Saturday, December 20, 2014

Twelve Days of Christmas Chronic Illness Style

On the 1st day of Christmas my chronic illness gave to me a will to get through it all.

On the 2nd day of Christmas my chronic illness gave to me 2 swollen fingers and a will to get through it all.

On the 3rd day of Christmas my chronic illness gave to me 3 aches and pains, 2 swollen fingers and a will to get through it all.

On the 4th day of Christmas my chronic illness gave to me 4 get this over with attitudes, 3 aches and pains, 2 swollen fingers, and will to get through it all.

On the 5th day of Christmas my chronic illness gave to me 5 Arthritis Tylenol, 4 get this over with attitudes, 3 aches and pains, 2 swollen fingers, and will to get through it all.

On the 6th day of Christmas my chronic illness gave to me 6 hours of insomnia, 5 Arthritis Tylenol, 4 get this over with attitudes, 3 aches and pains, 2 swollen fingers, and a will to get through it all.

On the 7th day of Christmas my chronic illness gave to me 7 peeps who don't get it, 6 hours of insomnia, 5 Arthritis Tylenol, 4 get this over with attitudes, 3 aches and pains, 2 swollen fingers, and will to get through it all.

On the 8th day of Christmas my chronic illness gave to me 8 muscles weakening, 7 peeps who don't get it, 6 hours of insomnia, 5 Arthritis Tylenol, 4 get this over with attitudes, 3 aches and pains, 2 swollen fingers, and a will to get through it all.

On the 9th day of Christmas my chronic illness gave to me 9 leave me alones, 8 muscles weakening, 7 peeps who don't get it, 6 hours of insomnia, 5 Arthritis Tylenol, 4 get this over with attitudes, 3 aches and pains, 2 swollen fingers, and will to get through it all.

On the 10th day of Christmas my chronic illness gave to me 10 voices talking in my head, 9 leave me alones, 8 muscles weakening, 7 peeps who don't get it, 6 hours of insomnia, 5 Arthritis Tylenol, 4 get this over with attitudes, 3 aches and pains, 2 swollen fingers, and a will to get through it all.

On the 11th day of Christmas my chronic illness gave to me 11 times the fatigue, 10 voices talking in my head, 9 leave me alones, 8 muscles weakening, 7 peeps who don't get it, 6 hours of insomnia, 5 Arthritis Tylenol, 4 get this over with attitudes, 3 aches and pains, 2 swollen fingers, and a will to get through it all.

On the 12th day of Christmas chronic illness gave to me 12 muscles stiffening, 11 times the fatigue, 10 voices talking in my head, 9 leaves me alone, 8 muscles weakening, 7 peeps who don't get it, 6 hours of insomnia, 5 Arthritis Tylenol, 4 get this over with attitudes, 3 aches and pains. 2 swollen fingers, and a will to get through it all.

In the end all that really matters is the 1st day of Christmas because when you are chronically ill all you really need is the will to be stronger than the illness and believe you are stronger than any obstacle it can throw in your way. Well, that and a whole lot of humor to get you through it too!
Merry Christmas my friends!

God Bless!


Tuesday, November 18, 2014

Pieces of Chaos

I worked on this art piece for many days and hours a few months ago after we moved for the third time this year. It is large 48" x 18". My head was going crazy because I hadn't done anything artistical (my word from the little rascals movie and I love it) in a long time. I needed to release some energy out of my brain and I have seen pieces like this before but nothing like this one. As any good artist does I pondered on the piece for some time in my head knowing this was what I wanted. I devised a mental plan as to what I was going to do. The biggest problem was the questioning in my head as to if the picture in my head was actually going to be what ended up on the canvas. The reason I chose this piece is because, even though it is hard to see, is made up of many small hand cut pieces of wood cedar shaker shingles. The struggles of trying to figure out what my/our life was and still is with all that has happened over the past year has me in such turmoil that I am questioning everything. Pure chaos to me. The pieces are just that to me chaos. Every time I would cut a piece of wood, stained it, and glue it on the canvas I would wonder if my life would ever come back together as the piece began to take shape. As I sit here I am still wondering but I also am starting to get a little more at ease with life now that I am able to hang up my art work, photos, and put some personal touches on our home. A new life that will all be okay I am sure. Funny how life works like that. We all go through those times in life. You know, the struggles, sometimes they fly by in a matter of days but other times the pit is deep and it takes time to climb your way out but eventually you do. It's called hope and you have to hang on to hope or you have nothing. We struggle through so many different things each of us. Whether health issues, financial problems, strained relationships, and the many other problems that come up but we hang on and push on because that is all we can do. A funny thing happens, as it did with this piece I call Pieces of Chaos, as I put the final coat of poly on it to make it shine and help preserve all my labor of love and as it all came together. I stood back and thought to myself wow it came together even better than the picture I had in my head. We doubt ourselves so much and when we do we miss out on the hope of things to come. It's like those problems in life. They may not always get better but eventually they become easier over time and things change for the better. This past year has taught me so much. I not only took the time to do this art piece but I strengthened relationships and I came to the realization there are relationships I need to sever the ties with. When you have time you think. It's a good thing. Stopping and stepping back to see the truth and make choices that work for you and not everyone else. It is freeing and a gift you give to yourself. It shapes you into the person you are really meant to be. I have realized in over fifty years I have never put myself first. I've decided that it is time. Not in a selfish way at all but in a way of caring for myself. I am always the one who tries to help everyone else with their issues but I never take the time for me. I have to stop and I feel like I am doing a good job of that over the past few months here. It's time! I can't make anyone's life better that is up to them not me. It feels so good to finally be able to think that way and it's okay. How freeing it is when all the pieces come together.

When it comes to my health as I took much time over the past ten months thinking about that too I have came to more realizations there also. Over the past years I allowed myself to put all my faith in the doctors to "cure" me not realizing it is in me that I may get a cure and not in them. It has been a year since I have been off all the really hard core drugs for my arthritis and I feel really good about that. Has my pain disappeared? No! But another amazing thing happened. Once I began to focus on what I could do instead of what I couldn't do things started to change. I made the decisions no more doctors unless absolutely necessary. I took the control. Like I said I still have the same problems but I think about them differently now. If I hurt instead of telling myself I can't do much because I hurt I do something. Clean something. Bake. Cook. Whatever it is I find something. I am trying hard to use my mind which is something I have always done but it is different now. I am happy that since I went off the meds I have only had, guessing here, about four migraines. This is progress as I use to have them weekly. My extreme fatigue is still there and the same but oh well we are all tired at least that is what I tell myself. Yes, I still have to sit down and rest but I don't allow it to consume my day anymore. My fingers and hands are painful and sometimes don't work well but at least they work. Yes, there are the days I don't get much done but I get something done. I am wondering about getting a job outside the home besides helping Rich with his paper work. My head really wants to but I am concerned what will happen if I do and it is too much. The struggle with that is huge for me. I wonder about volunteering instead of a job but as sad as it sounds I almost feel it is time to feed myself instead of always giving out. A job would do that since I could be around people anyways and help out with bringing in some funds. I will see what happens as that mental conversation is going on constantly lately. We shall see. We moved and the chaos still continues which by the way reminds me that I am trying to come up with a new art project to release some of this madness in my head and to keep my mind off pain and suffering.

Today I will enjoy my Pieces of Chaos art piece as it hangs over our computer. I remember what it represents. A time in life of turmoil but also the hope that comes from all that turmoil. In conclusion: Life IS chaos in so many ways. In the end what is important is how WE decided to turn our chaos into beauty. Take the pieces and put them all together to bring beauty to ourselves. A beauty that has nothing to do with anyone else except YOU! Take your chaos and what you learn from it to move onto a better life for you and no one else. Only you can do it.

God Bless!


Thursday, October 23, 2014

"It's No Big Deal" Hashimotos

Don't you just love it when someone say's, "It's no big deal," to you? When I hear, "It's no big deal," I always cringe in an odd sort of way and wonder if my face crunches up or if it tells the person they are an idiot just by the look I have. After the cringe I think to myself, ya it's no big deal because it isn't you. I can assure you if it was you it would be a big deal. It never ceases to amaze me how when someone else is going through something it isn't a big deal but when it is us wow how the tables turn. I have this so often from people who always tell me, someone else always has it worse, but when they have a tragic event or health issue they are devastated with it and the game changes. There are so many times I am out in the world where I witness compassion and empathy for another slipping out of everyday life like it is no big deal. I could go on but I will spare you.

My no big deal moment happened a few Wednesday's ago when I received a phone call telling me I had Hashimotos Disease. Hashimotos is an autoimmune disease that causes hypothyroid or low thyroid levels. This is nothing new for me I have had low thyroid since I was nineteen when I had a routine physical and found out so taking thyroid meds for over thirty years has been second nature. The odd part to me is why, why after all those years did not one doctor ever check my antibody levels to see if I actually had Hashimotos? If you understand autoimmune disease in any sense you know that if a person has one autoimmune disease it sets them up to have multiple autoimmune diseases, hence my arthritis. In Hashimotos the body see's the thyroid gland as something that should not be there so the antibodies decided to attack it trying to get rid of it. In every autoimmune disease the body decides it wants an organ, joints, muscles, etc to be gone. The body see's them as a threat and the body being so amazing attacks like when you have a cold the immune system tries to get rid of it but in autoimmunes the body see's what is suppose to be there as a threat so it attacks. It sounds so simple but it is actually quite complicated not only because of what happens to the body, at times without the person knowing, but how it makes life a living hell for the person living with it.

The diagnosis wasn't as much of a surprise as the fact that I was told, "It is not big deal." Are you kidding? No big deal? Here we go again. It is a big deal. I wonder if the person who called me knows what the thyroid does?  From the Hormone Health Network:

Having thyroid hormone levels that are too low (underactive thyroid gland)

Sometimes the thyroid gland doesn’t make enough thyroid hormone, which is called hypothyroidism. When you don’t have enough thyroid hormone, parts of your body work too slowly.
Symptoms of underactive thyroid include
  • Feeling tired
  • Feeling cold even when other people are comfortable or even warm
  • Having a slow heart rate and dry skin
  • Being constipated
  • Gaining weight even though you’re not eating more or exercising less than usual
  • In children, growing very slowly

Having thyroid hormone levels that are too high (overactive thyroid gland)

Sometimes the thyroid gland makes too much thyroid hormone, which is called hyperthyroidism. Think of your body as a car and your thyroid as the engine. An overactive thyroid makes your body idle too fast.
Symptoms of overactive thyroid gland include
  • Feeling nervous and irritable
  • Having trouble concentrating
  • Feeling too warm even when other people don’t feel warm
  • Having a fast heart rate and diarrhea
  • Having trouble sleeping
  • Losing weight without trying

Having a lump in your thyroid gland

You can have a lump or swelling in your thyroid gland, called a nodule (NOD-jule). Nodules may have no effect on how the gland works, or can lead to too much thyroid hormone. Most nodules are benign (not cancer), but some can be cancerous.

Patients are told as soon as you start to take thyroid meds you will feel better but what about those of us who don't feel better? Those of us who suffer for years only to finally be diagnosed? I may never have been diagnosed had I not asked my new primary doctor about this. Both of my girls have Hashimotos so I figured I did too. I knew it ran in families so when they were both diagnosed I knew I had to have it. Funny part is with Hashimotos your thyroid levels can fluctuate from low to high, high to low, even on the meds. It needs to be checked every six months to keep an eye on the medication dosage. Symptoms come and go like the wind. You might have them for a week and then they disappear as fast as they came. It's odd. Many times after becoming pregnant or after giving birth a woman will develop Hashimotos. Sadly after birth a woman's symptoms get blamed on postpartum depression or you're a mom you are busy. It's no big deal. Really? Imaging trying to live, raise children, keep up a home, work, have a social life and friends with absolutely no energy, it's no big deal? Then on top of that doctors that think you are just a busy mom. It's a big deal. It makes me so angry how this shit has affected my life and slowed me down. It makes me even more angry that my children must suffer from this crap. When I hear disease behind a word like Hashimotos I think it should be taken more serious. We hear heart disease and the red flag goes up why not with Hashimotos?

I am beyond thankful that I finally do have the diagnosis because it helps me to sort things out in my head after all these years. I don't want sympathies or that's too bad's I want to educate people. I have said it before and I will continue to say it, "A person knows when something is wrong with their body. Search for a doctor that will listen to you and fight for you. If you have to go to a hundred doctors then so be it, go!" I am happy I finally have found one. I am now seeing a endocrinologist who is keeping an eye on my thyroid gland. He will redo blood and ultrasounds regularly to make sure things stay as they are. Is that relief? I'm not sure but at least I have the care I should have had years ago with this matter. I plan to do some intense research on Hashimotos once I get settled into our new home.

One other important take away from this is the fact that autoimmune disease can take years to diagnose. This has been thirty three years for me. Thirty three and that is unacceptable, at least to me. Remember there are over one hundred autoimmune diseases and many of them have the same symptoms or symptoms that overlap one another. They are hard to diagnose but you must continue to fight for yourself and for your health if you know something is wrong. A person knows how they feel more than any blood test or sometimes even more than a doctor. Don't ignore the signs and symptoms. Don't listen to the "It's no big deal's," take charge of your health. The next time someone complains or tries to talk to you because they don't feel well, listen, they are probably suffering much more than they are telling you. You can be that compassionate, empathetic soul that the world seems to be too busy to be anymore.

God Bless!


Wednesday, July 9, 2014

Another Train

I stumbled upon a song a few weeks ago on the radio while flipping through the stations asking myself if there is any good music these days. Then she appeared out of no where on a station I had never heard of. Mary Gauthier. The song was long and about love so of course I was hooked. The music captured my attention right away and I fell in love instantly when her voice as she began to sing the words. It was a song about what sounded like an accident of some sort. When I got home I searched and searched the lyrics I wrote down in the car in hopes of finding the song but most importantly the artist. Finally after a bit of searching she appeared. I listened to the song again and after a few replays I was hooked even more. I found out she had a new record that was recently released called Trouble and Love. I hit Amazon and found it knowing I had to add it to my collection. In the meantime I did more research on this mysterious Mary Gauthier and found the record has a total of eight songs written about the breakup she had with her girlfriend. I got the CD the other day and popped it in listening closely to each lyric she wrote about her pain. It was heart wrenching to say the least. I could feel her pain in her lyrics and my heart ached for her but a funny thing happened as I listened to the whole record, the last song. Another Train. The scorn of a love gone bad. You know how that is, we all do. You think in the beginning you can never love again but a funny thing happens over time the healing. You move on through the pain and you begin to know there will be another love, Another Train. You pick up the pieces and you begin to live again. The pain is still there but it begins to heal like the time you skinned your knee when you feel off your bike. You bled, you healed over, but the scar is still there. You learned you have to be careful riding over those rocks because they leave scars when you fall but you pick your bike back up and you petal again. Love is no different. Rich and I laugh a lot about the fact that I would have to remarry if something happened to him. I would, it's no secret I need a man in more ways than one. Then funny part is he says he will never RIP if I remarry because he knows I'll be with another man. Hahaha see why I crack up? It brings me such a weird sense of joy to jab him with that once in a while. On the flip side I always tell him I would want him to remarry if I go first but he wants no talk of that. Love lost that heals over time. Another train. We see it all the time. We question it and wonder at times how people can just move on like they do but we never take into consideration what the tracks might look like if the situation were ours and we were on that side of the tracks. Understanding. Love. Compassion.

Illness in it's own way is like Another Train. A train that comes in and out of the station sometimes ripping our heart out the same way a love gone bad does. It's not just the specific illness you deal with but all the crap that drags along with it like when a branch or twig is stuck in the wheels of the train. It drags with you on a daily basis like a bad dream. I sit here right now with neck pain that I haven't experienced in a while but that's okay there's Another Train. The train of knowing this too shall pass just like the heartbreak we feel in love. When you are chronically ill there are the days you are on a slow moving train like a caboose trying to keep up with the mighty engine. Chug a chug you can do it, you can do it, and you will do it. You know the train you are on at the time might suck but you also keep in the back of your head there is Another Train. See it? There it is! It might be on a totally different track, miles away, but you know it's there. You keep that train on your radar because no matter how bad things get you know you will have better days ahead to live life to it fullest. Hope.

I forget how much stress plays a role in chronic illness until I am reminded as I was last night. We are building our house and it has been some what of a nightmare from the get go but we move full steam ahead despite being derailed more than once. I was told I hadn't picked out house items that needed to be done a few weeks ago when in actuality I had them all picked out and did it as soon as I was told to but the salesman didn't write a thing down. Really? Really?? If you know me I am a no nonsense person if you ask me to do something I'm going to do it. I expect the same from others hence the reason I was pissed. Do not tell me I didn't do something when I did it. I hung up the phone and was fuming and asked Rich if anyone can do their job right anymore. It seems we all want these big salaries but don't have the work ethic to deserve the pay. I didn't sleep well last night which is the reason I am up at the computer so early in the morning. I woke up at four AM and began to stew. I couldn't talk to the salesman I dealt with because after I got the information last night he was already out of the office. I'm pretty sure that was all in the plan since my hot-headedness can explode when I am at the peak of being pissed. Sleeping on it and waking up at four AM made me think about Another Train. I laid on the pillow thinking I am going to find another place to go and just order from somewhere else but then I thought Another Train. I have to remember to not get so worked up and mad. There are times I have to pull back and take a breath but you see that is another thing that has been taken from me because of illness. I don't get out much so when things go wrong they are huge for me. I'm really not upset about him not writing the selections down, well kind of, I'm more mad because now I have to drive forty-five minutes back to the showroom, spend time picking out the same things I already picked out, drive forty-five minutes back home only to have my day be over. Yes, over. The energy it takes me and others with chronic illness to do the minor inconviences to most is unexplainable. I lose a day because someone can't do a simple job? It makes me furious. Plus I have lost three to four hours of sleep from the stress. I need that sleep in order to help my body heal itself. I know no one understands this but for me it is life. Ouch, my neck. Pretty sure stress and lack of sleep are not helping this matter which in turn means I will have to wrestle with the idea of taking a muscle relaxer or living in my head telling myself it will get better. Another Train. I need to hop on Another Train and change my way of thinking because if I don't it will all compile into more and more stress that I just don't need right now. I woke up telling myself to watch for Another Train, the one that is full of love, goodness, and health. I am going to try to find that train and if it is off in the distance a long ways down the track I will still keep my eye on it. If I don't what was the point of getting out of bed.

God Bless!


Thursday, June 26, 2014

Just A Little Understanding

I got a nice quote off of a FB page called Chronic Perseverance :
"And even if somebody else has it much worse, that doesn't really change the fact that you have what you have.” - Stephen Chbosky
People love to tell the chronically ill, It could always be worse," but I believe it is to make themselves feel better not the person dealing with the illness. This quote is spot on when it comes to living with chronic illness through others eyes. It is always easier to assume someone can't be sick if they look good or are out and about for a while. You never know the consequences someone pays for looking good or for taking some time out of the house. In an odd sort of way it helps us to escape the illness to get out and act normal. I love to get out when I am feeling well enough to do it. It is easier when I have a family member with me but I try to do things on my own when possible. Living life is still a priority for me and many I know who suffer.
While I was thinking about this quote it brought me to other situations in life that people face that they don't want to deal with. Death. Who wants to deal with the loss of someone they love and care about? I'm pretty sure no one but it is a part of life just as illness is for many. Don't want it but got to deal with it, no choices here. I chuckled to myself in some sort of odd way when I thought about death and grieving part of it. Grief is such a hard mysterious thing to have to go through. It begins with the death itself but as the days drag on and the thoughts in your head bring you back to not so good places you may have experienced with the person who died well that makes it really hard. The trying to make sense of the things that may never make sense. The relationship that may have suffered along the way and the guilt it leaves on you can be unbearable for some. I'm not good at grief at all. I can help people when they are dying but not in their grief. I can sit at countless doctor appointments and try to help figure things out or just sit next to someone and say nothing but grief, that is just too complex for me. I want to make it all better and I can't. The more I pondered on my un-gift of helping someone through grief it brought me back to being ill everyday. The dealings with it and the people telling you stupid things like, It could be much worse." The correlations between the illness and my inability to help those through grief are almost one in the same. People saying those stupid things to the ill to make it better are no different that me wanting to fix the grief, which by the way can take years to get through and reach some sort of new normal. Oh I know all the facts on grief I have studied it and almost did it through Hospice. I backed out knowing that it wasn't for me. The more I thought about this correlation between illness and grief I have come to realize it's okay if people say stupid things to the ill or to me. I do it, maybe I don't say it but in my head I want to run away as fast as I can and not deal with someone grieving. I'm sure that is how many people deal with being around the chronically ill. In fact I know it is because I have experienced it first hand. Sad but true.
This realization has brought me one more of those ah-hah moments that I needed to get to. Years later it starts to make a little sense although not totally at least some sense. I just have to remember this the next time I hear, "It could be worse," and remember "And even if somebody else has it much worse, that doesn't really change the fact that you have what you have.” - Stephen Chbosky. Then I will move on from there and remember my issues with grief. I will remember we all view the world through our own glasses. I want compassion and empathy showered toward me and I must cut everyone else a break even when the words that come out of their mouth are not what I want or need to hear. I am learning slowly but surely. What a relief.
God Bless!

Saturday, June 21, 2014

No Deposit. No Return?

I was just thinking about this past week which whirled my mind back to the past oh lets say fifteen to twenty years. Funny how time has a way of flying by so fast that what seems like only a couple of years is in all actuality many more. I was throwing a load of wash in the dryer as these thoughts ran through my head and I wondered why you can't return your illness like you do clothing. I went last week to find a bathing suit that I will more than likely never wear but at least now have just in case. I looked and tried on a few then settled on a couple that I liked but you know how we women are we just have to have another persons opinion especially on things like a bathing suit. Usually I am pretty cut and dry but being conscious of my large frame I decided I would buy them all and take back what the peanut gallery told me was a no go. I knew which one was the right one and yes that is the one it turned out to be but the subconscious was still in control. I am sure mostly because of all the world tells us about being thin. I haven't been watching tv at all the past few months and it feels really good NOT to have all those crap messages being sent to my head. After all I am hard enough on myself when it comes to size. I wish it wasn't so but it is. Back to the bathing suit. I waded up the one I kept and took the pieces back that the peanut gallery made faces about. Returned. It was so nice to decide that those pieces weren't for me and take them back to the store for a full refund with no questions asked. Ah, if only chronic illness could be like that. I don't like it, I don't want it, here take it back. I don't even want any return on my investment since I had no deposit in the first place. I didn't ask for this and I surely wouldn't have paid a penny for it. Although it may be nice to get some what of a return on our investment that we have paid into for this illness and I am not only talking the financial burden it has had on us. That I can save for another entry or if you read past blogs I am sure I have screeched about this before.

The reason I was pondering so hard on this issue of no deposit no return is because of this sore throat. Sore throat you may ask? I had a scope put down my pie hole this past Wednesday because of issues I have dealt with for years having acid reflux, hiatal hernia, swallowing, chocking on food and during sleep, breathing issues at night, bending over the toilet with water draining out of my mouth because I think the acid is eating away so hard it makes my body want to throw up but it just can't. I could go on but I will spare more of the gory details. The scope thing isn't a big deal I have had it many times before. What is the big deal is that I have never received any relief from the other doctors that have performed this procedure for me. I have a new primary doctor who insisted I needed another scope since it had been three years since the last. I somewhat pleaded with her if it was really necessary. I wonder what my face looks like when a doctor tells me I need yet another test. I assume like a first grader who just lost a puppy or one of them whinning when someone takes their candy. I agreed to the test after trying to get out of it at two appointments and now I am glad I did. This new gastro doc stretched my esophagus and took biopsies of the erosions that were present. I feel like my swallowing has improved already and I am hoping when the sore throat subsides it will be even better. I have had a lump in my throat for years from this and that is already feeling better. I haven't choked on food or water since. WooHoo! What a difference it makes to have the best doctors on your side, finally! I wonder what it would be like if you could take back all the years of not so great doctors who didn't believe much you said or disregarded your complaints. Would I have as much damage as I do now if things would have been taking care of long ago? No deposit. No return.

I have to come to some sort of realization that the old sayings, you can't cry over spilled milk and hind sight is always 20/20 are both true but when it comes to your health, you only have one shot. You can't get it back. If something isn't diagnosed right and lingers over the years you can't take an eraser and make it all disappear. It's sad. I wish it could be different not only for me but for others I know who have paid the for consequences of health issues. There is no one to blame so why go there? You have to be in charge. I know all that and I knew I needed more help with this issue for a long time  but there are times you want to block it all out and let it go. You get tired of saying the same thing over and over to your doctors you decide to let it go. I didn't want that scope, another test, but I also knew it was time. I don't want to be sick but I am. I don't want others to suffer but they do. You have to learn to go with the flow with all this illness crap. If my new doctor thinks I need something done than I must trust her enough to get it done especially in the hopes that some of my issues can get the proper care they deserve. You can't return that kind of care. I am glad I found her! I will keep her just like I did my new bathing suit!

God Bless!


Thursday, June 19, 2014

The Price We Pay

I know I have written before about the give and take of living with chronic illness but the other day it hit me straight in the eye and to be truthful I forgot about the give and take and dove in too far that day. It's all fine because it feels good that I have made it to a place where I am able to make plans and not have to always cancel or always think about the fact that I might not be able to do whatever it is we are going to do. Katie and I took the kids to a farm to pick strawberries in the afternoon this past Monday. We had talked about going and when we got up Monday morning I asked her if she wanted to go but they had other plans to go to the library so we decided we would go Tuesday morning instead. You see, when I make plans I usually need to do them earlier in the day because as the day goes on I putz out. I found out from a friend on facebook a farm by our house had nice berries and I also found out it was kid day. Face painting, wagon rides, and other fun stuff going on so I asked Katie around 3:00pm if she and the kids wanted to go. Sure. So we packed up and went. It was hot and I I forgot about the heat wearing me down and making me weak because I was excited for Michigan strawberries. We got to the farm and it was so exciting for the kids. We waited for a few rides and the kids went on one them then we decided to go pick the berries. I knew as I was standing in that heat picking those berries I was in trouble. I could feel it. That was the minute I remembered what doing to much, especially in the hot sun, does to me. I walked down to the berry patch and told myself to just ignore my body and pick the berries. I pushed myself hard but I did it. When we finished I started to walk back down the path, all by myself, as fast as I could which was about as fast as a turtle walking in a race if you know what that might look like. All I could see was the shade that was visible up by the shack where you weigh and pay for the treasures you picked. I took off without even a thought to the fact that I left Katie with three kids in a strawberry patch. How rude I thought after the fact while at the time I didn't feel much remorse for leaving them all behind. Plus she doesn't care anyways like she always says, "I do this all the time it's no big deal." Don't tell that to a grandma because to me it is hard work.
I stood in the shade trying to find myself knowing the kids still wanted to go on a wagon ride. It is funny how things work out because there were free hot dogs and chips and the kids decided to eat before the ride. It helped so much to sit down and rest under the big tent with tables and chairs. The breeze seemed to have picked up as it was going on 5:00pm by now. We finished and fortunately I was able to go on the wagon ride. Just that twenty minute rest helped me conquer what seemed an impossible feat. When we left we found out they are having the same kid day next Monday so we decided we would go back next week too. I asked Katie if we could go earlier in the day so I didn't get knocked out so fast and my energy was still at the high point of the day. Of course we can and we will!

Once again I was reminded of the price we pay as the chronically ill. I was reminded of what chronic illness does to me but most of all as I ponder back it also reminds me what it does to the people who love me. I am fortunate to have a great support system but it is hard to know that family events get centered around what I can and can't do. I hate that part of it the most. Having to abandon my child with her children just to rest. Is that the normal world? I think not. I looked out on the berry patch and became envious. Envious because all those people, young and old, out there picking away not having their body yell, no scream, at them to get to the shade now or sit down now. I wonder what that is like, to not have that happen, I can't remember because it happens in all situations for me. I tried to be normal and seemed like I was when we left but then I was reminded real fast that I'm not. There are so many things I still want to do but out of fear I don't. What a horrendous way to live always having to think of the consequences. Days like that Monday whack me upside the head but they also are good. They make me appreciate things so much more than I probably would if I were normal. Watching the kids was such a joy I appreciated more than I might have if things were different for me, or normal. The price I pay is worth it when I can have a heart filled with love and joy for my family and the time we get to spend together. I feel blessed even in the midst of never knowing when my chronic illness will decide to be in charge and when it does force me down I will not let it hold me there for long. i now know what I have to do to overcome situations like this. I give in and let it win for a minute or two then I tell it to "SUCK IT" and move on! What more are you going to do?

God Bless!


Sunday, June 15, 2014

Well, of Course it Would Happen to Me it Always Does

It happened. It shouldn't really be a shock at all. I knew it the minute the words came out of the dentists mouth, "You shouldn't have any problems and should heal nice, the tooth came out easy all in one piece so I am not expecting any problems." Right then and there at that very moment I felt a jolt of lighting flash through my body. My brain was yelling NOOOOOOOO don't say that now I am jinxed. I went home with a positive mind set after the the tooth extraction that all was going to be fine except for his nagging words that seared through my head. I hate to say it but I have always had a weird physic ability and this time was no different. When I got home I did everything he told me to do so how could anything possibly go wrong? I had a lot of pain from this tooth right from the start. My jaw was swollen and hurt like hell right away but I kept the self talk going that this was all normal. As the days went on and on nothing changed and continued to get worst so I knew it was time to call. I did and the dreaded words dry socket spieled out of the dentists mouth. Antibiotics, pain meds, ibuprofen, and it will be better in a few days. Of course a few days for me turns into 4 or more but I can deal at least I know what I am dealing with. The pain is starting to lessen as each day goes on but I am tired. I never thought a tooth issue could knock the wind out of a person like that. I'm not sure why I am surprised at all because this kind of stuff always happens to me. You know the person that always gets what the doctors say is a very rare occasion? The surgery recovery will be a few days to a week so guaranteed for me it is two to three weeks or more. The rare complications are always at the top of the list for me for some reason. I get a cold and it can never just be a cold that lasts a week or so it has to go into three weeks or more of coughing and snot that never ends. I don't know why I am surprised every time because this has been my whole life. The loser since birth. I swear nothing has ever been in my favor. I made crap choices in my life that have bit me in the ass for as long as I can remember. I made bad decisions on friends with the exceptions of a few good ones but even those I screwed up on many and left them to find the better of side of life which always turned into the shit side for me. I wonder if I can do anything right? I often think the reason I ended up with Rich was because God felt sorry for me for all the foolish decisions I have made and suffered from, like I deserved at least one good thing in life.Then I wonder if all the health issues are some kind of funny mean joke or curse that is being played on me just to see how strong I really am. I feel like my life is like walking through quick sand all the time. I never really sink I just keep walking along hoping things will get better health wise although it seems the sand gets thicker and thicker. I know people wonder about these words, especially the ones who think I have it made because I don't work. I sure wish I could have a job and have all the other crap taken away and just live a normal life of going to work and bitching about it. It seems like that would be so much easier then having a body that hates the hell out of you and turns on you every chance it gets. I am feeling down and worn out after the past two weeks but I know things will get better because they always do, maybe not on my terms but on someones. Until the day it all either gets better or goes away I will plug on and I hope you can too with whatever you are struggling with!

God Bless!


Friday, June 6, 2014

A Life That's Anything But

We've all heard the saying you never know what it is like until it happens to you. I was thinking about this the other day when I was thinking about something I said about that first sentence. Either you get it or you don't. If you ever lost someone close to you then when someone you know loses someone close to them you can identify with them. I have written about this before I am sure but when I was tearing this thought apart in my head I began to realize this concept is no different with chronic illness or any illness for that matter. I believe that is why when someone I love get ill it tears my heart apart. My loved ones are not suppose to be sick and suffer, that is my job, all mine. I am use to it by now, being sick. Watching Mike as he was so sick I felt like I was in his body. I've been there and it isn't a joy ride. I believe that is why it is easier to be the sick person than to be the people watching the sick person suffer. It seems the sick one has the control, the power if you will. They can be honest and say no I don't want to eat or no I don't want company just leave me alone. But when you are the one watching what happens is you want to fix and make it all better. It was no different as I watched Mike and the people who surrounded him all they all, we all, wanted to do was make him better. I knew he didn't have an appetite and he didn't want to eat but the first thing we do is try to shove food down a sick person pretending like it is a some magic pill that will make them better. I know food/nutrition is important when a person is ill but when you are the sick person thinking of food can make you even sicker. I saw it in Mike's face I have witnessed that look so many times as a Hospice volunteer. I think that is why I was so focused on research and making sure I absorbed every word the doctors told us because I knew at that time that is what really mattered. Although I believe I was guilty of the food push also as we tried to think of things to buy him that might taste good to him. How do you stop that? You can't it is human nature and a part of life. All of life revolves around food. Today I am thankful for my disease, very thankful. I can eat. I have an appetite. I don't have a diagnosis of six months to a year that was whittled down to only a month. There was no time for him to feel better enough to have the strength to enjoy even one day doing the things he loved and maybe having the chance to tell people goodbye. That makes me sad but it can't be changed. It rips my heart out that I wasn't more honest with Rich and his family when I knew the day before when I visited him that he was on his way out. I've seen the signs but how do you tell people something like that? Hey, you better go today because... My one regret that I didn't but I knew they were going the next day and I thought he had a week or so left, at least. I even came home the day before and told Rich something to the fact that I didn't like what I saw today. I wish I could stop the voice in my head of that regret of not telling them but for now it is what it is and I will deal with it. It was in the plan and I have to accept it and how it all ended. That's it.

When I started writing this blog I had no intentions of writing about Mike again but I guess I needed to. It could happen for a while and will not apologize for it. My intentions were and still are to get a point across about being ill. I'm not sure it will work but it helps me feel better about the little suffering I go through to share and hopefully get at least one person to understand, not me, but maybe someone they know who is ill.

I had to have one of my molars pulled out the other day. Big deal right? We all get teeth pulled at one time or another but let me tell you I have horrid teeth. Thankfully I have a wonderful dentist who takes really good care of me and you would never know how bad and expensive this mouth is. I often wonder if it is punishment for the all the shit that comes out of it. Possibly? Seven crowns with root canals and now a bridge to be put in. I like to tell myself it all has to go hand in hand with being ill or was it all the candy I use to eat as a kid and still love to eat? Who knows. Genes and crappy teeth it is what it is. Back to the tooth pulling. So, so much fun. I get reactions from the numbing shots as soon as he injects I begin to feel lightheaded and my heart pounds in my chest as it does when I take certain drugs. I have always blamed this on my thyroid problem for some reason because I know certain drugs along with thyroid problems can cause unwanted side effects. I made it through the injections and as I was sitting there waiting for my lower lip to fall to my chest and the droll to start coming out of the side of my mouth my eye began to droop. I could hardly hold it open. Pretty sure this doesn't happen to most people when they get a tooth pulled or any other extensive dental work. Next the fun part. Bruce came in, yes we are on a first name basis he is Rich's best friend (besides Mike) after all, and he began reefing. He warned me it is a tough one to get out so I was prepared. It didn't hurt but the worst part was the pulling of the jaw on the other side of my mouth that was absolutely excruciating. Wow I was not prepared for that. Finally it was out! Good! I came out feeling like I just had the wildest sex of my life but it was only a tooth pulling, dang it. I felt sick the rest of the day. I was so tired I could hardly do anything at all. I went to bed at eight or so that night and slept so well. It took everything I had to get through just having a tooth pulled. Pretty sure this doesn't happen to most people who have teeth pulled. If it does I would feel so much better knowing. It sure feels like I have a life that anything but, the dreaded word, normal.

The next adventure came yesterday when I was shopping with my mother in law. We were at the health food store for some ginger tea and decided to check out each isle. The sea salt captured my attention as that is all I use now. It is so tasty and better for you so they say. I bent down to grab the blue plastic container. My brain told my fingers to grip it and I did but as soon as I lifted the container you know it BAM it crashed to the floor as my hands decided they did not want to cooperate. There we were and I think it shocked me as much as my mother in law as we both looked at the floor and in some odd way continued to talk about the salt and the spices surrounding us. Then I thought what now? I picked up the half full container and danced around the four foot span of glistening sea salt and made my way to the register. "I accidently dropped some sea salt in isle four." Pretty sure I was fifty shades of red when I walked up there. Then the cashier did it, she grabbed the speaker, yes the speaker, and proceeded to say those words we love when we do something like drop a container of salt in isle four. "Clean up in isle four, we need a broom." Me and fifty shades of red that were probably now purple made our way back to the isle four and apologized and thanked the employee who had to sweep up after some stupid old lady in isle four dropped the salt. Funny now, mortifying at the time. A life that's anything but. Yup, that's me. I hate that when I want to use a certain part of my body and I can't or I get half way done as I did with picking up the salt and my body throws a fit. It sucks. It makes life hard and embarrassing at times. This is why it makes it so much easier to just stay home and clean up my spills in the privacy of my own idiotcy oh I mean home.

I must remember when I begin to beat myself up for all the things I am unable to do that in the midst of all I feel I can't do or do perfectly at least I can still do many things. I'm not dying. I'm alive and able to enjoy so many things that many who are to busy to realize how wonderful they are. Right now I am pushing myself to way much but I am living. I have no idea what tomorrow might bring so in this moment when things are okay I pick up my mother in law for a day away. I pick up my one year old grand daughter in hopes that I won't drop her and if I feel weak we sit and she climbs on me. I help Hunter and Addi plant a garden and love the joy it brings them as I am dizzy and want to barf. I rake the yard and feel like a rag doll afterward but I did it. It isn't about the illness at all it is about what really matters, the time. Living a life that is anything but is hard. You push yourself. There are so many times you don't want to do things but you must force yourself to do them or life slips away and you can't get that time back. I will enjoy what I have for as long as I have it and that is the one thing that makes a life that is anything but, just the way it is suppose to be lived!

God Bless!


Friday, May 30, 2014

Trying to Make Sense of a Life in Shambles

May 8-May 30, 2014
Yes, that is me screaming or at least the voices in my head trying to get out all the madness that has been going on inside there for the past twenty two days. I missed my blog so much the one place I can come and scream to the world. So much has happened in such a short time span that I can hardly keep it all straight I need my blog to process it all. I am trying to sort it all out but I feel like I am trapped and unable to make sense of most of it. The most tragic being the loss we have encountered that came way way to fast, Rich's brother passing on and leaving us in this hell while he is at peace. I am mad as hell. What the heck happened? We fought so hard to get him the best care we could. We did everything right, I think? But the cards won and said Royal Flush you lose bitches, and lose we did. It all feels like a dream we can't wake up from. How can a person be here one minute and within days be gone out of your reach? It is insane and I don't believe there is any way to make sense of it at least until we meet up with him again. We hang onto that hope of seeing him again. What more do we have? The memories. The laughs. The better times. Recovery. How do you recover from such a huge loss? I don't think you ever do. Watching the people I care about most suffer and being helpless to take away their pain of such a ginormous loss. I see Rich work even more trying to "keep busy" and I know it can't last. His heart has been ripped out of his chest and my hands are tied. I watch his mother and her sadness after losing yet another child. Her fear that something is going to happen to one of us next. It is excruciatingly painful to endure. But there again, HOPE, the hope of being reunited. The only possible sense I can make of any of this. If I think too much I become overwhelmed and have to shut it down. That's all I can do.

A few days after Mike's final goodbye we moved again. I called in Two Men and A Truck to move us a few miles away from one daughters home to another daughters home. It was a brutal move as our space dwindled to half of what we had. I had to condense even more. I thought we were already down to the essentials but I guess I was wrong. It's amazing how little you need to get by with just your basics. If I am sitting and thinking too hard as I always do I wonder what I miss. I mostly think of books or magazines or I sit and dream of raising chickens or having our own home again. Our own bathroom. Drawers to store our essentials that are now in baskets. A house for the dogs to run through and be free instead of worrying about them peeing in someone else's home. They don't do it much but when they are confused they do. These moves haven't been easy on them either. It won't be long hopefully the end of the summer and we will be moving again but like I told Rich the next move won't be so bad if it is to our own place. The best part is it is working out well with our son in law gone to IT school for the military for six months. We are able to help Katie as much as old people can and it is a joy to be with the little ones. They keep us laughing and help us remember not to take it all too seriously, at least when we are with them.

My health has been at a standstill point. I feel okay except for the overwhelming fatigue and getting very sick for a week after we moved here. I'm not sure if that was from the move or the stress of everything going on but I laid very low for a few days and took it easy enough until I felt better. It wasn't fun. Actually quite scary. I became very, very weak and it freaked me out. I haven't felt that kind of muscle weakness in a very long time. It is very hard to explain but you physically cannot do much because all your brain is telling you is to go lay down. It doesn't matter where you are or what you are doing if that kind of weakness calls you listen because you have no choice but to listen. The summer is here and for me heat is tough. I get very wore out where most people feel better in the heat I dread it. I'll take snow and 0 degrees back any day. the worst part is the room we are shacking up in has no air. Me, summer heat, illness, and no air do not mix. The pain is something I am trying to ignore but at times it is hard. Mind over matter. Moving more even when I want to crash. I'm not sure if all of this is from no meds and it is finally getting out of my system or what. I know my eye is drooping more and that is not a good sign. Those little things that mostly I notice but they are there none the less. It's going to be a tough summer that is for sure but I'll do as usual one day at a time. You learn to do that when you never know what tomorrow will bring, or tonight, or the next ten minutes. It's all good. I am just thankful I am able to take care of myself as others I know are not.

Time will move on and I know there will more times in life where I/we are slammed to the ground but it's okay we will push on and like everyone else in the universe we will deal. We all get slammed down at one time or another. I think the important part is we continue to pick our weary selves back up. We do what has to be done in the midst of pain and suffering. We write in our blogs. We cry to a spouse or a friend. We are strong that way we humans. Time begins to heal the heartbreak although the losses will never leave us. If we can't do this then we lose. We can't lose. Maybe we do something nice for ourselves to help us feel better or not. Maybe we just take the time and process that which cannot be processed. Maybe we learn a lesson as to why certain things happen. I don't know what the reason is that Mike had to be taken at such a young age but maybe someday it will make sense. I don't understand why I and other people have to suffer with illness but someday maybe I will. I don't understand why this whole building a house thing has been such a hard long journey of one bad thing after another but I'm sure one day I will. Rich keeps telling me it will be wonderful once we move in. My answer? "Okay dear if I don't kill someone in the process." Oops sorry that was one of the voices in my head letting off some steam. In the end, Yes, in the end it will all make sense, another one of Rich's famous last words. I hate it when he says that. Opps sorry that was another voice in my head. I hate those voices they can drive me in bonkers. Funny I'm not there yet but I will hang onto the hope and I hope you do too!

God Bless!


Thursday, May 8, 2014

You Can Never Give Too Much

Many years ago when my Aunt became ill with Alzheimers, hate that word, I learned so much about taking care of someone who is ill. I never, nor did my parents, realize how hard it would be when three people must provide all the care for one person. It was exhausting to say the least but when you love someone that is what you do. How can you not? I don't understand at all the people who run from having the privilege of taking care of a sick or dying person. Pure selfishness if you ask me. You learn and grow so much. Aunt Emily was a gem. She never had children of her own but wanted them. You know how it is sometimes some of the worst people in the world can get pregnant at the drop of a hat while others have to go through hell trying and many of them never being able to. Aunt Emily adored me and our kids. We would go each week or so depending on kid obligations and either eat lunch with her or go out for lunch. This was where the kids learned to eat cottage cheese with pepper on it. Cracks me up that to this day they still do it that way. Richie even brought it up this past weekend when we were visiting that he loves it that way and it makes it delicious. I often wonder if it is the taste or the memory. I hope the latter. All three of them loved going to see Aunt Emily she was probably one of the kindest people I have ever had in my life and not just because she was my Aunt. Funny because my mom is like that too just an all around very nice and kind person.

After the Alzheimers, argh, progressed Aunt Emily began to have back pain which of course was "nothing" according to the quack she saw at that time. I wonder how many times doctors see someone in their eighties and they say it's nothing. I learned as I look back that this will never happen again. I will stick up and fight for any person I am helping in any medical crisis. Her "nothing back pain" turned out to be cancer of her fallopion tube on her left side. It became so bad by the time of her diagnosis that she was bent so far over you could have used her back as a table. The tumor even began to grow out of her back side. Yes, this will never happen to my parents or family ever again. Stick up for yourself and your loved ones because the medical community won't unless you push for it. Aunt Emily died a few months later. Sadly but it was the best thing for her to be out of the "made up" pain she was experiencing. Still pisses me off to this day. I have had to learn to tell myself to let it go but when you are primary in someones care its oh so hard to do. Why do we always have to blame ourselves for everything? The worst part is when you have never experienced a given situation, like this, you are flying blind. Sad there is no one there to whisper in your ear and tell you what to do so you don't have to live with that regret. Then I think to myself everyone dies and it was her time. Who knows when anyone's time is.

Just after Aunt Emily died I was tired as were my mom and dad. It took us a while to get back to some sort of normalcy. When you are taking care of someone your time is filled to the brim not only taking care of them but taking care of your family, yourself, and everyone else coming at you so after a death the silence and nothing to do can be frightening. I decided after some time that was the time to volunteer and give back hence the reason I was a Hospice volunteer for five years. If I couldn't help my Aunt get better I surely could help someone else even if it was only a ear. Well, my ear became so much more. The things I learned helped me so much. The people I met, the dying and the families and friends, are people I will never forget. Now I use my support with my brother in law and his family. It's odd because I remember learning that when a family member gets cancer it will be much different then when it is a Hospice patient you are not connected to. I never thought that could be true but wow is it ever. I use to visit so many people on a weekly basis that it almost became second hat. The stories that tore my heart apart. I love listening to them all. Now as I visit and help my family as they suffer I die inside. I try to stay strong but it is the hardest thing I have ever had to do. I wonder if I can do it. I think I can but just as I think I can my heart aches and I have to break down. It makes no sense at all. Why do young people have to get so ill? Why for anyone? It's not fair. I continue to believe that he will get better with the chemo started and I pray for that a lot but it is what it is. Whatever happens will happen. We are helpless. Kind of like a standby in a film. You know how they have those people in films sitting at tables or walking by as the actual movie just moves along, that's how illness feels when you are watching. You're there but you're helpless. You can't really do anything but just stand or sit. There isn't a thing you can say to make a person feel better or stronger so that's what you do. You stand there or you sit there, in silence. You touch, smile and you love. You think you are doing and giving nothing but you are. Love. What more is there that is needed at a time like this? I don't think or believe much at all.

God Bless!


Tuesday, April 29, 2014

The Final Straw

We have heard all the crazy sayings before from the old days as my children would probably put it. The straw that broke the camels back. The frosting on the cake. I've reached the straw and the frosting part for one last time this past week. It is time I begin, after fifty years, to take back my life or maybe even start to live the life I never lived. You see, when I grew up it wasn't about you or so I was told over and over as I watched it be about my brothers time and time again. No wonder I grew up to be a people pleaser. If someone needed something who did they call? Yup, good ole Dianne she a sucker and will do anything you ask. I think something has to change.

Last week my eyes were opened and I decided it was time for me to take charge. I will no longer allow people to dictate to me how I should live or what I should do or what I should have done in any given situation to make their life easier. I pondered and stressed over this decision as most of my life the drama came from family who decided I owed them everything, even my soul. I have realized no I don't. If that makes me a bad person then I'm a bad person. I don't care anymore. I have read over and over, never push a loyal person to the point of where they no longer care. THERE! I don't!

I am sitting here right now and I must say it feels good to take my soul back and do what is right for me, for once. No longer being used for others to say or do anything they want to me without any consequences. Nope I'm done. This week starts a new me. The new me who will no longer allow people to treat me or my family like we are second hand trash, unless they need something. Talk about the phrase, "I have had it," Well for me it is more like "I HAVE HAD IT." Shouting it from a roof top. I will no longer allow any garage in my life. Family or otherwise. It's true what they say that eventually the crap catches up with you and the crap others have forked out over the years is coming to a complete halt. I will no longer be here for everyone when they decide I need to be. I will be hanging with the good people and doing for the good people who understand that life isn't only about them and their needs. I've never understood people like that anyways probably because I was always being told it wasn't about me. That kind of shit can mess a person up real good. I know it isn't about me and it never was about me that's not in my dna but there are times a person has to take that rest and pull back only to refresh and be ready to give more goodness to the world. Plus my health is fragile I cannot afford anymore stress to compound all that I live with on a daily basis. Funny part is the people who treat me the worst are the ones who think I have no health issues what so ever.

The takers are gone. It feels good. I'm never going back to the senseless drama others impose on me I have better things to do with my time. It is so strange because my heart almost feels like a ton of bricks have been lifted and thrown across a field. The weight on my shoulders of rude, selfish, people is gone. I am making a vow to myself to now longer allow them to even speak a word to me. My physical or mental health do not deserve it. I do not deserve. Sad it took me fifty one years to get to this point but I am finally here. I will reserve all my goodness for the people who can give me, at least a little bit of their, goodness back. I have a few of those people in my life and I am thankful for them. Even the friends I don't see often who always make me feel special when I see them never once being rude or taking advantage of my goodness. Why do we have to put up with the other kinds of people. Is it because they are family? Really? Family treating people like that? I think if some of our so called family were our friends we would have ran a long time ago so why do we stay? Some odd sort of obligation? I don't owe anyone anything anymore. It has gotten to that level. The sad part is when you delete people out of your life it comes with a price. There are the times you have to lose others that you don't want to lose because of the ones you need to lose. If you don't do it the insanity will never end. Life will always have that brick following behind you by a rope. You want to cut that rope so many times but you just can't. Then there finally comes the moment when you get the courage to cut it lose. The breaking point has arrived. You do it and it is a relief. I am there and as I always say, "It is what it is."

God Bless,


Friday, April 18, 2014


Funny how I always seem to read something that goes along with what my head was wrestling with the night before as I lay in bed. I have a love hate relationship with my middle of the night conversations that carry on in my head as trying to get back to sleep. There are times they can get so out of control I just have to get up and write them down or take a breather to bring myself back to some sort of relaxation point where I am able to slow it all down and go back to sleep. Easier said then done as an active brain can be torture at times but on the other hand can also help you in so many ways to try and figure all of life out. The past few weeks haven't helped much. We all know how it is when life hits you hard and you begin to think even more and ask all the why questions that you really shouldn't ask at all. So why do we do that? Ask all the questions? To make sense of certain things that happen to us that more than likely will never make any sense at all? I don't know. My ongoing struggle.

Today's early morning brain conversation began when I started thinking about someone who is thinking of looking for a new job. The uncertainty and the scariness of it all for this person. The rejection trying to find a new job might bring our way. It's funny how when we become comfortable we want to stay there but are we suppose to? I wondered. Wondered about the failure part of life. In jobs. In the world. With ourselves which might be the worst one of all. In our relationships. In our lives failure is there everyday. We can't hide from it and act like it doesn't exist because if we do we will never grow. If we don't step out of our comfort zone and reach for more why are we here? It isn't about a job or making more money it is about us. It is about getting to that place where we can tell ourselves I have done the best I can and now I will see what happens. If I don't get this job or someone doesn't like me that's okay because there is always tomorrow to try again. Life is funny like that because you always get a second chance no matter what your failures might be.

Relationships and friendships are proof. If you look back over your life you can see this first hand. You have had many different relationships over the years. Friends that came and went but they were there for a reason not as failure relationships but as relationship lessons. Your heart still holds a special place for many of those friends but life changed the circumstances of those friendships and you, or they, moved on. Is it a bad thing? Not at all. We must get to a place where we can just be okay with it all. We have all made stupid mistakes but we learned from them even in relationships. Embrace them they were there for a reason.

Ever since I have been ill I am able to look outside the box of life, as I would call it. I live it in a different light now so it is so easy for me to look out on others lives and see the hurt and how scared people really are especially of failure or maybe of life itself. We have to learn to cut that loose and give the world what it deserves, a piece of ourselves. We must quit being afraid of failure and look upon it as opportunity. Opportunity to give, opportunity to grow. You might try to do something and it doesn't work out but at least you tried. Your failure is just the next better opportunity waiting for you to find it. It seems life knows what we need before we know. We wait. We do the best we can with what we have and we must stop worrying about failing and being so hard on ourselves. It is sad our world has made us believe that if we are not #1 we are nothing. It isn't true we just have to start believing it so we can move on with our own dreams. Take the first step and believe in yourself even if the world doesn't. Let them eat you alive and come back even stronger than before.You can do it because failure is never real anyways!

God Bless!


Monday, April 14, 2014

It's Not What You Get It's What You Give.

It's not what you get it's what you give. 
I was lying in bed that night thinking about why a young man has to get cancer and trying to get the answers but as usual nothing came to mind. It is so hard to make sense of some of the things that happen to us and the people we care about. The dynamics of it all. When you are young you always think or even blurt out something like they were old so it was time. Is this true? The older I get the more and more I realize this isn't the case. We are still the same person the older we get just a little worn. Parts begin to break down and at times our bodies like to attack us for no good reason. I know for me as a Christian the simple answer is because of the garden and Adam and Eve making a wrong choice but why the heck do we all have to pay for their stupidity? Sin, that's why, I guess. It is is what it is. It isn't worth arguing about, it just is. The earth is plagued with it and it seems worse and worse as the years pass. I don't know the answer to all of it but I sure wish I did.

It's not what you get it's what you give. 
As I laid there last night worrying about Mike I also thought to myself about the bitter fact that when someone gets sick it affects so many people. The ripple effect. Mike's in the middle, the start of the ripple, and all around him are the people who love him suffering right along. Watching my husband suffering as his brother, best friend, and right hand man is ill. I thought about that and how love has a way of ripping your heart out of your chest and at times there isn't much you can do about it except hurt. But then, just as the sadness was there the light was also shinning so bright. The light of love. Love from those around you and from those with whom you would never expect a thing from. My sister in laws mother who battled lung cancer talking to Mike and his wife. The friend from church who has battled lung cancer and has taken the time to reach out even when her pain is still so raw from her cancer journey. The people at work ready to step up and help Rich to fill in the gap of Mike's absence. Means so much to Rich. The goodness that surrounds you that you don't know is there until something bad happens. We all must use what happens to us to make the world a better place and so many people do. Thankful! I must admit just when something happens to make me never want to leave the house again God once again takes the reins and shows me the goodness. I begin to look back on the bad experiences I may have had out in the world and it sort of makes me giggle. Stupid people driving and whipping me off? Seriously? My brother in law has cancer, and I hate to say it, but the sinner in me yelled asshole to the driver. Sinner! Yup! I'm at the front of the line on that one. I always say when I meet the Lord I am going to ask him why would you want me here? I am one of the worst sinners of all. Then I remember oh ya the cross. It's pretty cut and dry for a Christian the hard part is living it without becoming one of them, the guy who whipped me off, or me the one who called him an asshole and me who wanted to go follow him and give him a piece of my mind. I lay my body at the cross and ask for the forgiveness I surely do not deserve. Pretty sure I'll do it again and again and again.

I thought about chronic illness and how this all intertwines. I began to think about the worst diagnosis ever, cancer, and how everyone goes into save mode. It's like the person diagnosed is dead before anything has even been discussed. Curious to me but it is human nature. I thought about the chronic illness diagnosis and how we hide it because we know people are going to say things like, oh you have arthritis welcome to the club we all do its part of aging and the other stupid comments people make. I believe we must learn to put ourselves in the place of the ill no matter what they are suffering from. Compassion. Empathy. Chronic illness doesn't carry a death sentence to most people so why do they care? Cancer, now that is a different story. It is so sad because I know of people right now who are fighting for their lives because of autoimmune diseases. How can we look down on that suffering as being in a different category? I struggle with this everyday as I pull farther and farther away from people because they don't want to hear it. Sad but true. 

In the end it is not about illness it is about people. Cancer, autoimmune, heart disease, or any other diseases people are dealing with that might be attacking their body. We must love, care, and give. Give out a piece of our heart as those are doing right now for Mike in his time of need. It doesn't have to be much it can be a thought, a prayer, a meal, a gift card, a listening ear or should I say an understanding ear,not a judging ear. Whatever it is you have to give just give it. People will be touched by your outpouring of love and who knows it might help them make sense of what is happening to them as they struggle and I can guarantee you will learn something too. Like I always say, you cannot help everyone but you can help someone. Believe in someone. The lonely. The old. The suffering. Why else are we here?

God Bless!


Wednesday, April 9, 2014

When The Storms of Life Hit

Our family has had a week that has been somewhat of a roller coaster ride when it comes to health issues. Last week Addi, my brother and Rich's brother all had health issue. I am happy and relieved to report that both Addi and my brother are recovering well. It is such a relief when the people closest to your heart make it through health issues when you really have no idea how they be after the surgeries or hospitalizations. We worry and fret over all of it but we are thankful this week for Addi and Dave feeling better.

Last week at the same time Rich's brother was having issues with a cough which they thought was a lung infection but we received not such good news yesterday as he/we found out what they thought was a lung infection turned out to be cancer. Yesterday was the brick day. You know those days? You are slammed down with something and it just feels like a brick hit you square in the face. You are swimming in your thoughts, the thoughts you cannot control. The bad thoughts that try to take over and tell you the worst case scenario. I always wonder why we go to that place first. Human nature? It really makes no sense what so ever but for some reason we do it. Is it because of all the hurts we have had in the past and for some reason it is so much easier to do the crap self talk over the self talk of hope and love? Personally after the almost eight years of being ill and never knowing what is going to happen from day to day I have learned to do more of the hope and love talk.  I have learned if I don't I will be eaten alive by the crap. I must cloud out that garbage and remember there is still good in so many situations even when I think of only the bad.
In all honesty? If you know Rich's brother, Mike, at all you know he is as bullheaded as they come. A true fighter. If anyone will kick some cancers ass it will be him. It is a scary unknown road ahead for all and the plan of life will be altered for some time. How long? Who knows. I guess that isn't up to us. The way I see it is if we still have air coming into our lungs we are here for a reason. To live life, ill or not. People get cancer everyday and people beat cancer everyday. I recall reading quite a few years back that more that 90% of those who are diagnosed with cancer beat it. Those odds are odds of hope, not despair. I have also learned and witnessed what cancer does to people. It is really amazing. Relationships become stronger in many instances. Happy times become even more joyful even in the midst of treatments. Love. Yes, love. It is heavy in the room when you are with a cancer patient and their families or even a survivor. Cancer changes not only the person with it but those who surround them and love them. It is a lesson of sorts maybe that we don't take everything for granted. I know I do. I always assume Rich is just going to be there but in an instant that can change. We live life like that when things are normal and not rocky. If the boat isn't being rocked then we just live in some sort of a cloud. We complain about the absolute stupidest things that really mean nothing at all. We get depressed if we don't have something we want or if we can't do something instead of enjoying the moment and really truly loving those around us. I am guilty I know that. I could go on and on but I will save more for later brain overload as I try to process all of this.

We go on from here and take it one day at a time but most of all we keep the HOPE!

God Bless!


Thursday, April 3, 2014

Illness. What a Stupid Word or is it?

Illness. One of those words in the English language that make me cringe. Like the word capacity, oh how I hate that word, so of course Richie lovessss to say it to me whenever he gets the chance. I have no idea why that word makes me cringe it just does I even hate writing it here plus it's not like I would ever use such a big word. It is like nails on a chalkboard for me but the illness word, well, that is even worse. I can't say that the word illness makes me cringe because of myself but more when I hear it with another persons name attached to it. It seems we have been hearing of someone being ill a lot lately. My bro had double hernia surgery, Rich's bro brother has pneumonia and is in the hospital, but dare I say at the risk of sounding really slefish the worst of all is our dear sweet Addison having to have a mass removed from her neck. Let me explain.Yes, I hate hearing when any family member or friend is ill but a child? I know as adults we can all learn something from our struggles but a child? What does a child learn from being ill or having to have a surgery? It feels like when it rains it pours and the past two days have been no different. Then as I sit and ponder on Addi I wonder is the lesson meant for her or for us as adults? I can't imagine it is for her or us. How is a child suppose to learn a lesson when they can't even process what is happening to them? How is a grown adult suppose to handle seeing a child suffer? I will never forget her when she got home yesterday and how she showed me her hand where the IV had been. She just looked at me with her sweet innocent face and pointed to her hand, no words coming from her lips. I tried to make it like she was a rock star but my heart sank as her face was looking at me as if she wondered what just happened to her and why. Then she proceeded to point to her neck, which was wrapped full circle in coban with the stitches below, there again not saying a word just putting her little pointer finger on the spot where I assume the incision was, she pointed softly up and down on her neck. How traumatic for a child. How traumatic for her mother. How traumatic for her father who is a thousand miles away for six months on a training mission for the air force. It wasn't an easy day for any of us but we made it through with lots of love and prayers. I told Katie these are the times it is true how important it is to stay close to one another so you can just be there. I am thankful beyond words we have that bond!

When I think back to when our children were ill I remember feeling ill the whole time they were sick but I never had to face anything like they're family did yesterday. I think and truly believe when you are young your reality of life is overshadowed by busyness and the fact that truthfully not that many bad things have happened in your life for you to realize how fragile it really is. Probably a really good thing it is like that or we would never make it as parents. Then I think of the parents who have to face a cancer diagnosis or other disease with a child. How in the world do they do that? We could never know until we face something ourselves how hard and unimaginable it might be. You can never imagine anything until you go through it yourself.

Today we are thankful. Thankful both brothers are being taken care of and on the road to recovery. Thankful for Addi getting through surgery. Thankful for realizing how very fortunate we all are even when we face something that scares the hell out of all of us. We love and we move on from here. Surely more tragedies will plague our family, and I assume yours, but we deal with them as they come. We say the dreaded illness word and do what we have to do to take care of the illness whatever it might be at the time. In the end you begin to think about that word, illness, and you learn that it may be awful ,it maybe scary, but it is also love. It brings you even closer together than you thought it would before it hit. It makes you love even deeper and support those who need it. When you are in the middle of the dreaded word it's awful but in the end you see you are even more blessed then you ever thought possible.

God Bless!


Saturday, March 29, 2014

Mental Stress and Chronic Illness

"Keeping mental stress to a minimum is so important for the chronically ill. It’s important, but often impossible. Why? Because we live in the same stressful world that healthy people live in."

One of my facebook friends has a page called Rheumatoid Arthritis Support and for some reason there was an article in my news feed today about stress and chronic illness but she had this quote written above the article which I assume she wrote. Reading this it was like a ton of bricks fell on my head. Truthfully I never thought of stress like that before. I thought about it and I thought to myself that I always felt so different than the healthy world and I could never be like the healthy world. Myself or anyone else who is chronically ill can probably associate what I am writing without having to explain it. I'm pretty sure the healthy world cannot make any sort of connection to this at all. Well, unless they may have been ill at some point in there life and can remember back to how different life was at that point in time, now imagine living that way everyday and trying to fit into the world. It's damn hard. You fake your way through. It's funny because I am sure most people look at me and think there is no way she isn't "normal." I laugh. I take care of myself. I run around to store for things when I have the energy. I try to live like the rest of the world but it isn't easy living and having to be an actor when you see people. 

The stress part. Wow! This is another area I never thought about because I always thought most of my stress was from the illness, which it was/is, but now as I think back I had/have many of the same stresses most of the world has. How can that be? I don't work and I know most people wonder what in the world I could do all day at my age without a job or anything else to do for that matter. Let me tell you this is where my stress is a little different. I don't understand work stress as you do but you also do not understand my stress as a chronically ill person. Plans come and go. I stress and wonder will I have the energy to go? The amount of energy it takes to socialize is exhausting to say the least to the chronically ill. I can go somewhere and within an hour or so, depending on how many people I talk to, I am ready to leave. Tired/fatigued as I watch the rest of the room party and keep going without a clue as to what I am going through. It is horrible to say the least. The realization that I have finally come to grips without feeling guilty about leaving early is freeing and causes me much less stress. I have learned not to care anymore. I do what I can do and I am honest about the things I can't. It is a way of life for me now, for us. Rich included. This part of the stress is hardest for me because Rich is a very social person and the stress of weighing him down wears on me. He never says a thing and is always ready to do whatever he has to for me but for me it isn't fair for him. I wonder if that is a stress I will ever get over?

I have come a long way baby! I know the not caring comes with age but with chronic illness it is different. It is just as much an inside job as an outside job. The realization hit me this morning that I am doing a much better job with each passing year accepting it is what it is and it is OKAY! Man, it feels good to write that and really mean it!

God Bless!


Tuesday, March 25, 2014

It's an Inside Job

Here we are pretty much in the same state of affairs as we were when we first moved into Steph and Vinnie's house. It is going really well and I am thankful for the closeness we can share, not only in the space we live in, but in our hearts. I'm not sure how many kids would allow their parents to take over their basement, a bedroom, bath, and at times their kitchen. I'm not sure if I could do it as I like my space so for that reason I feel like we are intruding while Steph and Vinnie assure me we aren't. I even went so far as to look for an apartment for this very reason. Truthfully? I miss having a kitchen it is where a wife/mother spends 90% of her life, at least in our home. Then I wonder to myself would getting an apartment be more for me or for the reason I am feeling like an intruder. I never thought not having a kitchen would be that big of a deal but it is. I never thought be somewhat homeless would be so hard and dare I say almost depressing but it is. I feel like I am in the bottom of a pit stuck and unable to find my way out. We have been here for almost three months now and we were hoping by now we would have at least started on building our home. The weather here in Michigan has been brutal this year to say the least so being able to dig a hole for a basement is impossible. There's a lesson in all of this...right?
We are beginning to see a little light at the end of that tunnel and feel breaking ground might begin here in a month or less? It also depends on the load limits on the roads. With the ground becoming warmer there are weight restrictions as to how much weight a truck can haul so in turn the building supplies halted not only for us but many others. I wonder to myself how many other people building are living in a basement? Pretty sure not many.

I started a so called diet but I really want to say a new way of living. This time is it. I am not going to lose it only to gain it back once again. Change. Who likes it? I already feel like I am so unstable living in limbo. I feel stripped of all the "things" that matter to me. Oh believe me it's not much but "things" none the same. The things I miss are the art the grand kids made or something special one of the kids gave me as a gift.  You know the "things" that you look at that make you smile and in an instant you can remember who it was from and when and why they gave it to you. Those are the "things" I live for. I do have a large picture of the kids here that they gave us at Christmas a few years back. It hangs in the bedroom by the computer so I can look at it everyday and remember the moment they gave it to me. I had no idea what so ever they had it taken of course the tears came. I love that memory. I love those people. They keep me going. The text I just got from Steph telling me when we lose weight we are both going on a shopping spree. Time together that has nothing to do with clothes. Moments in time we can never get back. I thought not having a place to call our own would be the hardest part mentally for me but now that I started this weight loss journey I think my worst enemy is my mind. You begin to filter more than just not having a place to call your own. You begin to go internally and pick yourself apart and at times others and past life circumstances. All the mindless eating I did in the past that covered up past hurts or past relationships that will never be mended. Life is what it is. I don't think we will really ever have it all figured out but someday, just maybe, we will. All of this piled on top of pain that never ends. Fatigue that is unbearable to say the least. It's a wonder a person can stay sane but I will. Did it before I'll do it again. I do believe it is in you all along it's just that sometimes you forget it and you have to be knocked back down in order to get back up.

In the end I don't think a diet is going to make my life perfect in fact I know it won't. I've been here before, lost, and still felt like a fatty. It's all internal. It's all about the goodness we leave wherever our feet might land even if we don't get it back in return. It's trying to be nice to the people in your life who make it very difficult to be nice. It's being kind to the lady in the store who makes some snide remark for some reason you will never understand. You smile and you move on. I am learning more and more with each passing day that most of the people who treat you like you are a nobody really are not happy with themselves. It really does have nothing to do with you. You live your life the way you want. No one has the power to dictate how you live or how you don't live. So, as I strive to be more healthy it isn't only an outside job it is an inside job. A job that only I can do and I will do. As Jim Carrey says in The Mast movie, "Somebody stop me." I'm not letting it happen! You?

God Bless!


Tuesday, March 18, 2014

Wake Up Call

L'Wren Scott. Does that name mean anything to you? Tom, Dick and Harry. Do those names mean anything to you? I watched the morning news this morning as they reported on the suicide death of L'Wren Scott. I had no idea who she was until last night when I heard she committed suicide. Apparently she was a designer so it is no surprise I had no idea who she was. The news reported of the suicide as a hanging on a door knob, who knows if that is true because you have to take everything the media reports with a grain of salt, either way she died a senseless death. They also said she may have been six million dollars in debt and didn't know if that could be one of the reason she thought death was the answer to ending her financial problems. I thought to myself how can money do that to a person but when you live a mediocre life you more than likely will never be able to figure that one out. Money to me is not that big of a deal food, shelter, a few extras is enough. I always wonder about the lives of the rich how things and trips and all the stuff that they think makes them happy really does. Then this happens. I wonder if she searched through her short life with money trying to buy the happiness when she had it all in the palm of her hand already. I wonder why she never stopped to realize it. Mick Jagger was her boyfriend. He has money, so I think. Why didn't she go to him and ask him to help her? Or even better why didn't she go to him and tell him she was struggling? Why do we hide our pain? The media also reported what a wonderful, kind person she was. Everyone said she was so gracious and giving which also led me to think of how we can fool everyone around us. How many people do we come across each and everyday that are suffering in silence? Do we ever take that minute to ask how someone is really doing? Do we ever read between the lines and ask, "Are you sure?" Nah we don't, we are too busy for that. You know what I mean. Just like the people whom I have heard say, "I saw her in the store but avoided her." Hummm really? Are we in such a sad state of affairs that we can't take a minute to care about someone? We don't have to fix them but we can listen. It isn't that hard. I wonder about all of L'Wren's friends who are telling the media she was so kind and seemed happy. I wonder if they ever took that extra minute after asking her how she was and gave her the chance to say, "NO I'M NOT FINE! LIFE SUCKS RIGHT NOW AND I DON"T KNOW WHAT TO DO ABOUT IT." Just that simple extra five minutes or an hour off someones busy selfish schedule may have saved her life. 

In all honesty I can write this because I know what it is to be the person that gets asked, "How are you doing?" I am the person who says, "fine," because I know people don't care. Brutally honest? Yup that's me. You see, when you are on the inside looking out at life you can be brutally honest. It feels like I live in my own little world while the rest of the world is out there living in that great big world. People looking in at me like the boy in the plastic bubble. Do people care? Yes, but it is a surface care. I'm not complaining at all it is fine. I have Rich he is my rock. A few close friends I know I can go to but who wants to bother them with my stupid stuff? In all honesty I may know how L'Wren felt just different circumstances and I'm pretty sure she felt the same way, who wants to hear about my stupid problems? 
The whole point of writing this is not to help people understand how it is to be sick, physically and mentally, in a healthy world but to hopefully help people realize even the healthy looking people suffer. Take a minute, a second. Don't be the person who is talking after a suicide saying what a nice person someone was. Watch their body language, look in their eyes. You can see a lot of pain in someones eyes if you look close enough. We don't do these things enough. We are a world that has become to busy to care. Too busy checking our cell phones. Too busy being busy doing nothing. It's absolutely crazy. It's like a madness that needs to stop. If anything I hope this is some sort of wake up call to all who read it. I hope if there is someone around you today, tomorrow, this week or whenever, you are the one. The one who can read between the lines and save someones life because I know you can!

God Bless!