Wishing a Happy Father’s Day to all Dads and to all mom’s who had to be the Dad, too. And a very special Happy Father’s Day to all our military that will not get to be with their children today and to all the families that lost their Dad’s in the military…prayers and know you are thought of and loved.
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Son and I lived in hurricane country for years and so we learned the meaning of what is important a long time ago. When you have to worry about evacuating and taking what is most important in your vehicle, you soon learn that things do not have the same value as life.
We are on fire out here in Colorado. We always joked and said we would gladly swap hurricanes for snowstorms but never gave much thought to the wildfires out here. This is the closest they have come to us since we moved here in 2006 and the smell is in the air. Reminds me of when the Okefenokee swamps were burning back in South Georgia and the smell hung in the air for miles.
Son and I have kept our eyes glued on the television news since yesterday morning when the fires were all we were hearing about and especially since we heard that there was a new fire sixteen miles from us. We watched for any evacuation orders to come across the news but none as it was a smaller fire compared to the ones north of us that consumed thousands of acres.
I knew the fires were close as I have breathing issues and it has really affected my breathing. The news reporter said…keep your air conditioners and swamp coolers off and windows shut. That is some kind of directive when the temperature is hitting 100 degrees but it was said to keep the home from filling with smoke even when not in an evacuation zone.
While we really did not think we would have to evacuate, son and I did our usual plan, putting things in a spot by the door so that we could leave quickly. Important things like medicines, important papers (passports, banking info, insurance info), a bug out bag as we call it, which has a couple of changing of clothing and personal items, water and food, and that was it.
After years of having to evacuate our home during a hurricane in the gulf as we lived less than 50 miles from the gulf waters and lived in a modular home, taught us what was important. It was not all the things in our homes. It was each other, our Daisy (or Jack as it was back then) and our papers and medicines and food and water. The other things lose value when something like a storm hits or a fire that could take your life.
People actually refused to leave their homes here and that made more work for the rescue people. Just like those that refuse to leave their homes in a hurricane when told to evacuate. When people do that, they are not just affecting themselves but the rescue people who are there to do a job. There is nothing in this house or any house that is worth risking one’s life over or putting others in jeopardy to come in and rescue someone after being told to evacuate. That is what we have insurance for to replace our necessities.
I think about the devastation these fires have wrought and yet I look at how these people have come together. Other ranches outside the fire area opening up their barns and ranches for those in line of the fire to bring their animals too, rescue centers opening and donation sites with people pouring in to bring water, gatorade and food for those fighting the fires and for those that had to evacuate.
Son and I knew that if the order came to evacuate, we could walk out the door and get in the van leaving everything behind and head to safety and not be trying to load everything we could get our hands on into our vehicle. All we needed was ourselves and our Daisy. Life is way more precious than possessions. And as we watch the news again today, we are saying prayers of thanks for all the lives spared and prayers that they fire fighters will be able to contain all the fires that have erupted. As one emergency management official said…these fires will be burning for days.
Today was a blessing day. I am not feeling the best from the new med they are trying me on. And my helper came. She washed and curled my hair, changed my bed, vacuumed and dusted and cleaned. How blessed am I.
Cindy curling my hair.
cleaning and dusting my table by my bed. They moved my bed over so that she could get top and bottom. I am sitting in my power chair at the power.
Today is one of those days where I feel the tears at the back of my eyes. They are not tears of sadness or sorrow but a physical reaction to so much pain. And they are tears of embracing life and realizing that each moment is precious. Life is not a dress rehearsal. This is the real thing and I want to make the most of each minute.
It is times like this when the health/physical tries to beat its way into the forefront and steal all of my joy and I refuse to let that happen. And so I narrow my scope and I rest my body and mind. I focus on the beauty around me, on those who are so good to me, on the blessings I still have in my life. It is a deliberate choice and I have made these choices for years as my health deteriorated.
Thinly veiled tears come when I am looking around at my one room world, looking out the door and watching and seeing my son and daisy as son fixes food, thinking about my Sweetpea and son back east, reliving the conversations with friends and family. And reaffirming that when you can count your life left in months (for example, ten years equals 120 months), focusing on the good in life and not letting the negative intrude is a ground rule I have to keep.
I find myself shutting off all the negativity on television, watching old movies where values were still in place, reading what lifts me up and skipping what brings me down and being in control of what is in my life …the things I can still control…and trying to just push to the background the negative and painful. Yes, my pain is really bad but if I hold on to the positive hard enough, it can shadow the pain so that it is pushed back a little.
It is a time where I have to remember that no matter how others act, no matter if you are pushed down the list of importance or people seem to not care…that it is up to me to keep my happiness going. It is not an easy job but it is a job everyone can do. We all do what is most important to us and right now survival is most important to me. Others will find other things more important than me and I accept that for just as I am narrowing my world down to endure this right now, others are narrowing theirs down and moving me away to avoid feeling my pain. Perhaps their pain is too much for them to feel mine. I can not base my life on what others do right now if I want to make it.
So, when you find life extremely hard and you feel the thinly veiled tears in the back of your eyes and feel like you can not take any more. Hold close to your heart all the things that are good. You may have to look hard but you will find them. And use those good things like a hydraulic lift to pull you up and help you face the day. Yes, I do know that it gets lonely and so if it helps, just know that I care deeply for you all and pray that life covers you with rose petal blessings and loving people to help you endure your hard times in this journey called life.
Just remember…life can change in a moment…second and this tough time can ease up. Hold on to that hope.
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and the tears will fade and the sun come out and you will once again see that it is a beautiful world.
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It is human nature to be so thankful for things when life is going good. The real test of gratitude is when the chips are down, can you still be grateful for what you still have. It is also human nature that people tend to turn to God, when things are really bad and forget His love and care of us when things are going good. I work with both daily as my health changes.
image from thehappinesscoach.biz
This is why I believe an attitude of gratitude is so important in life…for those in pain, for those with loss or sorrow, for those chronically ill. It is our gratefulness that helps us to keep our happy hearts for when we are grateful, we are looking for the good things still in our heart.
It is even more important when you hear words from the doctor such as “we can do nothing to stop the progression of this”, “this is going to keep getting worse”, “the most we can do is try to do something to help the pain a little” and to live with such high pain that you can not think clearly a lot of the time…even with several different types of prescription pain medicines.
And so I have been battling and working to raise my attitude of gratitude so that this will not take away the joy of my life. And as I lay here, I look around and see things like my sweet Daisy who loves us so much that she lays at the door waiting on us to return from the doctor.
Or Daisy who hops on the chair by my bed and up on my bed bringing toy after toy to play with me to make me smile or snuggles me and loves on me. Or my son who takes such good care of me and brings me such joy in my life. He has certainly earned his jewels in his crown in heaven. Or my other son, daughter-in-law and Sweetpea that I see from a distance. Or my new power chair that got here just in time of my legs giving out. Or my hospital bed, oxygen, roll- in shower or shower chair and all the things I have to make my life easier. And my helpers that will be coming to help son care for me. And dear friends that message me and Skype me to lift my spirits and let me know I am loved.
Many would say their lives were horrible and ruined because their health is not doing well, because they can no longer do what they even used to be able to do six months ago. But, I can not say that because in spite of the added pain and my feet degenerating like they are on top of all I am fighting…I do have joy in my life and it is because I choose to see it.
Daisy Laying on me in my hospital bed.
Life is what we view it and if we are grateful for what we have in life no matter what befalls us, then we are happy and at peace. Never let anything take your happiness from you…no thing, no person, no tragedy, no sorrow..nothing. It is a choice you can make. I have made mine and continue to make it daily.
image from www.ccmaine.org
People ask me how I keep going like I do in spite of all that I deal with and now with more on my plate than ever, I have done some serious thinking about it and my answer contains several components. One is my great faith in God and life after here. One is my attitude and how I learned that I can not always change what happens to me but I can change how I deal with it. And the last, is I learned how important it is to have goals and things to work on each day.
This is so hard for someone who is disabled, chronically ill and especially someone who is like me that health keeps me from doing many things. It is hard to do a lot of things from a hospital bed but it is still possible. We are a goal oriented species and if we stop having goals in our lives, then we stop living and stop caring. One of my goals every day is doing this blog. I call it my job and I make myself get up and write. I research a lot of the information on my blogs because I want to convey accurate information. And sometimes, that one goal is what gets me up every day and makes me look to the future.
When we can no longer work like we used to, we have to look around for other goals to have. Just “sitting there” is not a goal. That is a victim mentality of poor me. That is when it becomes imperative to set some goals. I have goals daily ranging from sitting up in my power chair for so many minutes in a day, to taking those four or five steps on my forearm crutches, to cleaning my computer table here by my hospital bed. They are all goals…all things I need to do to give me something I must accomplish each day more than just laying here and feeling sorry for myself.
Goals and dreams go together. I have dreams and work on them every day. Our dream was to get out here to Colorado to live in the mountains and we accomplished that dream. My dream of gardening is gone but that does not mean I can not have a goal or dream of helping son plant things in pots on the patio. I love to write and a goal son and I both have is to publish things we have written and that is something I work on daily.
Life can change in the blink of an eye and all that you thought you would do or could do can change and you are left wondering “what will I do now”. The only thing I can tell you is to sit down and make a list of new dreams and new goals using new ways to do things. I got bad news yesterday about the severe degeneration of my feet and the crippling effect it is having. They told me there is nothing they can do to help it or to stop the destructive path this disease is taking on my feet and body and that was devastating news. They are trying me on med for RA/Psoriatic Arthritis and also have drugs like Humira, etc but are not sure my body can handle them. Can that change my goals or dreams? Sure it can but I also am smart enough to figure new ways to do things. I have a power chair and I can do things with it to help me accomplish some of these goals.
When I make goals and dreams, I keep a list. One is the most immediate goals I want to accomplish and the second list is those that will take some effort like learning Spanish and Sign language but are still goals I can accomplish. And then the last list is those goals that I dream of but also realize that they are goals that might or might not happen. My dream of going back to Italy is one. Will I ever make it? Who knows but God? That does not stop me from dreaming of it and talking about it and trying to figure out ways that I could do it. For example, a friend I have in Italy told me that they have power chairs there that go over the cobblestone streets. So, it was something to add to my dream book.
Not having any goals takes away our desire to do anything. And when we have nothing to occupy our minds, then the negative, self-destructive thinking starts coming in and that leads to victim mentality. We become the poster child for the “woe is me” thinking that many can fall into even with such things as becoming unemployed or losing your home. Goals give us self-worth and help us feel good about ourselves. I do not care if you are unemployed, a goal of fixing this or that at your home gives you something to focus on and to use your skills and to make you feel like you have achieved something. And we all need to feel that sense of achievement.
No matter whether you are disabled, chronically ill, bed bound, homeless, jobless…whatever…do not stop making goals and working towards them. I started off with just standing up with my crutches by my bed and worked my way up taking steps. Does not sound like much to a healthy person but to me, I felt like I climbed Mount Everest. No matter your situation, keep making those goals and dreams a part of your life and work towards them. And the lower you are on the totem pole, the better you feel when you reach those goals. And it is never too late to start making goals and dreams and working for them. Do it now and you will find yourself feeling better about yourself.
I will be taking a few days off from writing. I am having some medical issues going on. Last week I had Radio Frequency Ablation done on my lower spine again and unfortunately, while it helped the tailbone area, it did not help the horrific pain that hits on the inside of my right thigh. And with the new machine that burned a larger area, it has taken me longer to recuperate from it.
My new power chair is awesome and I am so proud to have it. It supports me spine wise and fits my long legs. LOL. And thank God I have it. I hit my foot two days ago and had to go to the ER because it felt like I had broken something inside my foot and my toes next to the middle toe feels like it is out of joint. They x-rayed it and told me to see my doctor as soon as possible.
Unfortunately, my x-ray showed my feet look like this bone wise and so it explains why the pain is so bad when I try to walk. Even my heel is eroded.
This first picture is of my toes and below it is a picture of “normal” toes. And people wonder why I say wearing shoes is painful.
So, because of my normal pain of muscle pain, joint pain and nerve pain….is being increased due to the pain of my foot right now plus having a Urinary Tract Infection on top of it, most of my typing is done like this with a wireless keyboard and a roller ball mouse, which I use all the time. But, my pain has spiked so high that while I might be a warrior and a survivor…it is taking all my energies to be that warrior and survivor and writing a blog is more than my scrambled brain can handle. And I have the Radio Frequency Ablation being done again tomorrow plus having my other doctor see if they can get my toe twisted back around where it will bend again, so I am overloaded with pain and medical things. I hope you will stick around as I will be back soon. Son will post any updates if I can not do it myself. Thank you to all that read my blog.
image from http://www.stevensummerstone.com
The Shadow Of The Valley
What do you do
when the valley is deep
and the mountains so high?
sometime you just
lay in the shade
fueling up to go again
sometimes you push on
on legs weak
rubber bands shaking
sometimes you crawl
make it at all
and sometimes sadly
people die in the desert
because alone is
a hard way to fight
move, move, move
the wind shouts
voices are dim
memories to you
inch my inch
you move along
looking for that arm
to lift you
or for that shade
to hide from
the beating rays
sizzling your body
burning your skin
looking around you see
emptiness and less
and inch by inch
you make it once more
through the valley
only to see people
all dressed to the nines
why were they not
in the valley
of the shadow
of death with you?
people talk a good talk
but seldom walk
the walk with you
and so you continue
to walk the walk
but you make it
you have to
you can not
until it is your
to become the sand
I hear this so much in the chronic illness community and it is a topic I have long wanted to write on. I hear people saying they hate it when someone says:
”you look good today”……my reply “thank you” with a smile
“You must be feeling better”…..my reply “working on it” with a smile
“You look like you are improving”…my reply “oh I hope so”..with a smile
“it is so nice to see you sitting up, you must be better”…my reply…”Oh I hope so”..with a smile.
And I could go on and on with similar statements. I can remember a time many years ago when I felt the same way. And then one day, a friend asked me when I told her I hated people to say those things to me…”just what is it you want people to see? What is it you want the world to see in you? Do you want them to see you as poor sick you or to see you as a warrior who fights each day in spite of all you are enduring?”
I thought about that long and hard and asked myself was I really wanting so badly to be seen as “sick”, “chronically ill”, “in pain” that I was afraid to allow anyone to see any good moments in me? Living with chronic pain and chronic illness is hard enough without feeling like we have to make every minute of the day be an image of constant pain and sickness.
I believe attitude plays a huge role in our health. And I am saddened to see so many that want the world to see them as sick all the time. I have horrible times, I have bad times and I have some good moments, so what is wrong with someone else seeing the good moments or seeing me fight to act like it is good when it is not as good as I would like?.
I look at it this way. If a person sees me as “looking good”, then my mojo is working and all the fight I am putting in to live as normal as possible is working. I work for those good moments and I treasure them. And there is always…ALWAYS something good in each day. I do not care if it is your dog coming up and loving on you and making you smile. Or your best friend showing up and hugging you. Or a movie you watched that made you laugh. There is always something good if we look for it.
What is the image you want people to see? I want people to see me as a fighter, a survivor..a thriver..a warrior who gets up every day in spite of the amount of pain I am in, in spite of spending most of my time in a hospital bed, in spite of the nausea, in spite of the oxygen. I do not want people to see me as someone who is trying hard to show the sick side of me.
We all have agendas in life whether we realize it or not. We have an agenda to finish school. We have an agenda to get a good job. We have an agenda to meet someone to spend our lives with. Being chronically ill and in chronic pain, I find it hard when I see people who make it their agenda to show the world how sick they are and that is what comments like “I hate it when people say I look good” are intended to do.
For those that do that, ask yourself why you want so badly for someone to see you as sick. Why is it so important that everyone know you are chronically ill or in chronic pain? and last, but not least, “why is it not more important to show yourself as a fighter and a survivor?” Life is what we make it no matter the challenges we are given. As long as my doctor knows what is wrong with me and is taking care of me, the only person I care about knowing how sick I am is ME. And that is when my warrior mode steps in and I fight to live as normal a life as I can. I do not want people to view me as poor, pitiful Deb. I want people to see me as someone who is a survivor, someone who motivates others to be a survivor and that fights to NOT be sick every minute of every day …someone who puts on a smile even when it is bad.
I can not lead you
to your destiny
but I will walk beside
you to set you free
I can not answer
your question of life
Any more than I can answer
your questions of strife
I can but be here to
listen and comfort you
I can see the pain in
you all the way through
I know the pain as I have
swam the rivers of tears
I have walked and struggled
through all of life’s fears
You may struggle, you
may cry, you may fall down
all of life is a circle, did you
know the world is round?
The journeys are not new,
they just repeat like the sun
Rising each day, warming
the earth and bidding us run
What did your write in
your diary this wonderful day?
Was it all woes and troubles
or did you take time to play?
Did you see the scarlet
dripping from the setting sun?
Did you see the smiles
you got one by one?
Do not let troubles steal
your life hour by hour
Show the world that
you are filled with power.
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