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!