These days it seems there are so many studies out there for the stupidest things. I often wonder about how much money is wasted on all the studies that are so stupid and useless. For what? To prove a point? I try my best not to listen to the news or read the news because I just can't take it anymore. It stresses me out so why listen to it? Speaking of stress did you know there was a study on what to do to ease the stress in your life? One of the things to do is swim in salt water. Hummm, I especially love that since we are surrounded by the Great Lakes and unless I buy a Morton salt farm we are not swimming in salt water here.
I love tea. Flavored at that but I just heard there was a study done on green tea and you probably shouldn't drink it because it could have lead in it. What? The tea that is suppose to change your life if you drink it faithfully. Lucky for me I think it takes like ass so I'll get my lead out of the air I breath the same way I have for fifty years. Geeze people studies on green tea? Come on. Plus, does a study really make anyone on the planet do or not do something? We all have our likes so if you drink coffee or tea I'm almost certain a million dollar study on it won't change your mind on which you prefer.
The other day I read how vitamin D, which is all the rage in the medical community, isn't going to help heart disease like the first studies proved it would. Really? Humm. I just don't understand it. Why not? The gazillion dollar study five years ago said it was the greatest vitamin to take. I often think to myself when I read things like this that if you have a genetic make up for heart disease you are pretty doomed and even if you don't you might still be doomed. People drop dead everyday of heart attacks, family history or no family history. My mother is proof of this over the past few years as she exercises two times a day and eats very healthy still has heart issues. The funniest part to me is the fact that now days we think we can live forever. Hahaha cracks me up! Fact: We are all going to die. We don't need a study for that one. I don't care how young you look or the measures you take to look young, how much exercise you do, or how well you eat, You ARE going to die. My take is I try to take care of myself the best I can. Perfect? Heck no but I don't care. Life is hard and we should all try to enjoy it the best we can. With all the crap that comes along and slaps us upside the head we need to have our enjoyments in life. Truthfully if I never have to hear about another study for the rest of my life it will still be too soon.
In the end if there were one thing I wish we could do about all these studies it would be to take all that wasted money and start taking care of our poor or use it to provide food to the starving. How many studies do we hear about this issue? Truthfully it annoys the hell out of me how senseless medical studies override the much more important issues many people face today. But then my humble opinion means nothing. On we go living our lives until we hear the next senseless words being said or printed about this or that new study. What else are we gonna do?
God Bless!
Dianne
Monday, December 16, 2013
Wednesday, December 11, 2013
Autoimmune Delusion or Confusion
Yesterday there was a video going around about autoimmune disease and how food can cure it. I was interested so I watched the video. I thought to myself this is great all I have to do is eat carrots and peas everyday and I will be cured. Insert sarcasm here. I couldn't believe the way the doctor or who ever it was that was talking was actually making it sound like autoimmune diseases are no big deal and meds are not the answer. Then I thought to myself, Yup another so called specialist who has never experienced or doesn't know a single soul with autoimmune disease talking about cures. I'm pretty sure if food were a cure there wouldn't be any Rheumatologists, Neurologist, etc out there in the field. Funny because watching the video it all sounded so cut and dry and so simple, or is it? I wonder what this guy would tell someone who wakes up at night with knives stabbing in their joints even after eating vegetable soup all day. I wonder what he would tell someone who has Myasthenia Gravis and can't move their muscles because there is a blockage of signals going to the muscles due to autoimmune antibodies in their blood. I wonder about a million other symptoms and diseases he has never lived with. I wonder if it were him if his mind would change on his words that make people like me somewhat angry. I am not saying diet doesn't help people. I know it does because I know people who use it as their own treatment. That's great! But there are those of us who need drugs whether the world understands or not. We just do. We all must do what works for us and as with any treatment for any medical issue one might work for one person and not for another. I found the link to this story if anyone would like to watch it. Or Google Fox News on Autoimmune disease and it should show up on the page:
http://www.foxnews.com/health/2013/11/19/kitchen-cures-for-autoimmune-disease/
With all that being said last night a AARDA (American Autoimmune Related Diseases Association) came out with their response: American Autoimmune Related Diseases Association (AARDA)
Many of you viewed Fox News "Autoimmune Disease" segment that was broadcast on Sunday. This is AARDA's response.
"This past Sunday’s “House Call” on FOX News Channel (December 8, 2013) underscores just how little the medical community knows about autoimmune diseases – and how much they could benefit from ongoing physician education. With all due respect to FOX and the show’s co-hosts, Dr. David Samadi and Dr. Marc Siegel, the segment was full of misinformation.
First, we at AARDA (American Autoimmune Related Diseases Association Inc.) and the many autoimmune disease patients who have posted comments on AARDA’s Facebook page, were shocked to hear the doctors discussing diet as the cause of autoimmune diseases.
There is no credible medical research of which I or a member of AARDA’s Scientific Advisory Board are aware that verifies Dr. Samadi’s claims that sugar, milk, meat, trans fats or processed foods cause autoimmune diseases. None of these have been shown to prompt the autoimmune response. The one exception is gluten in people who suffer from autoimmune celiac disease.
Sugar, it has been suggested, may increase the inflammation associated with autoimmunity but has not been proven to cause autoimmunity. Eating fruits and vegetables that contain anti-oxidants can help to reduce inflammation, but doing so does not prevent the inflammation from occurring – again, that is a result of an autoimmune response.
However, to suggest that diet causes autoimmune disease was erroneous and misleading and a real disservice to the millions of Americans living and coping with diseases that are serious and, in some instances, life-threatening illnesses. To suggest to a young, female lupus patient who has lost a kidney that it was her fault because she ate too much sugar is irresponsible. We imagine FOX’s own broadcast anchor, Neil Cavuto, who suffers from multiple sclerosis, would be surprised to learn his disease is his own fault because he eats meat.
Also misleading was the co-mingling of Type 1 and Type 2 diabetes. Type 2 diabetes is not an autoimmune disease and while diet certainly does play a role in its onset, the intake of sugar has never been shown to cause Type 1, the autoimmune version of the disease.
There are more than 100 known autoimmune diseases that are classified as rheumatologic, dermatologic, neurologic, gastroenterologic, endocrinologic, multi-system, etc. For physicians to take this umbrella category of disease and term it a “syndrome” on national television again demonstrates the need for increased physician education which is becoming an increased focus for AARDA.
Autoimmune diseases are wide-ranging and complex. They require care by skilled, experienced physicians. Improving the American diet is an important, laudable goal, but no substitute for the tested and proven treatments increasingly available for many of the autoimmune disorders.
-----------------------------------
I don't know about you but I am thankful for a voice for all of us. All of us who live it and have to listen to people downgrade our diseases like they are all made up or something. We all do the best we can whether it includes a good diet alone or along with drugs. In the end it is our own decisions we make on how to deal with our pain and suffering because of what autoimmune disease does to us.
God Bless!
Dianne
http://www.foxnews.com/health/2013/11/19/kitchen-cures-for-autoimmune-disease/
With all that being said last night a AARDA (American Autoimmune Related Diseases Association) came out with their response: American Autoimmune Related Diseases Association (AARDA)
Many of you viewed Fox News "Autoimmune Disease" segment that was broadcast on Sunday. This is AARDA's response.
"This past Sunday’s “House Call” on FOX News Channel (December 8, 2013) underscores just how little the medical community knows about autoimmune diseases – and how much they could benefit from ongoing physician education. With all due respect to FOX and the show’s co-hosts, Dr. David Samadi and Dr. Marc Siegel, the segment was full of misinformation.
First, we at AARDA (American Autoimmune Related Diseases Association Inc.) and the many autoimmune disease patients who have posted comments on AARDA’s Facebook page, were shocked to hear the doctors discussing diet as the cause of autoimmune diseases.
There is no credible medical research of which I or a member of AARDA’s Scientific Advisory Board are aware that verifies Dr. Samadi’s claims that sugar, milk, meat, trans fats or processed foods cause autoimmune diseases. None of these have been shown to prompt the autoimmune response. The one exception is gluten in people who suffer from autoimmune celiac disease.
Sugar, it has been suggested, may increase the inflammation associated with autoimmunity but has not been proven to cause autoimmunity. Eating fruits and vegetables that contain anti-oxidants can help to reduce inflammation, but doing so does not prevent the inflammation from occurring – again, that is a result of an autoimmune response.
However, to suggest that diet causes autoimmune disease was erroneous and misleading and a real disservice to the millions of Americans living and coping with diseases that are serious and, in some instances, life-threatening illnesses. To suggest to a young, female lupus patient who has lost a kidney that it was her fault because she ate too much sugar is irresponsible. We imagine FOX’s own broadcast anchor, Neil Cavuto, who suffers from multiple sclerosis, would be surprised to learn his disease is his own fault because he eats meat.
Also misleading was the co-mingling of Type 1 and Type 2 diabetes. Type 2 diabetes is not an autoimmune disease and while diet certainly does play a role in its onset, the intake of sugar has never been shown to cause Type 1, the autoimmune version of the disease.
There are more than 100 known autoimmune diseases that are classified as rheumatologic, dermatologic, neurologic, gastroenterologic, endocrinologic, multi-system, etc. For physicians to take this umbrella category of disease and term it a “syndrome” on national television again demonstrates the need for increased physician education which is becoming an increased focus for AARDA.
Autoimmune diseases are wide-ranging and complex. They require care by skilled, experienced physicians. Improving the American diet is an important, laudable goal, but no substitute for the tested and proven treatments increasingly available for many of the autoimmune disorders.
-----------------------------------
I don't know about you but I am thankful for a voice for all of us. All of us who live it and have to listen to people downgrade our diseases like they are all made up or something. We all do the best we can whether it includes a good diet alone or along with drugs. In the end it is our own decisions we make on how to deal with our pain and suffering because of what autoimmune disease does to us.
God Bless!
Dianne
Tuesday, December 10, 2013
Christmas: Not Always A Happy Time For All
Here we go again. Christmas. The most overrated gift giving flush your money down the toilet holiday ever. Scrooge? Yup. I never look forward to Christmas. Yes, when I was a child and truthfully up until the time I was 18 I liked Christmas. I am a giver so for me Christmas was always one of my favorite times of the year. If I could give someone something, anything, even a small homemade gift it would warm my heart. I always loved to make people happy and I still do but it all changed after that 18th Christmas. One of my best friends was killed in a car accident on Christmas Eve oh so long ago. Christmas was never the same after that. When Tim died a part of me died with him and it hasn't come back. It was like someone ripped part of my heart out of my chest and never returned it. Tim was more like a brother and quite honestly my first love. He stole my heart with all his kindness and how he was with his words. He knew just what to say to a woman to make her swoon. His father had the same gift. I believe not many men have that gift to make a woman feel like she is the most beautiful woman in the room but they both did and they knew how to use it too. Lol. I have to believe that Tim wouldn't want me to dislike the Christmas season as much as I do but I'm pretty sure he would be the same way if the tables were turned. Plus, I think we run around buying all this stuff for people who will forget most of it a few months from now. It is pointless to me. Stuff is pointless. People, that is where it really is and what it is really about. Loving. Sharing. Caring.
When I look around at some of the people I know many of them suffer at Christmas too. Yes, it is a time of joy where were celebrate Jesus' birth and that part is the best part but the hurt that people suffer. The losses others have experienced and Christmas is not a joyous occasion for everyone out there. It becomes brutal for some to just get through December. Bad things still happen at Christmas time. People die. People get sick. Money problems become ever worse for some who are unable to even buy a gift for someone they love. Real life still happens. People are in pain and suffering still. It makes me wonder why we can't just get together and enjoy each other and that's all. People are really what matter not the stuff. Let's take back Christmas to a time where material things weren't more important than eating and just being able to buy food to put on the table and socialize. I get confused with all the garble. All the stuff. It annoys me. I wonder to myself if Tim had never died that Christmas Eve- would I feel the same way? I don't know. My heart still burns when I think of it. I can go back to that day every year. I wonder would I be out buying, buying, buying if Tim were still here? It is a good reflection this time of year for me. The wonder. I also wonder if I would feel differently if I were physically healthy and able to shop around like the real world. Would I be the same as the world or would I still be who I am at this time? Reflection it is a good thing.
Remember those who are suffering and hurting this holiday season. Open your eyes and see that they are all around you even if many years have passed since a loss. Hurts and losses never fade away they stay with us forever. It's okay though because that is how we grow. We learn to deal with the pains of life whether they are physical or emotional. We learn to deal with the hurts and move on trying to live without whatever it is we lost whether that be a person or our physical ability to live like we would like. We remember the hope we have in a baby born in a manger and the hope of seeing the ones we have lost. When you think about it, it is amazing how strong we really are in the midst of all the hurt. We continue to push on feeling a push from behind from the ones we lost telling us not to give up. We do it for them. We make it through another December and in January realize we really can do it!
God Bless!
Dianne
When I look around at some of the people I know many of them suffer at Christmas too. Yes, it is a time of joy where were celebrate Jesus' birth and that part is the best part but the hurt that people suffer. The losses others have experienced and Christmas is not a joyous occasion for everyone out there. It becomes brutal for some to just get through December. Bad things still happen at Christmas time. People die. People get sick. Money problems become ever worse for some who are unable to even buy a gift for someone they love. Real life still happens. People are in pain and suffering still. It makes me wonder why we can't just get together and enjoy each other and that's all. People are really what matter not the stuff. Let's take back Christmas to a time where material things weren't more important than eating and just being able to buy food to put on the table and socialize. I get confused with all the garble. All the stuff. It annoys me. I wonder to myself if Tim had never died that Christmas Eve- would I feel the same way? I don't know. My heart still burns when I think of it. I can go back to that day every year. I wonder would I be out buying, buying, buying if Tim were still here? It is a good reflection this time of year for me. The wonder. I also wonder if I would feel differently if I were physically healthy and able to shop around like the real world. Would I be the same as the world or would I still be who I am at this time? Reflection it is a good thing.
Remember those who are suffering and hurting this holiday season. Open your eyes and see that they are all around you even if many years have passed since a loss. Hurts and losses never fade away they stay with us forever. It's okay though because that is how we grow. We learn to deal with the pains of life whether they are physical or emotional. We learn to deal with the hurts and move on trying to live without whatever it is we lost whether that be a person or our physical ability to live like we would like. We remember the hope we have in a baby born in a manger and the hope of seeing the ones we have lost. When you think about it, it is amazing how strong we really are in the midst of all the hurt. We continue to push on feeling a push from behind from the ones we lost telling us not to give up. We do it for them. We make it through another December and in January realize we really can do it!
God Bless!
Dianne
Sunday, December 8, 2013
I'm Going to go Hide in the Garage
Christ really did suffer, as the innocent of the earth really do suffer. It's the ongoing tragedy of humans. Our lives and humanity are untity; disorganized and careworn. Life on earth is often a raunchy and violent experience. It can be agony just to get through the day.
And yet, I do believe there is ultimately meaning in the chaos, and also in the doldrums. What I resist is not the truth but when people put a pretty bow on scary things instead of saying, "This is a nightmare. I hate everything. I'm going to go hide in the garage." -From the book Stitches A Handbook On Meaning, Hope and Repair by Anne Lamott.
Wow! I couldn't have said it better myself. I struggle so much with this part of life. You know, the so called coverups of life, as I would call them at least. The lies we tell every time we run into someone or talk to someone. How are you? Fine, ok, good. When inside we are a raging fire. Maybe because of illness or because we are hurting for someone else or ourselves. Why can't we just say it? Why do we always have to act like it is all fine and dandy? We all suffer. We all have our stuff so why is it so hard to let down our guard and stop pretending all the time? After this past week I want to climb on top of a tall, very tall, building and scream out life sucks. It sucked this week more than it has sucked in a long, long time. I was basically glued to the couch and it took every ounce of my being to peel myself off the couch to do much of anything. The worst part was that I just didn't care about anything. I felt so weak and sick that it didn't even matter to me. Whatever. One of those weeks I wished it would all end, and the sooner the better. I'm pretty certain if someone had asked me last Wednesday how I was doing and I said sucky and I am sick of this crap, they would have shyed away from me real fast. Even better what if I said as Anne did, "I'm going to go hide in the garage," that would have thrown someone into a tailspin and left them reeling for the "right" words to comfort me. The problem is sometimes words don't matter, sometimes people just have to sink in their garage until it is time to come out. What the heck is wrong with that? It's time we start being honest with one another and not hide everything behind the perfect bubble we are told we ought to be living in. It's life and it ain't perfect. Period!
It's funny because I really wanted to write this a few days ago when I was still working my way out of the garage but I didn't make it to the computer. I sit here now writing with a smirk on my face because I think some of it sounds foolish but truthfully nothing is foolish when you are in the garage. It is real. It is at the core of your being and sometimes it can eat you alive if you let it. But you don't. You can't. You fight because you know it will get better. It always does. Plus, being a Christian I always think to myself this is nothing compared to what Christ went through. The ultimate suffering and here I lay on my nice comfy couch with the remote in my hand while my puppy licks my face and sleeps on my pillow. Really? I can't do this? Ummm yes I think I can. I will. It's possible even on the days it seems like it isn't, even on the days I want to hide in the garage.
God Bless!
Dianne
And yet, I do believe there is ultimately meaning in the chaos, and also in the doldrums. What I resist is not the truth but when people put a pretty bow on scary things instead of saying, "This is a nightmare. I hate everything. I'm going to go hide in the garage." -From the book Stitches A Handbook On Meaning, Hope and Repair by Anne Lamott.
Wow! I couldn't have said it better myself. I struggle so much with this part of life. You know, the so called coverups of life, as I would call them at least. The lies we tell every time we run into someone or talk to someone. How are you? Fine, ok, good. When inside we are a raging fire. Maybe because of illness or because we are hurting for someone else or ourselves. Why can't we just say it? Why do we always have to act like it is all fine and dandy? We all suffer. We all have our stuff so why is it so hard to let down our guard and stop pretending all the time? After this past week I want to climb on top of a tall, very tall, building and scream out life sucks. It sucked this week more than it has sucked in a long, long time. I was basically glued to the couch and it took every ounce of my being to peel myself off the couch to do much of anything. The worst part was that I just didn't care about anything. I felt so weak and sick that it didn't even matter to me. Whatever. One of those weeks I wished it would all end, and the sooner the better. I'm pretty certain if someone had asked me last Wednesday how I was doing and I said sucky and I am sick of this crap, they would have shyed away from me real fast. Even better what if I said as Anne did, "I'm going to go hide in the garage," that would have thrown someone into a tailspin and left them reeling for the "right" words to comfort me. The problem is sometimes words don't matter, sometimes people just have to sink in their garage until it is time to come out. What the heck is wrong with that? It's time we start being honest with one another and not hide everything behind the perfect bubble we are told we ought to be living in. It's life and it ain't perfect. Period!
It's funny because I really wanted to write this a few days ago when I was still working my way out of the garage but I didn't make it to the computer. I sit here now writing with a smirk on my face because I think some of it sounds foolish but truthfully nothing is foolish when you are in the garage. It is real. It is at the core of your being and sometimes it can eat you alive if you let it. But you don't. You can't. You fight because you know it will get better. It always does. Plus, being a Christian I always think to myself this is nothing compared to what Christ went through. The ultimate suffering and here I lay on my nice comfy couch with the remote in my hand while my puppy licks my face and sleeps on my pillow. Really? I can't do this? Ummm yes I think I can. I will. It's possible even on the days it seems like it isn't, even on the days I want to hide in the garage.
God Bless!
Dianne
Friday, November 29, 2013
Thankful
When I got up yesterday, Thanksgiving Day, I thought to myself what are you thankful for? I must be honest I try to do that everyday, be thankful, even on the days I am pissed off for feeling like crap. I believe if I gave into the crap of illness and what it takes away from me on a daily basis I would not be a happy person at all. I can't let it win as I have written many times before. If we give in then there is no reason to be here and if you are here, reading this and breathing, then there is a reason you are here.
Thankful. Humm. My thankful looks different than the rest of the world. I am sure of that. Don't get me wrong, I am thankful for all the things the real world is thankful for and I thank God everyday for those blessings. After the past six months or so since stopping my arthritis medications there were the days I found it hard to be thankful for more than my family and the fact that I got out of bed on any given day. The selling of our house has added so much extra stress that I can't keep my head on straight. It is hard to explain when your body is not only constantly sending pain signals or whatever else signals to your head and on top of that having to keep a house clean to be ready at any minute to bolt out the door. Living out of the car is tiring. Pack up the crap we need and then after the showings bring it back in. I am hopeful the papers will be signed and we can put all of that behind us. Thankful for an ending to this chapter of our life.
This past week I saw a new doc and I am thankful for a really good connection. See, here is my thankful list for now, medical. I am thankful for drugs. I need them. Period. It doesn't matter how many people think, if you only did this, or you only did that, you would be fine. Yes, lifestyle helps but it doesn't take it away like the world thinks. Until it happens to you, you can never understand. When you are in so much pain or a joint is swollen, painful, and makes it hard for you to do much, even pick of your glass of water , you will never understand. I am almost sure if you this did happen to you, you would like drugs too. I have cut back but I am still thankful for drugs.
Sleep. Since my surgery and being put into instant menopause, sleep wasn't a huge issue for me. ten to twelve hours a night was the norm, now seven or eight. Last night was a much better night with a whopping eight in bed and another hour on the couch with Eva this morning. I am thankful for the nights I can get good rest to help repair my body. It helps me so much during the day when my body is repaired even by that extra hour of sleep. I am thankful for sleep.
Mornings. Mornings are hard for the first hour or two. I get up and drink a glass of water and take my handful of pills. It takes a while to feel better and to oil the joints. After that hour or two I get moving even more. The routine is wake up, stretch in bed, call Eva and snuggle with her, then get up, get the coffee and go on the computer for a bit. Then I get off the computer and get moving, for me if I keep moving I do so much better. Sitting is hard on me and I assume anyone with chronic pain issues. I don't know because I cannot compare my pain to anyone else who struggles as I have said it is different for everyone. What I deal with someone else may not and vice versa. Mornings are the best for me after the initial wake up time. I get most of my work done in the morning because as the day progresses the pain gets worse. The fatigue sets in. I'm not sure if the pain is causing the fatigue or the fatigue pushes along the pain. It actually depends on what is giving me issues. The past month it has been my right elbow, before that it was my knee, it is a constant shifting of pain that never ends. My neck is an ongoing issue that I am sure will be a lifelong struggle. But you know what? I am thankful. Thankful for mornings I can get up, wake up, and do the things I need to do. I am blessed!
Like I always say in a lot of my blog post, "I could go on forever." The list never ends. There are many other issues I am dealing with right now physically that I am sure no one really cares to hear about, hell I don't even like thinking about them, but I am thankful. Thankful for my medical team that seems to finally be getting to where it needs to be. Thankful for the air I am able to breath everyday so I can enjoy the people I love. Thankful for you! Thankful you take the time to read my babble. Thankful and hopeful it helps you make sense of your life with chronic illness or thankful it helps you understand someone else you know who lives with chronic illness. After all if we are not here to love and support one another what is the reason? Thank you!
God Bless!
Dianne
Thankful. Humm. My thankful looks different than the rest of the world. I am sure of that. Don't get me wrong, I am thankful for all the things the real world is thankful for and I thank God everyday for those blessings. After the past six months or so since stopping my arthritis medications there were the days I found it hard to be thankful for more than my family and the fact that I got out of bed on any given day. The selling of our house has added so much extra stress that I can't keep my head on straight. It is hard to explain when your body is not only constantly sending pain signals or whatever else signals to your head and on top of that having to keep a house clean to be ready at any minute to bolt out the door. Living out of the car is tiring. Pack up the crap we need and then after the showings bring it back in. I am hopeful the papers will be signed and we can put all of that behind us. Thankful for an ending to this chapter of our life.
This past week I saw a new doc and I am thankful for a really good connection. See, here is my thankful list for now, medical. I am thankful for drugs. I need them. Period. It doesn't matter how many people think, if you only did this, or you only did that, you would be fine. Yes, lifestyle helps but it doesn't take it away like the world thinks. Until it happens to you, you can never understand. When you are in so much pain or a joint is swollen, painful, and makes it hard for you to do much, even pick of your glass of water , you will never understand. I am almost sure if you this did happen to you, you would like drugs too. I have cut back but I am still thankful for drugs.
Sleep. Since my surgery and being put into instant menopause, sleep wasn't a huge issue for me. ten to twelve hours a night was the norm, now seven or eight. Last night was a much better night with a whopping eight in bed and another hour on the couch with Eva this morning. I am thankful for the nights I can get good rest to help repair my body. It helps me so much during the day when my body is repaired even by that extra hour of sleep. I am thankful for sleep.
Mornings. Mornings are hard for the first hour or two. I get up and drink a glass of water and take my handful of pills. It takes a while to feel better and to oil the joints. After that hour or two I get moving even more. The routine is wake up, stretch in bed, call Eva and snuggle with her, then get up, get the coffee and go on the computer for a bit. Then I get off the computer and get moving, for me if I keep moving I do so much better. Sitting is hard on me and I assume anyone with chronic pain issues. I don't know because I cannot compare my pain to anyone else who struggles as I have said it is different for everyone. What I deal with someone else may not and vice versa. Mornings are the best for me after the initial wake up time. I get most of my work done in the morning because as the day progresses the pain gets worse. The fatigue sets in. I'm not sure if the pain is causing the fatigue or the fatigue pushes along the pain. It actually depends on what is giving me issues. The past month it has been my right elbow, before that it was my knee, it is a constant shifting of pain that never ends. My neck is an ongoing issue that I am sure will be a lifelong struggle. But you know what? I am thankful. Thankful for mornings I can get up, wake up, and do the things I need to do. I am blessed!
Like I always say in a lot of my blog post, "I could go on forever." The list never ends. There are many other issues I am dealing with right now physically that I am sure no one really cares to hear about, hell I don't even like thinking about them, but I am thankful. Thankful for my medical team that seems to finally be getting to where it needs to be. Thankful for the air I am able to breath everyday so I can enjoy the people I love. Thankful for you! Thankful you take the time to read my babble. Thankful and hopeful it helps you make sense of your life with chronic illness or thankful it helps you understand someone else you know who lives with chronic illness. After all if we are not here to love and support one another what is the reason? Thank you!
God Bless!
Dianne
Monday, November 25, 2013
The Ongoing Doc Quest
Yes I should be packing for the move but hey when the blog calls it calls and you just have to listen. I have been preparing for a new PCP doctors appointment over the past month. Yes, over the past month. I am sure when you go to the doc you don't even think about any sort of preparing besides finding the time to get there like taking the time away from your job, your kids, your life. For me it is much different. It is like an annoying mosquito bite that keeps itching and won't go away. ALL the stuff I have to write down to give the new doc so she/he can roll their eyes in amazement and probably wonder if I am a hypochondriac. I don't care anymore it is what it is. I have so many on going issues I can't even remember all of them at once, hence the reason it takes me a month to write them all down in my love note as my Rheumetologist refers to it.
My search for an PCP doc has been an ongoing issue for years and believe me I am not picky I just want to be cared for the way I should be cared for. This doc I am going to this week is a doc that my daughter worked with as her nurse in an Allendale office. I thought about switching to her long ago when Katie told me how good she was but I thought it not fair to Katie to go to a doc who would know all about me and I didn't want to put Katie in that position. You know, like every time she went to work the doc would look at her like, Oh ya your mom's crazy. It's true when you are ill you feel like that on so many levels. We all know no one understands but it is the absolute worse when your doc thinks you are crazy and blows things off. Well, long story short the doc left the practice and moved downtown by Spectrum Hospital. My mother has went to this doc even when she was at the office Katie worked at and she kept telling me to try her. My mom would tell me. "She is very good and will take great care of you." It just didn't feel right. After last years physical and being blown off by my current PA I decided I need to take control once again but this time I thought to myself I am not just going anywhere because of the convenience. I have serious issues going on and I need the right doc. I feel I may have finally made the right choice. Another reason I had I didn't change to her was that I wanted to stayin the Metro system because my Rheumatologist is a Metro doc and there is no way I am switching from her. It made appointments with her easier because she could look up any tests results I had on the metro system. Now I will have more work making sure test results are sent to her but I just had to make this switch on the quest for good care. I don't even care if I get great care, just good care. I don't need a doc as a friend I need a doc as someone who listens, gets it and takes care of me, that's all.
Finally! I have my two page essay ready for my new doc with all the info I could possible write in order to get her on the same page as me and my other docs. It is frustrating getting ready for these appointments but at the same time I am hopeful to resolve a few issues that need to be addressed. Ya, I know what you are thinking, 'She just had her suregery how can anything else be wrong?' Well, as I have wrote many times before in my blog and I am sure I will continue to say, "It never ends." It sucks and sometimes I want it all to end but then I think to myself if I give up then who wins? I can't allow the illness to win so I push on, pain and all. I do the best I can and most of all I refuse to give up on myself even when doctor's do.
God Bless!
Dianne
Wednesday, November 20, 2013
My Wish...I Wish...
My wish for you, do you know that song? A Rascal Flatts song that could be sang by anyone to anyone. Of course being a mother when it came out many years ago I thought of my kids and I still do every time I hear or it play it. It makes the water begin to roll down my cheeks. After all, we only want what is best for our children, our friends, our families. The best for them, this is my wish! I was thinking about wishes one day last week and I grabbed a piece of paper and started writing them down thinking this could be a good blog entry. I filled the paper front and back and slammed it into a book on the coffee table. I totally forgot about it until Hunter pulled it out the other night and asked me what it was. I told him it was my notes and I slammed it back in the book without much more thought. Last night as I was sitting there I pulled it out and read some of the stuff I wrote and thought to myself some of these are pretty good and slammed it back into the book. This morning when I got up I thought about that paper as the sun shined in through the windows. A beautiful day. A gift and I am still here. Get that piece of paper and write a blog. I know we all have our wishes. Big ones and small ones. So here you go, my wish list:
I wish:
-People shared more of themselves and were more real. We tell or post all the positive stuff in our lives but when hurts comes we hide them away or let them go painting this picture of a perfect life. We all struggle and it is okay to share those struggles. On the other hand it is important to be able to work on those struggles and not allow it to be our identity. This is what causes the pain inside us that just mounts ups in our hearts. Think about it.
-People didn't have to suffer. Physically or mentally. You know I'm going to put this one towards the top of the list because I suffer everyday in some way physically and at time mentally. I am blessed with a great support system that keeps me grounded mentally but the pain? No one can take that away besides the drugs and sometimes they don't work or I don't take them because I want to win.
-People lived what they preached to others. It is funny to me how we can preach something to someone else but then we do the complete opposite without even realizing it. Guilty.
-I would have followed more of my dreams. My dream came true to be a wife and mother and I was fortunate to have had that but somewhere along the way I lost myself. The kids left and the house is quiet and I don't like it very much. I still am not use to having them gone. I miss the noise. My wishes are not theirs.
-I could do something big to change the world. Ya, I know we all do little things that make a difference but I am talking something big to help people around the world. I have no idea what it would be because I never took the time to think about things that I might like to do because I was raising my kids, while they were raising me too. Changing the world was the last thing on my mind because they were my world.
-There was no money. It clouds everything out in life. Money, money, money. You have to have it to live but you don't have to live to have it. It's nice to have nice things and a roof over your head but we have taken the materialistic aspect of money way to far. Like Rich always says, "It's just money. A tool. Help others." So we do, probably why we don't have much. Ha but what are we going to do bury it with us? NO so help someone who needs it more than you do.
-I could live my life over at times. I would have went out with friends the night one of my best ones was killed and held him tightly before he left. I would have stopped the hayride where one of our friends daughter was killed. STOP! Don't go! I am here to save you so the world can be a better place because of you. Life doesn't work like that so when bad things happen to the ones you love you let them go physically while your heart still loves and thinks of them every single day. Death, the one thing we will never understand until we deal with our own.
-We could hear all the answers we need to hear in whatever situation we need to hear them or at least take the time to listen to ourselves and the answers that we may already know are there, but just don't want to face them. Life is hard. Things happen. People hurt us. I was just telling a friend last night that sometimes we are pushed by someone and we swerve off the side of the straight and narrow and we have to find our way back. It takes time. Why do people hurt us? Sometimes there is no answer or explanation they just do. I wonder if they suffer as much knowing they hurt you as you suffer knowing they hurt you. Hummm Or is it sometimes the fact that people don't even realize they are hurting you at all. We become mad or offended and they have no idea they did or said anything wrong. I know that happens a lot with me because I have no filter, things just come out. Authentic to me but hurtful to others I am sure.
-I wish age didn't matter. Really! You watch tv now and if you are over 40 you are screwed. You have wrinkles? Oh my gosh you need botox or this or that. Your boobs are sagging? Get them lifted. You have fat? Oh my gosh you fatass you are going to die tomorrow. Really? I'm going to die anyways no matter how much I fall into the trap of youthfulness. Embrace age! With age comes wisdom, use it and be proud you have it. You earned it. Each wrinkle is a gift you can give to the world. Don't fall into the trap, please! Nonsense and someone is getting rich off your stupidity and men still like saggy boobs. Oooops sorry, no filter there.
-We all knew the true meaning to life and why we are here. Yes, I know from a biblical sense why but I am talking the big picture. It is crazy when you start to think deeply about it. I try not to but when you are a very deep person it is hard. I ask Rich why all the time. He rolls his eyes saying nothing at times and we move on as usual.
-We all could put our phones down and be in a moment without anything coming at us. The world is getting out of control with all this technology. I know, I sound old. I am and I'm proud of it. Wrinkles, fat, and saggy boobs. It's just that there is no down time anymore. It is always available. I/we are guilty. I ask Rich a question he says. "I don't know google it." Really, it happens everyday. I see the electronics even changing our relationship and truthfully I'm not loving it. I told him last night I wonder how we raised three kids without the internet or google. Humm we looked at each other and pondered for a minute. No answer from either of us on that one.
-I wish when people walked into a room they didn't just go for the people they know and gather in their comfort zones. It makes no sense to me but it is what it is. Kindness, it really does matter whether you think it does or not. A minute to show someone you care. I try to figure out why we avoid caring for our fellow human beings and I think the biggest reason is because we always think it has to be a huge thing we do. Reality is that it can be simple and small. People just want to feel loved and know they matter it isn't rocket science. Seriously. Take a minute to care for someone even if it is someone you don't know. In public do something nice for someone. Open a door. Smile. My favorite thing to do, smile. It blows peoples minds. I love doing it. Although I will admit there are those times I need someone to do these things for me when i am out in the world and it really does all evens out in the wash.
I could sit here all day and write my wishes for life, not only for me, but for the world. Is it going to change anything? Probably not but it helps me to be a better person, especially on the days I don't want to be. We all need encouragement. We all need to be thankful for the life we are given even through the hardships we face that we may never get over. Follow your wishes and make the world a better place!
God Bless!
Dianne
I wish:
-People shared more of themselves and were more real. We tell or post all the positive stuff in our lives but when hurts comes we hide them away or let them go painting this picture of a perfect life. We all struggle and it is okay to share those struggles. On the other hand it is important to be able to work on those struggles and not allow it to be our identity. This is what causes the pain inside us that just mounts ups in our hearts. Think about it.
-People didn't have to suffer. Physically or mentally. You know I'm going to put this one towards the top of the list because I suffer everyday in some way physically and at time mentally. I am blessed with a great support system that keeps me grounded mentally but the pain? No one can take that away besides the drugs and sometimes they don't work or I don't take them because I want to win.
-People lived what they preached to others. It is funny to me how we can preach something to someone else but then we do the complete opposite without even realizing it. Guilty.
-I would have followed more of my dreams. My dream came true to be a wife and mother and I was fortunate to have had that but somewhere along the way I lost myself. The kids left and the house is quiet and I don't like it very much. I still am not use to having them gone. I miss the noise. My wishes are not theirs.
-I could do something big to change the world. Ya, I know we all do little things that make a difference but I am talking something big to help people around the world. I have no idea what it would be because I never took the time to think about things that I might like to do because I was raising my kids, while they were raising me too. Changing the world was the last thing on my mind because they were my world.
-There was no money. It clouds everything out in life. Money, money, money. You have to have it to live but you don't have to live to have it. It's nice to have nice things and a roof over your head but we have taken the materialistic aspect of money way to far. Like Rich always says, "It's just money. A tool. Help others." So we do, probably why we don't have much. Ha but what are we going to do bury it with us? NO so help someone who needs it more than you do.
-I could live my life over at times. I would have went out with friends the night one of my best ones was killed and held him tightly before he left. I would have stopped the hayride where one of our friends daughter was killed. STOP! Don't go! I am here to save you so the world can be a better place because of you. Life doesn't work like that so when bad things happen to the ones you love you let them go physically while your heart still loves and thinks of them every single day. Death, the one thing we will never understand until we deal with our own.
-We could hear all the answers we need to hear in whatever situation we need to hear them or at least take the time to listen to ourselves and the answers that we may already know are there, but just don't want to face them. Life is hard. Things happen. People hurt us. I was just telling a friend last night that sometimes we are pushed by someone and we swerve off the side of the straight and narrow and we have to find our way back. It takes time. Why do people hurt us? Sometimes there is no answer or explanation they just do. I wonder if they suffer as much knowing they hurt you as you suffer knowing they hurt you. Hummm Or is it sometimes the fact that people don't even realize they are hurting you at all. We become mad or offended and they have no idea they did or said anything wrong. I know that happens a lot with me because I have no filter, things just come out. Authentic to me but hurtful to others I am sure.
-I wish age didn't matter. Really! You watch tv now and if you are over 40 you are screwed. You have wrinkles? Oh my gosh you need botox or this or that. Your boobs are sagging? Get them lifted. You have fat? Oh my gosh you fatass you are going to die tomorrow. Really? I'm going to die anyways no matter how much I fall into the trap of youthfulness. Embrace age! With age comes wisdom, use it and be proud you have it. You earned it. Each wrinkle is a gift you can give to the world. Don't fall into the trap, please! Nonsense and someone is getting rich off your stupidity and men still like saggy boobs. Oooops sorry, no filter there.
-We all knew the true meaning to life and why we are here. Yes, I know from a biblical sense why but I am talking the big picture. It is crazy when you start to think deeply about it. I try not to but when you are a very deep person it is hard. I ask Rich why all the time. He rolls his eyes saying nothing at times and we move on as usual.
-We all could put our phones down and be in a moment without anything coming at us. The world is getting out of control with all this technology. I know, I sound old. I am and I'm proud of it. Wrinkles, fat, and saggy boobs. It's just that there is no down time anymore. It is always available. I/we are guilty. I ask Rich a question he says. "I don't know google it." Really, it happens everyday. I see the electronics even changing our relationship and truthfully I'm not loving it. I told him last night I wonder how we raised three kids without the internet or google. Humm we looked at each other and pondered for a minute. No answer from either of us on that one.
-I wish when people walked into a room they didn't just go for the people they know and gather in their comfort zones. It makes no sense to me but it is what it is. Kindness, it really does matter whether you think it does or not. A minute to show someone you care. I try to figure out why we avoid caring for our fellow human beings and I think the biggest reason is because we always think it has to be a huge thing we do. Reality is that it can be simple and small. People just want to feel loved and know they matter it isn't rocket science. Seriously. Take a minute to care for someone even if it is someone you don't know. In public do something nice for someone. Open a door. Smile. My favorite thing to do, smile. It blows peoples minds. I love doing it. Although I will admit there are those times I need someone to do these things for me when i am out in the world and it really does all evens out in the wash.
I could sit here all day and write my wishes for life, not only for me, but for the world. Is it going to change anything? Probably not but it helps me to be a better person, especially on the days I don't want to be. We all need encouragement. We all need to be thankful for the life we are given even through the hardships we face that we may never get over. Follow your wishes and make the world a better place!
God Bless!
Dianne
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