Tuesday, January 31, 2012

Acceptance. Are You Sure About That?

It happened again. You know how they always say the place where you learn the most is when you are down in the valleys of life? It is so true. Last night I really had the reality hit home. I called a friend who was going through some hard times and I realized a few things about me as I hung up.

I learned that I am a liar. A really good one too. Maybe not a liar but just good at convincing others that I have accepted what I have to live with. When I am doing okay and living my small simple life it is easy for me to say I have accepted this illness thing. I think I even wrote a blog about it sometime back. Whoops sorry for the confusion. It is easy to say I can do this when in reality I am only lying to others to make it easier on them. If I tell and act like I have accepted it then it doesn't exist, for them at least. You see, it is very hard for me to talk to other people about my illness. I have a very good coping mechanism to get out the conversation when people want to really know how I am doing. Last night I learned what it was. I always say, "Someone else has it worse off then I do." It is the perfect escape. It shuts the person off from asking me more questions and it gives me the freedom of not having to even attempt to make others understand. I can't explain what I live with, it is impossible, unless you are here and you actually are able to see it. Plus I have also learned as, with many things, unless you are living a situation you can never possibly understand it.

All of my talk of accepting that I have to live like this forever is fine and dandy when I am feeling okay but when I get slammed down like I did sixteen days ago, YES I do know how many days, minutes, and hours it has been, the whole acceptance thing gets thrown out the window. I haven't accepted this hell. Who could? Really? It is horrible and it is very sad. I cry and cry when I am like this because when you are ill it brings you down on your knees and forces you to dive into the depths of your heart and soul. You don't want to be like this but when you are this ill there is no control over your emotions. You wonder is this the start of something new that will not allow me to go back to the okay stage? I am good in the okay stage. I can enjoy my family and not much more but I am good with that, really I am. When I am like I have been the past sixteen days it is hard to enjoy anything because your body is using all its energy to just exist. Yup, I know it sounds crazy but remember what I said above you will never understand it until you live it or see someone else live it.

So when I compare myself to someone else or say that others have it worse than I do I really do believe that is true but I also know this is MY hell. It is not comparable to someone else's hell but my hell none the less. Just because someone else is worse off doesn't mean that I am not suffering. Just because people like to tell me there are people much worse off then I it doesn't make it easier for me. It makes me shut off. I am certainly not going to open up to someone who tells me so and so is in the hospital so be thankful you aren't. Yes, I have been told things like this. I know, I'm not stupid but I also know how I feel and you have no idea. Ahhh the thoughts that go through my head. Which brings up another problem when you are chronically ill you have way to much time to dissect every word that someone says to you. You read between every line, big or small. After a while you avoid the naysayers and you know what? Somehow over time you are okay with it. Another loss you don't want to accept but it is what it is. I tell you I don't know what I would do without Rich here keeping me grounded. He is my sanity when I am losing it. I am so thankful for all his kindness toward me when I am in the mode to just give up. When you are in the lowest valley it is so easy to just want to give up. But then I think if I give up the illness wins and if I think like that I just get pissed off and think no way in hell am I going to let this illness win!

In the end it is our own battle to fight and hopefully someday win, even if the winning day is death, we will win. It doesn't really matter how many people surround us or support us it is our own battle. It is our own hell to live, to figure out, and hopefully really accept one day. Until then we push on with our good days, bad days, and okay days fighting every step of the way. This too shall pass!

God Bless!


Thursday, January 26, 2012

Yet Another Loss- A Huge One

This chronic illness has taken so much from me that I have sort of gotten use to it. I mean I finally understand I can't do the things that normal people do like go bowling, or go to the beach, or go on a long hike in the woods, go to a movie, go out in public because of germs, or all the other physical activities others are able to do. It has taken a long time but I am actually fine with it. It seems when I do those things the pay off is not worth it so I have just come to the understanding that laying low is better for my health then the torture I would endure if I gave into every want or desire to do anything that is physically taxing.

When I write the above, or think about the above, it really is all good until I get to the reality I am facing right now. My heart is aching and every time I think of this loss and I start to cry and cannot even bare to think of this one. The other losses are fine they are just stupid entertainments. It is easy for me to find other pleasures to take their place when I am home. All my hobbies and my favorite, being in my husbands arms. I wish I could stay there 24 hours a day but poor Rich is out working hard so we can keep our home we have and so he can provide me with all I need to get through each day. Always telling me to take care of myself and never being selfish in anyway. I don't know how he does it. Love, true selfless love.

The loss I am facing now is the loss if being able to take care of Hunter and Addi on a weekly basis. It is not fair to them to have to come here when I can hardly get off the couch to play. I don't even have the energy to get the art stuff out to do a project. I try to do the best I can but it isn't fair to them and they should be in an environment that they can flourish and be with other children. Where they are able to play outside and run around. It pains me that I have to give up something that I cherish with all my heart but that is what illness does to a person. Just when you think you cannot lose much more it strips away even more. Slowly, over time, it tears you apart. Your life changes into something you don't want it to change into but you have to deal with it and accept it. I keep telling myself it will be better because I will have a few more days to take better care of myself and hopefully have good days that I can go pick Hunter and Addi up and just have Nana time with them. You know what that means? Of course, spoiling them rotten! But then it also brings the worry of someone else watching them. Someone who doesn't love them with my Nana heart. Someone who won't understand what each whine or cry needs. Someone who won't grab them and smoother them with hugs and kisses and make them giggle as they walk around with lipstick stains on their cheeks. Heartbreaking for me. But then I can also see their smiles if they are able to play with other children. I know they will be just fine!

As I face yet another loss I also need to look at it as a gain. When I do get to see them I will be at my best. They will get only the good days and not have to see me on my bad days or ask me, why can't we do this or do that Nana? How do you explain that to a 2 year old and a 4 year old, because I don't feel good? They don't know what that means nor do I want them to remember me as the "sick" Nana. I want to them to remember the good times, the love, and just how special they are to me. Now and forever. So this is the right choice. Not easy emotionally but right for all in the end.

So in the end for me and for all of you: I/We must remember good always comes out of bad and in our heads we always seem to make things much worse then they ever turn out to actually be. I love and adore you Hunter and Addi!

God Bless!


Tuesday, January 24, 2012

Becoming Your Own Doctor

I'm not quite sure when it happened. It isn't like I woke up one day and thought, "I need to be my own doctor," it just happened slowly over time. When I first got sick many years ago I allowed the medical profession to constantly inform me that all my problems were in my head, or I was fat, or i was lazy, or I needed to eat better, or I needed to relax more, or I needed to exercise more, or the pain was in my head, or I needed to have more sex (OK that one I was never told to do but it sounds good to me), anyways you get the picture.

Finally one day I had to see a different doctor because mine was out of the office and I was really hurting The first thing she said to me after looking at me and looking at past blood tests was that I had arthritis I thought to myself, FINALLY a doc who is going to help me. At that time that was short lived too because she sent me to a sports medicine doctor who basically told me I was fat and needed more exercise. I never went back to her and basically gave up on all medical help and any faith I had in doctors.

I went for my yearly physical in 2006 and said to my doc, "I can't continue to live on like this anymore." This time she actually listened and asked if I wanted to see a Rheumatologist? Of course I said YES! I asked her if there were any women in the area because I had already been to a male one, last name starting with the letter  M, many years ago and I needed a doc without an ego that filled the room with arrogance. She told me there was a new woman in town. Dr. Jolene Key. Amazing doctor! I never in my life had a doctor spend so much time with me before. The first appointment had to have been at least an hour or more. She still continues to have lengthy appointments every time I go. I am indebted to her for listening to me, treating me with respect, and helping me feel better. After seeing Dr. Key I she suggested I get an Internist for a primary doctor. It just so happened Dr Cory was in the same office as Dr Key so I switched to her and love her!

Although I do have really good doctors now I have also learned to be a partner in my care. I have learned I cannot count on the doctor to make everything better. This is how I use to think when I first got sick. Why can't they help me? Why can't they make me better? Why? Why? Now I have learned my care is a 50/50 process. I must do my part. I try, I really do, to eat healthy, I get plenty of rest and sleep, I try to stay active and on my feet. This does not include a 30 minute work out like most people. For me it includes picking up the house or playing with my grandbabies, it is all something for me, not much for a healthy person but for me it is like climbing Mount Everest on a daily basis. Just keeping myself in order is a full time job all else is just an extension of life that wears me out to the bone. Crazy as it sounds!

I have also learned, in the past and especially after the past 10 days that when I am really down and I must call the doc I cannot always count on their advice and sometimes must take matters into my own hands. It is hard because I have an office where my primary doctors MA's think they can diagnose me for some reason without talking to the doctors. I can call and I get their advice when they never even talked to my doctor. Last week she even made me cry. Believe me I don't cry but when you are that sick it brings out the core of your soul and can bring you to your knees. I love my primary doctor, I really do, but when the help isn't that great you can get very frustrated. For me I am fortunate to have my Internist and Dr Key in the same office so when I was told "You probably had a bug" I told the MA to talk to Dr Key because this is NOT a bug. Geeze I am 49 years old I know the difference between a bug and my autoimmune flares. All this as I was sobbing. She apologized but it still makes me angry that I have to be the doctor when I am feeling so sick I can hardly stand up and I NEED a doctor. The energy it takes to even call the doctor is draining enough but then to have to explain to one person who doesn't take a message properly for the nurse it just makes it even more frustrating. I feel I am stuck. Do I leave a office because of incompetent help or do I stay because I really do like my doctor??
So once again I become my own doctor. Don't get me wrong finally after things got straightened out and the MA talked to Dr Key I did get proper advice. I really should be calling back today but I don't want to deal with the help again. Frustrating! So I decided to be my own doc today and increase my prednisone again hoping I get more relief from this hell. We shall she. Dr Dianne is in the house! Ya baby!

I don't write this to complain but to educate. I hope all of you reading this have learned you must take some charge of your health and your health care because after all you really are just a medical chart number. It sure isn't right or is it fair but it is what it is. So take charge! I bet you could become your own doctor if you needed to! Take care and stay healthy!

God Bless!


Monday, January 23, 2012

You Never Know Until You Walk In Another Persons Skin

Today my facebook status goes like this, "You never really know a man until you understand things from his point of view, until you climb into his skin and walk around in it." I love this quote because it is so true. Think about it for a minute........................Okay STOP your minute is up. My turn now.

My take on it. Think of a time in your life when you heard something about someone. Could be anything a cancer diagnosis,  their child getting in trouble, a family arguing over stupid meaningless crap. You think about their situation in your head and either think or say to someone else, "I would never do that if I was in that situation." Or, "I think they should do this or that." You think you have all the answers for that person or family. Well, I am here to tell you that you don't. You never know what you would do in any situation until it slaps YOU upside the head. You never know until you walk in another persons skin so shut up!

I remember when Dave and Katie told us she was going to have a baby and people told us it wasn't a big deal. Now looking back it wasn't as bad as we thought at the time but at that time it was devastating for us. Surely not the way you picture your child starting out. I got so mad at people telling me, in there little chuckling voice, "it's no big deal it happens to everyone" then I began saying to them, "ya, it isn't a big deal because it isn't happening to you." Turns out Hunter was and still is one of the best things that ever happened to us all! We just had to get through it our way and realize it ourselves. You never know until you walk in another persons skin so shut up.

I also think back on the years I was a stay at home mom. It sure wasn't then, nor is it now, the most popular thing to do. The snide comments I would get from people, including family, "You have no idea what it is like to have to work full time and be in the real world." Seriously? Well, probably not but my kids are wearing Target jeans and not $100 brand name jeans, plus they have me. Back then I was a nice, sweet, quiet person who allowed people to speak to me like that and walk all over me. I allowed people to take advantage of me because "I stayed home and did nothing all day." What an idiot I was! Not anymore. I still stay home all day now and I am proud of it plus I have no kids at home, wonder how much that pisses people off? Don't really care! If I get anymore snipe comments from anyone believe me they are going to know where I stand and they are going to know they are not going to talk to me like that ever again. Even back when the kids were little I was in pain I just never told anyone. Sadly it isn't like anyone would have cared then because they sure don't care now. You never know until you walk in another persons skin so shut up!

Since I have become ill, to the point of where illness controls my life, it has helped me even more to realize I do not have the answers for anyone or their situation. I can't fix their problems. I can be there, I can listen, but I cannot fix them. Hell, I can't even fix my own issues so how am I going to fix anyone else? What I do? I always think to myself, "You never know until you walk in another person skin so shut up Dianne!" Seems to be working fine for me. Now if everyone could learn that what a world this could be.

Yup I'm Back On The Steroids And It isn't Pretty So Watch Out! I am getting meaner by the minute. lol

God Bless!


Sunday, January 22, 2012

Remember When?

Try to remember back when you were a child, that is if you are able to remember back that far. I know sometimes it isn't easy unless an incident sparks your memory, especially when you are a half a century old or older. Do you remember when you were a child in gym class and you played with the big piece of cloth and everyone held on to a corner of the circle sized cloth? The teacher would count to three and at the same time everyone would throw the cloth up in the air and the cloth would turn into a big balloon. I can remember after the entire class had that mastered we would all have a chance to run under the middle of the balloon. Only a few of us at a time because obviously someone had to hold the balloon up while the few kids were under it. Although if my memory serves me right I can remember once in a while talking the teacher into letting us all go under at the same time. We would all count to three and run in, the balloon would fall and there we were scrambling to get out of the balloon. I remember the fun we had as children trying to find our way out but I also remember kind of freaking out because it would get a little dark under that balloon and you were on your own trying to find your way out. I remember many times I couldn't find my way out. I would some what start to panic in trying to find the edge.

I can also remember another time our family went swimming at Gun Lake. This was not unusual for our family as we went to the beach almost every weekend until we started camping. Gun lake was perfect because it was so shallow. I loved to swim. I remember one time I was out in the water by myself and practicing summersaults. I tried and tried and tried but I couldn't get it perfect. All of the sudden when I was doing one I couldn't find the top of the water. I was stuck rolling around trying to find air. I seriously thought I was going to drowned at that moment but after a few minutes somehow in a panic I found the top of the water and could breath. I still remember just standing there in a panic trying to process what had happened. It was so scary I had to go sit on the beach towel to calm myself down!

Now as I live with chronic illness I can compare it to the two stories, especially after this week that has passed. On most days of living for me I feel like the summersualt incident. I tumble around and around getting out of the rumble and catching my breath at just the right moment. I make it out. I do what has to be done and I feel scared but don't panic about it because I made it! Other times, like this week, I am the child stuck in the middle of the balloon. I know I am going to find my way out eventually but it is a dark, scary, lonely place to be. I struggle to make it out of the black hole that is consuming my every move. Even as I am alseep at night in my warm bed I am haunted as I am being awaken by the choking because I can't breath or catch my breath. It is another dark, lonely, scary place to be. Then in the morning when I feel Rich standing over me watching me because he thinks I am not breathing. You see this game is not the game where the whole class gets to have fun it is torture not just for me but those who love and see me live this hell. That part pains me more than the illness, believe me!

For now I wait. Wait for the corners to start to show their light as I am stuck in the middle of the big black hole. I know the light will be shining soon. I just have to hold onto that hope because if I don't mind my goes back to the 'I don't want to live like this' place and I can't allow myself to go there. It is scary because I have not been this bad in years. I do have the occasional times when I am down for a few days but at least on most days I am able to enjoy the little I can do but this is different. This is not good, not good at all. As I continue to wait for the light I hope you are able to do the same with whatever situation you may be facing.


God Bless!


Saturday, January 21, 2012

This Too Shall Pass- Right?

I am such a hypocrite. I think we all are in one way or another even if we don't think we are. My issue right now is the fact that when I am feeling good I encourage others when they aren't feeling well to "hang in there." Or I write to them that things "will get better." I know things usually do but how can I write that to others when I know what it is like to be in the dooms of hell? People say it to me and I know it is true but when you are here it is so hard to think that far ahead to feeling better as you are struggling to just make it through each minute that is in front of you. The energy it takes to just type these words or to breathe is exhausting. When I am like this I just want to curl up in a ball and be left alone. I can cry at the drop of a hat. This is not me at all. The worst part is when you are in this state you begin to think the crappy thoughts that you are lazy and wonder why you are even here. I mean really, you are no good for anything. Example, least night I took a bath. Simple right? Wrong! I wanted to wash my hair but by the time I ran the water, took my clothes off and got in I had no energy to even wash my hair. Yes, that is how bad it is. I am sure someone who is healthy cannot even imagine that as taking a shower could be so energy consuming as  for most people is no big deal. This morning I want to take a bath but all I can hear are the sheets calling me to come back in and snuggle up, which isn't a bad thing either because at least when I sleep I can dream. I love that because in my dreams, I am healthy, in most of then at least, unless I am dreaming I am at the doctor or one is coming at me or yelling at me in one way or another. haha! In the good dreams I am usually on some adventure and running or laughing and having a good healthy time with people who are in my life now or have been in the past. I had a great one last night. Yes, dreams are good! So I think I will sign off here and go try to fade off into dream land where maybe I can even get my hair washed or wake up in a better state!

God Bless Your Day!


Thursday, January 19, 2012


This to shall pass, really? How come it is so easy for me to say or write these words to someone when I am feeling okay but when I feel like shit, pardon the grammar, it isn't that easy for me to believe it is true for myself?

Usually that is how I feel okay. Okay is good for me! I appreciate okay, I really do. Great is never in my vocabulary but I have come to realize it may never be again but I am okay with that. Just when I think my okay is, well okay, I get slammed down for no reason at all. This week is not a good week and it is very discouraging to be in the middle of this hell. It has been five days now, isn't that enough? Really? It is for me, can you see the white towel waving? I feel I have paid my dues so today I was suppose to wake up in the okay mode and instead and still in the hell mode. I had plans today with my parents, not much but something. Now it seems there is no way I will be accomplishing any of them today. I was going to give my mom a perm and cut my parents hair. You see I use to be a hairdresser until these stupid autoimmunes stole that from me along with most of my life. I do not do much hair anymore at all but the few I do like my parents Rich and the kids gives me some connection to being the person I once was. It helps me to feel like I still contribute something to the world even though I am unable to work. But then I feel like this and on these days I can't even do my families hair, the people who understand and see the hell I am in, the people I want to help and do things for. It sure isn't easy!

So this week I sit. I don't mind, too much anyways. I get to do a few things I don't get to do a whole lot when I am sitting like art and tv. I try not to sit down during the day, on okay days, but when you are weak and ill  you are forced to listen to your body because there is no way you can do too much. I might fall or pass out so I just listen. Listen to the body that controls my life, for now at least until this hell passes.

The worst part about feeling like this is I never know if or when I should call the doctor or which one to call. Do I call my primary doctor because I wonder if I have anemia? Do I call my Neurologist and see if it is the MG? Do I call my Rheumatologist because it is the arthritis? It is so confusing. So what I usually do is treat myself. I know what they will say anyways so why not treat myself? Try the Mestinon for weakness, increase the steroids a little to see if that helps, just rest. So yes, I have become my own doctor. I will continue to try my own doctoring and see what happens. Today is increase the steroids so by tonight I might want to kill someone but hey I might feel better. It is such a give and take.

I am being forced to sign off because my vision is so blurry I can hardly focus. It is so annoying especially since my vision has been okay for the past few months. At least since the last time I saw my Neuro when I was seeing four lines on his test where I was only suppose to see one. This week the blur is so bad I can hardly make out Rich's face when I look at him. This is with my glasses on. I always try to remember what my Neuro, Dr Glisson told me. When your body is going through a lot of issues the brain is trying to process all of it and the eyes are the first thing to be affected. Your brain does not care about you seeing because it is trying to take care of all the issues going on in the body. Those few words from him encourage me to know my vision will get better, I mean okay, as soon as my body decides to get back to the okay state.

For now I push on. I try, as hard as it is, to stay positive and remember this will pass. Soon I will feel okay again. It is so funny to me because when I am bad I can't remember what is like to be good and when I am good I can't remember how it feels to be bad. For now, I push on, even if it is on the couch.

God Bless!


Tuesday, January 17, 2012

It Happened Again

Here I sit once again suffering. As you all know by now I am not one to complain, about much at least, but today is one of those days I just need to vent. So who better to vent to then the whole world? I hate being sick. Seriously! After this past weekend of fun I have been slammed down by the Mack truck once again and think it continues to run over and over me. I knew when I made the decision to play in the snow this weekend, as I always know, that I would pay for it. I was only hoping this just might be the time I get my free pass. You know the free pass I am talking about? The one where I can be a normal person in a normal world and not have to pay dearly later. Just one time that is all I ask, this wasn't it.

We had such a good time sledding with the kids Saturday but I knew when I was out there that I was going down hill. The more I walked in the snow the heavier my legs became. Addi wanted to be held every minute because of her ear issues so I tried as hard as I could to hold her while at the same time putting her on the ground to muster up enough muscle power to only hold her for a few more minutes. I continued to repeat the cycle. Many of you with muscle weakness can appreciate this.

Then Sunday morning hit and it was like the light switch had turned from doing okay to being so weak that just walking took all my energy. You must understand I am not one to just sit around and do nothing so when I am forced to stop because my muscles are weak and I am very fatigued it is very emotionally draining for me. I am still in the weakness funk and hoping the switch turns back to the okay mode before long. So as I sit and wait I keep myself busy with art projects. Work a little, rest. Do a little more, rest. It is not a fun state to be in. But as I always write or tell others, "Things will get better." They will! I know that is true but when I am in the middle of a flare it is so easy to forget the good days will come again. You are only able to focus on getting out of this funkville ASAP! I hope it happens soon. I am thankful I am able to come here and write things to encourage others but sometimes I really need the encouragement in return. I appreciate all of you taking the time to read my blogs not only on my good days but also my bad days.

God Bless You!


Monday, January 16, 2012

Because You Loved Me

I have no idea when my love affair with music began. I like to think it was in the delivery room I can almost picture the doctor cranking up his stereo and the rock and roll was blasting out of the speakers. But when I think of my love for music beginning that way I remember my mother was there to so I highly doubt that's where it started. I didn't grow up with a very musical family at all. My mom sang in the church choir but as far as anyone else appreciating music like I do I cannot tell you. I do remember when our family use to go camping when I was a very young girl and I was always trying to sneak up to the pavilion at a certain campground just hoping to get close enough to hear the top 40 songs they would play as the teenagers would dance. I wanted to be sitting next to those speakers it pained me. I could have cared less about the dance I just wanted to hear the music.

As time passed music became even more my safe place. I had a huge stereo in my room that my parents let me use and it had the best bass. I use to crank it up all the time but also got yelled at all the time to turn that down. You would think when you got told all the time to turn it down you would just learn not to crank it but not me. Everyday I would crank and everyday I would get lost in music and lyric. Of course most of the songs I like, I emphasize the word most very lightly, had some meaning to them. They were almost always love songs because I was eager to fall in love, be married to someone I could spend the rest of my life with. I never dreamed of the big wedding just the love part. Having someone there twenty four seven to talk to, cry to, laugh with, have children with, and do the other fun stuff with. I found that when I found Rich although it took us a few years to figure that out. After I met Rich he and I were just friends for almost three years. Weird he would date some girls I knew and then after their "love affair" would fizzle out guess who was there to listen and pick up the pieces of his broken heart. I never thought of Rich as my life partner. Then it started to change as we began hanging out more and more. At first as the friends we had always been and then I don't know how it happened it just did, we fell in love.

I think of our cheesey wedding song, Just you and I by Eddie Rabbit and Crystal Gayle. We both still weep when we hear it or dance to that song. I think of other songs the kids and I, especially Richie because he has my love of music, laugh at Rich for. He is the worst singer and he gets every word, group, song title wrong. We laugh so hard at him! No Rich does not have a love of music as I do but he tolerates it and always says he likes it when I play music. Many times I know he is lying so I just turn it down a little so he can continue to do whatever he is doing. He is a good man!

I have many songs of which I listen to every single day or many times a week. Wilson Phillips-You Won't See Me Cry,  Gloria Estefan- There's Always Tomorrow to name a few. But there is one song that comes to my mind as the #1 song that plays in my head when I think of Rich and music.It is by Celine Dion- Because You Loved Me. I had heard this song many times in the past but after I was really sick and heard this song I made Rich sit down and listen to it as the words showed up on the screen. It was almost like this song, which was written in 1996, was written for us. The chorus in this song is very powerful for me because it says everything I would say to Rich when I was, and after, I was very, very ill and didn't want to go on. It goes like this:

You were my strength when I was weak
You were my voice when I couldn't speak
You were my eyes when I couldn't see
You saw the best there was in me
Lifted me up when I couldn't reach
You gave me faith 'coz you believed
I'm everything I am
Because you loved me

All of these lines were true for me/us. I was very weak, my voice was like a whisper, I couldn't see well at all, Rich always saw the best in me and would tell me, "It will get better." Rich held me up and did everything for me. He continued to tell me to keep my faith not only that I would get better but in God. He plain and simply just loved me when I know I was unlovable. For that I am truly grateful. He proved to me what in sickness and in health really meant. True commitment which could not have been easy at all for him nor do I believe is now as he continues to do all these things for me still five years later.

I hope music is as much of a powerful enjoyment for you as it is for me. Music that makes you laugh. Music that makes you cry. Music that makes you love. Music that takes your breath away. Music that brings back special memories of time gone by. For me it had done all of these in one way or another and I feel blessed because of it!

God Bless You!


Friday, January 13, 2012

What Do I Really Need To Own In This Life?

The other day I was reading a magazine I received from my mother. We have this cycle going on where she gets a magazine and reads it only to pass it along to me and then I pass it along to my daughters. I think the magazine was either Woman's Day or Family Circle which had a pull out section and the title of it was 75 all-time favorite people, places, & things. Interesting to me because I am not much of a people worshiper or a thing worshiper so I was interested to see what the person who wrote this pull out had to say.

First the list of people. Reading the list really shocked me there are people on there who had absolutely no influence on the world as I am able to see. I mean really, I write and quote, "Farah Fawcett The hair, the smile, the girl next door sweetness" Huh? Not sure she really is one of my favorites. But then Oprah makes it on the list. I will give the writer that. Yes, I do agree Oprah has changed the world in many good ways even though I still have some sort of a love hate relationship with her. I do not like nor do I agree that someone should think they can be a ruler and dictate to everyone what they should or shouldn't do. She walks in a room and it is like everyone stands to attention as she "takes over." I can go on but I will stop the others on the list are not worth mentioning either but you get the picture.

Second we move on to the things on the list. I will only list a few of these too as my list looks much different. A-line skirts. Oh ya one of my favorite things- NOT! Color TV. I remember growing up with black and white and my whole life didn't get better the day my parents bought a colored one. Flat velveteen hanger, heck I couldn't even tell you what those are. Kitchen islands, ya how in the world did we ever live without those? Spray on sunblock nice but really is it that hard to rub a little cream on your body? Geeze, lazy America at its best right there. Retinol cream, another can't live without? Another NOT for me. Cream? Are we suppose to use wrinkle cream? I kind of like mine just as they are thank you very much. I earned them all with the hell I have been through. They remind me I a strong and I have come a long, long way!

Third is the places list. This part I cannot comment on because I really do not and never have traveled. I will not comment on places I know nothing about the except all of them on the list are states in the US that sound pretty interesting. I'll leave it at that.

Now the list according to chronically ill person. Yes, my list looks much different than the one in the magazine.

First my list of people. Most of you already know this list if you have read any of my past blogs. Of course my family. Rich being #1! The person who shops, picks up, caters to my every whim when I am really sick. Thankfully I have been doing ok lately so it is the minor things I might need him to do for me at this time. I am forcing myself to shop, alone I might add, not easy but I am doing it! Katie and Steph who are always there to do anything that needs to be done and always asking how they can help us. My parents or Rich's mom dropping off meals once in a while which are always like someone dropped off a million dollars. Of course I cannot leave out Richie and Leah at U of M always checking in to see how things are going. Hunter and Addi and their hugs and kisses which keep me going when they are not here until the next time we meet. Last but not least on my list are my doctors who care for me. Dr. Jolene Key, Dr. Christopher Glisson, Dr. Jennifer Cory, Dr. Darren Grunwaldt, and I could never leave out Dr. Kevin Hayes even thought he moved away. I love you all! Without them I would be a mess I am truly blessed to have some of the best doctor's in this area taking care of me! You see to me the people that are all time favorites for me are right under my nose. Not just names of far off people who have nice hair or egos the size of Texas.

Second on  my list is things. Ahhh the things that I need and what is important to me. Well, there is one thing I will admit I wouldn't want to live without and that is my computer. My lifeline to the world and music. My connection to something other than my body controlling  my life. I am thankful for my computer.
Other than that the material  things that are  my all time favorites are: Medication, without it I would not be able to do much at all. Heat in any form, bath, heating pad, gels, creams, Thermacares, and hot tubs. Pillows of every size, fullness, firmness, and softness. Books to read and educate me. When I am able to get my eyes to cooperate so I can read, and the words aren't traveling all over the pages, I am thankful for glasses. I am thankful for Temperpedic material, stretchy pants that help me move easier when I am in pain, you didn't really think I would leave stretchy pants out of the list did you? Quick take out places like Subway or Jimmy Johns, both healthy and delicious at the same time.My laundry room so I do not have to go up and down stairs to do the wash. Electric can openers and anything else electric that makes life easier for me. My SUV. You see if I had a car I would be stuck in it trying to get out once I got in. I would need a crane to follow me everywhere to help me out so that would be even worse for the environment. So yes I am very thankful for SUV's! Handicap stickers. Of which I still do not have but would like to get. I just feel if I do that is like the last straw so I am putting it off. I just keep saying can you imagine if I park in handicap and get out of the car? People will look at me like what is wrong with you? People have no idea how going anywhere makes me weak, weak, and weaker. I just don't want those looks, not yet. I am sure I could go on and on but I will free you from my tedious life.

Third is the place category. For me the places I like are the bathtub, my couch, anywhere in the comfort of my own home where I will not be a burden to anyone. Of course my most favorite place of all is in my husbands arms feeling safe from this cruel and crazy world. When I am here I feel the best and there is no one looking at me and thinking she doesn't look sick. He knows. He lives it right along with me. So ya I would say that is my favorite place to be.

In ending this crazy post it is my hope that you will take a look at all the people, places and things that you couldn't live without. I am sure your list would be a little different than mine but we can all agree that this life isn't about all we can gather and possess but what we can give out and what we can receive from the ones we love and the ones who love us!

God Bless!


Thursday, January 12, 2012

The Cab Ride

When I took my Hospice training at Hospice of Holland this was read in one of the classes. I remembered it but could not remember the name of it. A few years later I decided to take the class over and it was read once again only this time I was smart I wrote the name down and had the woman who read it send me a copy. I have had this since 2009 and I continue to have tears rolling down my cheeks and a weakness in my heart whenever I read it. I just had to share it with all of you. I hope you enjoy and appreciate it as much as I do! 


 Twenty years ago, I drove a cab for a living.  When I arrived
 at 2:30 a.m., the building was dark except for a single light
 in a ground floor window.  Under these circumstances, many
 drivers would just honk once or twice, wait a minute, then
 drive away.
 I had seen too many impoverished people who depended on taxis
 as their only means of transportation.  Unless a situation
 smelled of danger, I always went to the door.  This passenger
 might be someone who needs my assistance, I reasoned to myself.
 So I walked to the door and knocked. "Just a minute", answered
 a frail, elderly voice.  I could hear something being dragged
 across the floor.
 After a long pause, the door opened. A small woman in her 80's
 stood before me.  She was wearing a print dress and a pillbox
 hat with a veil pinned on it, like somebody out of a 1940s
 By her side was a small nylon suitcase.  The apartment looked
 as if no one had lived in it for years.  All the furniture
 was covered with sheets.  There were no clocks on the walls,
 no knickknacks or utensils on the counters.  In the corner
 was a cardboard box filled with photos and glassware.
 "Would you carry my bag out to the car?" she said.  I took
 the suitcase to the cab, then returned to assist the woman.
 She took my arm and we walked slowly toward the curb.  She
 kept thanking me for my kindness.
 "It's nothing", I told her.  "I just try to treat my
 passengers the way I would want my mother treated".
 "Oh, you're such a good boy", she said.
 When we got in the cab, she gave me an address, then asked,
 "Could you drive through downtown?"
 "It's not the shortest way," I answered quickly.
 "Oh, I don't mind," she said.  "I'm in no hurry.  I'm on
 my way to a hospice".  I looked in the rearview mirror.
 Her eyes were glistening.  "I don't have any family left,"
 she continued. "The doctor says I don't have very long."
 I quietly reached over and shut off the meter.  "What
 route would you like me to take?" I asked.
 For the next two hours, we drove through the city.  She
 showed me the building where she had once worked as an
 elevator operator.  We drove through the neighborhood
 where she and her husband had lived when they were
 newlyweds.  She had me pull up in front of a furniture
 warehouse that had once been a ballroom where she had
 gone dancing as a girl.
 Sometimes she'd ask me to slow in front of a particular
 building or corner and would sit staring into the darkness,
 saying nothing.
 As the first hint of sun was creasing the horizon, she
 suddenly said, "I'm tired. Let's go now."
 We drove in silence to the address she had given me.  It
 was a low building, like a small convalescent home, with
 a driveway that passed under a portico.
 Two orderlies came out to the cab as soon as we pulled up.
 They were solicitous and intent, watching her every move.
 They must have been expecting her.
 I opened the trunk and took the small suitcase to the door.
 The woman was already seated in a wheelchair.
 "How much do I owe you?" she asked, reaching into her purse.
 "Nothing," I said.
 "You have to make a living," she answered.
 "There are other passengers," I responded.  Almost without
 thinking, I bent and gave her a hug.  She held onto me
 "You gave an old woman a little moment of joy," she said.
 "Thank you."
 I squeezed her hand, then walked into the dim morning light.
 Behind me, a door shut.  It was the sound of the closing of
 a life.
 I didn't pick up any more passengers that shift. I drove
 aimlessly, lost in thought.  For the rest of that day, I
 could hardly talk.
 What if that woman had gotten an angry driver, or one who
 was impatient to end his shift?  What if I had refused to
 take the run, or had honked once, then driven away?
 On a quick review, I don't think that I have done anything
 more important in my life.  We're conditioned to think that
 our lives revolve around great moments.  But great moments
 often catch us unaware--beautifully wrapped in what others
 may consider a small one.
 ~BUT ~

Monday, January 9, 2012

Time Passages

If there are one hundred things that being chronically ill takes from a person there for sure is at least one thing that it gives you back in return, time. Lots of time. Lots and lots and lots of time. Time that someone else might wish they had to accomplish the things they never seem to accomplish. But the sad part is this kind of time isn't like that at all because your body doesn't allow you the luxury to accomplish all those tedious things. For me I have found the time has allowed me to explore much more than I had ever imagined it would have when I first got very sick. It offered me the time to think, a look into my mind that I never really had or took the time to do.

The other day I went with the girls for Steph's dress fitting and then out for lunch, all of which took maybe and hour and a half, not much time for the ordinary person but for me a sacrifice. After lunch the girls wanted to stop at Target, as usual I didn't so we compromised, they shopped while I waiting in the car people watching. As you know this is always interesting and entertaining when you are the watcher and not the person being dissected. I watch a mother grab her son by the arm and yell at him and I thought to myself, lady someday you will regret that when he doesn't want to be around you. I always wonder when parents do things like that in public what the heck are they doing behind closed doors. Childhood damage stays forever. I felt so bad for that boy. Then I saw a mother and daughter loading their car and smiling as they talked. Nice scene for me as my girls were in the store and I was in the car.....waiting. Unfair but life for me. I was happy for them none the less. Then I saw an older couple, our age, and I thought to myself that is me and Rich. hahaha another laugh! We look like that when we shop except usually my mouth is running and Rich is just shaking his head, yes or saying yes dear. hahaha! True!

As I sat there I also thought to myself time flies and what is the point? I ask myself that everyday now that time is my best friend. What are we really here for? What is the point? Only to reproduce? I think back about the times I spent sleeping at my grandmas house on weekends. I remember her although my children never will. When I am gone there wont be anything left about her. The few belongings I have of hers that I cherish will probably get tossed out someday. I wonder about all of our generations past. What their story was. I have papers on my moms side of the family but I wonder what they left here that was of significance to us now in this day and age. Yes, we have everything. Proof is in watching the people shuffle out of Target with their bags of "stuff" that will wither away. I wonder what each of them will leave behind when they are gone. Stuff- BIG DEAL- that's all it is, stuff. Stuff hasnt made me love Rich anymore. It hasn't made me love my children anymore or for them to love me anymore. It is the time spent laughing, loving, and just being together that really matters.

So what have I solved with this post? I assume not a darn thing. Well, maybe one thing. We all are here to make our mark, to try and leave this world a better place than it was when we came into it. In some ways I believe it is but at other times when I see the selfishness and carelessness I regress. All I can come up with is we are here to do good and love. Nothing else really makes any sense to me. Now some of you may disagree but it is always easier to disagree and tell someone else how to live or believe when you have no idea what they have been through. I don't believe it is a one size fits all world and we all must leave our mark, good or bad. So here's to you and leaving your mark. Make it a good one because it is the only chance you have!

God Bless!


Tuesday, January 3, 2012

As I Look Around

It is over. The holiday season has ended. It was very enjoyable and fun but all good things must come to an end. As I begin to look around and think to myself, now all of this has to be put back into place and I have to get it all cleaned again, I become discouraged. I had/have a great plan to clean all it all up today. Go over the surface and get everything where it belongs instead of leaving it lay where it was plopped. Clean the bathrooms, sweep and mop the floors, mop, dust, all that stuff that takes lots of muscle power. You really have no idea how much muscle it takes for you to do all these little take it for granted chores. The reality for me is the plan that is in my head  is going to be staying there for a while. Don't get me wrong there is nothing more I would rather do than do it all and look at it tonight with that feeling of success but as I have said many times before when the body controls the brain it just isn't a reality for me to do all the things I want to do. What takes someone else a few hours to accomplish can take me a week to accomplish. It is very frustrating to start something only to be forced to have to sit down and rest your muscles because they just don't want to work for you. Everyday I awaken to a new day I hope this will be the day I can do it all. It isn't today.

Last night I thought to myself, "Self, you should just break down and have someone come in once a month and clean certain parts of the house then you can at least just keep it looking surface clean." But after I think these thoughts the other thoughts creep in too. "Self, you do not work, you have no reason to have a cleaning service to come in. Get off your lazy ass and do something." It is on days like this that I could become very sad and depressed because I want to do all these things but I feel horrible inside knowing I probably will not accomplish much.

As I sit here I also think to myself, "Self, you will not let this get you down in the dumps gallows of hell. You will do something even if it is just sweep the floors or clean the bathrooms. You may not be able to do everything today but you can do something. Be happy with the things you can do today instead of focusing on the things you cannot do. Tomorrow is another day and what does it matter if it all has to wait another day or another week?" When I listen to that self talk I can already feel my blood pressure going down and I begin to not feel so bad about myself. Plus I am still able share time with good people and I am still able to sit and do some drawing or read for a bit. I think back to what a few of my doctors who know me well tell me, "You are to hard on yourself." I think that is true for me. I focus on those words that come from respected doctors and then I don't feel so bad.

This is why I love this blog so much. By the time I am done writing an entry it gives me a much brighter look to the day and to all that surrounds me. I have a bad thought in my head about myself not being able to do things but then I realize the real reason for living has nothing to do with what surrounds me like dust or a mess but the love I am able to give and receive and for that I am blessed. I may not be able to do much but I am able to do something today and for that I am thankful!

May God Bless your day as HE has always blesses mine!


Sunday, January 1, 2012

A Better 2012 Or Is It Really Just The Same As 2012?

Even though my status today reads:  In my know it all head our only resolution should be to make the world a better place for someone else beside ourselves, I still have to admit there are a few more things I have thought of in my head as far as not so much resolutions but things I would like to do or change in the year of 2012. That being said first and foremost, for me anyways, is striving to be a better person and to really make the world better for someone else, not always easy in a body that controls my life.

Even if it is a simple gesture of listening or understanding for what someone else is facing. This even if I may not always agree with them but still listening to their point of view. Learning to love those more whom I have nothing in common with even the people with whom I really don't care to share the same space with. Although one lesson I have learned in 2011 is that letting people go out of your life isn't a bad thing especially if they are affecting your well being and health, this is my favorite lesson of 2011 and it very freeing to finally be at a peace with it. The other thing I accomplished for myself in 2011, as I have mentioned before, is that I have finally after five long years accepted my life now. It feels good to be able to write that. It has been a grueling long emotional process to finally be able to write this and truly believe it. I can't do as much or be the person I use to be and that is okay! I have come to appreciate my immediate family more and more with each year as they suffer along with me on this journey of one day good, or one week good, and then wham thrown back into hell at the most unexpected times. I am indebted to each of them for their love and the care I receive from them. No one could ever understand unless they were in our home witnessing what goes on. It isn't easy for them.

As I think and have thought of 2112 and the "resolutions" I want to make for myself I think of all the days of the year when I think the same things. This is the year I will lose weight. I will exercise more. I will get back to volunteering. I will love and worship God more. I will get a job. I will love people even when they are unlovable. I will take better care of my self emotionally. I will forgive more. I will, I will, I will. I could go on forever as I am sure you could too with your own list of I wills. 

When I think of all the I wills it also makes me focus on the I won't thoughts. I won't let these diseases push me into a depression where I only focus on myself. I won't give up hope that one day I will wake up cured. I won't allow people to drag me down because they are jealous or angry about their own life and feel it is my fault for the choices they have made. I won't argue with others who think they know it all and have all the answers for my life. I won't worry about tomorrow. I won't focus so much on what I can't do as I try to keep my focus on what I am still able to do. A lot!

I look around me when I am out in public, when I read things on facebook, when I watch television, when I listen to powerful music and I see a world that is much worse off than I and I realize how blessed I am. There is always, always someone worse off than myself and as I look around I thank the Lord for my life. I know people think things like, how can someone live like that, sick all the time, but it really isn't that bad. It is a way of life. The love I am surrounded by is much stronger than any physical issue I may face, minus the hangover from last weekend that is. lol When I look at others, everyone, I realize we are all fading away. Everyday that passes brings us all to our own fate, whatever that fate end up being. We all must take one day at a time and try not to focus too much on the future. Today is today and we must strive to make it the best we can.

My wish for 2012 is that there would be no illness, no death, no financial problems, everyone could just be happy and not so negative, no hunger, peace on earth. We all know those things are not possible and starting  today many of these things are already happening in 2012. It is my hope and prayer everyone has something bigger to hold onto even if it is just hope. For me it is my faith and knowing that all of this will pass and I will be moving onto something much bigger and better. A love, kindness, and peace that is unimaginable. If I didn't believe this I would never be able to get through each day. I hope you are able to figure out where your peace comes from too!

May God Bless You on that journey in 2012!