Tuesday, May 28, 2013

Having it All vs. Wanting it All

This weekend Rich and I had a day all to ourselves and it sure was nice. Spring is brutal on both of us. Rich is so busy at work and gets home late very tired and worn out. He just wants to sit in the chair and relax with no one bothering him. I understand it, I really do, we have done this for twenty nine years so we are pretty use to the routine of the normal busyness of the business and the the extreme busyness of the business. I have been in the office when he is busy and when he is extremely busy and many times I have to leave because I can't stand it. I have no idea how he does it. I have never known a person in my entire life who works harder than that man. It is crazy. I think I have to leave because it breaks my heart to see him have to work so hard because I can't help by having a job. It isn't fair at all. When I ask him how he does it all he is ever says is, "I do it for you, and for us." I believe that to be true because I don't know how a person can survive what he goes through.

Ten years ago we were able to buy a portion of the business with five other people so since then he has even more passion for keeping the place afloat. It annoys the hell out of me how people think because you own a business you are automatically rich, like money falls off a tree in the back yard. It doesn't, believe me. You infest thousands of dollars, your own dollars I might add, and your return is a long, long waiting process. The money most small businesses make is money that is put right back into the business to keep the business going. The expenses of running a business, the taxes, the this, the that, are all put back into the business just to keep it running, especially in this day and age. I wish people could understand this. You have no clue until you invest your own money into something how much goes into it. It would astound most people, I know it did me. The reality hurts at times. It takes things away from people but then it also shows you what matters. Over the years we have both sat on the fence many times wondering if we made the right or the wrong decision investing in the business. Rich always comes to the conclusion that he bought, not only himself a job, but many others theirs. I am heart warmed when he speaks of going into business. Then he proceeds to talk about how many of his friends would have been out of a job, including friends, family members, and himself. Although he never really says much about himself. His concern was with helping his fellow co-workers. He considers them all people not just employees. I get angry when I see and hear people talk about bosses as if they are all jerks. I think to myself, after knowing many of the inside workings of a boss, they wouldn't have to be jerks if everyone did their jobs right. It is funny but looking from the outside in some people think you owe them because they work for you but in reality isn't it the other way around? When I worked my boss was the boss. I was happy to have a job and work for him. I did what he said, he was my boss. If we wasted money we paid back what we wasted. It wasn't like this throw away world we live in now or the you owe me world we have, sadly. What people/employees don't understand these days is every penny that is wasted on the job takes away from them. Takes away from their raise, their bonuses, etc. I watch my husband struggle to stay afloat, I watch him struggle financially, I watch him worry. I watch him not sleep. I watch him get up at three am in the morning to work on stuff he didn't get done at the office. It is hard watching him do this, "for me, for us," and it is hard listening to the world bash business men and businesses. The stuff no one knows about when it comes to running a business. I can get very angry so I will stop here.

This past weekend when we were taking a drive to look at our dream land that took us twenty nine years to get, on our day alone, I told Rich I had been thinking a lot since I packed up all our belongings which are now in storage. I asked him if he missed any of the stuff as he opened up the storage unit to put more stuff into an already full garage. He said, "No." I said, "Funny thing is either do I." We decided when we sell our house and we go through the packed boxes we are going to give most of it away. We have already given so much away and still have that garage full. I asked myself and him, "What is the point? Why do we need it?" We both decided we don't. Our excitement is having the land we have always dreamed of. Don't get me wrong we love where we are now. It is a beautiful home and we have both worked very hard to have it. It is just time to move on. Move on to what we really believe in, having less, but in the end actually having more. Less stuff to take care of, more time to be together. Less up keep on a house and property, more time sitting on the back porch with a drink. Little things. I know when you are young it is about getting and having it all but as you get older once you have it all you begin to realize it doesn't matter.
I also told Rich that as we age we have to think about our kids. When we die do we want them to have to come into our home and pack all the meaningless crap up that we collected over the years? We both agreed we don't. That is why we made the decision to live with less but live a life that is richer and better, a life that has nothing to do with the money, like the world tells you. Money is money. Yes, you need it to live but why else do you need it? Is it everything?

In the end as I look back becoming ill has taught me what really matters in this world. I have struggled with this for a long time. I use to chase all the stuff to some degree but now I could care less. The illness and fatigue prevent me from the chase and you know what? It's all okay. I don't miss it a bit. Our starting over when we sell our house is going to be a much different picture than the one we had when we moved into this house. All the stuff we worked so hard to acquire will not be with us. It feels good, it feels right, and it feels like where we are suppose to be. We are finally learning what really matters when it comes to the money side of life. Money isn't what it is all about. Now if the rest of the world could follow along with us it might be a better place to live. If we could all realize what we really need and what we really don't. I think we are on our way. Are you?

God Bless!


Thursday, May 23, 2013

The Family and Relationships

A Family Is Like a Garden

A family is a place where minds come in contact with one another. If these minds love one another the home will be as beautiful as a flower garden. But if these minds get out of harmony with one another it is like a storm that plays havoc with the garden.

~The Buddha~
When I read this last night it slapped me upside the head. It wasn't a bad slap or a very hard slap just some sort of a wake up call as to the truth about families and relationships. I read and reread it over and over each time thinking of another point of view that went along with this quote. You might think of it on the surface for what it is. Thats easy enough read, process a bit and move on. Simple but I am talking about really thinking about it and what it means for you. Think back and reread. Think some more. Hummm......
The first thing I thought of was the family as a whole, the big picture, my family, Rich's family and I then I thought about our own family. Rich and the kids and when we were in the stage of raising our children. I think we had a home that was a beautiful garden and we enjoyed one another. It wasn't perfect by any means, we had our struggles but there was always love. If there was one thing we all knew it was that we had each others backs. I have to believe that was especially true for me. When it came to my family don't mess with them, although there were those situations where I did keep my mouth when I shouldn't have but we all have those regrets. I think our garden was watered well and as I look at my immediate family now I see them giving and living a life of love, the life we tried to teach them about. What more could parents want? The garden is green and I am thankful for that. I know others struggle with this and it saddens me so. But then we must all live through the clouds and the rain to get to the sunshine. Either way you look at it as a storm or as sunshine you must learn to live with the choices you made for yourself and your children as they grew up. There was no manual so you did/do the best you can. Almost flying blind if you will. One of the hardest jobs in the world where you hope and pray the pay off leaves the world a better place. it isn't about success but about how you teach your children that life is not just about them but all that surround them. The garden, either lush or brown and withered, we all wonder at times if we did all the right things but we are human and do the best we can with what we have.
The second thing I thought of was how families can be torn apart. Torn apart by alcohol, abuse, and pure selfishness. It saddens me every time I think of the people I know who grew up in families like this. Whey innocent children have to suffer to the selfishness of adults who in reality had no business ever having children in the first place. Maybe they had parents who were selfish or had the same issues they had and they weren't able to break the cycle. Maybe they hurt inside so much from childhood hurts they can't move on so they find other ways to cope and their garden becomes dried up. I don't believe the sunshine isn't there waiting for them it is just a matter of them realizing it and grabbing hold of it. Some do and some don't. I still don't understand why people want to have children only to abuse them and make life a living hell for them. It never has made any sense to me and never will. The making of children is easy the raising them is the hard part. I grew up in a home where violence was never an option. I was told you don't allow anyone to hit you or be mean to you and if they do you run away from the as fast as you can. The only problem is that when I think of this I wonder how children are suppose to run away from abusive parents when either, no one wants them, or they have no where to run to. Why do people stay in abusive relationships? Why don't parents want to protect their children from the abuse. Why does one parent stay with the other who is abusive? Growing up as I did the questions will never be answered because to me there is only one option. To this day I would still give up my life for my children, no questions asked. I think our garden is lush and growing all the time. I know it isn't always that simple and I don't want to debate this. Yes, things change when your children grow up and move out but they will always be your children and you will continue to do anything for them no matter the price. I wish all children had this. I wish abused children didn't have to grow up feeling alone and lonely. I pray they learn to make their garden green even when their role models made the garden a mess. With that being said I have witnessed first hand how someone can take an abusive childhood and turn into something beautiful. It can be done. Does it ever all go away? I don't believe so but I believe some people are strong enough to take that mess of a garden and turn it into something beautiful.
The third thing I thought about was being married. Being married for me is all I ever wanted. I look back on the few guys I dated as I was trying to find my life mate. I remember most of them only wanted one thing and when they found out they weren't going to get it they never called me again. It was fine because in my heart and soul I knew they weren't the one. Believe some of them were real jerks. Then, I met Rich. We became friends for a few years before we even dated. I use to cut his hair and he would talk to me about the girls who broke his heart. I always felt so bad for him because he was searching for the same thing I was. Almost a year after we graduated we began dating and our friendship became deeper and we fell in love. The garden began to grow. All the storms we went through with other people brought us to one another and turned into an everlasting love. Easy? Not always that is for sure. If you have ever been married it isn't easy no matter how in love you are but if you take the storms and water them with your love you can overcome anything. You know you are meant to be together until your dying day to love and support to keep those flowers blooming even when it storms.
 The forth thing I thought of was the storm that play havoc in the garden of life, illness. All the questions of why. All the suffering. All the never knowing from day to day what you are going to feel like. Having to learn to live a life over again so to say the least. Having to say goodbye to a lot of things, even people. Having to learn to be okay with whatever comes your way. It isn't easy BUT when you think deeply you begin to see the other side. The garden of your illness. The good that illness has brought to you. I'm pretty sure many would think there can't be any good in illness but there is. It is unexplainable and no one could understand it unless it happens to them. Goodness and love. Caring hearts that surround you. Realizing what matters in life and how meaningless the stuff that society tries to make you believe is what it is all about. It isn't. You learn what matters and your garden grows in a different way than most. I see my garden and it is full, I am blessed. Is it easy? No. there are the storms that hit that make me wonder if I can do this for ten, twenty, or thirty more year, but just as fast as those days come they are gone. The reason I call my blog Chronic Storms - Chronic Sunshine. Being ill isn't all roses but tucked in between the clouds there is a lot of sunshine to bask in.
 God Bless!

Tuesday, May 21, 2013

The Joys and Sorrows of Summer

Before I start this entry I must make it clear I am not complaining I am just stating a fact that is true, not only for me, but for many who suffer from autoimmune diseases. With that being said I can begin.
Summer. Just seeing, reading, or hearing the word makes most people great excitement. Thoughts of the beach, camping, picnics, weddings, and many other outdoor events all bring smiles to many souls. I will admit that the thoughts of these things bring joy to my soul too but there is one problem. The heat.

Heat for people with autoimmune diseases can be an evil companion to bring along to all those summer events. I love sitting outside on my swing enjoying nature and all the beauty that surrounds me. There are days in the summer I am able to do so but on most days with our hot and humid Michigan weather it is out of the question because the heat is my enemy. I try on those hot days to be like the rest of the world but when I do I get sick and sometimes very sick. I feel like I am going to pass out, I overheat very fast like a hot car on the highway. You know what that looks like when you drive by one on the road, now think of a body doing the same thing. Yes, it is that bad. I get rashes if I stay in the sun for any length of time. I get dizzy and ill if I am out in the heat too long. When we have to go away in the summer and it is an outside event I begin to panic before we get to wherever we are headed and as soon as we arrive I look for the shade,and being selfish, I race to the shade. I move my chair so I am out of the sun. It sounds crazy, I know, when most people are meeting and greeting their friends all I can think about is finding my spot in the shade and getting to it. While the rest of the party is enjoying the summer I am in fear of becoming ill. Like I have said many times being ill isn't something you can take off and put on a shelf while you attend a party, it goes with you everywhere. Summer for me, is much harder than winter. I swell up like a balloon. I am stiffer. My eye droops from the heat which isn't a big deal unless it is drooped and causing more blurry vision which has been the case already and is right now. My fatigue is much worse in this heat even with the air on but I must push on. I keep my goal to do at least one thing a day even on the days I am wore out. I keep the house picked up. I make dinner and do the laundry. I must. It is what keeps me going when all I want to do is crawl into a hole. Life goes on no matter what each day brings us good, bad, hot, cold, pain, no pain, the list could go on.

The sun to me is evil. How much I hate having to write that. I don't understand people who want to sit in the sun and bake and worry about how tan they are in the summer, to me, that makes no sense at all. Why in the world would anyone want to do that to themselves? But then again I am sure people look at me and think, white as a ghost, she must never get out. This is where the understanding of how different we all are from one another comes in. I fear the sun while others worship the sun. It is what it is.

One of the sweetest things ever is when we go outside or somewhere with Rich and he will automatically look for a shady spot for me. How he will make sure there is a chair under a tree for me. How he makes sure every summer we have covered canopy's in the backyard to shield me/us from the sun. How he makes sure the house is cool enough for me. Last year he bought an extra window air conditioner to keep our bedroom cooler because it gets warmer upstairs than downstairs. He tells me not to go outside on certain days because it is way to hot for me. He knows and understands what the heat does to me. I am so fortunate to have someone who understands it all. I know there are times he gets fed up with me so I try my hardest not to complain but there are the times it catches up to you holding it all inside and you have to explode. Its all a part of the dealing with it.

Summer approaches once again and not to wish my life away I will look forward to fall. I will still enjoy summer and will live through the heat, what other choice do I have? None. We all have our "stuff" whether it is illness or other problems. We must take our issues as they come and face them with a positive attitude. If we don't it just makes it all the harder to get to the other side. We must enjoy the ride and make the best of it. This summer my joy is knowing that Richie and Leah will be getting married. All the joys of a marriage and all the excitement that comes along with it. Looking forward to the wedding is what will get me through June and July and the heat of summer. What a great way to pass the time and wait for the heat to pass!

God Bless!


Sunday, May 19, 2013

Keeping Positive When All You Feel Is Tired

I read this today and it struck me at the core of my soul. I have to admit I am a pretty happy and positive person but the other night it kind of bit me in the butt a little. For mother's day Steph and Vinnie got me a five year diary in which you can only write one line in it at the end of each day. It wasn't specific about what you had to write so my decision was that I was going to write one positive thing or one thing that I am grateful for each day. Simple enough but have you ever done this? On the third day I sat on the couch grabbed the diary, after a day of not taking time to think about what was going on around me, I stared into space wondering what the heck I was going to write. I sat and thought, and thought, and thought. I hate to admit it was the end of one of those days. I had been so busy and so exhausted I couldn't think of one good thing or one thing I was grateful for besides the usual things I am grateful for each day. I am trying to make it something new and different instead of the same entry each day. You know what I mean like the obvious things that I am thankful or grateful for. Ever since that night I have been haunted by the fact that I couldn't think of one thing to write. I was ashamed of myself and at the same time saddened that I wasn't aware enough to realize all the beauty that surrounded me on a daily basis that I really do take for granted. When I read the above, 'always end the day with a positive thought. No matter how hard things were, tomorrow's a fresh opportunity to make it better.' I wondered to myself why I had such a hard time that day. I believe it is because I am so worn out from trying to get ready to move and my brain and body are so exhausted that I really don't care right now. It is taking every ounce of my energy to keep the house picked up, waiting for calls to show the house, and trying to take care of myself that I am unable to see the beauty in much right now. I hate writing that. I hate that I had a day that ended in not being able to be grateful for one thing. I can't even remember what I ended up writing that day, probably something about Eva or something that may not have even been true.

I made a vow to myself the next day and everyday after that I am going to be more aware of all I have to be grateful for. I am opening my eyes more. I'm not going to allow this moving and selling the house to rob me of my joy. I watched Hunter and Addi for a while today and they reminded me of joy, love, laughter, and peace. Just what I needed. Tiring? Yes. Did I really need to add more to my plate right now? No. Did I enjoy it? Yes every minute. I believe it was all in the plan. The plan God had to help me to open my eyes and see the true beauty and all I have to be grateful for. Today's entry will be about my two little loves. How they know just what to say to me. If I didn't hear, "I love you Nana," once I heard it a hundred times. All the, "Remember whens," they remember that bring me/us joy. The 'remember whens' that I forgot. I am ashamed I forget them but I am sure grateful they remember so we can laugh together. I know there are days I feel horrible, most, but I also know there are the days that have so much good in them and it is just a matter of opening my heart, mind, and soul to see the real beauty in each of those moments. Believe me from now on I will not have a day where I won't know what to write in my diary because there are way too many good things that happen each day. I just have to open my eyes to see and remember them better. Sounds much easier than it is but I am making an effort. Life is short. It gets so easy to become negative when you are tired which in turn makes you forget what really matters, the simple things. I'm going to work on not forgetting anymore!

God Bless!


Wednesday, May 15, 2013

Anger Managment Sleep Style

Sleep doctor. Sleep study. Results: normal. Sleep Behavioral Specialist. Went, did homework. Results: still the same as I was before all the tests, all the stress, all the try this and try that's. Seriously? I have to be truthful on this subject at least when it comes TO ME. It is a bunch of bull hockey and a waste of so much of our insurance money and our business' money. I knew when I switched doctors and she said sleep test that it was going to be a waste of all the resources we had and a waste of me being a stressed out mess. I am still not recovered from the stress. I tell you if you don't have anxiety or stress and are feeling pretty good before all the sleep talk comes up, you will be an absolute mess after the fact. I have a great sleep doctor. She was very understanding and at least after the test I feel she began to see my case a being much different than most patients she see's. She agreed that if the Xanax worked for me for sleep then there is no reason to mess with what works. She even left it up to me whether I wanted to see a sleep behavioral specialist and I decided sure I would at least try. Well, that lasted two appointments and I knew it wasn't for me. Yes, I did get some good idea's but I knew a lot of the stuff already so it I asked myself, "Self, what the heck are you doing here?" I talked with Rich whom thought it was ridiculous too, and decided it wasn't for me Once again FOR ME, I cannot stress that enough. FOR ME! Yes, for some she is probably just what they need but for me I was skeptical the first appointment when she kept yawning. hummm yup a sleep behavioral specialist who yawns through the appointment and the second appointment. I am very observant on so many levels so I began questioning myself and the whole situation even more for obvious reasons.

Once again the biggest point of me writing this is in the hopes that if at least one doctor reads this they will begin to understand that all patients are NOT the same. You cannot compare my sleep to anothers leep even if it is the same pattern. My sleep has always been the way it is since birth. Have you ever tried to tell someone to listen to you and what you are saying instead of them saying, "If you don't want to put the work into this then you don't have to." Every time I asked a question I was told this. Seriously? The reason I asked the question is because I want an answer,you are the specialist, right? I feel that many of the doctors I have seen in the past do not understand one thing about chronic illness and the behavior specialist was one of them. Once again as I stated above FOR ME. I am a very complex person not only in my illness but in my thinking. Deep is an understatement. Believe me by the time I am at that first appointment I have researched and educated myself to the enth degree and I know what it is all about. I must give credit where credit is due I did learn and apply a couple of things from this sleep therapy. One, I took the tv out of the bedroom and two, I am on more of a regular sleep pattern as far as trying to get to bed at the same time and getting up at the same time. Although I feel more tired than ever, this is suppose to help the average person sleep better. I'm not sure I can vouch for this or not, FOR ME at least. I can say if I didn't have an anxiety problem before all this sleep stuff I do now. I worry that I am doing everything wrong when it comes to sleep. I feel like some kind of criminal for not having the best sleep schedule in the past. I have been talked down to like I am some sort of idiot or like I am five years old, unacceptable. I am really angry to say the least. I have to admit I am mostly angry at myself for being sucked into another doctor, more tests, more degrading from, and the list goes on. I am anxious to see my Rheumetologist after this testing stuff since she knows me and lets just say she knew this wasn't going to show much. How does she know? Because she understands the chronically ill. She gets it. She listens, she understands, and she is not only a doctor but a cheerleader on the side helping her patients. She gets the oddness of being chronically ill. She doesn't lump all her patients into one category she looks at each person in their own individual way. She treats the patients and not just the disease. I would be dead if not for her. I am indebted to her for giving me back my life and for listening and believing in me. There is no way on earth you could ever thank a doctor like that.

I wish I could rewind the clock and would have just said no to all this sleep stuff. I was doing so good before it all began. Good for me. Good enough. I don't understand why when something works some doctors won't leave it alone. I struggle with this daily and now nightly as every night I feel guilty for having to pop a Xanax. I feel mad and angry that I was told I couldn't have Xanax anymore only to have the doctor, after the sleep test, tell me it was fine FOR ME, not the best med to take at bed but if it works its what we will do. I went through all that hell to get right back to the place I was before I started. Hummm, I hope doctors can begin to understand that patients know their bodies and know what works for them better than what the book says. The book needs to be burned when it comes to some patients and I am one of those patients as are many others. I push on. Writing this helps me to deal with the anger I am feeling. The bitterness that I don't need to have because it just makes everything worse. Letting it go. Forgetting it all. Yes, it takes time and yes it is getting somewhat better. I know it will be much better after I see Dr. Key but until then I fight as I do everyday. I try to keep my chin up and move on to better days. In the end it will all be fine I just know it. It always is.

God Bless!


Monday, May 13, 2013

Listening to Yourself

Have you ever listened to yourself? No, I mean really listened to yourself? I always think I know it all but there are those times I say something and it doesn't register in my brain as to what I am really saying. We went to a wedding the other day and there was a break in between the reception so we had time to kill. We went to see my parents for a bit and decided to stop home and check on the dog before we moved on to the reception. While we were driving home from visiting my parents and almost home I said to Rich, "This will be good to go home so I can freshen up my makeup and put some powder on so I make the outside look good because it sure doesn't match what the inside looks or feels like." BOING! The words no longer left my mouth and I was shocked as to how my brain had processed what I just said. I even said to Rich, "I can't believe I just said that, how sad." I sat quietly in the car until we pulled in the drive thinking about it. I thought of how you can think so many things in your head about being chronically ill but usually you don't say them out loud. All those things you never blurt out that have to do with the big cover up of being ill. We made it home I freshened up and we left for the reception.
We sat at a table at the reception with three other couples and only one of the couples knew about my illness, the other two had no clue. I am sure looking at me they would never have thought I didn't feel that good. I'm sure when they asked if I worked outside the home and I said told them I didn't, they had all those thoughts that most people probably think when you say you don't work. I don't feel like I have to explain anything anymore. I don't care. I don't care what people think. I am to a point where it is easier to stay home in my safe bubble where no one has to question me, my safe haven where my dog and cat don't care how I look or feel, they just love me. Home where I can move at my own pace and not have to be the party pooper sitting on the sidelines. Most people can drink and dance at receptions but not me because the alcohol and drugs don't mix. Dancing is out of the question because the next day I really do need to be able to walk. The best part of this whole, listening to myself, helped me to process it all. It helps me get to get to the place of acceptance. I think all of the,"I don't care anymore," at least for me, is it the acceptance phase or is it still denial? I don't know but finally after years of fighting it all to the bone I can finally say I am sick of fighting. It is what it is and when I say things like 'I need to get home to powder my face to cover up what is going on inside' it makes me realize I am different but it is okay. It makes me realize maybe I am getting to the acceptance stage because before I never would have said that out loud I would have just held it all inside for only me to think about.

In the end of writing this, as I observe everything everyone says now when I am out, I wonder how many people analyze what they are saying out loud. I listen to people talk and I hear most people waiting to put in their opinions or beliefs without ever listening to what the other person just said. "Not me, Well I, Me this, I that, it is sad. It is sad we don't take the time to listen to others only to be worried about the next thing we are going to say or compete about. I am grateful Rich listened to me that day. He didn't say much except his usual you look fine you don't need to freshen up your makeup. His way of blowing off my stupid thoughts that I blurted out but for me it was more it shut me up and gave me another understanding of living with illness and for that I am grateful.

God Bless!


Friday, May 10, 2013

Understanding vs. Regrets

When I read this this morning it hit me hard. Rich just told me the other night as I was talking about certain people that they just don't understand. They have no idea what you/we live with. My answer? I know but they have never even tried to understand. They never ask how are you doing. The people who shy away from illness are very curious to me. I go around in circles in my mind trying to figure them out and I can't. I also find it curious that when they have something happen to them we are the first to be told. Odd to say the least. I have to give it up, the trying to understand. It is never going to happen no matter how many times I go round and round in my head about it. When I am doing good I don't go round and round as much as when I don't feel well. The past couple of days have been brutal. Hard to even move my body. Forcing myself to do what must be done because life doesn't care if you don't feel good. Laundry doesn't stop piling up. Dinner still has to be made even if it is simple. The dog and cat still need and want your attention. You are unable to just throw in the towel for a day because in all truth no one really cares about what you are going through. Retract that a minute there is something that cares. Your body. It screams out to you in pain, debilitating fatigue and weakness. It forces you to the couch. Does it care or does it control? Yesterday it really caught up to me. I was even forced to take a nap. I haven't taken a nap in months. I am not a nap person but I was so tired I had to allow my body to win. I woke feeling a little better but was still in bed early last night. It is times like these it is hard for my mind to win over whatever is going on with the body. I made plans today to go stay with the grand babies while Katie goes to the doctor and I am going to go no matter what. Even if my body is not so thrilled my heart and soul are excited. I must, as always, force myself into some sort of normalcy on days like these knowing it will get better while also knowing that doing too much is going to knock me down even more. Keeping the positive mindset as hard as it is on these days is what keeps me sane and keeps me pushing on. It would be so easy to crawl into that dark hole and never come out but that isn't an option, at least for me.

It is funny that when I feel like this and have these spans of days that knock me down to the ground I always think of regrets. When I feel good and am able to do more I don't think of regrets because I am doing well and keeping busy but when I feel like this for some reason the regrets of life set in. It is like the devil pounding the why didn't you this or why didn't you that thoughts into my head. All the regrets that chronic illness brings. The why's of not being able to hold down a job. The regrets of not chasing my dreams of singing, going to college, taking art classes or helping others in a volunteer position. Yes, I have memories of some of this but had to give some up because it is just too much. One of the worst things for me is not being involved in this stuff but the driving. Yes, if you can believe it or not driving is exhausting it wears you out so much that by the time you reach a destination you are too fatigued to do what you went for, I know makes no sense to a healthy person, but true none the less. It is really strange how when you feel like crap your thoughts can travel right along with that crappy state your body is in. Even as I type here my left hand is getting cold and numb. Why? I have not had that in a long time and now it happens. Why? One little thing like a hand going numb can send you into a pit of trying to figure it all out. You live in a life of never knowing what might be serious and what might be no big deal. Most stuff isn't a big deal and if and when you do decide to call your doc they usually think you are nuts anyways so you hide, you live in your own little bubble of hell, the bubble no one else knows about, the bubble no one else really needs to know about, the bubble no one cares about.

I try to understand and believe I never will. I regret a lot but I also have to believe that what I have been able to do in the past is enough, at least for now. I keep my eye on the future that one day this will all disappear and I will be normal. Normal enough to get back out there and do some of the things I regret. Normal enough to understand that all I have been through was all for a reason believing that right now I don't have to understand I just have to live and make it through days like these. Live to the best of my abilities and on some days that may just be playing with a three year old and a five year old. Holding a new born and secretly praying they never  have to suffer as I do because of the genes that may have been passed on to them. I spend my time trying to love the ones who truly love me and who understand, at least some of what I go through, but also knowing they never can.

Time to go get ready for my visit with my loves and pushing myself on to whatever else this illness decides to slap me upside the head with for today. I am strong enough to face anything that comes my way and believe me I will have no regrets when it comes to this illness thing because I know I fought it as hard as I could. Hopefully this will lead me to some sort of understanding one day.

God Bless!


Wednesday, May 8, 2013

There Is Always Some Good In The Bad

Thank you to my friend Beth for posting this. It sure does seem so easy to continually remember all the bad and to complain about everything when in reality we have nothing to complain about. I have been complaining a lot lately. I feel like I either need to or want to run away and lock myself in a room all by myself for a week. What a horrible thing to write but it is the truth. I am wore to the core from packing, painting, planning, and truthfully, thinking. I have had a pretty good few weeks and have been so thankful for them. I knew deep down it wouldn't last but I continued to tell myself daily how happy I was that I was doing somewhat better. Of course I had the usual I'm fifty aches and pains just as all of us do when we reach a certain age add to that the other issues of arthritis and the mix can be brutal. My mix was on the light side until last week when I started to swell more and along with the swelling comes more pain and not the pain of old age. The pain that hurts to the bone. My foot has been in overdrive and as the day goes on the pain is so excruciating it causes me to cry out in pain. One of my knees has been swollen and painful so I am trying to be more careful with that. My hip has been good but the past few days the pain has come back with a vengeance. Sleep was painful last night to some degree but much worse as morning came. Hip pain so bad it feels like a ice cold knife jabbing you. All of this coupled with a migraine from the neck pain I am experiencing make for a not so great morning. I finally rolled out of bed and took some excedrin migraine and drank my cup of coffee hoping to relieve this headache and pain. It isn't helping yet. I have to laugh because I saw someone had posted something on facebook that said something like this, how can you be on facebook if you have a migraine? Well, okay maybe I didn't laugh but got a little angry that someone who never had a migraine would have the guts to post that. What people don't understand is that when you are feeling like hell sometimes the best thing you can do is your regular routine. As for me I must, it is what gives me the hope that this pain, headache, or whatever the days brings on will pass. Yes, there are the days you are forced to sit or lay and not move, but some of the days you are able to do more normal stuff. Hope, that is what it is called when you have a migraine and you are on facebook. So, yes, I am on my blog and yes I do have a migraine and it hurts like hell, but I am here none the less. If I/we, the chronically ill, give into our physical symptoms we would never do anything and that is not an option. There is no feeling sorry for yourself because you can't, only I am going to do this or that in order to help you forget that you are suffering on any given day. I am sure that makes no sense to someone who is in perfect health and thinks that the chronically ill are just lazy and need to stop complaining and move more or whatever they might think. Sad part is I don't care what people have to say about being chronically ill. Like everything they have no idea what it is like until they experience it. Perfect example is me typing with swollen hands. It hurts but I'm doing it and it is the best thing for my hands. if I stop using them they will freeze in place and get worse so yes my hands hurt but they are still working so why not use them. I can hardly make a fist but I can type. Yay for me! You see, there is always the bad way to look at what happens to us but there is always so much more good that comes along with that bad. Yes, some days you have to look harder than others but it is there.

The few minute break I just took because my sweet pup Eva just ran up the steps and jumped on my lap to give some sweet kisses. The hot bath I am looking forward to in a few minutes here. Thinking about possibly getting some art out and painting something or sitting on the couch watching the Criminal Minds series I taped for days like this. It is all in finding the good in the bad. I had another friend Darla who commented to me last night about pain and depression. Can pain cause depression? Does depression cause pain? Of course I must answer yes to both of those questions. If you allow it they can both eat you alive. I fight both everyday although I still do not believe I am depressed. I am thankful for that. I know there are people who think there is no way you cannot be depressed with all you suffer from but for me I am fortunate. Yes, there are the days I want to run away but when I look at the whole picture and bring it all into perspective the happiness feeds my soul. I don't allow the bad to bring me down, on most days that is. If it is a bad day I make the best of it and I don't believe there is any other option. I know tomorrow will be better and if I am lucky tonight will be better! Its time for me to go I have a hot bath calling my name. Make it a great one!

God Bless!


Wednesday, May 1, 2013

I'm Doin' It!

I had to add this to a quick entry. It is too good not to share in my daily struggles that are sprinkled with goodness on many occasions.
Believe in yourself! I have been painting, staining, packing, along with many other odds and ends jobs. My foot is swollen and very painful, my hands swollen and painful especially my pointer on my right hand, my hip hurts, my neck is stiff and painful, when I get down on the floor it is like climbing Mount Everest to get back up as I scream in pain or moan like I am having a good time when I'm not, at least not that kind. BUT, the important thing is I am doing it and it feels really good, pain and all! Here's to the new me at least for now until it all comes around and really knocks me down, for now I'm going with it and do the best I can. If I can do it, YOU can do it too! Here's to another day with air in the lungs!

Continue to believe in yourself because most of the time you are all you have. Push yourself and believe you can do a little bit more than you think you can. A few months ago I would have said there is no way I would be doing this stuff but now that I am doing it I believe I can. I also am asking my self, if I am in pain being lazy what is the difference in being in pain doing something? It is there all the time and I have to continue to push myself to believe I really can do more than my body or my mind tell me I can do. Yes, I am a little worse but it is worth it. It feels good to do more than my usual and push myself. I am only writing this in hopes that you are able to do the same. Push yourself but in the right way not a way that hurts you more or is not right for you. You will know! 

God Bless!