SSSSSHHHHHHHhhhhhhhhheeeeeeeeeewwwwwwwwww. Ah! I made it through another doctor's appointment! You have no idea what a huge relief that is for me. It is like letting the air out of an over inflated tire, ya it feels as good as that sounds, the sound coming out of my mouth of course. Free and clear for another three months, or so I hope!
I would never be the one to complain about doctors especially at this time in my life. Bahaha good one, of course I have complained about doctors who am I trying to kid here. With that being said, I have some pretty amazing Doc's taking care of me at this time and I thank the Lord for them everyday. Today I saw, Dr. Jolene Key, my Rheumatologist and she is always such a joy. I have never had a doctor who was so through and detailed about my health issues in all my life. She asks questions I would never think were related to Arthritis, none the less she does, and they are. I feel like I am a team player with her instead of just another bench warmer. She always respects me, ask what I think, and throws a few jokes in there and there. Today it was, "Don't you think last Saturday four drinks was too many for your liver, remember what we talked about last time?" How the heck does she remember what we talked about the last time? I do remember, two drinks per week, max, but how she could remember that with all the patients she see's? So of course at the end, when we were almost done I asked her if she was going to have a few when she got home since I was on her appointment roster today. She laughed and said, "YES!" We always joke about me because I am such a difficult case, as she puts it. Oh well, my goal in life to be difficult and hard to figure out, with everyone else that is fine, not so much with your doctors.
Then, there is tragedy that strikes once in a while in the life of being a patient. One of your prized Doctors decides to take another position in another city. This time my favorite Dr. Kevin Hayes, whom I developed more of a friendship with then a doctor patient relationship has jumped ship on me, threw me into the ocean to drown without a life jacket. Of course, I am just kidding there. I am very happy for him as he moves to Lansing to begin a new practice, but geeze Dr Hayes what the heck am I gonna do with my neck and hip now? Did you ever think of that when you were making your decision? I mean really, like I always say it is all about me, isn't it? LOL!
Dr. Hayes is my Osteopathic Manipulation Medicine/Therapy doc. Whoopsies there I go, was, not is. He made me laugh, really laugh, he made me realize not all doctors are jerks, he helped me realize I need to take care of this body I have with all his little tips. I would see him in horrible pain and walk out feeling better. He is also the doctor who helped me get my cervical spine fused. I am indebted to him forever. If not for him I am convinced I would still be living in excruciating pain with a very screwed up neck. He taught me well, but I still do not want to have to find another OMM doc. So, if you read this Dr. Hayes, come back to where you belong, would ya?
It is extremely hard to find another doc for anything when you live with chronic illness and many other chronic medical conditions. The first time I go with my history and meds list they ALL look at me like I have four eyes, a purple nose, and red lips. Oh wait I do have red lips, whoops! Really I think I have the word hypochondriac written across my forehead sometimes. Unlike Dr Key or Dr Hayes the new doctors have not not had the pleasure, or maybe the curse, of getting to know me as a person and find out that I am a happy, well adjusted, educated person, and no I DO NOT LIKE GOING TO THE DOCTOR and would prefer to avoid them at all cost. But I realize I do need them to live a somewhat normal existance.
So for now I press on hoping I do not need a doctor for a while, trying not to worry about it, but also knowing in the back of my mind I will, and that is ok. Just ok.
May God Bless each and everyone of you who read this, he sure has blessed me!
Dianne
Wednesday, August 31, 2011
Monday, August 29, 2011
I've Got A Monkey On My Back
I have heard the phrase, I've got a monkey on my back, and always have thought to myself that sure cannot be a good thing Well, over the past 5 years I have had a monkey on my back and have to disagree with the idea that it isn't always a good thing.
My monkey is small and white and he hangs around every morning as soon as I get. I have a love/hate relationship with my monkey. My monkey causes me many little annoyances throughout the day.
He causes me to have CRS and most of you know what that stands for, lets just say the memory is pretty much a thing of the past. How many times I say to someone, "You never told me that," only to hear, "I just told you that five minutes ago." "Oh sorry!
He also causes me hot flashes which, yes I blame on him because I am just way to young for the other culprit, menopause. (Ya, I know it is the M word, I just don't need another thing to deal with.)
He also causes me to bruise very easily. If I go out in a dress or on the rare occasion shorts, it looks like I have been in a fight or abused by someone.
My monkey can cause me to come unglued in an instant over the stupidest little thing. Someone may look at me crossways and I will ask them, "What is your problem?" To tell you the truth there are times I even scare myself, like when I do something stupid and want to grab myself around the neck. This is where I feel bad for my family. "Who did this, who did that?" After I say something really bitchy I will ask, "Did that sound mean?" The answer is usually, "Ahhh ya!" Then I just laugh. So word of warning, if you see me in public run! Fast!
My monkey causes my face to swell to the size of a watermelon or better yet a basketball. This really annoys the heck out of me, so avoiding the mirror is a daily ritual. I take a shower, put on my makeup, and get out of the bathroom as fast as possible.
The worst side effect of having this monkey on my back is the hunger. The bottomless pit that cannot be filled. I try my best to keep this part of my monkey occupied so I don't become the Good Year Blimp but there are days I just have to give in. I have learned, do not keep high calorie foods or much food in the house for that matter. One time I was at the doctor and there was a candy dish with M&M's in it. We had just discussed my hunger issues and he asked if I wanted some M&M's and he just smirked. I said, "I probably better not because I might eat the dish too." Seriously, this IS how bad it gets.
One of the ways I have learned to tame this hunger issue is coffee. If I get hungry I make myself a cup, although I am pretty sure the 1/2 cup of powder cream and the few packets of Splenda and tsp of regular sugar are not real good for my health. Since my monkey returned to my life my taste buds have also withered away, actually this has been an issue for the past five years. Most foods taste like cardboard anyways so that makes it even harder to find the "right" thing to eat. I find the only things I can taste are very strong flavors, Italian foods, salty or sweet items. Now, you would think if you can't taste why eat? Well, that is good question I do not have the answer to. I will say, I am one of the fortunate people who take the monkey but do not gain weight on it, as most people do, so I am thankful for that!
I know my monkey sounds really bad but my monkey, for me, is a lifesaver. When I take the monkey I am able to live, not like everyone else, but able to function and enjoy my small life.
Last March I was able to go back on my monkey. I had to be off it for a while in order to have my Cervical Spine fused. This past March I was able to get back on the monkey and it took until the middle to end of July to FINALLY figure out what dose helps me. It is like a roller coaster ride, as my husband puts it, trying to figure out what dose if right.
My monkey allows me to read and see better! This can still improve but before the monkey reading was next to impossible. It also helps my right eye to stay up where it is suppose to be. Without the monkey my eye can droop so low that all I see are eyelashes, another minor annoyance.
My monkey keeps my pain at bay, without it I can be in horrible pain and chronic pain is just plain exhausting. My monkey helps me to be able to get out of bed in the morning with less stiffness, although it still takes me time to get moving it is much better than when I am off the monkey.
My monkey helps my fatigue and gives me enough energy to do more things everyday. I am much stronger and able to get out alone more often.
My monkey helps my muscles work better. I am able to do more physical work without have the muscle weakness I usually experience. Oh it is still there just not as bad.
I wish I could put my monkey in the jungle where he belongs to roam freely but if I do that I won't be able to wonder freely. So for now my monkey remains in a bottle on my counter waiting for me every morning greeting my blurry eyes and calling out my name.
I know the monkey is sucking the life out of my bones, may cause diabetes, and other serious medical problems but I am willing to take that chance, others are not. We all must make that choice as to what is right for us. For me, without the monkey, I am worthless to say the least. My doctors and I have come to realize I AM one of those patients who needs the monkey. None of us are thrilled about that fact, but it is just the way it is for my case. Who is my monkey? Prednisone and for now we will remain friends as much as I love to hate him.
May God Bless your day! Always remember God is good even when things are bad!
Dianne
My monkey is small and white and he hangs around every morning as soon as I get. I have a love/hate relationship with my monkey. My monkey causes me many little annoyances throughout the day.
He causes me to have CRS and most of you know what that stands for, lets just say the memory is pretty much a thing of the past. How many times I say to someone, "You never told me that," only to hear, "I just told you that five minutes ago." "Oh sorry!
He also causes me hot flashes which, yes I blame on him because I am just way to young for the other culprit, menopause. (Ya, I know it is the M word, I just don't need another thing to deal with.)
He also causes me to bruise very easily. If I go out in a dress or on the rare occasion shorts, it looks like I have been in a fight or abused by someone.
My monkey can cause me to come unglued in an instant over the stupidest little thing. Someone may look at me crossways and I will ask them, "What is your problem?" To tell you the truth there are times I even scare myself, like when I do something stupid and want to grab myself around the neck. This is where I feel bad for my family. "Who did this, who did that?" After I say something really bitchy I will ask, "Did that sound mean?" The answer is usually, "Ahhh ya!" Then I just laugh. So word of warning, if you see me in public run! Fast!
My monkey causes my face to swell to the size of a watermelon or better yet a basketball. This really annoys the heck out of me, so avoiding the mirror is a daily ritual. I take a shower, put on my makeup, and get out of the bathroom as fast as possible.
The worst side effect of having this monkey on my back is the hunger. The bottomless pit that cannot be filled. I try my best to keep this part of my monkey occupied so I don't become the Good Year Blimp but there are days I just have to give in. I have learned, do not keep high calorie foods or much food in the house for that matter. One time I was at the doctor and there was a candy dish with M&M's in it. We had just discussed my hunger issues and he asked if I wanted some M&M's and he just smirked. I said, "I probably better not because I might eat the dish too." Seriously, this IS how bad it gets.
One of the ways I have learned to tame this hunger issue is coffee. If I get hungry I make myself a cup, although I am pretty sure the 1/2 cup of powder cream and the few packets of Splenda and tsp of regular sugar are not real good for my health. Since my monkey returned to my life my taste buds have also withered away, actually this has been an issue for the past five years. Most foods taste like cardboard anyways so that makes it even harder to find the "right" thing to eat. I find the only things I can taste are very strong flavors, Italian foods, salty or sweet items. Now, you would think if you can't taste why eat? Well, that is good question I do not have the answer to. I will say, I am one of the fortunate people who take the monkey but do not gain weight on it, as most people do, so I am thankful for that!
I know my monkey sounds really bad but my monkey, for me, is a lifesaver. When I take the monkey I am able to live, not like everyone else, but able to function and enjoy my small life.
Last March I was able to go back on my monkey. I had to be off it for a while in order to have my Cervical Spine fused. This past March I was able to get back on the monkey and it took until the middle to end of July to FINALLY figure out what dose helps me. It is like a roller coaster ride, as my husband puts it, trying to figure out what dose if right.
My monkey allows me to read and see better! This can still improve but before the monkey reading was next to impossible. It also helps my right eye to stay up where it is suppose to be. Without the monkey my eye can droop so low that all I see are eyelashes, another minor annoyance.
My monkey keeps my pain at bay, without it I can be in horrible pain and chronic pain is just plain exhausting. My monkey helps me to be able to get out of bed in the morning with less stiffness, although it still takes me time to get moving it is much better than when I am off the monkey.
My monkey helps my fatigue and gives me enough energy to do more things everyday. I am much stronger and able to get out alone more often.
My monkey helps my muscles work better. I am able to do more physical work without have the muscle weakness I usually experience. Oh it is still there just not as bad.
I wish I could put my monkey in the jungle where he belongs to roam freely but if I do that I won't be able to wonder freely. So for now my monkey remains in a bottle on my counter waiting for me every morning greeting my blurry eyes and calling out my name.
I know the monkey is sucking the life out of my bones, may cause diabetes, and other serious medical problems but I am willing to take that chance, others are not. We all must make that choice as to what is right for us. For me, without the monkey, I am worthless to say the least. My doctors and I have come to realize I AM one of those patients who needs the monkey. None of us are thrilled about that fact, but it is just the way it is for my case. Who is my monkey? Prednisone and for now we will remain friends as much as I love to hate him.
May God Bless your day! Always remember God is good even when things are bad!
Dianne
Wednesday, August 24, 2011
Preparing for the Worst That Usually Ends Up Being The Best
Then the week before the appointment hits and the reality sets in, which happens to be today, well the reality and the fear set in. It can be any number of things my mind decides to make up. Is this the time she is going to tell me she can't help me anymore? Is this the time she is going to give up on me? Is the this time she is going to tell me to lose weight because that is half my problem? Is this the time she is going to tell me I am too lazy and I need to get more exercise, when I do the best I can with that? Is this the time she will do the blood work and my liver will be affected? Is this the time I am going to go over the deep end and need to be committed because of all the stupid messages my mind has to send me? Is this the time? Question after question, thought after thought, so annoying.
But then again there are the good thoughts I must focus on. The thoughts that I MUST focus on for the goodness and wellness of my body, mind, and spirit. The thoughts that tell me these things I am thinking are all nonsense. Pure nonsense! The knowing that every time I have the pleasure of seeing Dr Key she is nothing more that respectable towards me. Remembering that she treats me with care and compassion and understanding for all I must live with on a daily basis, never once giving me any negative feedback from all the information in my "love note." She is always willing to help me in any way she can even if we do not change the meds I take. Or if we do change them she is always concerned and asks me, What do you want to do?" It is comfort to know you have a doctor who is on your side and is willing to work with you instead of against you. Just writing this today has helped me to start to deal with the week ahead. The week of fear. Knowing that next Wednesday evening I will be saying to my self, "Why did you get so worked up about that?"
God Bless all of you who struggle. There really is good that comes out of the bad you live with on a daily basis!
Dianne
Monday, August 22, 2011
The Don'ts Of Chronic Illness
Being Chronically Ill is not easy. I have been feeling better over the past month or so I feel good about sharing some of the things that go through my head on a daily basis. Things that no one else could understand unless they were in my shoes for a day, a week, or a month. I often wish that it was possible for people to do just that so they could get it. I really do understand that people do not understand but sometimes it is really hard for me and I just want to say shut up or more often just leave me alone. This is when I isolate myself from people. I can try to educate but many people do not listen or care to hear about what I/We live with on a daily basis. I can tell the same person over and over and it is like they just don't listen so it is easier to just live in my own little world with my family, the ones who really understand. They get it because they see it, they live it. They watch me go from doing ok and in a split second having to sit down or lay down because I just get weak or ill. Our life is lived day by day, minute by minute. We just recently started making future plans because I am feeling somewhat better. That being said, this does not mean we will be able to fulfill our plans depending on how I feel that day but we have made them none the less. So here is my Don't list for all of you. I am sure I will be adding to this list as time goes on.
Don't assume I am just like you because I look good. Looking good for me on some days takes quite a while. On other days maybe not so long. When someone tells me I look good I cringe and think to myself, so you are thinking I can't be sick because I look good?
Don't think that when you ask me how I am doing and I say fine, that I am. Fine for me means I am here talking to you and it is sucking the energy out my core. I never gave it a second thought, when I was healthy, as to how much energy your body uses to just talk or listen, really listen to someone.
Don't treat people rudely when you are out in public you never know if they may be dealing with a chronic illness. I maybe the one you cut in front of or pushed out of your way. One wrong step or fall can put me in pain or down for days. Many times when I am shopping I am leaning on the cart so it will hold me up. I may get to the check out and have a horrible time even putting the few items I get on the belt. Be aware of your surrounding. Help someone if you think they are having problems. When I am at that point if someone asked me if they could even load my car I would be thrilled. I hate to always have to wait to shop with Rich. He works very hard and I feel horrible when I have to ask him to do one more thing. He sacrifices so much for me/us already.
Don't just stop over when it is convenient for you. I may be having a hard day and having company is exhausting for me. Call first! Of course family is exempt from this one!
Don't tell me you have a miracle cure for me. I have really terrific doctors who take very good care of me. They have helped to go from a person who could hardly move to a person who can now enjoy her family and others if there is enough energy to do so. My family has become my first priority and if I have energy left you may get me if not I'm sorry. I surely don't need you telling me a vitamin will make me feel better.
If we do make it out to a party please understand I do not have the energy to talk to everyone. It would be much appreciated if you would come up to me and say hi instead of me having to come up to you. It takes a lot of physical energy for me to come to you.
Don't stop inviting me to your get togethers. Just because I couldn't make it the last time or the time before that doesn't mean I can't make it this time. This is sad to me because this does happen. People just kind of give up on you or take it personally when you can't meet with them. It has nothing to do with them. I wish more people could understand this.
Don't assume that if I just get out more I will feel better. I won't! Going out, even for lunch, takes all my energy for the day, energy I may need to cook dinner or do laundry.
Don't assume because I don't work I probably don't do anything. Taking care of myself is a full time job in itself. I am fortunate to watch my grandchildren and they understand when Nana says, "I have to rest." Sometimes kids understand much better than adults. Plus, they love me unconditionally and don't tell me what I need to do. They just say, OK Nana, I love you!"
Don't treat me like you are going to catch what I have if you happen to see me out in public. I need to know you are happy to see me just as much as I am happy to see you. I am not contagious, if I were I wouldn't be out. In the same regard if you are ill please tell me so I can avoid you as all the drugs I take lower my immune system and I cannot fight off illness like you can. A common cold for you can kill me.
Don't assume I don't need you to care. I do. It can be very lonely and scary on the days I am really sick. Love and prayers are what help me through my days.
Don't assume this chronic illness business is only mine. My husband, Children, Grandchildren and Parents all suffer from this. Rich probably the most as he is my primary caregiver. This is the other side of chronic illness people do not talk about. Chronic Illness IS a family affair.
Don't assume that just because I am sick I do not have a good life. I believe everything happens for a reason and for me this is what I have been handed and I do the best I can do with it. I have a very good life and God has been very good to me. He gave me the best people in the world to take care of me and for that I am grateful!
Don't think that I am making any of this up. Why anyone would ever make up being sick is beyond me. I try to avoid doctors at all costs. I have even begun to let some tests I should be having on a yearly basis go because I just don't care anymore. It is another full time job preparing for doctors appointments and stressing about them. It is no fun!
Don't think that I do not think of my own death. I do. I am ready to go. I know many think that is awful to say and if I was healthy I would probably think the same thing. I'm not healthy so to me it will be such a freeing to me to get out of this body and be in heaven!
Don't compare your health issues to mine. If you ask how I am doing and I say I a tired don't say, "Oh I know I am tired too." You have no idea what I am talking about when I say tired or fatigued. My fatigue is a fatigue that radiates from the bones. It is very hard to explain. Think of the flu and times it by ten. It is even worse that that. Or imagine holding a 25 weight in both hands over your head for a long time until you can no longer hold them up. The tired you feel after doing that is how I feel all the time. Right now I really need to clean my house. I have good intentions. My head is saying I will do it all. Then, I will start. I will sweep the floor and have to rest. Believe me, my head wants to do it all but now my body controls my day. It is heartbreaking for me. I use to be wonder woman now I feel worthless because I can hardly hold my head up for too long without resting it on the chair or with my hand.
Don't call my house before 9am at the earliest! Or after 9pm. Sleep for me is huge! If I do not get 9-10 hours a night my symptoms are worse. I appreciate no calls more than you could ever imagine. I am not going to answer anyways because by the time I try to fumble for the phone and it falls out of my hand the call gets lost anyways. Plus at this point my brain is trying to process making my body be able to move and it cannot handle a conversation anyways.
The last don't: Don't think that I am writing any of this for pity or to be mean. It is just my life. I have found I am the only one who can take control of it. No one else is going to enforce all of these don'ts for me. I must. That is why I share them with you. I hope they not only help you when it comes to me but help you if you are dealing with chronic illness. Or they help you if you know of someone living with chronic illness. If they do not apply to you now, take note because someday they probably will.
May God Bless You and Your Day!
Dianne
Don't assume I am just like you because I look good. Looking good for me on some days takes quite a while. On other days maybe not so long. When someone tells me I look good I cringe and think to myself, so you are thinking I can't be sick because I look good?
Don't think that when you ask me how I am doing and I say fine, that I am. Fine for me means I am here talking to you and it is sucking the energy out my core. I never gave it a second thought, when I was healthy, as to how much energy your body uses to just talk or listen, really listen to someone.
Don't treat people rudely when you are out in public you never know if they may be dealing with a chronic illness. I maybe the one you cut in front of or pushed out of your way. One wrong step or fall can put me in pain or down for days. Many times when I am shopping I am leaning on the cart so it will hold me up. I may get to the check out and have a horrible time even putting the few items I get on the belt. Be aware of your surrounding. Help someone if you think they are having problems. When I am at that point if someone asked me if they could even load my car I would be thrilled. I hate to always have to wait to shop with Rich. He works very hard and I feel horrible when I have to ask him to do one more thing. He sacrifices so much for me/us already.
Don't just stop over when it is convenient for you. I may be having a hard day and having company is exhausting for me. Call first! Of course family is exempt from this one!
Don't tell me you have a miracle cure for me. I have really terrific doctors who take very good care of me. They have helped to go from a person who could hardly move to a person who can now enjoy her family and others if there is enough energy to do so. My family has become my first priority and if I have energy left you may get me if not I'm sorry. I surely don't need you telling me a vitamin will make me feel better.
If we do make it out to a party please understand I do not have the energy to talk to everyone. It would be much appreciated if you would come up to me and say hi instead of me having to come up to you. It takes a lot of physical energy for me to come to you.
Don't stop inviting me to your get togethers. Just because I couldn't make it the last time or the time before that doesn't mean I can't make it this time. This is sad to me because this does happen. People just kind of give up on you or take it personally when you can't meet with them. It has nothing to do with them. I wish more people could understand this.
Don't assume that if I just get out more I will feel better. I won't! Going out, even for lunch, takes all my energy for the day, energy I may need to cook dinner or do laundry.
Don't assume because I don't work I probably don't do anything. Taking care of myself is a full time job in itself. I am fortunate to watch my grandchildren and they understand when Nana says, "I have to rest." Sometimes kids understand much better than adults. Plus, they love me unconditionally and don't tell me what I need to do. They just say, OK Nana, I love you!"
Don't treat me like you are going to catch what I have if you happen to see me out in public. I need to know you are happy to see me just as much as I am happy to see you. I am not contagious, if I were I wouldn't be out. In the same regard if you are ill please tell me so I can avoid you as all the drugs I take lower my immune system and I cannot fight off illness like you can. A common cold for you can kill me.
Don't assume I don't need you to care. I do. It can be very lonely and scary on the days I am really sick. Love and prayers are what help me through my days.
Don't assume this chronic illness business is only mine. My husband, Children, Grandchildren and Parents all suffer from this. Rich probably the most as he is my primary caregiver. This is the other side of chronic illness people do not talk about. Chronic Illness IS a family affair.
Don't assume that just because I am sick I do not have a good life. I believe everything happens for a reason and for me this is what I have been handed and I do the best I can do with it. I have a very good life and God has been very good to me. He gave me the best people in the world to take care of me and for that I am grateful!
Don't think that I am making any of this up. Why anyone would ever make up being sick is beyond me. I try to avoid doctors at all costs. I have even begun to let some tests I should be having on a yearly basis go because I just don't care anymore. It is another full time job preparing for doctors appointments and stressing about them. It is no fun!
Don't think that I do not think of my own death. I do. I am ready to go. I know many think that is awful to say and if I was healthy I would probably think the same thing. I'm not healthy so to me it will be such a freeing to me to get out of this body and be in heaven!
Don't compare your health issues to mine. If you ask how I am doing and I say I a tired don't say, "Oh I know I am tired too." You have no idea what I am talking about when I say tired or fatigued. My fatigue is a fatigue that radiates from the bones. It is very hard to explain. Think of the flu and times it by ten. It is even worse that that. Or imagine holding a 25 weight in both hands over your head for a long time until you can no longer hold them up. The tired you feel after doing that is how I feel all the time. Right now I really need to clean my house. I have good intentions. My head is saying I will do it all. Then, I will start. I will sweep the floor and have to rest. Believe me, my head wants to do it all but now my body controls my day. It is heartbreaking for me. I use to be wonder woman now I feel worthless because I can hardly hold my head up for too long without resting it on the chair or with my hand.
Don't call my house before 9am at the earliest! Or after 9pm. Sleep for me is huge! If I do not get 9-10 hours a night my symptoms are worse. I appreciate no calls more than you could ever imagine. I am not going to answer anyways because by the time I try to fumble for the phone and it falls out of my hand the call gets lost anyways. Plus at this point my brain is trying to process making my body be able to move and it cannot handle a conversation anyways.
The last don't: Don't think that I am writing any of this for pity or to be mean. It is just my life. I have found I am the only one who can take control of it. No one else is going to enforce all of these don'ts for me. I must. That is why I share them with you. I hope they not only help you when it comes to me but help you if you are dealing with chronic illness. Or they help you if you know of someone living with chronic illness. If they do not apply to you now, take note because someday they probably will.
May God Bless You and Your Day!
Dianne
Sunday, August 21, 2011
Wednesday May Be Hump Day But It Is Not My Favorite Day Of The Week.
I am sure many people wonder why the heck I post so much stuff on Facebook, heck sometimes I wonder myself. Here I sit on another Wednesday putting off the inevitable. For most people Wednesday is the middle of the week, not a great day, not a bad day, just half way to their weekend. Oh how I wish I could look at Wednesday as hump day just like everyone else does. Go to work, complain, gossip, laugh. live. Ah to dream. I think posting all this stuff on here helps me to deal with all I must face on a daily basis and it helps me get through my day, in some odd way. Lately I have been feeling very well and I am afraid to write that but I am going to take my chances anyways and hope it doesn't bite me in the butt.
My Wednesday's usually start waking up with this horrible dread in the back of my head. A dread that is there when I get up but it is way back in the farthest part of my brain. Hidden. Why? Because today is shot day, Oh how it pains me to write that, the day I inject myself with the lovely drug Methotrexate. I now call myself a Meth addict just to keep myself laughing. Now, I really wouldn't mind so much if that was all it was. Just a shot. Unfortunately it isn't. I know by tomorrow night I will be doing just fine, it is just the twenty four hour span from now until then that worries me. I wake up telling myself just do it right away when you get up. Then, I find myself waiting, waiting, waiting and waiting, then when I finally look the clock and it is noon. Ok, after I eat something...noon comes and goes and it is now 3:32 pm to be exact and I sit here still putting it off. I am almost certain if it were any of my friends you would feel and do the same thing. The headaches, the yuck feeling that you really cannot explain, it is just there. Energy drained from the core of your body, not being able to sleep tonight. Sleep for me is like air for all of us. Without it I am in big trouble! Many people may think this is no big deal but for a person who deals with illness on a daily basis this is a very big deal.
The best part of Wednesday is knowing that when Friday comes and I wake up I will be good as new. For one thing I will be able to see much better. I tell you the few good days I get through the weekend from my horrible hump day makes it all worth it! Also I will have less fatigue and more energy on the weekend so I can enjoy Rich, the kids, and my family, that makes all the hell worth it! So even though Wednesday is my dread day it gives me everything I could ever hope for, the love and joy of spending time with the ones I love and the ones who truly love me. Yipee! Now that I have talked myself into it I think I will go inject myself and look forward to the weekend!
God is good even when things are not so good!
Dianne
My Wednesday's usually start waking up with this horrible dread in the back of my head. A dread that is there when I get up but it is way back in the farthest part of my brain. Hidden. Why? Because today is shot day, Oh how it pains me to write that, the day I inject myself with the lovely drug Methotrexate. I now call myself a Meth addict just to keep myself laughing. Now, I really wouldn't mind so much if that was all it was. Just a shot. Unfortunately it isn't. I know by tomorrow night I will be doing just fine, it is just the twenty four hour span from now until then that worries me. I wake up telling myself just do it right away when you get up. Then, I find myself waiting, waiting, waiting and waiting, then when I finally look the clock and it is noon. Ok, after I eat something...noon comes and goes and it is now 3:32 pm to be exact and I sit here still putting it off. I am almost certain if it were any of my friends you would feel and do the same thing. The headaches, the yuck feeling that you really cannot explain, it is just there. Energy drained from the core of your body, not being able to sleep tonight. Sleep for me is like air for all of us. Without it I am in big trouble! Many people may think this is no big deal but for a person who deals with illness on a daily basis this is a very big deal.
The best part of Wednesday is knowing that when Friday comes and I wake up I will be good as new. For one thing I will be able to see much better. I tell you the few good days I get through the weekend from my horrible hump day makes it all worth it! Also I will have less fatigue and more energy on the weekend so I can enjoy Rich, the kids, and my family, that makes all the hell worth it! So even though Wednesday is my dread day it gives me everything I could ever hope for, the love and joy of spending time with the ones I love and the ones who truly love me. Yipee! Now that I have talked myself into it I think I will go inject myself and look forward to the weekend!
God is good even when things are not so good!
Dianne
My Prayers
As I sit here and think about prayers I wonder why? Why do some prayers get answered and some prayers do not? I don't need anyone giving me a sermon on this it is just my own struggle. Nothing anyone says is going to make me change any of the ways I think. I know I had many people praying for my daughter for her thyroid to not be cancerous and the outcome was what we wanted and prayed for. But, once again I found myself bargaining with God on this one. If you just let it not come back as cancer Lord I will try to do better with my life. Let the cancer be mine and not hers. Those type of prayers. Probably the wrong kind but I think with all I have been through and faced I can pray anyway I want right now!
I mostly prayed for God to give Katie the strength she needed to get through her struggles with all of this. When you are a young mother you are not thinking of yourself, only of your small little ones who need you there to raise them.
I mostly find myself praying for strength whenever I pray these days. I must. I myself have a very hard time praying for healing only because what do I/we say to the people I/we pray for healing who do not get that healing? Or the ones we pray for not to get cancer and they get cancer? I struggle with this more than anything these days. I struggle why I would be chosen to become ill when I have so much good to give out to the world and now an unable to do so. I struggle why a child, teenager mother, grandmother may become ill and suffer while the whole family has to sit on the sidelines in pain and watch them suffer.
I have many questions for the Lord when I get up there or wherever it is I meet him. But I do know one thing. I do know about my faith. A faith in something that gives me the courage to get out of bed each day and love the people who are put in my life that day. I must. When I think back of ALL the times I have sat on the couch crying and just looked at Rich and say, "Why?" He then looks at me and points his finger up and says, "Faith." That's all he ever says, "Faith." So needless to say all the times I start to question God and ask why the picture of Rich sitting on the other side of the couch comes into my mind. I see him clear as day with his finger pointed up. "Faith."
Even when things are bad God is still good!
God Bless You My Friends!!
I mostly prayed for God to give Katie the strength she needed to get through her struggles with all of this. When you are a young mother you are not thinking of yourself, only of your small little ones who need you there to raise them.
I mostly find myself praying for strength whenever I pray these days. I must. I myself have a very hard time praying for healing only because what do I/we say to the people I/we pray for healing who do not get that healing? Or the ones we pray for not to get cancer and they get cancer? I struggle with this more than anything these days. I struggle why I would be chosen to become ill when I have so much good to give out to the world and now an unable to do so. I struggle why a child, teenager mother, grandmother may become ill and suffer while the whole family has to sit on the sidelines in pain and watch them suffer.
I have many questions for the Lord when I get up there or wherever it is I meet him. But I do know one thing. I do know about my faith. A faith in something that gives me the courage to get out of bed each day and love the people who are put in my life that day. I must. When I think back of ALL the times I have sat on the couch crying and just looked at Rich and say, "Why?" He then looks at me and points his finger up and says, "Faith." That's all he ever says, "Faith." So needless to say all the times I start to question God and ask why the picture of Rich sitting on the other side of the couch comes into my mind. I see him clear as day with his finger pointed up. "Faith."
Even when things are bad God is still good!
God Bless You My Friends!!
Living Life On The Sidelines
Chronic Illness. When I see these words or I hear these words ring out through my mind on a daily basis many thoughts run through my head. Loneliness, anger, pain, weakness, migraines, high stress levels, sadness. Yes, it is true, when I first hear those words I think of all the bad and the things that frustrate me, not only for myself but for all my friends who struggle too. It isn't easy at all. But then, there is also the flip side.
For me the worst part, over all the physical symptoms, is the loneliness. The living on the sidelines while everyone else is out in the world. Seeing how others are able to camp, go to the beach, go for walks or runs, etc. Believe me, I am very happy for those who can and I rejoice in that, but for me it is hard. The way my mind, or as I believe the devil, can run so many negative thoughts through my head can become very discouraging. It can become especially bad on the days my body does not want to cooperate. Those are the days I am in the pit. At the bottom barely able to do anything physical. Those are the days a shower, hair, and makeup are all I may do. It is funny because usually after I force myself to do this how two hours later I can look so much better that it helps me to feel better too.
For me, my appearance has always been very important. Probably because of the thought that if I look good no one will know what is really going on. Out in public most would never have a clue as to my struggles. Or it could be because of my grandmother. I remember spending weekends with her. She would sit at her vanity putting her hair in rollers and putting on her makeup. The one thing she would say to me every time we sat there together. "Now Dianne you never go out in public without your hair done, rouge, or lipstick." I think that is why I am how I am today. Funny how those childhood teaching stay with you forever.
Which brings me to another side of illness. The positive side. From the positive side it all becomes just a little bit easier!
Although it would be wonderful to be healthy and able to do what others can do but then when I think of it would I really want that? When I watch other people live the lives of the crazy, mad business I think to myself, I just don't think that is me now or ever was. Illness has made me slow down. Really slowed me down, and what happens when you slow down? You evaluate everything to the core. Every detail so deeply that there is often nothing left to evaluate.
I remember when I first got very sick five years ago. I cried, cried a lot. Poor Rich. I didn't understand any of it. I didn't understand how God would allow this. I didn't understand why I couldn't do things other people could, physically. I didn't understand anything. It was a horrible nightmare. Doctor after doctor, test after test almost as if we were living in a dream. Some days I still don't understand any of it when I do allow myself to look back.
But, the one thing I do understand is what my life is for. In all of this I have come to realize that all that matters in life is people. Helping others, loving others when they can't love themselves. Spreading love to all of those around me. I have also learned how to let people go who cannot or do not want to be loved.This is not easy either, but when your health is in jeopardy every day you must learn to surround yourself with positive influences at all costs, and cut lose the ones who bring you down or cannot love you. I do not believe this is a bad thing at all. You do yourself a favor when you focus on only good.
I have also learned there are people who can love so deeply, which makes me wonder, could I? I never really thought of selfless love when I lived in the ordinary world. The kind where people would go to the ends of the earth for you. The kind of love where you look in the eyes of those who love you and you can feel your souls connect without anything being said. The kind of love that would heal me if it was at all possible. I have learned there is really true love and goodness in a world gone bad. Another blessing God gave me, the perfect family. He knew I was going to need them, he put me with the most loving caring people who he knew could handle the illness and do their best to take care of me. See, I do believe it is all a part of some big plan from the day I was born.
Although I have learned the bad and the carelessness through my illness I focus more on the goodness because I am surrounded by goodness and I thank the Lord for that everyday! I thank the Lord for my illness, although not easy on some days, nonetheless a true blessing.
Remember, even when times are bad, God is still good!!
Dianne
For me the worst part, over all the physical symptoms, is the loneliness. The living on the sidelines while everyone else is out in the world. Seeing how others are able to camp, go to the beach, go for walks or runs, etc. Believe me, I am very happy for those who can and I rejoice in that, but for me it is hard. The way my mind, or as I believe the devil, can run so many negative thoughts through my head can become very discouraging. It can become especially bad on the days my body does not want to cooperate. Those are the days I am in the pit. At the bottom barely able to do anything physical. Those are the days a shower, hair, and makeup are all I may do. It is funny because usually after I force myself to do this how two hours later I can look so much better that it helps me to feel better too.
For me, my appearance has always been very important. Probably because of the thought that if I look good no one will know what is really going on. Out in public most would never have a clue as to my struggles. Or it could be because of my grandmother. I remember spending weekends with her. She would sit at her vanity putting her hair in rollers and putting on her makeup. The one thing she would say to me every time we sat there together. "Now Dianne you never go out in public without your hair done, rouge, or lipstick." I think that is why I am how I am today. Funny how those childhood teaching stay with you forever.
Which brings me to another side of illness. The positive side. From the positive side it all becomes just a little bit easier!
Although it would be wonderful to be healthy and able to do what others can do but then when I think of it would I really want that? When I watch other people live the lives of the crazy, mad business I think to myself, I just don't think that is me now or ever was. Illness has made me slow down. Really slowed me down, and what happens when you slow down? You evaluate everything to the core. Every detail so deeply that there is often nothing left to evaluate.
I remember when I first got very sick five years ago. I cried, cried a lot. Poor Rich. I didn't understand any of it. I didn't understand how God would allow this. I didn't understand why I couldn't do things other people could, physically. I didn't understand anything. It was a horrible nightmare. Doctor after doctor, test after test almost as if we were living in a dream. Some days I still don't understand any of it when I do allow myself to look back.
But, the one thing I do understand is what my life is for. In all of this I have come to realize that all that matters in life is people. Helping others, loving others when they can't love themselves. Spreading love to all of those around me. I have also learned how to let people go who cannot or do not want to be loved.This is not easy either, but when your health is in jeopardy every day you must learn to surround yourself with positive influences at all costs, and cut lose the ones who bring you down or cannot love you. I do not believe this is a bad thing at all. You do yourself a favor when you focus on only good.
I have also learned there are people who can love so deeply, which makes me wonder, could I? I never really thought of selfless love when I lived in the ordinary world. The kind where people would go to the ends of the earth for you. The kind of love where you look in the eyes of those who love you and you can feel your souls connect without anything being said. The kind of love that would heal me if it was at all possible. I have learned there is really true love and goodness in a world gone bad. Another blessing God gave me, the perfect family. He knew I was going to need them, he put me with the most loving caring people who he knew could handle the illness and do their best to take care of me. See, I do believe it is all a part of some big plan from the day I was born.
Although I have learned the bad and the carelessness through my illness I focus more on the goodness because I am surrounded by goodness and I thank the Lord for that everyday! I thank the Lord for my illness, although not easy on some days, nonetheless a true blessing.
Remember, even when times are bad, God is still good!!
Dianne
One Small Step For Most - One Giant Leap For The Chroncially Ill
Here I sit waiting for anther doctors appointment and thinking what better time to sit down and write a little educational note. You must know by now how I love to educate all of you :)
It is so strange to me how one minute, hour, day, or week I can be feeling really ill and POOF it all turns around and the sun comes out and things clear up to some degree. Although that pesky little friend of mine, chronic illness, is always around the corner watching me waiting for his chance to jump out and make his ugly appearance.
I am finally having a pretty OK, (good?) week and hoping this note doesn't cause the goodness to circle around and bite me in the butt. When ever I tell Rich I feel good he puts his hand up and says, "don't say that you know what happens when you say that." Ya I know!
Even when I say I am good I still struggle from minute to minute. I can be fine sitting down doing nothing and get up to start doing something and WHAM my body forces me to go sit back down. This has to be the worst part of being ill on a daily basis. I mean really, my mind would love nothing better than to be able to go outside and walk, just a mile, but my body tells me otherwise. Or pick a few weeds in the garden or, oh never mind you get the just.
I get in the shower only to have to feel like I ran a twenty five mile marathon when I get out. Ah to dream, if only I knew what it felt like to run. Holding my arms up long enough to wash my hair should have earned me a gold metal by now. It hasn't. Shaving ahahah what a joy that is. Ok enough said there.
Then there is dinner. The thought of what a process that is wears me body out by just thinking of all that is involved. These days dinner has become simple. Chicken breast and salad or something in the crock pot. You would not believe how much physical energy it takes to make a decent meal. The worst part of it is if I do decide to bite the bullet and cook by the time we sit down to eat I can't even eat that much because it takes even more energy to chew and swallow. It is an exhausting process to say the least. Then, there is the clean up but we are not even going to go there. Ok for a second, clean up usually waits a bit until I can rest on the couch or it involves me watching my wonderful husband who is dog tired from a long day at work do it. All the while listening to him telling me you go rest dear I will do it I don't mind, and meaning it. While tears are rolling down my face.
Then there is the shopping that needs to be done tonight. As usual, hard working Rich will be the pilot as we go but it is just so frustrating. The way I feel right now it seems I may not be able to go but I am going to fight my hardest to try. It is hard to admit that sometimes you just have to give into the body and accept what it is telling you, as hard as that is. After the doctor appt, I will probably be washed out. But then again, hopefully the shot of Methotrexate I injected yesterday will kick in and I will feel better. By the way Methotrexate is a drug used for chemo given in lower doses for autoimmune disease. (I like saying I am on Meth it makes me laugh) So for twenty four hours after my shot I feel like I was hit by a bus, literally! Tomorrow will be better though, so I focus on tomorrow! When I can see again and have more energy!
Seems everything I do these days is all little steps to reach the goal in mind. I mean I always have the goal in mind, using the doctor appt as the goal/example. All of my goals have to be broken into manageable baby steps. Here is how it usually goes: The shower, rest. The hair, rest. The makeup, rest. Get dressed, rest. Drive, rest. Walk into the office and check in, rest. See doc, rest. Get back to car, rest. Drive home, rest. Now for a normal person it is just a doctors appt on top of a million other things that must get done that day for me a doctors appt. IS my whole day and I will be exhausted from it. This is no lie, this is life for me.
After reading this you can understand why when you are chronically ill you learn to live in your own little bubble. No one really understands. Oh they try but we live in a world of healthy people. When I am out with other people I have to put on the face. The face of health. The face that every thing is ok and I am doing just fine. That is why, I always "look so good." It hides the pain of living sick every minute of every day even on the good ones. So here is to being that great pretender. I am an expert!
I hope and pray this is a good day for you and that you appreciate your health more than you already do and if you don't, start to today. Don't ever take it for granted because it can all change in an instant. If it does, contact me, I will understand!
God is good even when things are not so good!!
Dianne
It is so strange to me how one minute, hour, day, or week I can be feeling really ill and POOF it all turns around and the sun comes out and things clear up to some degree. Although that pesky little friend of mine, chronic illness, is always around the corner watching me waiting for his chance to jump out and make his ugly appearance.
I am finally having a pretty OK, (good?) week and hoping this note doesn't cause the goodness to circle around and bite me in the butt. When ever I tell Rich I feel good he puts his hand up and says, "don't say that you know what happens when you say that." Ya I know!
Even when I say I am good I still struggle from minute to minute. I can be fine sitting down doing nothing and get up to start doing something and WHAM my body forces me to go sit back down. This has to be the worst part of being ill on a daily basis. I mean really, my mind would love nothing better than to be able to go outside and walk, just a mile, but my body tells me otherwise. Or pick a few weeds in the garden or, oh never mind you get the just.
I get in the shower only to have to feel like I ran a twenty five mile marathon when I get out. Ah to dream, if only I knew what it felt like to run. Holding my arms up long enough to wash my hair should have earned me a gold metal by now. It hasn't. Shaving ahahah what a joy that is. Ok enough said there.
Then there is dinner. The thought of what a process that is wears me body out by just thinking of all that is involved. These days dinner has become simple. Chicken breast and salad or something in the crock pot. You would not believe how much physical energy it takes to make a decent meal. The worst part of it is if I do decide to bite the bullet and cook by the time we sit down to eat I can't even eat that much because it takes even more energy to chew and swallow. It is an exhausting process to say the least. Then, there is the clean up but we are not even going to go there. Ok for a second, clean up usually waits a bit until I can rest on the couch or it involves me watching my wonderful husband who is dog tired from a long day at work do it. All the while listening to him telling me you go rest dear I will do it I don't mind, and meaning it. While tears are rolling down my face.
Then there is the shopping that needs to be done tonight. As usual, hard working Rich will be the pilot as we go but it is just so frustrating. The way I feel right now it seems I may not be able to go but I am going to fight my hardest to try. It is hard to admit that sometimes you just have to give into the body and accept what it is telling you, as hard as that is. After the doctor appt, I will probably be washed out. But then again, hopefully the shot of Methotrexate I injected yesterday will kick in and I will feel better. By the way Methotrexate is a drug used for chemo given in lower doses for autoimmune disease. (I like saying I am on Meth it makes me laugh) So for twenty four hours after my shot I feel like I was hit by a bus, literally! Tomorrow will be better though, so I focus on tomorrow! When I can see again and have more energy!
Seems everything I do these days is all little steps to reach the goal in mind. I mean I always have the goal in mind, using the doctor appt as the goal/example. All of my goals have to be broken into manageable baby steps. Here is how it usually goes: The shower, rest. The hair, rest. The makeup, rest. Get dressed, rest. Drive, rest. Walk into the office and check in, rest. See doc, rest. Get back to car, rest. Drive home, rest. Now for a normal person it is just a doctors appt on top of a million other things that must get done that day for me a doctors appt. IS my whole day and I will be exhausted from it. This is no lie, this is life for me.
After reading this you can understand why when you are chronically ill you learn to live in your own little bubble. No one really understands. Oh they try but we live in a world of healthy people. When I am out with other people I have to put on the face. The face of health. The face that every thing is ok and I am doing just fine. That is why, I always "look so good." It hides the pain of living sick every minute of every day even on the good ones. So here is to being that great pretender. I am an expert!
I hope and pray this is a good day for you and that you appreciate your health more than you already do and if you don't, start to today. Don't ever take it for granted because it can all change in an instant. If it does, contact me, I will understand!
God is good even when things are not so good!!
Dianne
Caregiving: Through The Eyes Of The Ill
Dear Caregiver,
I see the pain in your eyes daily. I wonder how you do it.
I see the look of wanting to make me better and not being able to do so. I wonder how you do it.
I see you stand beside me when I am my sickest, and watch you feel helpless because you can't make me better. I wonder how you do it.
I feel your love when no words need to be said. I wonder how you do it.
I know you would search the ends of the earth to help me feel better when in reality there is nothing you can do. I wonder how you do it.
I watch you work hard, long, grueling hours everyday to pay doctor bills, medicine bills, put food on the table, pay our living expenses. It pains me not to be able to help in any way. I wonder how you do it.
I see the worry in your eyes every time you leave me. Worrying that I may fall or need something and you will not be here to help me if I need you. I wonder how you do it.
I see you sacrifice your life for me. Give up social events to take care of me. I wonder how you do it.
I see you do all the things I use to be able to be able to do and now can't. I wonder how you do it.
I see the concern in your eyes every time we go to a doctors appointment wondering what will happen this time. I wonder how you do it.
I see you go to parties or events alone when I am to sick to go. I wonder how you do it.
I see you love me with, a genuine true love, and tell me how beautiful I am even when I know I look like hell. I wonder how you do it.
I see the sadness and horrible pain in your eyes that you don't think I see. I wonder how you do it.
I see you when I am crabby and bite your head off when you do not deserve it. I wonder how you put up with it.
I see the determination in your eyes when I say I just want this to end and you remind me of all I have to live for.
I see how mad you get at me when I threaten to stop all my meds and you have to remind me how sick I was before the meds. I wonder how you do it.
I see you understand while many others don't. I wonder how you do it.
I wonder how you do it all on a daily basis. I wonder!
All I can say is I/we now know the meaning of the vows we took in sickness and in health! I/we know what til death do us part means because we have been hit with life changing illness, one that will be a part of our marriage til the end. I wonder would I be the same if the tables were turned? I like to think, yes I would, but then I wonder, would I? Could I? I wonder!
For me I think and truly believe it is easier being the sick person in the relationship. I have reason to give things up because I have been forced to. My body controls what I can and cannot do. But you, you have chosen to give up many of the same things just to care for me. What a sacrifice you make for me on a daily basis. How does one repay someone for such a selfless act of love? I don't think it is even possible. I wonder how you do it.
I have come to realize this is not a mistake, this illness, nothing in life ever is. It is all a part of the plan. The illness, the caregiver, the love. It has taught us both many lessons, good and bad. What true commitment really is. That people do and can stay together no matter how rough things get and that they can still love each other when one person can make it so hard to do so. You love me so! I wonder how.
It saddens me how we forget the caregivers of the world. When someone becomes ill we think of the ill but behind every ill person is a caregiver and a family of caregivers. The heroes who do all the little things we all take for granted. We forget about these heroes and forget to thank them for the daily sacrifices they must make. The ones who would go to the ends of the earth what ever time of day or night to make life a little more comfortable for the one who is sick.
I have realize this is how my illness makes you feel better and helps you process it all. By doing and helping me it helps you process it all and try to make sense of it all in your eyes. I wonder if that is possible because I can't make sense of it I wonder how you can.
I know you worry all the time about me while at the same time I worry what will I do if something happens to you?
I always say it is so much easier being the sick one in the relationship. The pain that must be in your heart to watch the one you love suffer has to be excruciating on a daily basis. I can only imagine, as I watch this from my view. I watch Rich being on the side of helplessness. Wanting to fix and not being able to do anything to make it better. Or so he thinks. He never realizes just having him there to care is enough and helps me more than any medication or therapy.
This post goes out to all the caregivers who sacrifice on a daily basis.
THANK YOU!! YOU ROCK OUR WORLD!!
Remember, even when things are bad God is still good!
Sincerely,
Dianne
I see the pain in your eyes daily. I wonder how you do it.
I see the look of wanting to make me better and not being able to do so. I wonder how you do it.
I see you stand beside me when I am my sickest, and watch you feel helpless because you can't make me better. I wonder how you do it.
I feel your love when no words need to be said. I wonder how you do it.
I know you would search the ends of the earth to help me feel better when in reality there is nothing you can do. I wonder how you do it.
I watch you work hard, long, grueling hours everyday to pay doctor bills, medicine bills, put food on the table, pay our living expenses. It pains me not to be able to help in any way. I wonder how you do it.
I see the worry in your eyes every time you leave me. Worrying that I may fall or need something and you will not be here to help me if I need you. I wonder how you do it.
I see you sacrifice your life for me. Give up social events to take care of me. I wonder how you do it.
I see you do all the things I use to be able to be able to do and now can't. I wonder how you do it.
I see the concern in your eyes every time we go to a doctors appointment wondering what will happen this time. I wonder how you do it.
I see you go to parties or events alone when I am to sick to go. I wonder how you do it.
I see you love me with, a genuine true love, and tell me how beautiful I am even when I know I look like hell. I wonder how you do it.
I see the sadness and horrible pain in your eyes that you don't think I see. I wonder how you do it.
I see you when I am crabby and bite your head off when you do not deserve it. I wonder how you put up with it.
I see the determination in your eyes when I say I just want this to end and you remind me of all I have to live for.
I see how mad you get at me when I threaten to stop all my meds and you have to remind me how sick I was before the meds. I wonder how you do it.
I see you understand while many others don't. I wonder how you do it.
I wonder how you do it all on a daily basis. I wonder!
All I can say is I/we now know the meaning of the vows we took in sickness and in health! I/we know what til death do us part means because we have been hit with life changing illness, one that will be a part of our marriage til the end. I wonder would I be the same if the tables were turned? I like to think, yes I would, but then I wonder, would I? Could I? I wonder!
For me I think and truly believe it is easier being the sick person in the relationship. I have reason to give things up because I have been forced to. My body controls what I can and cannot do. But you, you have chosen to give up many of the same things just to care for me. What a sacrifice you make for me on a daily basis. How does one repay someone for such a selfless act of love? I don't think it is even possible. I wonder how you do it.
I have come to realize this is not a mistake, this illness, nothing in life ever is. It is all a part of the plan. The illness, the caregiver, the love. It has taught us both many lessons, good and bad. What true commitment really is. That people do and can stay together no matter how rough things get and that they can still love each other when one person can make it so hard to do so. You love me so! I wonder how.
It saddens me how we forget the caregivers of the world. When someone becomes ill we think of the ill but behind every ill person is a caregiver and a family of caregivers. The heroes who do all the little things we all take for granted. We forget about these heroes and forget to thank them for the daily sacrifices they must make. The ones who would go to the ends of the earth what ever time of day or night to make life a little more comfortable for the one who is sick.
I have realize this is how my illness makes you feel better and helps you process it all. By doing and helping me it helps you process it all and try to make sense of it all in your eyes. I wonder if that is possible because I can't make sense of it I wonder how you can.
I know you worry all the time about me while at the same time I worry what will I do if something happens to you?
I always say it is so much easier being the sick one in the relationship. The pain that must be in your heart to watch the one you love suffer has to be excruciating on a daily basis. I can only imagine, as I watch this from my view. I watch Rich being on the side of helplessness. Wanting to fix and not being able to do anything to make it better. Or so he thinks. He never realizes just having him there to care is enough and helps me more than any medication or therapy.
This post goes out to all the caregivers who sacrifice on a daily basis.
THANK YOU!! YOU ROCK OUR WORLD!!
Remember, even when things are bad God is still good!
Sincerely,
Dianne
What Is Going On Today? Or Is It Just Me?
Today is not such a good day, so what to do? Write a note of course. For some reason when I write this stuff I may or may not get a response but I do get the satisfaction of unloading my emotional crap here for all my friends to see. Plus it does help me to feel better for some reason.
The past few days have been brutal. I am not sure if it is the dampness, the heat or just a typical flare of the arthritis. Whatever it is I don't like it. Seems I have bad spells daily with the MG symptoms and they may get a little better and boom the joints swell, I'm in pain, I feel sad, and I am just not feeling well. It is no fun having pain, it is no fun feeling ill, it is no fun feeling like I am to weak to do much of anything. But, I do anyways. Fortunately last night we were able to go out to dinner and pick a few things up at the store. It was actually fun and of course I was with Rich so that always makes everything easier for me. Hon, I'm getting tired, Hon, I'm getting weak we have to get out of here are typical statements Rich hears from me. Well, then just go to the car and get the air going. I'll finish and be right there are typical statements from him. What a man I have!!
Today I am blessed enough to have Addi come spend some time with me so Dave and Katie could take Hunter to the air show in Battle Creek. I am thankful I had her. She gave me no excuse what so ever to sit on my duff and feel sorry for myself. But then I do sit here while she sleeps and get angry, mostly at myself, that others can be out enjoying this hot day when I have to stay in because the heat will exasperate my symptoms times ten. Oh how I wish I had enough energy to go to the beach and feel the sand between my toes. Sad part is even on good days that cannot happen. Walking in the sand would make my muscles so weak I wouldn't make it far at all. But on a good day, in the near future, I may be able to walk the pier. That will be happening this summer at least once!
Then there is a few weeks from now when my family will be tubing and I cannot go. Of course they all want me to and will go to any extreme to get me there, but it just isn't worth it. I joked to Richie when he was begging me to go, get a raft with a lounge chair in it so I will have something to hold my head up for me and maybe I'll go. He said he would of course, but even then, I know it is something I cannot do. Those are the most painful times for me, much worse than the physical pain and symptoms. But then I will still win because I told Katie I will watch Hunter and Addi so I can't wallow in my own self pity. After all, I can collect lots of hugs and kisses and I love you Nana's!! I can already hear Hunter telling me ten times that day, I missed you Nana and come running up to me and wrap his arms around my neck and hug me. He tells me this even if he saw me the day before and I love it!! Ahhhhh....I am beginning to feel better already.
I think my friend Carol is right, I need to start my own blog and maybe get some more response to encourage me through the tough days like this.
Happy 4th of July weekend to all of you! Enjoy your time and never take a minute of it for granted! God is still good when things are not so good!
The past few days have been brutal. I am not sure if it is the dampness, the heat or just a typical flare of the arthritis. Whatever it is I don't like it. Seems I have bad spells daily with the MG symptoms and they may get a little better and boom the joints swell, I'm in pain, I feel sad, and I am just not feeling well. It is no fun having pain, it is no fun feeling ill, it is no fun feeling like I am to weak to do much of anything. But, I do anyways. Fortunately last night we were able to go out to dinner and pick a few things up at the store. It was actually fun and of course I was with Rich so that always makes everything easier for me. Hon, I'm getting tired, Hon, I'm getting weak we have to get out of here are typical statements Rich hears from me. Well, then just go to the car and get the air going. I'll finish and be right there are typical statements from him. What a man I have!!
Today I am blessed enough to have Addi come spend some time with me so Dave and Katie could take Hunter to the air show in Battle Creek. I am thankful I had her. She gave me no excuse what so ever to sit on my duff and feel sorry for myself. But then I do sit here while she sleeps and get angry, mostly at myself, that others can be out enjoying this hot day when I have to stay in because the heat will exasperate my symptoms times ten. Oh how I wish I had enough energy to go to the beach and feel the sand between my toes. Sad part is even on good days that cannot happen. Walking in the sand would make my muscles so weak I wouldn't make it far at all. But on a good day, in the near future, I may be able to walk the pier. That will be happening this summer at least once!
Then there is a few weeks from now when my family will be tubing and I cannot go. Of course they all want me to and will go to any extreme to get me there, but it just isn't worth it. I joked to Richie when he was begging me to go, get a raft with a lounge chair in it so I will have something to hold my head up for me and maybe I'll go. He said he would of course, but even then, I know it is something I cannot do. Those are the most painful times for me, much worse than the physical pain and symptoms. But then I will still win because I told Katie I will watch Hunter and Addi so I can't wallow in my own self pity. After all, I can collect lots of hugs and kisses and I love you Nana's!! I can already hear Hunter telling me ten times that day, I missed you Nana and come running up to me and wrap his arms around my neck and hug me. He tells me this even if he saw me the day before and I love it!! Ahhhhh....I am beginning to feel better already.
I think my friend Carol is right, I need to start my own blog and maybe get some more response to encourage me through the tough days like this.
Happy 4th of July weekend to all of you! Enjoy your time and never take a minute of it for granted! God is still good when things are not so good!
The Mind Body Connection Living With Chronic Illness
Mind Body Connection in Chronic Illness
by Dianne Bramer on Wednesday, June 29, 2011 at 9:39am
In Chronic Illness, the more you are able to educate yourself, the more you use positive energy the better you can feel, at least in your mind, even if your body does not agree at that moment.
Do something you love! I am unable to do a lot of physical activities, almost any physical activity puts me down, but that is not going to hold me back. I am able to do art, mostly like a third grader, but none the less it is my art and my therapy. I love to make cards to send to other people who need to be lifted up when they are struggling. Just knowing I make someone else smile when they are in a funk makes me smile and it gives me another reason for being here. To encourage others who are struggling because I know what it is to live with the struggle.
I also believe your body works overtime in an overload mode when you are sick or if you live with a chronic illness. I have many problems with my eyes because of my health issues, one time my Neurologist, Dr Christopher Glisson the best Neuro ever, told me that my brain is so busy trying to process everything else that is going on in my body that my eye sight is the last thing my brain cares about. My brain is actively trying to fix and keep up with all the pain, weakness, and other symptoms going on that it just doesn't care if I can see or not. WOW! That was any eye opener. No pun intended :) I never would have thought of it like that. Then the last time I saw him I asked him why I can be so good for a few days and then WHAM it is like someone comes along, literally, and flips a light switch and all hell breaks lose. He told me living with autoimmune IS like a roller coaster ride, and unfortunately that is just how it is. No sugar coating just, it is what it is Dianne. That has helped me so much, so of course I had to send him a card to tell him thank you for that!
Staying positive even when it is hard to do so can be hard and much easier said then done! It can be like a full time job. Surround yourself with goodness and for gosh sakes always feed your soul with the things you love! For me that is my family. I cherish every second I get to spend with them, even when I feel like crap. They know when I do and they understand. They can tell when I am not so good and their love gets me through each and everyday. Of course we can't always be together, which can lead to a lonely existence on some days, especially when you can't work and get around others, but I always look forward to the next meeting with one of them. Or I come on facebook and read some amazing posts that encourage me and lift me up.
All of this being said, believe me when I am having a bad day or ten, I get depressed, I cry, I complain (mostly to myself and God), but I never give up the hope that I will have better days soon. Mostly I tell myself, one of these times I will have a good day and it will turn into another and then POOF I will be cured! Ok, so it might be the day I die but I am keeping the hope! You keep yours too! In the meantime we will lean on each other and support, love, and encourage one another! STAY POSITIVE!!!
What NOT To Say To The Chronically Ill Person 101
This is chronic illness education week. We will call it, What Not To Say To A Chronically Ill Person 101:
What Not To Say To The Chronically Ill Person 101 Day One: "Someone always has it worse off than you do." Well, DAHHHHH...I/We know that. We are sick not stupid. Plus, does that mean what we are going through is nothing? Just because someone has it worse off than I does not make what I am going through any easier. I still live through hell on a daily basis, some days worse than others, it isn't easy. Please respect that. When you are sick I am very understanding. You get a cold and think you are dying. Imagine feeling sicker than that everyday. Impossible to even imagine I am sure.
What Not To Say To A Chronically Ill Person 101: Day Two: “All you need to do is get out more.” Oh believe me there is nothing more I would rather do but with only x amount of energy in a day that can be impossible. Imagine the most tired/fatigued you have ever been, now times by 10 and have it every day. Doing simple tasks can become impossible. I need to use the energy I do have on the little things most people consider nuisances. Laundry, dinner, cleaning, and taking a simple shower. A job is out of the question. So when I can’t meet you for lunch, please understand. I need my energy to love my family first, after all they are the ones who see, understand, and take care of me when I am very ill and on a daily basis. If I meet you for lunch they lose out and I am not willing to risk that loss. Plus every time I leave the house I am putting myself at risk of infection or a cold. If you get a cold you are sick for a week, if I get a cold I am down on the couch for three weeks and usually end up with an infection of some sort. One more thing, if this were the case I would have traveled around the world by now!
What Not To Say To A Chronically Ill Person 101 Day Three: Phone rings at 8an, 9am, 10am. I fumble for the phone and try to get a grip with stiff hands. Hello in a very shallow voice. “You are still sleeping? It is time for you to get up.” Ok thanks for that! Now my whole day will be even more shot because you think because you only need 6 hours of sleep a night that I do too. Wrong! If I can get 10-12 maybe, just maybe I will have a good day. Thank you for understanding my world as I try to understand yours. Now, I’m gonna try to go back to sleep but I am almost sure that isn’t going to happen now so my whole day is going to suck.
What Not To Say To A Chronically Ill Person 101 Day Four: “What do you mean you have to cancel our plans, or, "you don’t have to leave already you just got here.” Ahhh ya I do have to cancel. I am sick, what part of sick don’t you understand? Or maybe I can only come to a party for only 2 hours please be happy I even showed up because it will take me 2 or 3 days to recover from sharing that amount of time with you. Once again not to mention the risk I am putting my health in by being around all the germs of the world. Please understand!
What Not To Say To A Chronically Ill Person 101 Day Five: "So and so is always at the doctor I think she is just a hypochondriac or she is always sick I know she just does it for attention." I hear this so often when other people are talking about people they know. When I hear people say this about other people I always wonder what they say about me when I am not around. Man, it must be a great conversation! Wish I could listen in sometime. Be careful what you say! Gossip hurts more than just the person you are gossiping about.
What Not To Say To A Chronically Ill Person101 Day Six: "You just need to take vitamins. Like B12, more calcium. I have a friend who tried , insert any vitamin here, and they felt so much better." Oh really does your friend have antibodies in their blood attacking their insides? Eating away at cartilage? Causing their muscles to becomes so weak they can't move at times? Causing their eyes to get so weak she can't read or see straight? I could go on but I won't. Does your friend see multiple doctors/specialists on a such a regular basis that now when she goes for an appointment she talkss about her family and theirs to each other? Does your friend take a handful of meds every morning just to get moving and have to give herself a shot of chemo drugs every Wednesday that make her sick for 24 hours but help relieve her symptoms the rest of the week? Probably not. So shut up! Plus if that were all it would take to make me feel better I would have consumed every vitamin known to man to take me out of this hell!
What Not To Say To A Chronically Ill Person 101 Day Seven is my quote, “I don’t believe it is that people don’t want to understand chronic illness. I believe that they have just never been around it so they do not understand it. That is why I am here. To educate. I do not in any way get mad at these comments or statements I just get a little sad and irritated at times. Sad that people cannot love and understand others without often times having to give their opinions or smart comments. It turns you into a very inward place of misunderstanding. Chronic illness is very lonely but it also makes you realize who and what matters in life. Who loves you, who is there for the long haul, and what a strong person you are even on the days you don’t think you are.”
I could actually go on forever but I am going to stop. Unless someone comes up to me and says something stupid then I will be back here writing it down. For some reason I think I be seeing you real soon :)
What Not To Say To The Chronically Ill Person 101 Day One: "Someone always has it worse off than you do." Well, DAHHHHH...I/We know that. We are sick not stupid. Plus, does that mean what we are going through is nothing? Just because someone has it worse off than I does not make what I am going through any easier. I still live through hell on a daily basis, some days worse than others, it isn't easy. Please respect that. When you are sick I am very understanding. You get a cold and think you are dying. Imagine feeling sicker than that everyday. Impossible to even imagine I am sure.
What Not To Say To A Chronically Ill Person 101: Day Two: “All you need to do is get out more.” Oh believe me there is nothing more I would rather do but with only x amount of energy in a day that can be impossible. Imagine the most tired/fatigued you have ever been, now times by 10 and have it every day. Doing simple tasks can become impossible. I need to use the energy I do have on the little things most people consider nuisances. Laundry, dinner, cleaning, and taking a simple shower. A job is out of the question. So when I can’t meet you for lunch, please understand. I need my energy to love my family first, after all they are the ones who see, understand, and take care of me when I am very ill and on a daily basis. If I meet you for lunch they lose out and I am not willing to risk that loss. Plus every time I leave the house I am putting myself at risk of infection or a cold. If you get a cold you are sick for a week, if I get a cold I am down on the couch for three weeks and usually end up with an infection of some sort. One more thing, if this were the case I would have traveled around the world by now!
What Not To Say To A Chronically Ill Person 101 Day Three: Phone rings at 8an, 9am, 10am. I fumble for the phone and try to get a grip with stiff hands. Hello in a very shallow voice. “You are still sleeping? It is time for you to get up.” Ok thanks for that! Now my whole day will be even more shot because you think because you only need 6 hours of sleep a night that I do too. Wrong! If I can get 10-12 maybe, just maybe I will have a good day. Thank you for understanding my world as I try to understand yours. Now, I’m gonna try to go back to sleep but I am almost sure that isn’t going to happen now so my whole day is going to suck.
What Not To Say To A Chronically Ill Person 101 Day Four: “What do you mean you have to cancel our plans, or, "you don’t have to leave already you just got here.” Ahhh ya I do have to cancel. I am sick, what part of sick don’t you understand? Or maybe I can only come to a party for only 2 hours please be happy I even showed up because it will take me 2 or 3 days to recover from sharing that amount of time with you. Once again not to mention the risk I am putting my health in by being around all the germs of the world. Please understand!
What Not To Say To A Chronically Ill Person 101 Day Five: "So and so is always at the doctor I think she is just a hypochondriac or she is always sick I know she just does it for attention." I hear this so often when other people are talking about people they know. When I hear people say this about other people I always wonder what they say about me when I am not around. Man, it must be a great conversation! Wish I could listen in sometime. Be careful what you say! Gossip hurts more than just the person you are gossiping about.
What Not To Say To A Chronically Ill Person101 Day Six: "You just need to take vitamins. Like B12, more calcium. I have a friend who tried , insert any vitamin here, and they felt so much better." Oh really does your friend have antibodies in their blood attacking their insides? Eating away at cartilage? Causing their muscles to becomes so weak they can't move at times? Causing their eyes to get so weak she can't read or see straight? I could go on but I won't. Does your friend see multiple doctors/specialists on a such a regular basis that now when she goes for an appointment she talkss about her family and theirs to each other? Does your friend take a handful of meds every morning just to get moving and have to give herself a shot of chemo drugs every Wednesday that make her sick for 24 hours but help relieve her symptoms the rest of the week? Probably not. So shut up! Plus if that were all it would take to make me feel better I would have consumed every vitamin known to man to take me out of this hell!
What Not To Say To A Chronically Ill Person 101 Day Seven is my quote, “I don’t believe it is that people don’t want to understand chronic illness. I believe that they have just never been around it so they do not understand it. That is why I am here. To educate. I do not in any way get mad at these comments or statements I just get a little sad and irritated at times. Sad that people cannot love and understand others without often times having to give their opinions or smart comments. It turns you into a very inward place of misunderstanding. Chronic illness is very lonely but it also makes you realize who and what matters in life. Who loves you, who is there for the long haul, and what a strong person you are even on the days you don’t think you are.”
I could actually go on forever but I am going to stop. Unless someone comes up to me and says something stupid then I will be back here writing it down. For some reason I think I be seeing you real soon :)
June is Myasthenia Gravis Awareness Month
It is Myasthenia Gravis Awareness Month!
Imagine...
...waking in the morning and having to lay there for up to a 1/2 hour to get out of bed.
...wanting to clean your house and once you start you are forced to sit down because your muscles can't handle being over worked. Some days nothing gets done except the essentials.
...taking a shower and having a hard time washing your hair, then having to rest because a shower is exhausting.
...waking in the middle of the night choking and/or having shortness of breath when doing anything physical.
...not being able to have a job when you want one and then listening to others complain about theirs.
...having a passion for reading but once you start the words become one big black blurry blob or you see 2 of everything. Other times your eye droops down so far it causes more vision issues.
...feeling sick and fatigued all the time and you are unable to even describe it to help people understand. Most don't.
...people saying to you, 'all you need it is to get out more.' which leads to the frustration and more loneliness that no one understands.
...not being able to enjoy summer because the heat exasperates all your symptoms and just plain makes you sick.
...watching the people who really do love and care about you worry constantly and sometime obsessively.
...never making plans because you usually have to cancel anyways.
...I don't have to imagine because I live it. This is Myasthenia Gravis.
....One more thing...Imaging how blessed you feel because you really are one of the luckiest people in the world because illness has taught you what really matters in life. I am and I know!!
Imagine...
...waking in the morning and having to lay there for up to a 1/2 hour to get out of bed.
...wanting to clean your house and once you start you are forced to sit down because your muscles can't handle being over worked. Some days nothing gets done except the essentials.
...taking a shower and having a hard time washing your hair, then having to rest because a shower is exhausting.
...waking in the middle of the night choking and/or having shortness of breath when doing anything physical.
...not being able to have a job when you want one and then listening to others complain about theirs.
...having a passion for reading but once you start the words become one big black blurry blob or you see 2 of everything. Other times your eye droops down so far it causes more vision issues.
...feeling sick and fatigued all the time and you are unable to even describe it to help people understand. Most don't.
...people saying to you, 'all you need it is to get out more.' which leads to the frustration and more loneliness that no one understands.
...not being able to enjoy summer because the heat exasperates all your symptoms and just plain makes you sick.
...watching the people who really do love and care about you worry constantly and sometime obsessively.
...never making plans because you usually have to cancel anyways.
...I don't have to imagine because I live it. This is Myasthenia Gravis.
....One more thing...Imaging how blessed you feel because you really are one of the luckiest people in the world because illness has taught you what really matters in life. I am and I know!!
My Painting- Chronic Storms - Chronic Sunshine
Chronic Storms - Chronic Sunshine
After years of struggling with chronic illness I have come to realize, not only the physical toll illness takes on your body, but also the emotional toll it takes on a person. Over the years, for me, it seems the emotional toll is much more complex than the physical symptoms I must deal with on a daily basis. Just writing this is an extremely emotional process.
With the physical toll I experience symptoms such as pain, extreme fatigue, weakness, vision problems, migraines, swallowing problems, shortness of breathe, and the going in and out of these symptoms at any given moment of each and every day. Waking up every day not knowing what I will be hit with on that particular day, accepting each of them as they slap you upside the head. Illness doesn't care if you have special plans for the day or that you may be in the middle of something and one of your symptoms decides to show its ugly face. Fortunately, today with so many medical advances and new medications available, physical symptoms in many cases can be controlled to some degree which help make life at least somewhat bearable.
With the emotional side of chronic illness the treatment is a little different. Many times, you, as the person facing the illness must deal with this issue on your own. It can be hard to find others who experience what you experience and it is very hard to find healthy people who really care enough to hear about your emotional struggle. Many times the healthy want to "fix" you or want to give you advice, when really all you need is for them to listen. Plain and simple, just listen. Even then it is very hard for people to do just that. Some will listen but few understand. Many times the listening turns into pity and that is exactly what a we do not need or want! In turn this just shuts you up and inevitiability you are forced to live in your own little bubble trying to deal with all the questions you have. Trying to process it all on a daily basis and never really finding any solutions as to why this is happening to you.
I have always dubbed the chronically ill person, "The Great Pretender" because that is absolutely who you become. When the question comes up, "how are you doing?" the answer is always, "fine." Just answering, "fine" makes it easier for me and much easier on the person asking. Very few people understand my answer of "fine" and what lies behind it. Plus, most figure you really are. Then, here it comes, within a matter of seconds, "Well, you sure do look good. " Almost as if to say, you can't really be sick if you look that good. I always laugh and say thanks, but think to myself well, if you saw me before the two hours it took me to get myself to this point I can almost guarantee you that you wouldn't be telling me I look good. Make up, hair, and cloths can turn a rat into a kitten.
Another funny thing I notice is some people think because you have become ill you are not the same person you were before the illness. In some repects that is true, you aren't. But deep inside you, in your soul, you are the same person God created you to be, that will never change. It is just that your body has turned against you and you have to deal with it everyday. Instead of your mind controlling what you can and can't do your body does it for you. Simple! You fight this for some time after becoming ill and then finally you start to give into it and just say ok you really ARE in charge. It really makes it so much easier to just surrender. The emotional tug of war can be brutal. Funny thing too is that once you come to grips with the way you must live now, other people do too. In most instances anyways.
All of this brings me to my painting which depicts the daily, hourly, moment by moment struggle of living with a chronic illness. You are constantly in a different part of my painting at any given moment. The sun may be shining bright and you feel great, whatever great is for you, and just like that WHAM in the matter of a span of a second, you are in the middle of a thunderstorm fighting to get out of it. Lighting flashes of pain attacking your body, or weakness that forces you to the ground, however it is your body decides to attack you. Other days you may be in the gray area, not feeling your best, but not feeling your worst either, this is how most of my days are now. Things are just ok but you are fine with that. It is what you get for the day and you embrace it. You may be able to the things you have to do with no energy left to do anything beyond that. Your social life becomes very limited so you enjoy every breathing moments you have with the people you love because who knows what tomorrow brings. My favorite moments!
You learn to live day to day no matter where you are on the painting. You hang onto the hope, the rainbow, that things will get better and someday you will be cured. We all must keep the hope! If there were no hope there would be no living, chronically ill or not.
Through all of this I have learned that I am a very blessed person! I have a husband who would go to the ends of the earth and back for me to help/make me feel better. Rich has sacrificed more for me than any other person on this earth. I adore him. He has showed me a love I never thought possible given out by another human being. I see the pain and worry in his face whenever I am very ill. It pains me more than the illness. My parents have been wonderful, always helping out when I let them or when I tell them I am not doing well. Our kids are amazing. They remind me life must go on and give me a reason to live my painting. Of course, Hunter and Addi no words need to be written when it comes to them except pure love, unconditional love, that puts the air in my lungs. Then there are those few select friends who can still handle the illness as it hits. I owe you all more than I could ever repay you except with my love! Your love enlightens me!
Now I've got to go live my painting, I hope you live your paining too, whatever it may look like in your life! We all have a painting that is the beauty of each of us as an individual!
God Bless!
Chronic Storms, Chronic Sunshine
After years of struggling with chronic illness I have come to realize, not only the physical toll illness takes on your body, but also the emotional toll it takes on a person. Over the years, for me, it seems the emotional toll is much more complex than the physical symptoms I must deal with on a daily basis. Just writing this is an extremely emotional process.
With the physical toll I experience symptoms such as pain, extreme fatigue, weakness, vision problems, migraines, swallowing problems, shortness of breathe, and the going in and out of these symptoms at any given moment of each and every day. Waking up every day not knowing what I will be hit with on that particular day, accepting each of them as they slap you upside the head. Illness doesn't care if you have special plans for the day or that you may be in the middle of something and one of your symptoms decides to show its ugly face. Fortunately, today with so many medical advances and new medications available, physical symptoms in many cases can be controlled to some degree which help make life at least somewhat bearable.
With the emotional side of chronic illness the treatment is a little different. Many times, you, as the person facing the illness must deal with this issue on your own. It can be hard to find others who experience what you experience and it is very hard to find healthy people who really care enough to hear about your emotional struggle. Many times the healthy want to "fix" you or want to give you advice, when really all you need is for them to listen. Plain and simple, just listen. Even then it is very hard for people to do just that. Some will listen but few understand. Many times the listening turns into pity and that is exactly what a we do not need or want! In turn this just shuts you up and inevitiability you are forced to live in your own little bubble trying to deal with all the questions you have. Trying to process it all on a daily basis and never really finding any solutions as to why this is happening to you.
I have always dubbed the chronically ill person, "The Great Pretender" because that is absolutely who you become. When the question comes up, "how are you doing?" the answer is always, "fine." Just answering, "fine" makes it easier for me and much easier on the person asking. Very few people understand my answer of "fine" and what lies behind it. Plus, most figure you really are. Then, here it comes, within a matter of seconds, "Well, you sure do look good. " Almost as if to say, you can't really be sick if you look that good. I always laugh and say thanks, but think to myself well, if you saw me before the two hours it took me to get myself to this point I can almost guarantee you that you wouldn't be telling me I look good. Make up, hair, and cloths can turn a rat into a kitten.
Another funny thing I notice is some people think because you have become ill you are not the same person you were before the illness. In some repects that is true, you aren't. But deep inside you, in your soul, you are the same person God created you to be, that will never change. It is just that your body has turned against you and you have to deal with it everyday. Instead of your mind controlling what you can and can't do your body does it for you. Simple! You fight this for some time after becoming ill and then finally you start to give into it and just say ok you really ARE in charge. It really makes it so much easier to just surrender. The emotional tug of war can be brutal. Funny thing too is that once you come to grips with the way you must live now, other people do too. In most instances anyways.
All of this brings me to my painting which depicts the daily, hourly, moment by moment struggle of living with a chronic illness. You are constantly in a different part of my painting at any given moment. The sun may be shining bright and you feel great, whatever great is for you, and just like that WHAM in the matter of a span of a second, you are in the middle of a thunderstorm fighting to get out of it. Lighting flashes of pain attacking your body, or weakness that forces you to the ground, however it is your body decides to attack you. Other days you may be in the gray area, not feeling your best, but not feeling your worst either, this is how most of my days are now. Things are just ok but you are fine with that. It is what you get for the day and you embrace it. You may be able to the things you have to do with no energy left to do anything beyond that. Your social life becomes very limited so you enjoy every breathing moments you have with the people you love because who knows what tomorrow brings. My favorite moments!
You learn to live day to day no matter where you are on the painting. You hang onto the hope, the rainbow, that things will get better and someday you will be cured. We all must keep the hope! If there were no hope there would be no living, chronically ill or not.
Through all of this I have learned that I am a very blessed person! I have a husband who would go to the ends of the earth and back for me to help/make me feel better. Rich has sacrificed more for me than any other person on this earth. I adore him. He has showed me a love I never thought possible given out by another human being. I see the pain and worry in his face whenever I am very ill. It pains me more than the illness. My parents have been wonderful, always helping out when I let them or when I tell them I am not doing well. Our kids are amazing. They remind me life must go on and give me a reason to live my painting. Of course, Hunter and Addi no words need to be written when it comes to them except pure love, unconditional love, that puts the air in my lungs. Then there are those few select friends who can still handle the illness as it hits. I owe you all more than I could ever repay you except with my love! Your love enlightens me!
Now I've got to go live my painting, I hope you live your paining too, whatever it may look like in your life! We all have a painting that is the beauty of each of us as an individual!
God Bless!
Chronic Storms, Chronic SunshineReturning- We Carry A Center That Is Always Returning
I think it amazing how Rich and I can discuss something and a few days later I read something that pertains to it so perfectly. We talking about how many times you are really in the moment you are in. How it seems we are always a step ahead of ourselves thinking about the next thing we have to get done instead of being fully present in the exact moment we are in.
This is what I read a couple days later:
We all stray from the moment in particular ways. If we meet someone and begin a new relationship, it isn't long before we're walking hand in hand, while wondering if we will sleep together; and if and when we do , we wonder if we will live together; and if and when we do, we are wondering if we will have children-and on and on.
This happens with fear, and pain as well. In diagnosis, I feared surgery. In surgery, I feared treatment. In treatment, I feared stronger treatment. In recover, I feared recurrence.
No one can avoid the straying, but our health depends on the breath that stops us from straying further. No matter how far we've gone, it is the practice of returning to whatever moment we are living now that restores us, because only when fully in each moment can we draw strength from the Oneness of things.-Mark Nepo
If there is one thing I have learned the past few years it is this, living in the moment. Clouding out all else that exist and focusing only on the moment I/we are in. It makes those moment so much more enjoyable and special. It is like I want to soak up all I can in that moment and remember it all. Illness changes things. You look at the simple moments in life so much differently.
Be aware of your moments and live them as if they are your last. You never know, they just might be.
This is what I read a couple days later:
We all stray from the moment in particular ways. If we meet someone and begin a new relationship, it isn't long before we're walking hand in hand, while wondering if we will sleep together; and if and when we do , we wonder if we will live together; and if and when we do, we are wondering if we will have children-and on and on.
This happens with fear, and pain as well. In diagnosis, I feared surgery. In surgery, I feared treatment. In treatment, I feared stronger treatment. In recover, I feared recurrence.
No one can avoid the straying, but our health depends on the breath that stops us from straying further. No matter how far we've gone, it is the practice of returning to whatever moment we are living now that restores us, because only when fully in each moment can we draw strength from the Oneness of things.-Mark Nepo
If there is one thing I have learned the past few years it is this, living in the moment. Clouding out all else that exist and focusing only on the moment I/we are in. It makes those moment so much more enjoyable and special. It is like I want to soak up all I can in that moment and remember it all. Illness changes things. You look at the simple moments in life so much differently.
Be aware of your moments and live them as if they are your last. You never know, they just might be.
My Story
When I was pregnant for Richie, he is 20 now, I had a terrible pregnancy. I never recovered after it. I continued to feel extreme fatigue, pain, and aches. I saw a Rhematologist, Dr Martin a jerk to say the least, when Richie was 2 and he said it was Fibromyalgia, so I just lived with the pain and fatigue on a daily basis never believing that is actually what I had, and if it was I always believed there was more going on then that. I never took any meds because I just thought I can fight this and at this time there wasn't much known about fibro. A few years later I couldn't take the pain so my primary doctor started me on Bextra which helped with my pain. Finally some relief. Problem was the FDA banned Bextra a few years later because they found it was causing heart problems in patients.
Over the years the pain became much worse. Joint pain, hands were swollen all the time and I was dropping things, low grade fevers on a daily basis, severe fatigue, stiffness especially in the morning and when I slept or sat for any amount of time, muscle weakness, problems with my eyes. Then one day I woke up and my right eye was drooping half way shut. It was crazy. I started to become even weaker unable to lift my hands over my head for any amount of time. Stirring when I cooked something was next to impossible. I would start something and have to stop to rest in between. My vision started to become worse but I blew it off to getting old, thinking this is just what happens. I would get my eyes checked and new glasses and have to continue to go back saying this prescription isn't right. I continued to just live with it. I was forced to quit working in the beauty salon about 11 years ago because I just couldn't do it anymore.
In September of 2006 I was at a point where I was in so much pain especially at night. I literally was screaming out in pain. I must have been much worse than I thought because my kids would ask me why I was screaming and moaning at night when I was sleeping. In the morning I would have to walk down the steps stiff as a board, one step at a time, holding the banister and listening to my knees grind together like sand in your hands. I decided it was time to see another Rheumatologist, Dr. Jolene Key, she was amazing. I had never been to a doctor who spent so much time with me and who wanted to know every detail. At that first visit she said, you do not have fibro and something else is going on, we are going to try to figure this out. Finally! A doctor who was going to help me. She ordered all kinds of blood tests and there were a few that were not normal. I had a positive ANA, these are auto antibodies in your blood, along with SSA and SSB anitbodies. This pointed to autoimmune disease and with my symptoms she diagnosed me with Inflammatory Arthrittis. She started me on a medication and I began to feel somewhat better.
She said there are hundreds of autoimmune diseases and sometimes it is very hard to pinpoint the exact disease it may be.
A few months after I began seeing Dr Key my sinus' became very plugged. I had a CT scan and was started on a strong antibiotic for three weeks. Then had another CT after the three weeks that showed no change what so ever. I was sent to an ENT who said there was no way this would get better so I needed to have surgery to fix the problem. So February 2007 I went under the knife and had my sinus' cleaned out. It was the worst surgery a person could ever imagine. Mind you, I had my gallbladder out and a hysterectomy which were a breeze compared to this. We were hoping the droopy eyelid was being caused by the plugged sinus'. Boy were we wrong.
Almost immediately after the surgery things began to get much worse. My eye drooped more. My vision became so bad that I had to keep my eyes closed when I talked to people because it felt like my eyes were moving all over the place. I was unable to read or look at anything. Any kind of light, bright or low, made me bonkers. I wore sunglasses even in the house. We had to keep the shades shut all the time and the light low or off. I couldn't look up or to the right or left without double vision. It was like living in hell to say the least. I was so weak I couldn't even get off the couch. I couldn't hold my head up without using my arm or resting it on the couch. If I did get up after a few minutes I would get so weak I would have to get back to the couch to lay down. I felt like jello all the time.
By the end of February I saw a Neurologist which was like a nightmare. Test after test after test. Long story. He told me I had Myasthenia Gravis, which is another autoimmune disease. He started me on high dose steroids which helped somewhat, especially with my eyes. He referred me to another doctor whom I know see on a regular basis, Dr. Christopher Glisson a Neuro-Opthamologist.
I take many medications which help me with most symptoms but because there are no cures it really is a matter of controlling the symptoms with the meds. Currently I am in the process of possibly changing meds because the one I am currently taking it not working so great for my eyes or my muscle weakness. I am once again back to not being able to read, having more trouble focusing and it is like I live in a big world of blur. I continue to change my glasses 2x a year hoping this will be the time I get the right prescription, with no help.I found out this year many people with MG have this same issue.
Although I am happy to report, compared to where I was, I am happy to just be able to get out to grocery shop or hang out with my family. I still get very weak. I almost always have someone with me in case I get weak and can't drive or need help checking out a the store. There are times I am in the store and will say to Rich or whoever I am with I have to sit. It is funny cause I have actually sat in the cloths department on the shelves before. I just have to laugh at myself or I will cry. When you get that weak it makes you want to cry for some reason. Which of course when I am good and I think about it I laugh.
My life is very limited but my life is very good. I have a man who is amazing. He is my rock. If not for him I am not sure where I would be. He always told me,and still does, you are going to get better especially when I was really sick. I cried all t he time and would say I don't think I am, I just want to die. He would just put his arms around me and tell me, yes you are don't talk like that.
I still need help with everything. I do as much as I can around the house but that doesn't leave much for having any social life. It seems we live in our own little world as sickness is hard on friendships. People really do care but most people just want you to be better and when that doesn't happen it is hard for them to understand. We have a strong faith in God and that is what helps us through each day. I am blessed beyond measure and I know all of this is happening for a reason. I figure now I can understand others when they are ill and I know not only the physical toll lit takes on a person but the emotional toll. It isn't easy wondering what each day will bring but when you have the people you love surrounding you, you realize that is all that matters in life. I don't sweat the small stuff anymore. Material things mean nothing to me. Things to me are medicines, devices to control pain, having people around to help hold me up, etc. You get the picture. Now you can understand why I love facebook so much. It gives me a look into the life that goes on out in the world. I truly appreciate everyone of my friends who inspire me everyday. Thank you to all of you!
Love is all that really matters.
Over the years the pain became much worse. Joint pain, hands were swollen all the time and I was dropping things, low grade fevers on a daily basis, severe fatigue, stiffness especially in the morning and when I slept or sat for any amount of time, muscle weakness, problems with my eyes. Then one day I woke up and my right eye was drooping half way shut. It was crazy. I started to become even weaker unable to lift my hands over my head for any amount of time. Stirring when I cooked something was next to impossible. I would start something and have to stop to rest in between. My vision started to become worse but I blew it off to getting old, thinking this is just what happens. I would get my eyes checked and new glasses and have to continue to go back saying this prescription isn't right. I continued to just live with it. I was forced to quit working in the beauty salon about 11 years ago because I just couldn't do it anymore.
In September of 2006 I was at a point where I was in so much pain especially at night. I literally was screaming out in pain. I must have been much worse than I thought because my kids would ask me why I was screaming and moaning at night when I was sleeping. In the morning I would have to walk down the steps stiff as a board, one step at a time, holding the banister and listening to my knees grind together like sand in your hands. I decided it was time to see another Rheumatologist, Dr. Jolene Key, she was amazing. I had never been to a doctor who spent so much time with me and who wanted to know every detail. At that first visit she said, you do not have fibro and something else is going on, we are going to try to figure this out. Finally! A doctor who was going to help me. She ordered all kinds of blood tests and there were a few that were not normal. I had a positive ANA, these are auto antibodies in your blood, along with SSA and SSB anitbodies. This pointed to autoimmune disease and with my symptoms she diagnosed me with Inflammatory Arthrittis. She started me on a medication and I began to feel somewhat better.
She said there are hundreds of autoimmune diseases and sometimes it is very hard to pinpoint the exact disease it may be.
A few months after I began seeing Dr Key my sinus' became very plugged. I had a CT scan and was started on a strong antibiotic for three weeks. Then had another CT after the three weeks that showed no change what so ever. I was sent to an ENT who said there was no way this would get better so I needed to have surgery to fix the problem. So February 2007 I went under the knife and had my sinus' cleaned out. It was the worst surgery a person could ever imagine. Mind you, I had my gallbladder out and a hysterectomy which were a breeze compared to this. We were hoping the droopy eyelid was being caused by the plugged sinus'. Boy were we wrong.
Almost immediately after the surgery things began to get much worse. My eye drooped more. My vision became so bad that I had to keep my eyes closed when I talked to people because it felt like my eyes were moving all over the place. I was unable to read or look at anything. Any kind of light, bright or low, made me bonkers. I wore sunglasses even in the house. We had to keep the shades shut all the time and the light low or off. I couldn't look up or to the right or left without double vision. It was like living in hell to say the least. I was so weak I couldn't even get off the couch. I couldn't hold my head up without using my arm or resting it on the couch. If I did get up after a few minutes I would get so weak I would have to get back to the couch to lay down. I felt like jello all the time.
By the end of February I saw a Neurologist which was like a nightmare. Test after test after test. Long story. He told me I had Myasthenia Gravis, which is another autoimmune disease. He started me on high dose steroids which helped somewhat, especially with my eyes. He referred me to another doctor whom I know see on a regular basis, Dr. Christopher Glisson a Neuro-Opthamologist.
I take many medications which help me with most symptoms but because there are no cures it really is a matter of controlling the symptoms with the meds. Currently I am in the process of possibly changing meds because the one I am currently taking it not working so great for my eyes or my muscle weakness. I am once again back to not being able to read, having more trouble focusing and it is like I live in a big world of blur. I continue to change my glasses 2x a year hoping this will be the time I get the right prescription, with no help.I found out this year many people with MG have this same issue.
Although I am happy to report, compared to where I was, I am happy to just be able to get out to grocery shop or hang out with my family. I still get very weak. I almost always have someone with me in case I get weak and can't drive or need help checking out a the store. There are times I am in the store and will say to Rich or whoever I am with I have to sit. It is funny cause I have actually sat in the cloths department on the shelves before. I just have to laugh at myself or I will cry. When you get that weak it makes you want to cry for some reason. Which of course when I am good and I think about it I laugh.
My life is very limited but my life is very good. I have a man who is amazing. He is my rock. If not for him I am not sure where I would be. He always told me,and still does, you are going to get better especially when I was really sick. I cried all t he time and would say I don't think I am, I just want to die. He would just put his arms around me and tell me, yes you are don't talk like that.
I still need help with everything. I do as much as I can around the house but that doesn't leave much for having any social life. It seems we live in our own little world as sickness is hard on friendships. People really do care but most people just want you to be better and when that doesn't happen it is hard for them to understand. We have a strong faith in God and that is what helps us through each day. I am blessed beyond measure and I know all of this is happening for a reason. I figure now I can understand others when they are ill and I know not only the physical toll lit takes on a person but the emotional toll. It isn't easy wondering what each day will bring but when you have the people you love surrounding you, you realize that is all that matters in life. I don't sweat the small stuff anymore. Material things mean nothing to me. Things to me are medicines, devices to control pain, having people around to help hold me up, etc. You get the picture. Now you can understand why I love facebook so much. It gives me a look into the life that goes on out in the world. I truly appreciate everyone of my friends who inspire me everyday. Thank you to all of you!
Love is all that really matters.
Subscribe to:
Posts (Atom)