Monday, February 27, 2012

Decision 2012

I know I say it often and I am going to say it again. It is amazing how God works. When you just know he has his hands all over everything, especially if you are listening and paying attention. I am usually pretty good at this, usually, not always. Today was one of those days I heard him loud and clear.

Yesterday I was writing about seeing a therapist today I decided and thought about it a lot. What was I thinking? I don't need a therapist I have them all around me. Today I had an appointment with one of my docs for OMM Dr. Grunwaldt, who works on my neck and my hip. We were discussing being chronically ill and how I really truly want to get signed up for a stretching or tai chi class. There is one coming up but I was telling him I have all the excuses. What if I go to the first class and it throws me into a flare, or I get there and after 10 minutes I am weak and cannot continue. What if I go and everyone there is 90 years old and can exercise circles around me. It is a brutal reality to deal with when you see someone much older than you are and they are able to do much more than you are able to do. It can bring you down in the dumps really quick. What if, here I go again. What if? I told him I have all the excuses and then some. He told me that I have to learn my breaking point. Figure out how far I can go and stop and if that means you go to the class and do 10-15 minutes of the breathing exercises, so be it. Leave. He told me to talk to the instructor before the class starts so she is aware of my situation. He also talked about Christopher Reeves and about his books. He tried to remember a quote and repeat it to me but had some problems trying to remember exactly what it was Christopher said. I realized I must do some research on these books. On the way home from the visit I thought a lot more. You know the crap self talk. "Are you kidding yourself? You think you need to talk to someone? Christopher Reeves couldn't even walk. Get out of the pity party, pick your self absorbed self up and start to make some changes. Quit saying you can't, because you can. Like Dr Grunwaldt said maybe not all but some." All of this and a million other things ran through my head all day long and continue as I write this.

This afternoon I had to run to the dentist and pick up some films at the hospital for another appointment I have tomorrow. On the way I thought to myself I am going to stop at the bookstore and just see if there is a book that sparks my interests and may set some fire under my butt. I feel I have fallen into the whole, this is the way it is, syndrome and I am in so far that I cannot see the way out anymore. I must take the reins and at least try to make more changes. I know I do many things right already but maybe if I do more I can get out of this and feel better. hahahaha I just made myself laugh. It sure isn't like you can actually "think" your way better when you have autoimmune diseases but I am sure going to try and it does help to have a solid mind/body/spirit connection. I found a book about living with autoimmune disease. I got home and found I already have it. They just changed the color of the cover so it looked good to me. Oh well, I'll take that as another God thing that I was meant to buy it today and read it!

Then tonight I went on my facebook and the RA Guy wrote a beautiful entry on his blog. How it took him 7 hours today to just start his day. Another slap upside the head from God. Wake up lady! You started your day in about 2 hours so add another 5 to that ding dong, you have it good! I have been slapped upside the head so many times today I think my brain is rattling. It has been a good awakening for me. Tears and all but then again I always get like this before I see one of my specialists. It made me realize things will be okay!

Decision 2012 for this candidate is that I am not going to go talk to a therapist. I have Rich. I know it all anyways. I am usually the therapist to everyone else I just never listen to my own advice. Well, today is a new day, the day I start to listen to myself and take my own advice. I am really going to work on making the changes, small as they may be, but something!

God Bless!


Sunday, February 26, 2012

Giving In Is Sometimes All You Can Do

I can't believe I am sitting down here writing that I am wore out to the bone, again. I spent some time with my girls on Friday in the late afternoon and into the evening and I am paying for it once again. I am so weak all I can do is let the tears roll down my face. I hate this! I was laying in Rich's arms earlier telling him I think it is time. Time for what? He wondered. I asked him if he thought I am weak if I feel like I need to talk to someone just to figure all of this out. Of course he thinks it is a great idea and that I may get some good ideas on how to handle this illness thing. Just to talk to someone who isn't so emotionally involved with me.

Just a few months ago I thought I had finally accepted that this was my life. That was before my meds changed and I was slammed back into this hell. I wondered about talking to a therapist over the past few years but had been doing pretty good so what was the sense of it. Over the past few months I am thinking maybe they have a suggestion for a good book on accepting illness, or other ideas to try to figure all of this out. I am not doing it very well on my own lately. It's weird because when I was doing okay I thought to myself, I can do this for the rest of my life. I was at an even keel and able to do what needed to be done, but now it is different. I really was okay. But then when I got slammed down back to this my mind cannot handle the thoughts of doing this for the rest of my life. I honestly am not depressed. I am a really happy, fun loving person until days like this when the weakness hits. I still try to be my jolly self. I still try to do my arts and crafts or watch tv but when it is is this bad the illness wins. It drags me into a hell that I can't pull myself out of. I give into it and I give it up. There ya go, you win illness. If I give it all to the illness, at least in my mind, I hope that it will magically go away because I told it that it won. No such luck.

So as for today I ponder on the thought of talking to a complete stranger about my deepest darkest fears and hope someone just might  have some coping skills for me to use in my daily illness journey. I also believe it will take some pressure off of Rich as he tries to make everything better, knowing all along he can't. That poor man tries so hard and I watch as my illness hurts him so much more than it hurts me. Mostly because he can do nothing to fix it except wrap his arms around me and assure me how much he loves me. Some days that is enough.

God Bless!


Thursday, February 23, 2012

Funny How God Works Like That

Last night I was driving home from Steph's house and I was flipping through the radio stations. You must understand I rarely listen to the radio because I cannot stand the commercials. It seems I hear a song I like and stop to listen to it only to have five minutes of commercials run on when the song is done. I am a cd girl all the way. Well, last night I was just to lazy and tired to put in a cd. They were all laying in the back seat, yes that is how lazy I am, and I didn't have the energy to reach for them, go through them and pick one out so the radio was it. I used the extra energy to drive home, something no on will ever be able to understand unless they have been there.

I was flipping around my country stations because I do love me some country. Then over to some rock and roll, around and around hitting every button waiting to hear a good song. I hit a button and heard a good tune. I had no idea what the song was but it sounded nice to my ears so I listened. You must understand I am very picky about music and I will not listen unless it touches my soul in one way or another. The song went on like this "I know I'm not Strong Enough to be everything that I'm suppose to be. I give up, I'm not Strong Enough- Lord I'm asking you to be strong enough for both of us." A little bit further in they sang, "I can do all things through Christ who gives me strength." I realized I stopped on the christian music radio station. I drove and watched the name of the song and group flash before my face. I thought I have got to remember this song it is perfect. I drove in the driveway and stopped the car to write it down, Strong Enough by Matthew West. You must understand with a memory like mine, especially since the steroids, I have a terrible time remembering anything unless I write it down. Of course as soon as I got in the house I had to listen to it once again and then share the on facebook with all my friends hoping it may touch someone like it touched me.

It is always amazing to me how God works. This song hit me at just the right time and it was a total God thing! I am a Christian. I pray and talk to God all day long but I am not a truly committed Christian in the fact that I do not sit and read the bible as I should or listen to much Christian music. My soul does a lot of that work for me. I cry out to God many times a day. I pray for many people everyday. I thank God for all I am blessed with. I ask him why? why? why? many times a day. I try the best I can to live my faith and do good to others, not because I have to, but because I feel God has sent me here to do just that. I am not perfect. I swear like a trooper, probably my biggest fault. I am working on it. Really! I think horrible thoughts about other people when I see rudeness, selfishness, and cruel people. It is hard for me to understand how people just don't care about one another. I ask God to help these people even when I want to bash them in the face. Being a Christian for me does not mean I am perfect, it means I need God. I need him to lean on and I need him to forgive me, but most of all it mean I know he is always there even when I am being the horrible sinner I am. For that I am grateful and humbled.

I am also glad He is there to love me and my family. The past six months for us have been brutal to say the least when it comes to the health department. First Katie with the thyroid scare as she continues to struggle. Rich with the many issues he faced as the stress of life and taking care of a sick wife caught up to him. Then my health crash when he stared to feel better. Now we face another scare with Steph. Through it all God is good and God is there keeping us all just Strong Enough. We all have a faith in God. We all are there for one another. We have a love for one another that will outlast any hell the devil sends our way. So we give it all to God because we are not strong enough and know that he is. One of my favorite quotes- "My precious child, I never left you during your time of trial. Where you see only one set of footprints, it was then that I carried you." I feel God carrying us over the past few months. I really do. I have seen his hands at work.

I watch so many people around me suffer in their health right now. My heart aches for each and every one of them. My prayers include all of these people everyday. If they come to my mind in my day I send a prayer of goodness for them. I pray God gives them the strength to just make it through this day and this day alone. I think we all look and live to far into the future instead of keeping focused on the moment we are in. I have learned over time and through my suffering this is all we have anyways. I have a hard time making any future plans as God has taught me to live in the now. It is my hope and prayer that all of you, whether you are suffering at this moment or not, can learn to appreciate and be just Strong Enough to get through each moment you are in.

May God Bless You!


Monday, February 20, 2012

Here I Am Again

Here I sit once again a week away from another appointment with my Rheumatologist. As I walked up the stairs yesterday with my journal in hand waving it at Rich asking, "Do I really have to start preparing for this appointment? I don't want to!" I usually write down every detail of what has happened to me in the past six months so my doctor can just review the notes with me. If I don't write it all down I forget something. Only problem is this time so many symptoms have gotten worse since the change in my meds that I don't want to do it. I told Rich I just don't have the energy to write it all down and that maybe I should just bring the journal. Just the thought of writing it down exhausts me. I am tired, so tired, not only physically trying to keep myself afloat, but mentally trying to make sense of it all.
I just want it all to go away, knowing in the back of my head it won't. This will be a very emotional week for me. There are so many people out there hurting and with issues much bigger than mine it makes me wonder. The ago old question, Why? The question that all my blogs are about.

I begin to think how others are suffering much more serious medical issues than I and I really do believe I am blessed. I begin to believe I really can deal with all of this. I believe it really is happening for a reason although on some days that reason is in the far distance and I can barely see it through the thick dark fog. I still believe it is there. I think of others in their suffering and my heart aches. Then I begin to remember this is my suffering and I really shouldn't make light of it comparing it to another. It seems we do that when we are ill, or we hear it from everyone else if we don't do it to ourselves. So and so is worse off or there are a lot more people worse off than you, yup just what we want to hear. Plus I know it but it still doesn't make the situation I am living in any easier, thank you very much. I push on with support or lack of. You become bitter and angry. It is such a roller coaster ride not only the physical part but that emotional component that drags along with it all.

In the back of my head I know I should start on my notes right now but what am I doing? Sitting here writing on my blog. For some reason I find comfort coming here. Not only because it helps me to write but because I know I am not alone. I know there are many people out there just like me. It helps just knowing that. Plus, I figure if I come here the thought that I have to write the actual notes for Dr Key might just go away. I do it every time. Push it out and place it on the back burner as long as I can hoping it disappears, all the while knowing I will have to face it sooner or later since now I only have a week to go. To many decisions to make, to much to remember, to much to live with. Talking about it brings the worse days all back like a tornado smashing through a small town. You try to forget but in the back of your head are those memories of the hell that seem to want to stick around. Yelling at you, "Don't forget." It is like living a nightmare every minute of everyday. This being said, somehow I know it will all work out, and it usually does. I will start my note. Okay maybe tomorrow but I will start it none the less! (trying to convince myself here, can you tell?)

May God Bless you in whatever struggles you may be facing!

God Bless!


Saturday, February 18, 2012

So This Is 'Normal?'

Normal. Man how I have learned to almost hate that word. What is normal? Normal to one maybe something totally different to another. We all think what we live is normal because it is normal for us. I love how we are all different, yet normal.

Last night Rich and I went on our usual date night. It only happens every few weeks but we do it every time. Go to Costco and load up on stuff so we have enough to get us through until the next run. Poor Rich. He does all the work I just tag along and smile or boss him around, which ever is appropriate at the given moment. After Costco it is usually The Villa for the usual, chips and salsa and bean burritos. We always laugh because we are so predictable in our old age. Happy none the less!

We got to the Villa later than usual so we had to wait to be seated. You must understand for me waiting that takes a while is precious time for me. Especially after we had shopped and yesterday wasn't the greatest day. I forced myself to go with Rich. He offered to go alone, like he does many times, but I said NO I am going to go! As we sat there waiting, standing, I searched the room. Ahhhh a free wall to lean up against. You must understand it is very hard to hold yourself up when you are not only out of shape, but also not feeling well. I grabbed that wall waiting for a seat to open so I could rush to it before anyone else. How selfish I thought to myself but at that minute in time I really didn't care. I even said to Rich before we found the seat, "Can I ask someone if I can have their seat?" We both just laughed. "I should have a sign on my head handicap but then no one would believe it looking at me." My heart ached as I said it. Ahhh success a free seat! I grabbed it. As we sat there I looked around at all the people standing in close quarters and at their tables eating. I wondered. I thought about the germs in the room that could kill me. I wondered what it would be like to be able to go out with friends and actually be able to talk and be in the talk instead of having to focus on all my body is trying to do. Blurry vision, getting weaker as time goes on, feeling stiff as I sit there, the list goes on. What is it like to be able to go out and not have to think about anything except why you are there. Not having to scope out the bathroom because you just never know. What is it like to stay out late and not have to have a second thought of what it will do to you tomorrow. I told Rich that if something was to ever happen to me I hope he would find someone and get married again. I would want that for him. A normal marriage. He told me he never would because no one could ever take my place. Oh that man, he always knows what to say to warm my heart. We both know that isn't true. So much to process at one time.
We were finally seated and had a nice dinner, as usual.

As we headed home I thought to myself even though it was rough just thinking about going out into the world it almost always is nice. Nice to see other faces. Nice to know that other people do have normal lives. Nice to dream of someday having a normal life. We got home, I crashed, but it was all worth it because I was able to spend time with the love of my life and for me that is enough!

God Bless!


Thursday, February 16, 2012

Afterall I Am Only Human

I am only human. I know I write all the time about staying positive and that is the purpose of this blog but I have to admit that I am only human. I become frustrated. I want this all to end. Just when I think I am doing somewhat better it seems all the sudden there it is again the big whammy, and I am back down. My human side gets so frustrated. I seriously hate living like this. Today I had to sweep the floor. Simple, right? Well for me like running five miles, as you already know since I have written it many times before. When I got done I was so weak I had to plop on the couch, literally plop. I sat there so weak that without even noticing it tears were rolling down my face. It is so unexplainable. I sit here now tired, weak and with tears as I type this. Lonely, scared, alone and just plain sad. Which if you know me, is not me at all. As I was resting from the sweeping I grabbed a pen and a pad of paper. I thought to myself I am going to write some sappy poem, words or story about all this so here is what I wrote. Warning: It may sound like a mixed up match of garble but at the time it is what came to my mind. It helps me so to write.

I woke again this morn with many things on my mind.
As I rose to do them my body made me think twice,
not in a lazy day way but in a I'm in control kind of way.

My mind is very weary as I sit and ponder.
I begin to think of days gone by as my mind begins to wonder.
The days of doing it all have turned into sadness,
As for some reason I have a hard time trying to recall.

I tried to sweep but became so weak that all I did was weep.
I sat down to pull myself back together.
To realize I AM much stronger than I think I am,
even if I don't want to believe it at this moment in time.

As I want to give up,
the love that surrounds me picks me back up.
I can do this even if it is little bits at a time.

I'm sad for all I lost,
but glad for all I have gained.
What really matters.

This is not all in vain.
It must all have a reason,
although many times I have a hard time understanding.

If this small life,
a sorry existence is only to help others who struggle,
then it is all worth it somehow.

So I pick myself up and press on.
If it were not suppose to be I would be gone.
God must have kept me here for a reason,
so the, my, story continues...

I'll keep you posted on the next installment.

God Bless!


Tuesday, February 14, 2012

Did You Hear What Was Really Said In That??

Last night I watching House which was funny because I haven't watched it at all since they started getting into the characters personal lives. I am not a huge fan of watching any type of drama that surrounds the drama of  lives for some reason. There was nothing else on so I thought I'll watch and see if anything has changed since I watched it last year.

As I was watching I was doing five other things at once as I sat on the couch. Talking to Rich, playing words, making out cards, eating a grapefruit, etc. Yes, I am that talented, just don't make me get off the couch. hahaha! Anyways, as I listened Dr Foreman he was talking to Dr Chase. Apparently Chase got hurt and was off of work and on crutches for some time. He has to come back to the hospital for physical therapy and he ran to Foreman at some point. Foreman asked Chase when he was going to return to work and that it was time for him to come back. Chase said he wasn't ready. Then Foreman came back with a reply that hit me like a hammer upside the head. It went something like this, "If you don't come back now and aren't ready to come back now, you never will be."

I have no idea but those words had to of been the reason I watched that show, for me a total God thing. I turned the channel at that point cause I wasn't loving the show anyways. Like everything I hear or see I started to dissect the words Foreman recited. As I pondered on them I realized that they fit the bill perfectly for chronic illness. You get sick. You feel horrible so you stay home. You withdraw from people because in your mind no one understands. You become isolated, by your own choosing of course. After time you don't even think about it, you just never want to come back, like Chase. It feels like you will never be ready.

I also thought about this with exercise. I haven't been faithful in the exercise especially after this past month but last week I did take the plunge and started back up. Being the idiot that I am I plunged right back into the stepping I have on Wii. I only did ten minutes one day, skipped a day, and did fifteen minutes the next day. Well, a few days later my heel started to hurt when I stood on it. I could tell I screwed something up. Yup, plantar fasciitis. Doc said I started out the wrong way. If you haven't exercised in a while your muscles become short and need to be lengthened in order to be able to go back to doing what I was doing before. Doing some beginner exercises like stretching to lengthen those muscles in order to be able to get back to stepping is what I should be doing. My point here, no sympathy for one, is if you yourself decide to exercise and haven't done it in a while go easy on yourself. Easier said than done! Another good reason to not do it and say I'm just not ready but if your not ready now, you never will be.

I guess when I think of what Forman said to Chase, "If you don't come back now and aren't ready to come back now, you never will be" it is a sentence written for all of us who are chronically ill. All we do is a choice. It is so easy to fall into a poor me, or if I do that I will pay for it, mentality telling ourselves this in everything we do. The point is if we don't try something we will just continue to fall deeper and deeper into that hole. The deeper we fall the harder it is to pull ourselves out of the hole. I feel I have allowed myself to fall, fall to far down. I don't like where I am at and I am digging my way back out. It will take a long time but I am going to do it. I can see the light. It isn't real bright yet but it is there as I reach for it. I hope and pray that you can do the same, not because a doctor or family member want you to but because YOU want to do it. If I can do it, you can do it, or we can do it together. I inspire you, you inspire me type thing. So thank you Foreman for your words they helped more people than you could imagine. "If you don't come back now and aren't ready to come back now, you never will be."

God Bless!


Sunday, February 12, 2012

I Remember A Time...

I remember a time not to long ago when Rich would go away and I would actually be excited to have some time to myself. I didn't have to cook dinner, worry about picking up the house, doing the laundry or all the other things I do around here. I always would figure if he gets to have a mini vacation, or if he traveled for work, it was my time to have my own little vacation. It seems like yesterday until I start to really think about it, then it seems like a million years ago.

Rich was never the kind who would ever ask me why I didn't get something done I just felt it was my responsibility to do all those things while he was out there providing for us. It was like my job and I really never minded keeping the home fires burning. He always told me and still does, "You are in charge at home I am in charge all day at work it is nice to come home and not have to worry about things." You must understand Rich's job is very stressful so I have always understood what he was talking about and this has always worked for us. Plus if you know me I like being in charge and bossing people around.

Now as the years pass and the illness hit things have changed. It is funny how you take each other for granted when you are living your day to day lives. He worked, I did my thing, but now it is different. Now I depend on him much more than I ever had to and he worries about me constantly. It is very hard for me emotionally to even write this. When he goes away now it is like a fear comes over me. I feel like my security blanket has been ripped off or like I am standing in the middle of a cold dark field all by myself. I almost feel scared and if I think about it too deep I can almost panic so I must clear my mind and let the good thoughts come in. Yesterday I did go out by myself and I felt that same panic. The illness has not only robbed me of my health but it has also taken that self confidence and strong inner strength I use to have. Now I feel like a child who needs the care of someone. That just knowing your parent is there just in case, kind of feeling. I don't like it but like I have said before it is what it is.

So for today I push on. I hardly slept at all so of course I get weaker but I am going to get some things done around here! I am going to run to get some pictures printed! I am going to be strong! But most of all I am going to be waiting for my knight in shining armor to come home so I can feel his security once again.

I hope in what ever situation you are in that you are able to appreciate your people and soak in the love that surrounds you. It really is all that matters!

God Bless!


Friday, February 10, 2012

Human Nature

Human nature is such a funny thing. We all have it and it takes us over for no reason at all. There is no way of controlling it. It is almost unexplainable when you think about it. We all have our beliefs and ways of living which have nothing to do with the true realities of human nature. I looked up the definition of human nature and this is what it said:
Human nature refers to the distinguishing characteristics, including ways of thinking, feeling and acting, that humans tend to have naturally.
I do believe we are all born with the same human nature and it is our own thoughts, upbringing, surroundings and such that teach us to believe in one way or another. Whether that is religion, politics, or other social issues that we all seem to agree or disagree on. Either way, whatever we believe it is our own sort of human nature I suppose.

The human nature I am referring to is that of love. I believe when things are going well for us our human nature allows us to take everything around us for granted. I am not talking about the material things but more the people and the love that surrounds us. I find every time I am slammed down with my illness I long to just be with Rich or my family. Just knowing someone is there is enough for me at that time. When I am ill it seems that is all that matters, to know that someone cares. It is enough at that time. I don't care much about stuff, going out or buying something for myself that I want or think I might need. I don't care if we are out of food or whatever, who cares is where I am at. At that time all I can think about is a warm hand on my leg, a hug, or a shoulder to cry on and getting out of the hell I am suffering. Life shrinks to that level when you are ill. All else is just meaningless crap, besides the love. Oh and the drugs but I won't go there.

Now when I begin to feel better all of that changes and human nature takes over once again. As soon as I feel better I start to think outside my illness box. Hummmm I want to spend some money, just get out, even if it is a movie, going to Dollar General or Walgreens. My world gets a little bigger. I get more touchy with Rich and more argumentative, like my usual self. I start to let all the little things I hear or see annoy me. I want to speak out and disagree with people. Yes, that is my nature. I love a good arguement espeically when I am right, which is most of the time. hahaha! I like this no one to argue back so as usual I am right. LOL

I am laughing as I am getting ready at noon to go out tonight with my girls. It will take me that long to get myself together, especially since I haven't been out in a while and I have to wear this damn push up bra :) Ahhhh my own selfish human nature. Feeding into the world that I have to look a certain way to go out in public. But for me it is different. I have a strong appreciation for my human nature which isn't there on many days except to sit and mend. I appreciate that this bra can make me look and feel better about my outward appearance when I know inside it looks like a mudslide. Ugly and angry. So why can't I let my human nature take over? Once in a while I do deserve to feel good on the outside because it helps me clean up the inside. If that makes any sense at all to anyone, it does to me. Although I am pretty sure by the time they get here I am going to be so wore out I won't want to go but I will push on! I will put on the face, I will go, and I will have fun. I will pay for it for a few days but it will be worth it!

Human nature. What a concept. What a truth. Watch the next time you are out in public as human nature surrounds you. Selfishness at times but kindness also from someone you have never met. I always find it extremely entertaining to go out in public because I don't do it very much. Human nature/behavior has always fascinated me.

So as I prepare to get myself ready to go out into the world I think I will meditate on my own human nature. I will think about, hopefully, having the opportunity to help someone while I am out there. A smile,  a listening ear, a kindness to someone who is working at a place I may go. Something that goes beyond a normal everyday human nature to something bigger and better. I hope you are able to do the same with your day and your life as your human nature takes you down this rode called life.

God Bless!


Wednesday, February 8, 2012

The True Outward Picture Of Myasthenia Gravis

I am sure if you know me at all you would know I am not a vain person what so ever. I would think the posting of these two pics would be proof of that. Heck, I am not in many pictures because I much prefer being on the other end of the camera.Yes, I love to do my hair and makeup because it helps me feel good about myself but vain, NOT!

I took these pics of myself just so I could share the affects of Myasthenia Gravis and what other Neurological Diseases can do to a person. The main reason I took these pictures is to show my doctors so they can see what I am like at my worst. It seems many times when I go to the doc I am never at my worst so they never actually see what my worst is. It is like I can show them and say nanananaana this is what I am talking about. A person couldn't make this crap up if they tried!

When I took the first picture I was in the dooms of hell. You can see what I mean when I say my right eye droops. I was so weak that day that I could hardly hold my head up. Taking a shower or bath was nearly impossible. I even skipped a few days of washing my hair and doing my makeup because I was so weak. You know I was sick then!

The second picture was after I started on the steroid increase. As you can see I was able to wash my hair and do my makeup. Although I was still not doing well at least I could see out of my right eye and I could take a bath, wash my hair and do my makeup. Granted that is all I did that day but at least I was able to do that. If you know me I rarely go a day without doing my hair or makeup. I made a deal with myself that no matter how sick I am I will do at least those two things every day. Well, I had to break that deal when I was this ill. It is funny when you are feeling okay you can make all the deals you want with yourself but when you are in the dooms of hell all those deals can be broken in a flash. But like I always say, this too shall pass, and it did, to some degree!

Now I am back to the stage of asking myself, will I wake up like that again? It seems it is so easy to forget the bad days when you are in the okay days and when you are bad it is hard to remember the okay days. It is such a struggle and probably makes no sense to you unless you are ill. All I can compare it to is if you have the flu but you never really recover then add ten other things on top of that, not very much fun to say the least. I am truly happy for the people I know who are healthy! I would never wish this on my worst enemy.

As I continue to recover from this past three week blow I look around me and know how blessed I am. I hear of a kind heart woman/friend whose cancer has returned. I watch my daughter struggle as she has had some unwanted medical news this week. I hear of children being beaten and killed by boy friends. I see people argue about the stupidest things that are meaningless. I see negative comments on facebook or in the newspapers and I realize there is no reason for me to be down. I am one of the blessed. I press on, I pray for those who need it, and I appreciate this thing we call life! I hope you are able to do the same!

God Bless!


Monday, February 6, 2012

Seasons Change

We have all heard the two simple words season change. Like I have wrote before I wake up everyday with a song playing in my head and this morning the song was Seasons Change. As I was hearing the melody play out in my head the only the words that came were seasons change, people change. The tune continued in my head as I laid there trying to loosen up, I started to think about the words seasons change. Yup, sorry I am thinking again so here it goes.

Seasons change. They sure do. When you are younger you think of the actual seasons. You can't wait for summer or maybe winter. You are a kid you love every season and you really don't care or complain  about any of them because life is an adventure, weather means nothing. Then as the years go on and you grow up and are shoved into the real world the seasons can bring frustration and worry. Winter driving, spring clean up, summer heat, fall raking leaves on top of all your other responsibilities the seasons just look like more work and more worry on top of the other stresses of your life.

Like the song, Seasons Change, some may think of love, like the song. Love changes over time, there is no doubt about that. Sadly people fall in and out of love. Love either grows or withers. I have never understood how that works with love. For me I could never understand how people can fall madly in love, get married, have children and fall out of love. Having someone to share all those experiences, to me, is one of the greatest wonders in life I cannot imagine ever trading Rich in for another model. For us our love grows deeper with every passing year and we would be very lost without one another. I am sad that people do not take that commitment more serious. Love is not a game to me but then I also do not know others circumstances so I cannot say or judge anyone for what happens to them, I am just saying for me. It seems for Rich and I love came and stays easy, almost to easy. We are blessed and we do believe we were made for one another.

The worst part about the words seasons change have to do with living with this thing called chronic illness. Boy, seasons do change when this is the season you are hit with especially if this season never goes away. Oh it waxes and wanes and may even get better certain times of the year for some but it is a BIG season change. This time I'm not talking about the symptoms but the season changes of your life, your hopes, your dreams. Many of your big dreams, changed. Your desires to do the things you have dreamed of, changed. Your appreciation for life, changed. Your appreciation for people, changed. It is the hardest part of becoming ill. It isn't the illness it is the seasons changed that are the hardest to accept. You try, as hard as you can to adapt to the new seasons of your life. You take them one day at a time. While others are looking forward to the season change of spring to summer you are thinking, summer is coming. Invitations to outings that you wonder if you will be able to attend. You worry about the heat knocking you on you butt. You worry about all the things no one else needs to have concern over. You worry about the things you always want to do but in the back of your mind you almost know the answer before it even gets here. You always keep the hope that this maybe the time I can do it but...

The biggest season change for me has been the thought that when my children grew up and were at least in college I was going to go back to work, or even possibly go back to school. I always dreamed of being a nurse because of my love and compassion for people. My seasons changed, at least for now. My seasons consist of getting out of bed and at least keeping my house picked up so I can feel good in the space I am tied to because of my season change. It is all good. I was talking to my mom last night and I said to her we really are very fortunate. Could you imagine if it was Rich who was the one who was ill and not me? What would we do? I have no skills, so yes we are blessed in our season change. See why God put us together, he know! Then my mother said, "Well, you would just have to move in with us then." I have wonderful parents. Selfless people whom are good to us and others. I am blessed! Amongst all your seasons change there is always good you just have to keep your eyes open wide enough to see all of it. It is the simple things like I always say! When you are busy you never really notice them.

In ending my point is we all have season change, those who are ill and those who are not. We all must adapt to our own season change in our own way. Many times we do not want to adapt to our season change but what other choice do we have? It isn't easy. I flip flop from one day to another accepting then fighting my season change. Today I am okay with it. I am sure you are the same in what ever your season change is, it all depends on what that is for you. Like I said before what other choice do we have?

God Bless!


Sunday, February 5, 2012

One Size Does Not Fit All Unless You Are Talking About Stretchy Pants

I have always hated and cringed every time I hear the term One Size Fits All. It seems, at least for me, that every time I see that term when buying a t-shirt or jacket the One Size Fit All does not pertain to me. Yes, there is one time this may be true, when it comes to stretchy pants. Seriously you can lose and gain the same 10-20 pounds and those babies are faithful to the end. So, okay I admit we will make an exception for the stretchy pants from KMart because those things still make my heart go pitter patter.

As I laid awake in bed last night in pain I was thinking about the One Size Fits All World. I sure do not want to offend anyone who is reading this so if you have your boxing gloves on stop reading this now. I believe what I believe, you believe what you believe. I respect that and I hope you would do the same for my beliefs if not just leave it alone.

First the work force. How can people complain about someone who have worked hard to "make it" at their job and say it isn't fair? How do we know how hard someone has worked to make it to where they are? We don't. We have no idea the suffering a person has gone through to hold their job. Climbing up the ladder of success. Working from the bottom  to the top. Blood, sweat, and tears. How come people can't just be happy for each other instead of saying, "he,she, they make so much money?" Life isn't about money. One Size Does Not Not All in this part of life.
I have struggled with this for years being a non-working woman and having to listen to others make comments about it. Rich having to work twice as hard to make up for the wages I didn't bring into the family. So people should really think about this before they open their big mouths. Pay scales are different for a reason. People at the top suffer. They devote their lives to making sure everything runs smooth, and to provide jobs. If you have never experienced this then you have no idea. Not to mention that many of them doctors, lawyers and the such spent years and thousands of dollars on college degrees to earn their positions. We must never forget the road to success is never as easily traveled as everyone thinks it is. One Size Does Not Fit All.

My next and most annoying point to make in the One Size Fits All World is the medical field. This has weighed very heavy on my heart for a very long time but this week it hit me hard when I went on my chart on the computer through one of my doctors office's. There was a part that had a record of all my weights from all the times I have been in there. At the bottom of the chart it said, "Lap Band." If you do not know what the lap band it is a surgery they do to tie off some of your stomach so you can lose weight. I was, and still am, furious! I have never discussed this with any of my doctors so why is that in my chart. Yes, I am over weight, I know, but there is NO WAY IN HELL I would ever be having any surgery to lose a few pounds. Plus, who's choice is that to make?

Next item on the list are all of all the charts when you go to the doctor. The BMI chart. One Size Fits All? Are you kidding me? I don't think so. You cannot tell me that I should be the same weight and height as everyone else who is on that chart who is the same height as me. We are all genetically made up different. I am considered obese according to my BMI but if you saw me you would never dream that I could actually weight as much as the scales says I do. My cholesterol is fine as wine and my blood pressure is usually perfect unless I am worked up about seeing yet another doctor. One Size Does Not Fit All! I am not allowing the government, pharmaceutical companies or my doctors believe that they can control my medical health. I sure don't need them to convince me I am a fat ass I can do a good job of that all by myself thank you very much.

If One Size Does Fit All then how come someone who has the same illness as another person can be taking a totally different drug then the other person. For instance, someone may have Rheumatoid Arthritis. They give each person Methotrexate. It works for one person to control the pain but it does not for the other person. Same drug, same dose, different results. SO isn't that a pretty good indication that it is NOT a One Size Fits All world right there? Plus this happens everyday with many people who have many different diseases than RA. What works for one person does not work for another. Why? Because One Size Does Not Fit All!

Look at diet's. You can't say that one diet fits all. I can't eat dairy while someone else can. One Size Does Not Fit All. Other people cannot eat wheat while I can. One Size Does Not Fit All. This is where it starts to get murky when I hear about the government wanting to tell people how and what to eat. I think there is a very fine line that is drawn here and they need to be very careful about erasing it. One Size Does Not Fit All.

This probably goes along with the above and since I am on a roll another thing that drives me crazy lately is television. I can't watch one program without them telling me I am eating wrong, not getting enough exercise, or whatever other stupid lame campaign they are coming up with. How dare anyone tell us we are fat, stupid or lazy. We should stop eating McDonald's or whatever else we choose to eat. The last I checked this was a free country. Or have I missed something? Seriously people we all are going to die. Really its true. We can't run from that. Now am I saying we should eat that stuff everyday, absolutely not! We must take care of ourselves but that doesn't mean we can't enjoy a little crappy food and some fun once in while. Dr Oz and all these medical shows will have you feeling so guilty that your self esteem may as well be flushed down the toilet. Don't do this, don't do that. It is our choice to do what we want. I can make my own decisions just fine by myself. I am a big girl. One Size Does Not Fit All. We all must do the best we can. We all must enjoy life and at the same time and not have to feel guilty every time we turn on the television.
One Size Does Not Fit All!

NOW after all of that lets hope I can sleep tonight!!

God Bless America, we need it right now!


Saturday, February 4, 2012

How You Keep From Going Crazy?

I love the song I believe by Brooks and Dunn. It is such an encouraging song about a little boy who grows up befriending an older man who lost his wife and son. The boy asks the old man how he keeps from going crazy and the old man basically says, "I believe." What a powerful song. I like to listen to it when I am asking myself, "How do you keep from going crazy?" Believe me yesterday was one of those days. I really thought I was going crazy. These steroids can make you think there is no good anywhere, and that you are losing it and you will never get it back. They are no fun. But just as I was getting more and more down on myself, crying a lot all day, and allowing my thoughts to taking over, lucky for me, Rich came home. Of course we had our usual small talk and after and hour or so I just lost it. Always the best thing for me to do, just lose it with my safe person.
First I went on with my negative thoughts and cried. Then when I was done billowing , like always, Rich took over. He has a way of making everything look so much bigger, better and brighter. When I am like that it brings me back to years ago when I was like that everyday for months on end. I am thankful it was just yesterday because I am going to fight in my head to bring the words back that he told me every time get down. I am going to try to stay positive. I am going to remember this too shall pass, like I always say. It is funny how you can say one thing one day and really believe it and then the next day you say it and it seems like a big joke. This is the true horror of chronic illness. The mental mind games that can drive you crazy if you let them. So for me, as the song says, I believe! I believe there is something better on the horizon. I believe one day this will be over. I believe I will NOT go crazy. I believe I am stronger than this disease. I believe one day I will be free from all of this and I will rejoice in that day. I always tell Rich when I go please be happy! It will be the day I have been waiting for but for now I go on and I believe!

God Bless!


Thursday, February 2, 2012

Lighting A Candle For All The Good In Your Life

I am sure all who are reading this know by now that I have had a very rough past few weeks. No secrets there as usual. I feel like I have made it over the hump of not being able to do anything at all to at least doing a few more things.

I am thankful, blessed, and to be truthful angry. The range of emotion right now is out of control. I didn't think this would ever come back but boy was I wrong. This anger is not like an anger that is directed at anyone. It is an anger that is eating me up inside. My brain is having a really hard time wrapping itself around the fact that I was doing okay and just like that I was back to where I was when I started a few years ago. I don't think the anger is so much directed at the illness because that is just life for me but it is directed at the fact that I have no control over this. The fact that I can go back to being that sick for no reason at all makes me want to just give up. It is so hard to keep a positive attitude when you are not able to do anything without feeling like you are going to pass out or fall because you are so weak. You lay around listening to your body and as you do that your muscles become unconditioned to the point of having to recondition them when you feel better. I am still getting weak when I do too much physical work but at least I am accomplishing something. Now if I could just get my mental status in line with the physical status I think I could be doing a little better.

So I began the process. I hate everything in the world. I fight it all. I get angry at everything and everyone. I start to dissect every aspect of my life. I am quitting facebook. I deleted friends, which wasn't a bad thing, I left groups, some with negative energy I just don't need. I need to focus on my well being instead of thinking I have to fix every one else for now. I can't anyways. It sounds so crazy as I write it but that is the anger part of it all. I haven't been here in a long time. I can't understand it all. I seriously, like I said before and a million times in the past few weeks, don't understand how it can come back like this after four years. Why?

I am mad at the pharmaceutical companies for taking medications away from people. Do they not understand when they do that they force people back into the depths of hell? How can they do that? They told me the drug I inject would be available last November, then the end of December, then the end of January, and now the end of February. I am mad, really mad at them right now. More anger = More stress = more symptoms, the circle never ends. Now I am being forced to make more decisions on what to do. Going on higher doses of steroids which are evil in themselves. Do I start new meds? Meds that are more dangerous than the ones I am on or do I keep allowing the drug company to make the choice for me? Will they give me my drug back this month only take it away from me again in the future? I just want to scream and cry almost like the person you see in the movies who screams out with the pain that comes from their core, falling to their knees, only I have no one to do that to. I can't let it all out to my family because the worst part about being ill is watching the people who love you suffer as much as you do if not more.

So my plan is to light a candle every day and just meditate on all the good in my life. My simple little good life. I am going to stay away from the thoughts of medicines, doctors, symptoms, the fact I can't work, and all the other negative things that bring me down and focus on the best parts of my life. I am going to focus on Dr. Glisson in his calming voice say to me, "this is just a little set back." I am going to remember the simpleness of it all. I am going to write all the good down. When a good thought comes its getting written down in my journal. If I have to write the same good things everyday for the next year then so be it, it is still good even if it is only my few good things. I have much to be thankful for when I look at the outside of this illness! So here is to NOT letting this stupid illness crap win! I am going to fight this with everything I have. I have to anyways it is my battle to win and no one else's. It is my hope that all of you reading this are able to do the same in what ever situation you may be facing in life!

God Bless!