Tuesday, February 26, 2013

Sleep is a Issue for those of us in pain

I sure do have problems when I sleep. Pain has a way of keeping you awake throughout the night. It seems you can fall asleep only to be awaken by pain. It may be searing pain, it may be minor pain, but either way it is pain. I don't understand why pain, at least for me, is worse when I lay down. If I stay vertical I am okay, just okay, but at least okay. But as soon as I hit the pillow it all begins. The neck, the hip, the back, the shoulders, the knees, the foot. I am not sure but I think it is because I try to stay vertical during the day and when I hit the pillow my body goes into some sort of shock for some reason. I don't know the answer. I try to figure it out but I stop trying when I can't get the answer. I figure sometimes it is easier to just stop thinking than to drive myself nuts trying to figure it out.

I love the picture above because I can so relate with all the pillows. I am surrounded by pillows. Propping this up or propping that up, all through the night. Many times I am able to find relief in a prop and other times not so much. It all depends of what is going on in any given night as far as the pain. I am cutting down on the steroids and I wonder if that is beginning to cause me more pain and causing me more weakness. I know it is affecting me physically in other ways too but I am trying to fight the downward spiral and hoping the adrenals start working on their own. It isn't much fun but I push on as usual. I continue to prop. I continue to stay vertical and keep moving. What more can you do? Give up? NOT an option and like I always tell myself things could be worse.

We will see what happens tonight.

God Bless!


Tuesday, February 19, 2013

Welcome Back...Who?

I know I am taking a risk with what I am about to write but I mean it in no disrespectful way. I am writing it to make a point not down anyone or disrespect anyone.

If you have watched any tv lately you surely have seen the commercials welcoming back Robin Roberts to Good Morning America. They are heartwarming to say the least. Her journey has been a long one and she has been through a lot the past few years. I wish her nothing but wellness and goodness. I really do! But at the risk of sounding like a cold hearted person the more I have watched the commercials welcoming her back and the more I thought about them I have to admit I became a little upset over them. I got to thinking about all the non-celebrities who have fought the fight. The people I know. The Margie's, The Pat's, The Jamie's, The Michelle's, The Chris's, The Rod's just to name a few. There are many others. The people who fight and have fought without the spotlight on them. The fight they fought to the cure without having a big welcome back celebration. To me those are the heroes I know. They have suffered much and do not kid yourself, they still suffer every single day. Wondering will it come back. I have to believe it is their own hell they do not talk about with too many people. Daily hearing the voice in their head flooding them with thoughts of, "Is the cancer coming back today?" I am sure it is a horrible hell to hear that voice everyday ringing in their ears. These are the heroes of my life the fighters. The people of the world who are not in the spotlight who get no recognition for what they have been through.

Then I got to thinking about the people who had the scare. You know the ones. They get a call saying a test was positive or something didn't look right, only to find out they really didn't have cancer. Ahh the turmoil waiting for an answer. Then it comes, it is nothing and all is fine. What a relief all the while they live in their hell until that answer comes. I am sure it is like this for the people who did have to have treatments. The last day of treatment. It is done but we still have to wait five years to be in the clear. Seriously? Where is the celebration for these people? There are many winners out there who deserve the welcome back celebration/party!

Like I said I am not bashing Robin at all. She is a courageous woman but I hope people realize she is not the only courageous person out there. Just because she has the support of millions we must remember there are many people who have little support. In the real world many people lose support because many of their family and friends cannot handle illness. It scares them when a friend or family member gets cancer because it forces them to look at their own death and many people don't want to believe they are going to die too. It is a sad fact but the bail on the people they should support. I hope in reading this you can be a friend to someone who is suffering with illness and not sit on the sidelines expecting everyone to be there for the person suffering, many won't be, believe me. When a person is ill they are still the same person. Cancer or no cancer. They still need you, your love, your caring, your well wishes, your sense of humor, and on and on. Don't make a person become their disease. They are not cancer they are the same person with just a little glitch that hopefully will pass. Maybe not fast, like you want, but over time it will. Like Robin they need your support. They need your party/celebration when it is all said and done but they also need you to remember they are still living in fear long after all the treatments are done and they seem fine to you. Remember, you have no idea what it is like to be ill until you yourself experience it so take the time to just be there for someone.

The story for me and many who suffer with chronic illness is the same. We don't want you to cure us we just want you to care. We don't want to hear your treatments that you think we should try. Unless your are a doctor keep your mouth shut. Treat us the way you always have. Don't give us advice. Make us laugh. Show us that we are still the same person to you that we were before our illness. Most likely we will never have the celebration day of the last treatment because chronic illness doesn't work that way. All the more reason we need you to cheer us on even when you feel awkward when we are around. We know how people feel about us, after time you begin to know what people think of you just by looking in their eyes. To many you do become the disease, damaged goods, and they feel uncomfortable around you. To others you are still the same. These people ask how you are but don't try to make you better. You know by the look in their eyes they really care. You try to explain things to them knowing they will never get it but they listen just the same. They don't get it but they care. This is enough for the chronically ill person. These are the people whom you receive your celebration from. They cheer you on knowing you suffer. They care. My hope is you can be this to someone you know!

So here's to you Robin in your return but most importantly here's to you all who suffer or have suffered and continue to suffer, maybe in your own head but you still suffer none the less. You are the one's who deserve the celebration just as much as Robin does! You are a hero! You are my hero and my inspiration! Thank you for that!

God Bless!


Monday, February 18, 2013

Pain and Pleasure

Last night I watched a show on PBS called pain and pleasure. The host began by asking the question, "If you could list ten things that bring you pleasure what would they be?" How much do you think about pain and pleasure? Are you too busy to give pain and pleasure a second thought? More on this later.

In the beginning of the show the host did an experiment of sorts with chocolate. Since so many people find pleasure in chocolate he decided to eat as much chocolate as he could until he felt sick. What he found was that after the first few bars he had enough and the pleasure of eating it went away. He continued to eat until he got physically sick. He said he was not going to be able to eat chocolate for at least a month after this. The point was that even though the chocolate brought him pleasure in the beginning at some point it began to bring him pain. He wanted to stop eating it. His brain continued to tell him to stop but he didn't, hence getting sick. This makes sense to me as I love my morning cup of coffee it takes heavenly but I find on the days I think I want another cup the second one does not taste nearly as good and I usually only drink half of it. This is also the reason there are so many obese people in the world because they don't stop eating when the brain tells them to. His point was we need to learn to listen to our brain and what it is telling us and when it has had enough.

Pain. How do you measure pain? Pain is subjective so measuring it is hard you cannot compare pain. What is pain to one person may not be to another. I have a very high pain tolerance. The pain charts they use at a doctors office are stupid because a 5 to me may be a 10 to someone else. All subjective. Pain is experienced in the brain just as pleasure is. There was a study done that found if your pain had a reward such as childbirth it was easier to tolerate but if the pain didn't have a reward such as cancer treatments which lasted a long time it made it harder to tolerate the pain. I can understand this. If I look at my pain as a lifetime thing I cannot handle that thought it makes me feel worse but if I look at it as, tomorrow will be better the pain is much easier to take. I also am thinking of quick pain. A few months ago I cut my finger on the lid of a can. When I did it I didn't feel much pain and then I looked at the finger and the blood and the pain came. Makes me wonder what would have happened if I never looked at it. Again my high tolerance for pain may have had something to do with it. I had a steroid injection in my hip a few weeks ago and the doctor was amazed that I didn't even flinch. I didn't feel a thing compared to the pain I had been experiencing the shot was a breeze. Maybe the thought of knowing the pain was going to go away soon with the shot made me not have pain when she injected me? I don't know. It is just that when pain is a way of life you really don't think about it, it just is. The brain is amazing and uses pain to tell us something is wrong. Ignoring that pain can have dire consequences. The days of toughin it up are gone we must remember pain is there for a reason. 
They also did a survey with people on the streets and asked them what was the worst pain you have ever experienced. Many people told of heart attacks, diabetes and other medical issues, but they found above all these was the pain of losing a loved one or a break up with someone they loved. The emotional pain was much worse than the physical. This made me wonder. What if someone never had a true love? What if someone never lost a loved one? Is physical pain worse to them? How can we really say what the worst pain for one is the worst pain for another? We can't. I believe we are all different and we all experience life different whether it is physical pain or emotional pain we are talking about.

Did you know smiling can make you feel pleasure? When you smile you use the muscles on the sides of your mouth which in turn send more blood to your brain which in turn gives you more pleasure, automatically. Even if you are forcing a smile it tricks your brain into thinking you are happy. I truly believe happy people live longer and have a much better quality of life. Think about the people you know. We tend to hang with people who are happy and avoid the negative people. This is good for us and for our soul to surround ourselves with these happy and positive kinds of people. People who don't drag you down. The next time you are out in public smile at someone and watch what happens. They more than likely will smile back at you because a smile is contagious. It makes us feel wanted and cared about even to a stranger.

Back to the top ten list. If I handed you a paper and pencil could you write down the ten things that bring you pleasure? First off I am going to do the top four for you since they are more than likely true for most people, give or take.
2. Friends
3. Food
4. Sex
Now all you have to do is fill in the next six.
This was easy for me. I wonder if it will be easy for everyone. I wonder how many people ever take the time away from the hustle and bustle of life to really think about what brings them pleasure. For some reason I don't think they do but I wish they did. Aside from the top four I am talking about the stuff that brings YOU joy. What are your pleasures? You know, the things that warm your heart just thinking about them. Mine are, Art. Walking in the woods. Being at home just putzing around. Pets. Looking at photos. Facebook. Yoga. I could go on and on. You have to remember the little things you do for just you are the big things that bring you joy. They feed your soul and help you to get through life. They are selfish things but when it comes to feeding your soul selfishness is okay. Really! If you are not doing things for yourself you can be no good to anyone else. I hope that you can take a few minutes everyday to do the things that bring you pleasure. If you can't do them then at least think about them for a few minutes they will be a mini vacation for your brain and just might bring a smile to your face.

God Bless!


Friday, February 15, 2013


Seriously, what is normal? I know I have written and probably bored all of you with this before but it is and I am sure always will be a struggle for me. 

Everyone has their own stuff to deal with so in reality does anyone really know what normal is? I read a little blurb the other day that said, Don't worry we are all crazy in one way or another. So does this really mean there is no normal and we really all are looney? It sure seems like it at times not only in myself but in observing other people. I don't have the answer.

Like the above says, "I just want to feel better." I just want to be able to work at a job outside my home. I just want to be able to exercise like everyone else. I just want to be able to go, go, go like the rest of the world." That's all. Normal? I don't know what it is called. I think it is called having a life but I forgot.

All of this being said I am also able to understand it isn't in the cards for me right now. It's okay, really. I push on and do the best I can. If you are struggling with normal it is my hope you are able to understand the cards you were dealt too. Remember there is a reason for everything that happens and even when we can't see that reason now it just isn't our time to know the answer, YET. Keep your eyes open you never know when it will hit you and it just might be when you least expect it you least expect it! I can wait! Can you?

God Bless!


Wednesday, February 13, 2013

The Best Things in Life

It has already been two weeks since we picked up our little fuzz ball of love and joy we call Eva. It is funny to us because it seems like she has been here forever. It is hard to believe how much of a perfect fit she is for us. We love her so much already and she thinks we are pretty cool too. I love to see how she loves Rich so much and how much he loves her. The man who was never going to have a dog. The man who wasn't going to be tied down by a dog who now talks about how we will have to find hotels when we go away that allow dogs. This is just another example of how you should never say never. You know how it is, we all do it. Maybe we look at someone's children and see them doing something and we might say, "My children will never do that." Well, let me tell you, you never know what your children will do so never say never! Never say never in any situation because you just never know.

Before I got sick and began taking drugs I may or may not have said I would never take certain drugs. I can't really remember if I ever did say or think that because I never thought I would be in a position where I would have to make decisions about drugs and my health. I had always been pretty healthy and came from a family that was never focused on illness. If any of us ever sick or got hurt you were told to stand up and brush your self off and get on with life. Believe me with my dad you could have had a ten inch gash with blood gushing out of it and and he would have told you ah that's nothing it''ll heal. I wish I could stand up and brush myself off now like I was able to do as a kid. It sure isn't that easy anymore. I have been experiencing these strange headaches that I don't know what to think of. They are in my forehead and in the back of my head and this morning it felt like a migraine with the light show. I am wondering why my migraines would change so fast into a whole new form. It is annoying to say the least. It is days like this I am glad I do not work. I am going to go see Hunter and Addi and push through this pain. It has to get better at some point in the day so why not make the best of the day? What better way to do that than grandchildren!

I have said it many times before, the best things in life, for me at least, are really not things. Yes, I like my computer, ipod, cell phone, tv, but beyond the other necessities, not sure these are necessities, but I really don't want anything. Stuff means nothing to me. In all actuality I am trying to get rid of all the "stuff" that is just laying around the house. It isn't that I have ever been a shopper or a hoarder as I try to clear things out as much as possible but for some reason we have still collected stuff to some degree. Stuff. Stuff? The older I get stuff means nothing. The best things in life, for me, is the time I get to spend with the people I love and the ones who love me. Snuggle time with Rich. Kisses from our puppy. Watching Rich with her warms my heart to no end. Hearing the grandkids tell me I am the best Nana ever or getting a phone call from them just because they wanted to call me. Getting a text or phone call from our kids and knowing they are all okay. Being able to still take care of our home even on the days I am not feeling well. All these little things are the best things in life and they give me purpose. I even told Rich after we got Eva that she gives me purpose. Purpose almost everyone else takes for granted. When you are ill it can drag you down. Yes, you push on but it can seriously wear on you. It is a fight everyday. You begin to lose your identity. A battle that you have to win and winning this battle is one of the best things in life, at least for me.

Eva is getting fixed to day so I am alone. I miss her like crazy and she has only been gone a  few hours. I am going to go to Katie's house. I am making tatertots for Hunter because he told me he likes tatertot casserole but without the meat and the corn, so that means just the tatertots. Too funny! I also have a box of cheeze its because Addi always asks me if I have cheeze its. "Nana, you have cheeze its at your house?" with those sweet little eyes and the expression of, I hope she says yes look on her face. How can I not buy cheeze its everytime I go to the store when she looks at me with that sweet face and asks if I have them? I am a sucker. I admit it. All they have to do is say they like a certain food and I surprise them with it. Hunter will be thrilled to no end with the tatertots I have in the oven. Addi will smile from ear to ear when she sees the cheeze its. These are the simple things. To me these are the best things in life. A smile,  a hug,  hearing them ask me to play a game or hearing them fight over who is going to sit on my lap.These are the joys in life that matter not the stuff. These are the things that make me realize how truly blessed I am. The best things in life!

I hope you are able to take a minute to take a time out from the rat race of a world to realize and cherish the best times of your life. We all have them it is just a matter of taking the time to realize them!

God Bless!


Monday, February 11, 2013

Soul Search

Wow this is a tall order to fill if you take the time to really dissect the words.

Always pray to have eyes that see the best in people. 
I'm not so sure I pray for this as many times
I tend to pray for the wrong in people. In my outward life I try my best to see the best in people but people are human and disappointing at times. It is our human nature to believe that we are the ones who are always right and the other person is usually wrong. I try to see others views if when I do not agree. It is my belief that I am who I am and they are who they are. There is no way they are going to change me so why would I think I can change them. That being said I also believe that your example, love, and understanding can change someone much quicker than your constant preaching or correcting them could ever do. I don't believe it is your job to change people into what you think they should be, that is God's job. It is your job to love and try, as hard as it can be at times, to just see the best in people.

A heart that forgives the worst. 
Humm, this is the hardest for me. Personally this is my biggest failure not because I can't forgive, I have that one down pat, but because I cannot forget. I really can forgive it is and  has always been easy for me but I can't forget the things that have been said to me or done to me. I wish I could. I really do. It is hard when you have had people in your life who have said and done things to you over and over and over again while you just took it like you were a punching bag always waiting for them to swing at you. Forgive, yes. Forget, not so easy. I think this is the one thing the good Lord is going to talk with me about when we meet face to face. I am just thankful he forgives me and will not remember all the times I betrayed him in my daily living. In some odd way this helps me to not feel so bad that I can't forget.

A mind that forgets the bad.
I have to believe this sentence depends on the person. What is bad to one person may not be so bad to another. The bad for me if I have to pick a bad thing in my life would be the chronic illness. The endless bad of one thing after another. If I allow myself to pity myself too much I am unable to see why this bad thing that has happened to me has actually been a blessing and really isn't so bad after all. The illness has taught me love, compassion, understand, and most of all patience. Some of these in myself and some of them I have witnessed in others. The biggest bad for me would be the misunderstanding of chronic illness. People just don't get it but that is okay. Like everything in life you have no idea what anything is like until it happens to you. You learn to lean on the ones who really do understand and you hide it from the people who don't. You learn to take all the bad comments people tend to say and let them enter one ear and leave the other. You have to. You learn to be the understanding one of the "outside" world because you know they will never fully understand your daily living. It is all okay, really!
(*Footnote-It has taken a loooooong time to get here.)

And a soul that never loses faith in God.
Of course for me this is the biggest and most important. It is my cure. The cure that gives me hope and gets me through each and everyday. The voice I hear daily. The Holy Spirit telling me I am much much stronger than I think I am. The Holy Spirit telling me I am special. I have been given this illness to show others that it is possible to be ill and still be happy. That I may be sick, a lot, but Rich and I will be together until death do us part because that is why God put us together. Rich and I talk about it a lot. He always tells me, "You/We may not get a cure for you illness but we have to believe we do have a cure, the medications are the cure, at least for now.The medications are a gift from God. They allow you to live a better life then you had before the medications." I like it when he says this because it always makes me feel better even on the days that are rough. I don't believe we will ever have the answer as to why some people suffer so much but, as for me, I have to trust that one day when my life is over all the answers will be shining in front of me with outstretched arms and a light that brings me comfort and healing. I will always have a soul that never loses faith in God because if I do I could never do this everyday.

I hope that you too can take these words and dissect them and learn something about yourself. By doing things like this we learn things about ourselves we may have never known and that is how we grow. We also learn to admit we are not perfect and we are unable to do everything right. We are human. We are sinners. There is no way we can run from that. The best we can do is try. We will fail, that is a fact, but we must continue to pick ourselves back up and move on the best we can trusting there is someone there leading our way to a better tomorrow!

God Bless!


Friday, February 8, 2013

Keeping the Doors Closed or Opened

Doors, there are all kinds. Bathroom doors, bedroom doors, front doors, basement doors, garage doors, the list could go on. I assume, like me, many of my fellow sicko's can relate to many other types of doors. The doors that when they are open can cause havoc on our bodies. The door's that may have been opened in the past but then for some odd reason they close for a while. Or the doors that decide to reopen once again. The doors that cause pain to rear its ugly head once again. The doors that open and are new doors and cause us new symptoms we may never have experienced with other doors.

Over the past six months or so a door had closed for me. How joyous! My hip pain that I have dealt with for many years had all but subsided. I thought many times, a miracle, no more pain. I blocked the pain out of my mind because when you are in pain it is a life controlling beast but when it goes away you somehow forget it. It is comparable to child birth if you have ever had a child, you forget the pain and focus on the good. A few weeks ago the hip pain door was reopened once again. The excruciating pain at night that wakes me up when I am dog tired from living with the daily pain of walking. My hip pain in the past was from Meralgia paresthetica which is basically a nerve being pinched that runs down your hip/leg. There are times it makes me crazy. It burns, itches, feels numb, hurts, and basically is a huge annoyance. The other day when I went to Dr Key my Rheumatologist she found I also had bursitis in that hip area and injected me with, as she called it, a cocktail of steroids and whatever else she mixed up in her little laboratory on her counter. Within a few days the pain got better but I am still having the itching and numbness. I am thankful for the cocktail shot since it is helping me to sleep better and I am not be awaken with the stabbing pain I was experiencing before the injection. The main reason I am having the bursitis is because of the foot pain I have been dealing with for over a year now that no one seems to be able to help me with. I am walking on my foot wrong and it is causing my hip to hurt, it is nothing but a vicious cycle. I had hope that one of my favorite doctors was going to return to the area. He was the only one who was able to help me with my hip pain but now I found out he is moving out of state and I am heartbroken. I feel like I am stuck and I don't know where to go for help. Frustrating to say the least but chronic illness always is.

Then there are the other doors. The doors that really are goodness and not just a thought in my head. The doors of the people that surround me and bring me joy. The biggest door of all. Rich. He is like the huge doors to a castle. You know the ones where there is a moat and a bridge to get to them? They are the biggest doors of all because they are always open. They are huge like his heart. Getting Eva has proved to me he would go to the ends of the earth for me. I know that anyways but for some reason he gets joy in seeing me happy. I know it is becuase he lives with this disease as I do but he sure doesn't have to be that nice all the time. It is heartbreaking for me and I am humbled someone would have such a large door that is always open for me. It can't be easy for him. Then there are our children and my parents. Always there with their doors open although many times I keep mine closed not wanting to be a burden to them. It is better that way, at least for me. Then the little doors of a five year old and an almost three year old running to me and giving me so much love. Hunter and Addi have opened doors for me I never thought imaginable. I am blessed beyond measure, pain and all!

I don't know about you but sometimes I can picture myself kicking the doors down, burning them and praying they never return. If I mentally can win at knocking the door down, maybe, just maybe, it will be the last time any of those doors might be opened again. But then just as fast as I want to kick and burn a door another one opens, the ones of love and goodness that keep me moving ahead day to day. Those doors are enough for me!

God Bless!