her grocery cart, as I wanted to talk to her.

    As we walked very slowly through the isles, I asked her how long she had RA. She looked up at me the very best she could and said, "a long hard 35 years." I wanted to cry right then and there for many reasons. Some of which were my own selfish, yet, grateful reasons. Selfish because at times I feel "cheated" by RA. Grateful because of the medications that have come along in my lifetime to avoid some of the pain and suffering that little ole Lydia has suffered. Bless her sweet heart.

    I asked Lydia what she took for pain and she said, "anything I can find to give me a moment of rest from these ole bones." Then she said, "I eat gin soaked raisins, don't think they work, but they sure taste good and keep my plumbing working." Ah, the words of the wise. I had to laugh at her.

    I hope this post finds friends from around the world safe, happy and wise.
    Let's see where the next 50 years takes us.



    Wednesday, June 24, 2009

    This was a post that I did not publish...why, I dunno know...there are several. So, I am going through the list of "draft" posts and will be publishing them...then I will get back on track!

    Eleven years...thin, some would even say skinny. You see, 11 years ago, I had what is called a Vertical Banded Gastroplasty. It was, and still is, the best thing I could have ever done for myself...but with risks, which I will refer to my personal risks after the outline.

    • The short and long-term risks of vertical banded gastroplasty include:
      Incisional hernia.
      Dehiscence.
    • Nausea and vomiting.
    • Formation of a stricture at the site of the plastic band.
    • Damage to the spleen. Due to the close proximity of the stomach.
    • Regaining weight. A 10-year follow-up study of 70 patients who had had a VBG found that only 20% (14) of the patients had lost and kept off the loss of 50% of their excess body weight.
    • Ongoing vomiting and heartburn. About 20% of patients with VBGs report long-term digestive difficulties.
      Psychological problems. Some people have difficulty adjusting to the changes in their outward appearance and to others' changed reactions to them.

    Now, that being said...
    On December 29, 2008 I had to have surgery to fix the band eroding through my stomach and esophagus. There were a whole mess of complications going into the surgery and few more thanks to the doc cutting my spleen. Since the repair, I CAN EAT everything without getting sick. I have gained weight, which terrifies me but most importantly, I feel so much better. I am having problems with extremely low energy, from the spleen complications. This is a big issue! And the Rheumatoid and Fibro does not help, as it is a very common complaint among RA and Fibro patients.
    Today is one of those days. This last weekend was fast, fun and furious but boy am I paying for it today.

    So, do I recommend a lap band type of surgery for morbid obese patients? Yes, I sure do!

    Have a beautiful day and a better tomorrow!

    Tuesday, June 23, 2009

    Facebook | Home

    Facebook Home: "Today, I will try to find happiness and joy. I must admit, through tears already, that it will be hard. Only a mama who birthed a child and felt the soul leave the childs body, could understand the incredible blank pain that is felt.
    I know through faith that I will be with Raymond again! For that, and only that thought, will help me get through the 5th year of physical absence of my only child.
    The Life and"

    Thank you for visiting my site. Please come back soon! I would love to have you attach your link to my blog, we all have something to say or read!
    God Bless You!

    Saturday, February 14, 2009

    Name Change

    Yesterday, my dad called me Little Miss Muffet. It took me home, to a time in childhood, when life was simple and uncomplicated.

    It felt good.

    My dearest friends called (and still do) me Weenie. For years, I had a license plate that had the letters "WeKnee".
    I used to watch people in the rear view mirror...trying to sound it out...then show a snicker, or all out laugh.

    Life was simple then too!

    So, today I decided to change the name of my blog! It will bring new life and laughter to the blog. Anyone want to post some good jokes???

    Have a beautiful Saturday....
    Arlene
    aka Little Miss Muffet or Weenie ;)

    Poem I wrote, while my marriage crumbled

    You said you wanted me more than anything in life

    Even asked me to be your wife

    The day so beautiful, happy and more
    Then the love went down to the floor

    The wall came up

    I tried to climb up and in

    But I could not do it again and again
    Which way should I turn

    Which way should I go

    The answer to this, I don’t even know
    I wanted your love

    Even begged and pleaded

    But I was not what you needed
    The smile you once said was bright

    Has turned into the gray of the night

    Into the darkness I had turned

    Even thou, for you I still yearned
    I could not compete with what’s in your head, the computer, or even our bed!

    Some times it made me feel so dreadful and dead!
    I vowed to love you with all of my might

    But into the night and out of sight, you choose what you wanted for your delight
    Please open your heart and let the wall free

    See that someone loved you...that someone was me

    Monday, January 19, 2009

    The sign said, "Everybody Loves Raymond"...Happy 21st Birthday, Raymond!

    Today my baby would have been 21! Today is a day to reflect, cherish and honor Raymond David Stump. His short life was hard, but he was undaunted by the fact that he knew he was dying. Raymond was a brat, but he was a fun brat! He was not afraid to tell it like is was. He was true to his friends and family.
    I often wonder what Raymond would be like today. How tall would he be? Would he have gone to college?
    I look at his friends and guess that the answer to those questions are... 5'10", spikey hair, tatooed, pierced, edgy. Yes, he would be an engineer right now. With a band called R SINIST on the side.
    But he would be true to whom ever he meets! Happy Birthday my angel in heaven!!!!

    'Everybody loves Raymond,' the sign said
    Boy who encouraged others to stay in school loses his battle with congestive heart failure
    Haley Wachdorf News-Bulletin Staff Writer; hwachdorf@news-bulletin.com
    Belen In the days since the death of Daniel Romero's childhood friend, Raymond Stump, Romero has found some comfort in the thought that Raymond, who was diagnosed with muscular dystrophy as a child, can finally be the athlete he always wanted to be.

    "He's not suffering anymore, he's just walking around and running somewhere up in heaven, and I know that he can do whatever he wants," he said. "He doesn't have a disability anymore. I keep imagining him playing football like he always wanted to do."
    Raymond Stump, 16, died around 2 a.m. Wednesday morning from complications of severe congestive heart failure resulting from muscular dystrophy. Stump, a Belen High School graduate, spent the weeks following the news of the severity of his condition telling other high school students to stay in school and follow through on their dreams.
    Belen High School officials made sure he got his diploma, setting up a special ceremony at his bedside.
    Romero, who met Raymond in their days as fifth-graders at La Merced Elementary School, said that Raymond's constant smile and joke-cracking made it easy to forget that he had a life-threatening illness, and, until this year, when his health began to deteriorate, Romero said it didn't seem real that Raymond's disease would kill him.
    "You know, he didn't seem different at all," he said. "We never thought about it, we just pretended he was a normal person, which he basically was. But, later on, you know it's going to become a reality and you're going to have to deal with it. But they (doctors) said he would be in a wheelchair by the time he started high school, and when we started high school, he was just the same old Raymond."
    After he was hospitalized and diagnosed with severe congestive heart failure, Romero said, Raymond made a point to explain the severity of his illness to his close friends.
    "We talked about it once," he said. "It was me and other friends. We went to see him when he had just got back from the hospital and his mom left the room and he told us, he said 'It's only going to be, like, a few months,' and we were all crying, and he asked us if we wanted to be pallbearers. It was one of the hardest times we ever had."
    Raymond's courage and his message got the attention of students and community leaders. In Belen, April 1 was declared Raymond Stump Day and celebrated with a block party at the Tastee Freez. In Santa Fe, Lt. Gov. Diane Denish read about Raymond and contacted him to talk about continuing his message. From April on, all across the state of New Mexico, people who heard about Raymond through newspaper articles called or wrote to him and his mother, Arlene, to encourage them and offer their prayers.
    Thursday, Denish called to personally give her condolences to the Stump family. On Friday, the sign in front of the Tastee Freez in Belen said: "Everybody loves Raymond."
    Arlene Stump said that her son's long ordeal ended gracefully and peacefully, which was, in itself, an answer to prayer; and he simply slipped from a deep sleep into death, surrounded by his family.
    "He was holding my hand real tight, and I said, 'Raymond, I love you,' and he said, 'I love you, too,'" she said. "I think it was around 2:25 a.m. I felt the grip of his hand loosen and didn't think anything of it, but then, a couple of minutes later, I heard him take a couple of real deep, hard breaths and I called for the family that were there and we were there, for his last breaths. ... Raymond had asked me to ask everyone who was praying for him, he said, 'Mom, just now please tell them to pray for me to go home. I want to go home.' He kept saying, 'This is so slow.'"
    Gloria Baca, who was Raymond's medical caregiver for years and became very close to him and Arlene, said on Thursday that she would most miss Raymond's sense of humor and fun, which he kept until the end. She said that, when he was younger, he always pestered her to let him drive her car down the road, and, once he was old enough to drive, he loved to take her "cruising" and to Sonic for a Coca-Cola.
    "He would take me cruising, and then we'd get our Cokes at Sonic and he was always coming up with something," she said. "I'm single, and we'd go down Main Street and he would roll down the window and tell men in a car, 'Gloria wants to date you!' And I would say 'Raymond! Roll up the window!' He was just so full of life, so mischievous, so ornery. He was so funny, he made us laugh, up to the very end."
    Being able to walk and leave the house was of the utmost importance to Raymond until the end, Arlene said, and the last time he left his house on the last day he lived, it was because he insisted on going to Sonic with Romero and other close friends.
    "Raymond's big thing was that he always wanted to be able to walk up until that last day. He would say 'Grandpa, I can do it myself,'" she said. "And sometimes he would fall, but he said many times: 'If I can't walk, I want to die, I don't care if it's my heart, but if I can't walk, I want to die,' so there was a sense of relief that he was never totally bedridden. That would have killed his spirit."
    Romero said that the last few days have brought home to him the reality of life without Raymond. It will be a life, Romero said, with a little less laughter.
    "It's tough," he said. "It doesn't seem real. It's just weird to think of him not being here. I went to his house after he passed away and went into his room, and he wasn't there, and it was just hard. He was one of the funniest guys I've ever met. He was just so hilarious. Even if a situation wasn't funny, his laugh just made everyone laugh with him. He was just that kind of guy. I think that, in my selfishness, I want Raymond to be here right now with us making us laugh and talking. But I know that Raymond's in a better place."

    Sunday, December 7, 2008

    Yesterday I went to a Mantanza. It is this huge party where they kill a pig and cook it in the ground. Live music and a lot of happy people. Similar to a Luau in the desert!

    Anyway, I am such a kid at heart...and talked my sis in law into going into the jumping thing they had for the kids. Have you ever been in one of those things? They look so fluffy, NOT! So, I jumped up and landed on my back and immediately knocked myself stupid! The seeing stars kind of stupid. Yep, I am a true blonde and love it!

    Upon recovering from this, I started jumping again. My sis in law was jumping really close to me and we were trying to make each other fall. Guess who fell first. The girl with RA who really should not be in the damn thing in the first place! When all was said and done...I broke my flipping off finger, my stick it in your ass thumb, and my ring finger...which has no use, except they were all on my right hand!Today, my neck hurts like an SOB and my whole right hand is in tons of pain, and I am having to peck type with my left hand.

    But it sure was FUN!!! Would I do it again, yep! Maybe next week I will try the jungle gym at McDonalds!

    Friday, December 5, 2008

    Daybreak brings on a whole new light!



    Waking up today was wonderful! I reflected on life and the people who have touched me deeply before I even got out of bed.



    Some of the people I love deeply...

    GOD FIRST

    • Lee, the man I gave my heart to.
    • Raymond and Andre, my two sons.
    • Arley, my brother, even though he is a brat at times!
    • Marsha you make me laugh!
      Tam and Dix...you both know why!
    • My parents for giving me life and teaching me values.
    • Chris, never met you physically but you are so cool!

    This list will change, as every day, I love others!

    I started thinking about how a sunrise can bring so much joy on Monday and by Wednesday it can bring tears of sorrow.

    Two things that are really in my mind today are...

    1. How are relationships and friendships cultivated and maintained?
    2. What is the deal with my dogs?

    So with those thoughts in my mind, this is what I came up with.

  • Relationships and friendships can only be cultivated by words. Strength comes in the form of words, be it outloud or within our own mind. Many of my friends are great talkers and we can carry on conversations for HOURS without even a pause for a breath. While others think about what they are going to say and if it will be said "right" that they don't even get a chance to speak, before I have butted in another thought, which immediately confuses the thinker all over again.
  • Next has to come feeling behind those words. Feelings are sometimes scary. And we often get caught up in the "feeling side" and suddenly become fearful of the unknown. We know the feelings we have create a ripple effect that resonates to others. Yet so often, we forget that the person we are talking to is, in fact, a human being with feelings.

  • Along with counseling, I have been doing several things to try to learn from the above. One of which is Intentional Living. http://www.theintentionallife.com/ I am learning to live with intention and this is becoming a interesting journey for me. Check it out sometime!


    I have also been doing some resonance repatterning. This is based on energy and process of healing. As we grow up we are surronded with beliefs and emotions of others. If our life is surronded with negative or ill feelings, it will resonate into our adult life and we line ourselves with the only thing we know...the known, the similiar patterns of our lives. So, as adults, we need to relearn our patterns, beliefs and emotions by setting inner goals with positive intentions in our lives and how we affect others. Here is a great article on repatterning. http://www.soothingminds.co.uk/Articles.aspx?artid=118

    Now to the dogs...
    I have 3 dogs, two of which are female. Now these girls have discovered that the "new" dog is different! OMG. Tassa, my middle child, has taken a liking to Mack the newest addition to the family. (He is 10 weeks old) Now, I am not talking about a liking in a friendship kind of way. She is strutting her little Chihuahua stuff all around this puppy! Everytime they are outside a little ritutial has started. This involves her straddeling him...picture to follow...as this is too funny!



    Ahh the life of dogs. It made my day to see these two play!



    So for now, give yourself permission to receive gifts that come to you...both inside and out!


    What you resist; persists. Stop resisting!!!


    Have a blessed day!