Sunday, April 29, 2012

Giving Of Yourself Can Change The World

Richie and Leah graduated yesterday along with over 11,000 other young men and woman. I know they all worked very hard to earn their degree as Michigan is a very demanding school to attend and they all spent countless hours studying to get to this day, graduation. Of course I am proud as ever to see them both graduate and now they must take all they learned and apply it to the world, the real world. Although Richie will be moving on with Pharmacy School for the next four years but he will also be in working world as well at the VA hospital. Leah will search for her first job and I know once she finds it she will contribute much to wherever she ends up. I know it won't be easy because the world can be a wicked place at times. My hope is they try to see the good in all that is out there instead of focusing on all the bad and the negative. I hope they are able to make the world a better place as we all should be trying to do, they will! If you look around it seems the bad is beginning to over power the good, all you need to do is hop in your car and take a drive and it begins. I believe we can make a difference in the goodness of the world, even if it starts with our driving.

Yesterday made me think even more about not only Richie and Leah's "new" life but about my own life. It makes me ponder even more on what I am contributing to the world. My dreams. Oh I still have them, many of which I wonder to myself, how can I make any of them come true now? I have always wanted to change the world but now it seems so impossible for me. I have always dreamed of being out there and making a difference. I have always thought of it as being and doing something huge, something that would change many lives. I tried many times. I really did, but along the path I found that changing many lives can be very hard. The world is a brutal place and for you to succeed really BIG and it takes more than what you have in your heart. It takes people to believe in you .Unfortunately  it is very hard when the only people who truly believe in you 100% are the ones whom love you for who you are, so I have failed in trying to change the world in the way I always thought I would.

What I have learned is that even though I haven't changed the world in a big was I still have changed the world, maybe not in the way I thought I would on a grander scale, but in the lives of people I have tried to help, one person at a time. I remember many youth group aged kids who confided in me about the hardships in their lives. The hugs I was able to give them along with the love or understanding they never felt they were getting from anyone else. I remember the Hospice patients I listened to and cried with whom never told their family what they really felt deep down inside but for some reason trusted me with their inner most deepest thoughts. I look at my children and I see what a good mother I was to them. I often hear mothers say how they regret the things they wish they had done with their children, I have no regrets when it comes to my children. I believe all I taught and shared with them has brought them to a place where they can do the same now. It is a very heartwarming when I can see the three of them picking careers that help others, all three in the medical field and all three sharing a piece of themselves to help someone else and maybe even saving a life. I have watched them struggle, I have watched them succeed, but most of all I have watched them grow into caring human beings and I wonder to myself what could I have done differently with them? Nothing! For me that in it self is enough to change the world. I could go on but I don't want to bore you to much or make you think I am bragging on myself, I'm not! These are parts of the story of my life. We all have a story!

As I look back I realize I have changed the world, I just never realized I did. I should be proud of all that I have accomplished with my small little life, but as I look ahead I see the same. I may not be able to do much physically but my heart is still huge and is still able to love and care for another. Degree or no degree. Job or no job. The point is we all can do something even when we feel what we do doesn't change the world, it maybe be saving someones life, or just being there to listen to someone. Giving love out to others is sharing a piece of yourself in a way that money or things can never do. Receiving a piece of someones heart is so much more than things. When we are dead and gone you will leave a piece of yourself behind. Think about what you will be leaving behind. Think about what will be remembered when your name is spoken in remembrance. What will it be? Have you ever even taken the time to think about it? Maybe now is the time for you to start doing so.

God Bless and keep on giving!


Thursday, April 26, 2012

Six Great Words A Chronically Ill Person Can Hear

The Six Greatest Words for me, at least for today, come from my Pharmacist, "Yes, I can refill that today." You see, being on so many medications and knowing that you may not be able to fill one because the availability is running short can be like playing a game. You must be one step ahead of the game at all times. If you play the game right and refill that one medication to the exact date it is due you are able to bank a few weeks so that if does become unavailable again you will at least have a few more weeks to hold you over until it hopefully will become available.

I hate this, I really do. I will tell you there are not many things I hate, but being the manager of this one woman team which has no other players except oneself, can drive you to bonkersville in a hurry. I mean really, if I had team members I could at at least get advice from my fellow players as to how to continue to keep afloat with all of the round and around that goes on when trying to number one, remember meds and number two, keeping them all refilled. It is exhausting just trying to keep it all straight. Yesterday I forgot to even do my shot and I had it on my mind all day, I kept hearing do your shot, do your shot. Well, guess what? I forgot my shot. My foot has been causing so much pain that my thought process is turned upside down just trying to tell myself the pain isn't that bad and trying to use my mind over matter techniques. No worries, I jabbed myself a few minutes ago so it is all good, I remembered the shot. One good thing about this medication it does have a carry over effect so if you forget to take it, it is still in your system working for you. It is when you have to go weeks without it that it begins to wear you down and leave your system.

My next issue is, how come every time I am able to fill my meds and I hear, "Yes, I can refill that today," I have this sense of guilt. I know I shouldn't, but the human side of me feels like I have a broken, heavy heart. With every refill I think about the people who suffer as I do, if not more, and are unable to either afford the medications or the ones who live in another country who do not have access to any health care. I always wonder why I am so fortunate to have all the goodness I have and why others are not. It is a heavy burden for me to carry and I cannot help it. I also fret and have tremendous anxiety as to when I will not be able to afford all of my medications. What will happen if Rich loses his job or insurance? I struggle with these thoughts because I am human, or maybe I have to much time on my hands to ponder on things that others may just take for granted. All I know is right now I am very grateful to live in a country that has the best health care and a husband who does his best to make sure my medical needs are met. I may complain at times about our systems and rightly so, but I still have a heartfelt humility towards what I have and do not deserve.

I read something that someone wrote and it had to do with the ten things that chronic illness taught them. One of the things went something like this. The writer was talking about being caught in bad weather, like a tornado, or whatever it was. He/She said something to the affect of having to run for his/her life to save it. They said if they had to run for their life they would die. I tell you that has struck me so funny. I thought to myself, wow can I identify with that. Hahaha! I have tendency to think the same when it comes to my meds. If I didn't have them would I be the one left behind with no quality of life what so ever? As for now, me and my team of meds will continue to fight the good fight as long as we are here. It isn't an easy game but we will continue to the finish line until the game is won and hope like hell we never have to actually run for our life.

God Bless!


Sunday, April 22, 2012

Be Careful What You Say

Well, here we go again. I was doing quite well for the past few weeks and sure am thankful. I was able to accomplish so much and it felt good, almost a "I feel like a normal/healthy person" kind of good. Then yesterday I felt different. I was tired, sluggish, and a little weak. The loudness of noises around me seemed to be magnified and my eyes were a little more blurry than usual. I felt sick but not sure how to explain that kind of sick. It wasn't the flu and I was not experiencing any symptoms at all. I kept telling myself it is nothing and it will pass, as many times it does.

To pass my day I got out my drawing book and for some reason I began to draw a face, not my face but by the end it turned into me. The drawing looks nothing like me, but the story ended up turning into one of my many stories. This past Monday I went with Steph and a dear friend to a seminar on migraines. I wanted both of them to hear the information because neither of them seem to get any relief from their headaches and suffer in silence as mnay people with migraines do. I was thinking about that seminar as I was drawing and decided I would turn the face into my face when I have a migraine. The speaker at the seminar had some really cool art that people made that showed their story of living with migraine. You see, each story is different with migraine. What one person suffers with, another does not. When it comes to medication what works for one doesn't work for another. Migrianes are somewhat of a mystery to the midical world and there is very little funding for researech, which is crazy considering all the people who suffer from them.

On Friday as I was sitting home I also had some other symptoms it was like the flashes of light were going through my head even as I closed my eyes. I got somewhat alarmed that it may be the beginnings of a migraine, but blocked the thought out of my head right away.
I was just bragging how I haven't have a true migraine since I started back up on steroids. Yes, I have had bad headaches/migraines but not the kind that kept me in bed. I was happy when the light flashing didn't turn into a migraine that night but then yesterday I thought again, am I in the beginning stages of a migraine? The answer was/is yes, Wham! Last night around 3 in the morning I started the suffering. I kept telling myself, just sleep. I would fall back asleep for a few minutes and wake up in pain. If you know me at all I am a fighter. I am so stubborn and I hate to take meds for the migraine. the side affects are horrible and can set you back for a few days. Finally at 10am I took the migraine excedrin, laid in bed telling myself to just get up and drink a strong cup of coffee. I did just that and now I am feeling better. My vision is still very blurry and my head is still pounding but not bad enough to send me back to bed. I am thankful when this combination can take the headache away for me!

In all of this I have learned a couple of lessons:
1. Never say you haven't had a migraine in a long time.
2. Never draw a picture of something you suffer from unless you want it to bite you in the ass. Hummm, maybe I will draw something good today and see if it comes true. Like a person dancing in the wind with no medical issues hanging over their head.
3. When I feel a migraine coming on TAKE YOUR MEDS RIGHT AWAY. I say this every time but for some reason I always think I can fight it, and win, but I never do.
4. Listen to your body when it tells you something a few days before it is smarter than you think you are.
5. Enjoy everyday to its fullest and when all else fails, come to your blog and write a story.

God Bless!


Friday, April 20, 2012

"New" Doctor Phobia

Once again I am forced to prepare for another "new" doctor appointment. You could never imagine the pain and ache it causes in my heart when I am forced to begin preparing for a "new doctor appointment. Even when I am use to my "usual" doctors I become anxious before I have to go, but when it is a "new" doctor it brings on even more extreme anxiety for me. I was reviewing my medical history and all my diagnosis as I prepare for the appointment and there are over twenty diagnosis. Seriously people think about it. You are a new patient with a "new" doctor who does not know you in any way shape or form. They look at your history, and ongoing diagnosis'. What do you think they think when they see over twenty diagnosis listed? Hypochondriac? Hell, if I was a doc or if someone told me they had my history I might think that too and I am the one living it. Believe me it is all real. I hate my body or is it that my body hates me? I don't know but I do know God put the wrong soul in the wrong body because they do not fit well with one another.

I will never be able to explain to anyone how hard it is for me to see my regular doctors with whom I am use to and who know me from a medical standpoint, the ones whom understand when I come in that I really am sick. I am trying not to think of the look on the "new" doctors face when I go Monday. I know the look. I have a innate way of reading energy that is sent off of people. I have it all the time. I am one of those people who can feel bad energy in an instant. I can sense when someone is genuine or shady. Many times it is a good sense to have but other times, like the first time I meet with a "new" doctor, it just plain sucks to be honest.

My thoughts go to the question of, What is this doctor going to do with me? Will he tell me to continue to do what I have been doing or will he sincerely want to help me? I can't take the whole, you can't be having another problem look on his face. I just can't. There are times my world sucks, like when I must see a "new" doctor. Seriously? I can handle the pain and other symptoms and they cause me less stress than the thought of meeting a "new" doctor. I can tell this will be a rough weekend. I will have to keep busy to keep my mind off the doctor thoughts. I hate that my mind always makes my doctor's appointments worse then they ever end up to be. Or plan B, bring Rich. It seems when he comes with me doctors take me more serious. I don't get that either but whatever. It is a man's world.

In my head I am trying to focus on the good. I will have a good weekend. I will have a good weekend. I will have a weekend! I will not think too much about my appointment. I will try to keep a positive mind set on meeting this "new" doctor as hard as it may be for me. I will focus on my time with Rich, my family and our friends. I am glad we have plans for tomorrow night so I can only think of having fun and laughing while I bury the anxiety of meeting the "new" doctor. I still miss Doctor Hayes so much he would have had me better by now with this whole foot problem. I am sad that there is not a day I do not remember the one doctor who really truly cared for helping me feel better and was always there for me on that level. Oh well, people move on, even doctors. Life goes on and we make the best of each and everyday whether we are meeting a "new" doctor or not!

So here is to a positive weekend!

God Bless!


Thursday, April 19, 2012

Fear Factor/Mind Games

I am here once again. Today I have no reason what so ever to be here. It is funny because when I am doing good I do not feel the need to come to my blog. I have no idea why I am being pulled here today but I am. Mind games I guess.

Chronic illness is so strange on so many levels. At times it hits you like a mack truck, head on and other times it is like a slow flowing bike ride in the wind. You are riding along and everything is going smooth, smooth for you, but still there it is waiting in the shadows. It lingers in your mind and at times throughout the day it reminds you it is there. It isn't speaking as loud when it is in the calmed stage but still speaks none the less. It never really goes away. You may be feeling very good, good as you see good, but right there in the back of your mind the fear factor sits. I think the chronic ill have an extra little space in their brain that harbors the thought that it may return at any instant. The mind games are the hardest to master or even to win. I feel the mind games are always just one step ahead of me even when I try not to let them be. This week I feel like I am winning but I can hear the quiet whisper saying, "I'm here, don't forget me." I wish I could take an eraser and wipe clean the fear factor but until I am cured or dead I am sure it will be there, as much as I hate it and try to fight it.

 I still believe God is good. I really do and I believe he knows what he is doing. I haven't been bad from a symptom standpoint for a little over a week now. I feel the pain meds I am on are helping me to feel better and I am thankful. The flip side is that now my foot is driving me bonkers with pain. This is not something I have had to deal with in the past so I am almost sure God is giving me good symptom control so I can deal with the foot pain because if I had all the other stuff on top of the foot pain I would be a total mess, physically and emotionally. Yes, I will get over this and I am hoping for a cure to the foot pain, soon. Hoping this is a temporary thing although I did read people who suffer with RA are more prone to have plantar faciiatis so that is not a what I really wanted to read. I will plug on with my usual mind over matter attitude and get through this too! What else is there to do. You take one thing at a time and deal with it the best you can. I would much rather have foot pain than muscle weakness! I am still able to hobble around so I am very thankful for that!

I hope if you are a sufferer in anyway that you also are able to control the fear factor and mind games you face, with somewhat of a positive attitude. I find it is so much easier to be positive when I am in the gentle breeze bike riding times than it is when the mack truck hits me. So for now,  for this minute I will enjoy the good, always remembering the bad, which in many ways helps me apprecate the good so much more. I hope you are able to do the same!

God Bless!


Monday, April 16, 2012

i/we are NOT our diagnosis

Today's blog is totally inspired by my friend, Brenda, who is struggling with yet another life changing diagnosis. One I am sure she would not want to add to the one she already has but as I always say, "It is what it is, and this is what she has been given, wanted or not." The statement that, 'i/we are NOT our diagnosis' hit me yesterday as I was thinking and swinging on my swing, starring at the beauty before me. Brenda now trying to figure out what she will do and how she will live with her new diagnosis. I wondered back to the beginning of my illnesses and I remember the feeling and thoughts that this cannot be happening. It was quite a hellish time for us, but now as I look back the shock, hurt, and pain of diagnosis has somewhat faded as I learn to live differently, as Brenda does and will need to figure out even more with her new diagnosis. I have complete confidence she will be just fine, eventually.

I/we are NOT our diagnosis. Granted there are those times during increased pain and other symptoms our illness does define us and our life. It defines our heart and soul, the deep down core of who we are. Still we function with a "normal" brain and thoughts as everyone else does. We still have hopes, dreams, hobbies, families, jobs for some, friends we love and adore, we love to laugh, etc, you see we are no different than you. For me, since my diagnosis my passion for all of these has intensified. The little things are so special to me. You see diagnosis for me is not all doom and gloom. I cannot say that at first when I was going through test after test, crying all the time, wondering why and thinking I cannot do this, but over time that changes. After the years as they roll on the thought process changes and the little things like spending some time with someone, or watching a tv show, making love to my husband, hugging and kissing my grand babies, getting a card in the mail, people telling me they are praying for me, brings on something new. A new appreciation. Your heart and soul become much more connected and aware of the beautiful little things that surround you. All the things you never had the time to notice when you were so crazy busy and out in the world. You see, i/we are NOT our diagnosis.

It is always so fascinating to me how people act when someone is diagnosed with cancer. I hear the gasps of air when someone hears the news, almost as if the life of the one with the cancer is over when in reality many more people survive cancer than those who do not. This always makes me wonder why we are so afraid of disease and we do not look at it as a wake up call, for all of us? Why don't we embrace it? Grow from it? Look at it as not only our wake up call but our gift. Our gift that puts everything into perspective, to teach us that the little things in life are just that, little. Why can't the people around us who flee, understand we are still living, still like them, still alive, and still need them?
I am not all the drugs I take, I am not contagious, I am Dianne, not a sick person who needs or wants your sympathy. I just want to be treated like everyone else and need a little bit of simple understanding, not pity. If I had the choice to be ill or not be ill I'm not sure which I would pick. It isn't like people go around saying or thinking, "Oh yes, I'll take that disease," but with that being said, if I had the choice to keep all the things that illness has taught me I think I would have to say, "yes, I will take that."  i/we are NOT our diagnosis!

As you can see, in some ways I really am my diagnosis. It has formed me into the person I am today. Why I feel I need to suffer in silence is beyond me but it is what the real world expects. For me it is always there. When I feel good and I open my big mouth and tell Rich I had a really good day, the next day I might wake up horrible. Just when I think maybe the nightmare is over it returns with a vengeance, but that is okay because I can handle it. I am now an expert at taking care of myself, it is my job. I have the control over my thinking and even when I want to give in I tell my illness, "You will never get a hold of that so the joke is on you. You make rack my body with these symptoms but my way of thinking is mine!" i am NOT my diagnosis!

In the ending of this entry it is my hope that if you have a friend, family member, coworker or anyone in your life who has been struck with illness, long term or short, remember they are still a person. They still need you there to bring some normalcy to their lives. You may be the only one who does. Take the time to forget their illness and about their diagnosis and just be a friend. Don't look at them with pity in your eyes, but with the same look you had before they were diagnosed. Make them laugh, tell them stories of your life, tell them about your job, tell them about your trips and share a piece of yourself. Don't act like they are already dead and gone because they are still here and still alive. They still want to hear the good that is happening even though you think they don't.
I had a Hospice patient and her daughter who taught me a lot about this. This woman was suppose to die very fast but she ended up living for months. Her daughter was by her side everyday. I visited her week after week and a few weeks before she died the daughter taught me a very valuable lesson in dealing with the dying. She thanked me, for the last time, as we knew the time was coming for her mother to die. "Dianne, every week you came to visit you brought us a piece of the outside world to us. We loved hearing about your family and your smile brought sunshine to us every week. We looked forward to your visits every week. Thank you! These four walls can get awful lonely at times." She hugged me as we both had tear rolling down our faces. You see, you never ever realize the impact you can have on someone by just a giving someone else a little piece of yourself. What are you going to do?

Remember: i/we are NOT our diagnosis!

God Bless!


Friday, April 13, 2012

Nothing Is Ever A Big Deal Until It Happens To You

Last night I was sitting with the TV on and I received an e-mail from a dear sweet lady telling me of the cancer treatments she will be starting next week.My heart ached as I read her words which sent me into more deep thinking. As I sat there and thought about it this came to my mind, nothing is ever a big deal...until it happens to you. How true this is when you think about it. I am sure the return of this persons cancer was not something she or anyone who knows and loves her would have wanted, but it returned none the less, and now they all must deal with it. It is a BIG deal. It is unfair, but it is happening. They cannot run and hide from it as the reality is is thrown at them. The surgeries, the recoveries, the treatments, the waiting in agony for the nightmare to end so they can get back to their life without this dark cloud hanging over their heads. All I or any of us can do is pray. We cannot fix this reality and I often wonder why people try to fix it for the person who is struggling with words. Words that people say when actuality they have no idea what they are talking about. All I have to offer is prayers and the love that I am able to send her way and I will continue to do so as long as needed, all day, before bed, and even when I wake up in the middle of the night.

The more I thought about the whole, nothing is a big deal until it happens to you, the more stuff popped in my head. I could write a book on this but here are a few more things I came up with that had I must deal with myself through this hell called chronic illness. I decided I will write this in a list form because for me I love lists. I need things spelled directly out for me because if they aren't I will forget something. My memory is not as good as it once was. I believe not only from the drugs but from the illness. My poor brain is on overload on most days so my memory suffers, my doctors tell me because of all the signals my body is sending my brain. I forget things I shouldn't forget and now tell my family to text me to remind me of things as I do forget so easily. It is very annoying but it has happened so we all deal with it in the best way we can. So, more for me than you, here is the list:

1. Headaches. What do you think of when you think about headaches? I would guess for most of the normal world a headache is a minor annoyance. You frantically look for the tylenol or asprin knowing if you pop a few it will be better soon. For those of us who suffer from migraines a headache is a hellache. Unexplainable to someone who has never experienced one. Flashing lights in each eye even in a dark room with a towel over your head. I always tell  myself just enjoy the fireworks, this shall pass, this shall pass. Pain so bad that you cannot even fall asleep because it feels like someone is taking a ice pick and jabbing it into your eyes/brain, or wherever your pain may be. You try to lay still hoping it will go away. You pray for God to take it away and make deals with him, please God take it away I will get up and do something good for someone else, I promise. Yes, those stupid deals we make with God to feel better. If someone in your house is eating something and it has any smell what so ever it may send you into the bathroom to puke even though you have nothing to puke up. Noise, oh my, noise. You cannot even stand hearing the heat run because it just brings more pain to your head. The unexplainable symptoms of a migraine. One of those, nothing is ever a big deal until it happens to you, things.

2.There are a few other things I will categorize together here because I really have no business writing about them because I have no idea what they are like. I have not experienced them so how can I write about them? All I know is I have watched and heard stories from people who have suffered. For me being very empathetic (being able to put myself in someone else's place) here is what I have seen and learned.
-Losing a parent is very painful. When someone loses one parent they are sad but they still have the other parent to worry about and take care. I have watched people lose the second parent and then they fall apart. You see they are so busy helping the one parent who is left they forget to mourn the first parent that has died. When the second parent dies many suffer the loss of both in which they never did with the first death. I still have both of my parents, therefore nothing is a big deal until it happens to you. This is true, but I think we all can relate to this loss as we even ponder on the idea of losing a parent, if we are lucky enough to still have both of them.
-Cancer. I have never had cancer so above as I wrote about my friend I cannot talk much about this because I have no idea what it is like therefore, nothing is ever a big deal until it happens to you.
-A job loss. Even imagining this is a scary thought. I have stated before stuff isn't that important to me but to not be able to pay your bills for necessities is a very scary thought. I cannot even imagine. I am thankful Rich has been able to have his same job since he was 13 years old. I am unable to work so for us it isn't just about paying our bills but very importantly having the insurance. My heart breaks when I hear people have lost their jobs and insurance, if they ever had it in the first place, or were able to afford it. Nothing is ever a big deal until it happens to you.
-Losing a child. This one there are no words.
This list could go on but you get the picture.

3. Last but not least something I am an expert on. Being chronically ill. Talk about, nothing is ever a big deal until it happens to you, this has to be on the top of the list for me/us. When you are healthy and you first hear of someone being ill you almost panic. The shock, the reality and the whole 'no way' hits you when you hear of someone being sick or having something happen. Then you think, what can I do for them? Some people send cards, flowers, stop over to see them or drop off a meal. It is nice for this ill person to know people care and that you have good people who pray for you. It is such a comfort for the ill person. But then time goes on. The person may not get better. The days pass and they are not finding or getting an answer to their illness. They suffer and what happens? Those people who were there when they first heard someone was ill disappear. Many people can't handle illness that lingers on and on. Human nature tells us we must "fix" everything. I often wonder what people think and all I can come up with is: If I send a card or I do something nice then I am off the hook, I did something so what more can I do? The thing people do not realize or understand is the ill person continues to be ill. They learn to suffer in silence because when people ask how you are all they really want to here is you are good and better. The whole, nothing is ever a big deal until it happens to you, fits beautifully in this category.
When I think about my living situation the one and only person who understands my illness and has stuck by me like glue is Rich. I know I have written it a million times in my blog and I will continue to do so. He is the one who watches me suffer. He is the one who takes care of me when I am in pain. He is the one who, if he could, would walk to the ends of the earth to cure me. He is the one who can understand, nothing is a big deal until it happens to you, because his life is different than most of the other married men he knows. He worries constantly. He works hard to provide, all the while wondering if I am okay. If I have fallen and am laying hurt. If I am overdoing it. If I am resting as much as I should be. He sees me without makeup and messy hair and still puts his arms around me and kisses my forehead. He holds me when I am crying because I don't understand all of this. He understands when I can't get up and go to church as he continues to go without me and gives me a mini sermon when he gets home. He understand when dinner isn't on the table after a long hard day at work. He grocery shops alone when I have no energy to go. He takes me to doctor appointments and then recites every word to me that I missed because I shut my brain off and just don't listen, my way of coping I guess. He never looks at me with those looks of, she can't be sick she looks fine, because he lives it right along with me. He sees what others don't. For him the, nothing is a big deal until it happens to you, is just as much of a reality for him as it is for me or than most married people, friends, or family could ever understand. I live it and he has to watch me suffer. I don't understand how he does it but he does it with love and understanding of which I do not deserve.

4. This one somewhat is a continuation to #3. It is about taking drugs. I am taking medically prescribed drugs. I have heard so many people in the past talk of someone and say things like, "Oh you know her she is always at the doctor she is a hypochondriac." This talk has been overheard by me when I am in a room full of people, not about me, but about someone else. Or I might hear, "She always has something wrong with her." I can hear these specific conversations and I remember who said them and who they were about. I heard these when I was first ill many years ago and was more quiet and would allow people to talk smack about someone else. Now, I am a different person and I would speak up and tell them, you have no idea what other people live with, nothing is ever a big deal until it happens to you and you have no idea what someone else is living.
I recently added a prescription pain med to my daily regimen, not an easy choice but needed none the less. I fought this for years. I always said I would never take prescription pain meds on a daily basis but I felt I should give them a try, never say never. Now that I have tried them I am asking myself, more kicking myself, as to the the reason why I was so reluctant. What a different they have made with my pain level. It is much easier to get through the day and without pain I am able to do so much more. Maybe I was afraid of more comments like, why would you take so many drugs?, Or, my favorites, you need to just take this vitamin instead or you need to eat or not eat that, blah, blah, blah. Well, hello people, those things don't work for me so shut up and please remember nothing is a big deal until it happens to you. Thank you very much. Disclaimer: I try to be a nice person as often as possible but after years of this illness crap you do tend to get crabby and quite outspoken as need be. Thank you for understanding and if you don't well I'll leave those words to your imagination..............I just don't care anymore! I am sick of people thinking they know what is right for me and my illness when they do not know any of what is happening with me. It frustrates me and annoys me to death!

My hope with this blog for you, is an understanding that when someone is going through a hard time, short term or long term, you can take the time to understand. Don't give them your advice, just shut up and be there. Let them know you care. It is the simplest things in life that can mean the world to someone else. Get out of your comfort zone and do something for someone. You may be apprehensive to do something for someone in fear of rejection but I guarantee you will be rewarded more than they will. After all it really is the simple things in life that bring the most joy. The next time you think that nothing is a big deal until it happens to you, think of someone who needs you and needs to feel God's love through you! Walk the walk instead of just talking the talk.

God Bless!


Monday, April 9, 2012

What Do You Want- What A Question

Sometimes what you want isn't always what you need, but in the end what you get is so much better than what you wanted.
Read that again and take a few minutes to ponder on what those words really mean for you.
Sometimes what you want isn't always what you need, but in the end what you get is so much better than what you wanted.

When I found this saying in one of my journals this morning I remembered reading this many times before and I even recall posting it on my facebook wall once or twice because of how powerful just a few words can be. When you look at the world and how it has changed over the years this quote seems almost like a thing of the past, especially when it comes to material things. I watch as the younger generations make as much money starting out with their lives which took Rich 25 years to work his way up to that amount of pay. Rich and I appreciate every penny and spend it very wisely. It took us years to be able to afford the simple things that we "wanted" for our home. We never idolized having everything but the necessities like a nice couch, nice blinds, some of those things took us 25 years to finally be able to afford. The dreams and thoughts we would share with one another that one day we will do this or that, never knowing when that day would come. We have never taken long trips away together because it seems, first, we could never afford it, second, something else always came up, braces, glasses,  and third, something would always need fixing or the washer broke and we would need a new one. Believe me, I am not complaining at all, we have a wonderful life together and I wouldn't change a thing, we are simple people who can find joy in the simple things, like one another! I just have a hard time watching the younger generation get it all and have nothing to dream about, it saddens me. It seems now the take is, oh well if it breaks we'll buy a new one, or I want it now so I get it now. I guess this is just how the world has changed. Material things seems to matter so much more these days. The way I/we look at is we came into this world with nothing and we are leaving with nothing, so what is the point of having all this stuff? I am so happy we are able to find our joy in a kiss or a dance around the living room, those are the real "material things" to us.

As was meditating on the saying, Sometimes what you want isn't always what you need, but in the end what you get is so much better than what you wanted. I thought about this for a while and how it connected to being ill and I think I found some sort of connection. Monday's are hard for me. I do not look forward to them for totally different reasons than most of you. I have somewhat of a jealous heart, even though I am not a jealous person at all and maybe it isn't even a jealously as much as a hurt, a new week starts out and once again I am alone as everyone gets to go out into the world and connect with people. Yes, many people they don't get along with coworkers or they must go to a job they don't like, but the point is they get to go our into the world and be a part of something bigger. A chance to live their faith and share compassion with others. So, as I read and reread this saying I think to myself, maybe being out there in the working world isn't the greatest thing I could be doing on a Monday. I already know at the end of my fight I will win the best prize of all, but my struggle is with the 'in between' stage. The feeling useless and helpless to this thing called life. Being trapped, wanting to spread my wings like a butterfly and deposit good out in this world of a lot of unhappy souls. I struggle with this today but I will continue to tell myself that in the end what I will get will be much better than what I wanted today. Tomorrow is Tuesday, then Wednesday, then Thursday, and then YES Friday! I love Friday because it means I am not alone! Many times I wonder, if I hadn't gotten sick would Rich and I realize how much love we have for one another? Would I have had a job and we would have just continued to take one another for granted instead of being able to connect our souls the way we have since I have become sick. You see, another bonus when I read this saying, in the end what we got as couple is so much better than what my own selfish wants and needs wanted. I wouldn't trade that for anything.

In the end we all must realize, on our own terms what is important to us. If that is material things that it is, if not then we must feed and nurture that which is important to us, for me that is love, what is it for you? Life is good and we must make the best of each day whether we have it all or not! Today as I become sad or start to think I am useless to this world I will read and reread this saying and remember. I do matter and just because I think I need something, to be like everyone else, there is a reason I'm not and that is okay for today, just okay!

God Bless!


Wednesday, April 4, 2012

Just When You Think You Don't Matter You Find You Do

I have been struggling very hard the past few months ever since I had the horrible set back. It is funny how you can be doing so well and wham you are slammed back into a place you never thought you would have to go back to. It has nothing to do with the physical sick part, after all when I get that sick I don't have to worry about a job, having young children to take care, or a husband who doesn't understand. I am very fortunate to have none of the above.

The problem for me, before the flare hit, I was at a place emotionally where I thought I had actually accepted my illness as a way of life for me. I was able to go to the store by myself on occasion to pick up a few things. I was doing more around the house and getting together more with my family, not much but it was better than not at all. Then as I became sick it was like carrying a ton of bricks on my back emotionally. All the questions that flooded back of the why this, why that, why? I tried to block out the why's but it isn't that easy when you are sick. Instead of sitting doing nothing, on the days I did feel okay, I made my homemade cards. I always figure if I can't do much physical then I can do something else, send cards to those who struggle, all the while as I still would struggle myself. Always asking myself, does it really even matter if I send someone else a card? In a selfish kind of a way I do it for myself as much as I do it for them. It gives me a purpose.

As I became ill again it brought back all the thoughts that I will never be able to get a job, that I am worthless. I don't need any sympathy in writing this, it just is what it is. I just cannot figure out for the life of me why I am here and it is a never ending struggle. I know I am here for my family and such but it is more of a reason to be here for myself. My self worth must solely come from who I am and not what I am able to make out of my life, like most people are able to do.

This past week I got a reassurance that sending out my cards is exactally what I am suppose to be doing and that God really is using me. We have a dear friend who lost her husband and then right after he died she became ill and had serious surgery. I had been sending her cards as often as I could, without having her think I was crazy. I pray/ed for her and her recovery. This past Monday someone knocked on my front door. You must understand, I never answer my door, but this time I felt I should for some reason. When I opened the door there was an older man standing there with the BIGGEST bouquet of flowers I have ever seen. It was HUGE! It was from our friend who said she wanted to thank me for all her cards and told me how much I encouraged her. I was blown away! I still am. I have been overcome with emotion to think that something as simple as a card could mean so much to someone that they would send me a garden of flowers.

So in ending the more I have pondered on the flower delivery and on our friend I am convinced this IS God's way of telling me I really do still matter. Granted, I may not be like the rest of the world, but I am me. If you know me at all, God really did break the mold when he decided to send me here to earth because I have never felt like I belonged here anyways. I have a better outlook on life this week because of that special delivery. The funny part is that on Monday I woke up with the mind set that today I will be positive. No more negative thinking, as much as possible, I am still human. Then The flowers came that day. Human thing or God thing? I know my answer I get it every time I look at those flowers sitting on my table.

God Bless!