Saturday, November 13, 2010
11/13/10 Thankful
Today I am thankful for all of my nieces. They are all so beautiful and such bright spots in my life. I love you Cecilia, Jameson, Cameron, Kendall, and Casey!
What Does Sick Look Like?
This post is not meant to offend anyone. But it is something that I constantly experience on a day to day basis. I know in my heart people mean well. And that they want to pay me a compliment. But I also feel that at times people are trying to make sense of it all when I am told, "But you don't look sick." "But you look so great." "I've never seen you look better." "But you look so beautiful."
It has forced me to ask myself, in society's view, what does sick look like? Does one have to have sunken eyes, pale skin, and look close to death to be considered sick? Because I have lost weight (unintentionally), still wear make up, and do my hair each day, does that make me healthy to outsiders? In all fairness, 6 months ago, if I were able to step out of myself and look at me with outsider eyes, I would have made the same comments. But yet another life lesson I have learned is that no matter how great someone appears on the outside, you never know what they may be going through; illness, loss, pain...
Throughout this ordeal, I have struggled with how to respond and explain to people, that even though I may look "normal" I still have an illness that is keeping me from functioning normally. The terms "invisible illness" has taken on so much more meaning now that I am living it. Some days I respond to "but you don't look sick," with a simple "thank you." Other times I say, "Well I wish I felt as good as I look."
What people don't know is that although my hair and makeup may be done, and although I may look put together like my normal, "healthy" self, the process of getting ready for the day now requires many rest breaks, many checks of my heart rate, many periods of lying down, and basically 10 times the energy that it used to take to make myself look presentable. Or that after I take a shower, I usually need a good 30 minutes to recover by laying down with my legs up so the blood that has pooled in my legs can return back up to my brain, to help make my headaches and nauseousness go away. Or that when I do truly look sick, I am usually not out in public where people can see the "sickly" me.
Through these last six months, I have found that my days require a lot of conscious decision making and prioritizing as to what needs to be done. When I wake up in the morning I have to assess the day. If I have a doctor's appointment in the afternoon, I know I have to really pace myself in the morning with normal activities-making breakfast, showering, doing my exercises so that I am not too sick by the afternoon. If cleaning the house is a goal for that day, I have to pick what needs to be done the most. If I choose dusting, I often have to leave vacuuming for the next day. My life has changed a lot in terms of day to day happenings. What I used to take for granted now constantly requires conscious attention and decision making, as to if I will be able to make it through without getting too sick to ruin the rest of the day. It is a definite balancing act.
I explain this, not for sympathy, but because I cannot fault people for not understanding me and what I'm going through, if I do not try and explain it. Because of this invisible illness, I have been forced to cancel many plans the last months because of sickness. I appreciate all of you who have been understanding and patient with me when this happens. Hopefully as I continue to move forward, the "simple" things I used to do will get easier again.
There is something called the spoon theory that many people use to describe to their loved ones what life is like with an invisible illness. A lot of the spoon theory is so applicable to my life at this time. The Spoon Theory was written by Christine Miserandino who has Lupus, an autoimmune connective tissue disease. My hope is that by reading this, people will have a better understanding of what a typical day is like for me.
Because the spoon theory is copyrighted, I am not sure if I can legally copy and paste it on my blog. But I will post the link, and encourage you all to read it; not just for me, but because there are so many other people out there who are also living with various invisible illnesses.
http://www.butyoudontlooksick.com/wpress/wp-content/uploads/2010/02/BYDLS-TheSpoonTheory.pdf
It has forced me to ask myself, in society's view, what does sick look like? Does one have to have sunken eyes, pale skin, and look close to death to be considered sick? Because I have lost weight (unintentionally), still wear make up, and do my hair each day, does that make me healthy to outsiders? In all fairness, 6 months ago, if I were able to step out of myself and look at me with outsider eyes, I would have made the same comments. But yet another life lesson I have learned is that no matter how great someone appears on the outside, you never know what they may be going through; illness, loss, pain...
Throughout this ordeal, I have struggled with how to respond and explain to people, that even though I may look "normal" I still have an illness that is keeping me from functioning normally. The terms "invisible illness" has taken on so much more meaning now that I am living it. Some days I respond to "but you don't look sick," with a simple "thank you." Other times I say, "Well I wish I felt as good as I look."
What people don't know is that although my hair and makeup may be done, and although I may look put together like my normal, "healthy" self, the process of getting ready for the day now requires many rest breaks, many checks of my heart rate, many periods of lying down, and basically 10 times the energy that it used to take to make myself look presentable. Or that after I take a shower, I usually need a good 30 minutes to recover by laying down with my legs up so the blood that has pooled in my legs can return back up to my brain, to help make my headaches and nauseousness go away. Or that when I do truly look sick, I am usually not out in public where people can see the "sickly" me.
Through these last six months, I have found that my days require a lot of conscious decision making and prioritizing as to what needs to be done. When I wake up in the morning I have to assess the day. If I have a doctor's appointment in the afternoon, I know I have to really pace myself in the morning with normal activities-making breakfast, showering, doing my exercises so that I am not too sick by the afternoon. If cleaning the house is a goal for that day, I have to pick what needs to be done the most. If I choose dusting, I often have to leave vacuuming for the next day. My life has changed a lot in terms of day to day happenings. What I used to take for granted now constantly requires conscious attention and decision making, as to if I will be able to make it through without getting too sick to ruin the rest of the day. It is a definite balancing act.
I explain this, not for sympathy, but because I cannot fault people for not understanding me and what I'm going through, if I do not try and explain it. Because of this invisible illness, I have been forced to cancel many plans the last months because of sickness. I appreciate all of you who have been understanding and patient with me when this happens. Hopefully as I continue to move forward, the "simple" things I used to do will get easier again.
There is something called the spoon theory that many people use to describe to their loved ones what life is like with an invisible illness. A lot of the spoon theory is so applicable to my life at this time. The Spoon Theory was written by Christine Miserandino who has Lupus, an autoimmune connective tissue disease. My hope is that by reading this, people will have a better understanding of what a typical day is like for me.
Because the spoon theory is copyrighted, I am not sure if I can legally copy and paste it on my blog. But I will post the link, and encourage you all to read it; not just for me, but because there are so many other people out there who are also living with various invisible illnesses.
http://www.butyoudontlooksick.com/wpress/wp-content/uploads/2010/02/BYDLS-TheSpoonTheory.pdf
Friday, November 12, 2010
11/12/10 Thankful
Today I am thankful for the bond my siblings and I share. I am thankful for Allie's sense of humor, our goofiness together, and everything she teaches me about courage and perseverance. I am thankful for Andy's passion and intensity for everything he puts his mind to. I am thankful that he always gives me a hard time and makes me laugh, and that he shows me (once in a while) that he really is a teddy bear under that tough exterior. I am thankful for Kristen's big sister wisdom and I look up to how she is able to take everything in stride. I am thankful for everything she teaches me about compassion, thinking about others first, and listening to both sides before making judgements. Most of all I am thankful for the times we are all in the same place because there really is nothing else like it.
Signs
So I just have to tell this story because it gets me teary-eyed every time.
Last week when Brad and I were on the road to Cleveland to go for my autonomic nervous system testing, my Mom called to see how my day was going. She and my Dad had been in Philly visiting Kristen, Jake, and the beautiful Cecilia Jane. They were headed to BWI airport and we both still had a couple hours left to be in the car. At the moment she called I was struggling. My back and head hurt, I was nervous, and I was experiencing the anxiety that a trip to Cleveland Clinic usually brings. I was trying like heck to hold it together. Sensing that I was near a meltdown, my Mom went into her pep talk, pick my spirits up, cheerleader mode.
She reminded me of how when Allie was in the hospital for 46 days in Maryland, there were days they honestly did not know if the doctors would ever figure out what was wrong with her. But she went on to tell me how there were certain doctors who were obviously not going to give up for anything. She specifically talked about Dr. Ferentz and the care and determination he brought to Allie's medical team. One day when Allie was in the hospital, Dr. Ferentz ordered a kidney biopsy. He insisted they needed it to see if it showed anything. However, the other doctors on her team pretty much laughed at him and said a kidney biopsy was unnecessary. But Dr. Ferentz INSISTED. So they went ahead and did the biopsy voicing that it would not show anything. Well, sure enough when the results came in, the doctors reported that they FINALLY had answers. Because of that biopsy that most of the doctors saw as useless, Allie was diagnosed with Polyarteritis Nodosa Vasculitis. Basically Dr. Ferentz was the doctor who saved Allie's life.
My Mom reminded me that because of Dr. Ferentz (and other wonderful doctors who are treating Allie now) Allie has her life back. She is working, getting ready to apply to Grad schools, and living life like a 22 year old. My Mom told me that this too would happen for me. I just needed to keep moving forward, and I needed to continue seeing great doctors and having tests until I get there. She said I will have my "Dr. Ferentz(s)" too. We hung up the phone and I felt calmer.
After we arrived to Cleveland Clinic Guest House, we checked in, got settled in the room, Brad worked on report cards while I watched Oprah. Right before we were about to head down for dinner, my phone rang. It was my Mom and I thought she was calling to tell me that they landed safely in Detroit. However, I could tell in her voice she had more to say. She said, "I have to tell you something."
She said, "Remember how three hours ago I told you about Dr. Ferentz as Allie's life saver and everything he did to make sure Allie was taken care of? Well, we were sitting on the plane and a man was putting his bag in the overhead. I happened to look up and I did a double take. I said, "Dr. Ferentz?" He said, "Mary?"
It turns out he was headed to Michigan for one day to speak at a conference. They got to talking and my Mom told him she had just talked about him a few hours earlier to help me know that there will be doctors like him who will help me get my life back, like he did for Allie. As they caught up he wanted to know how my Dad was doing since he had Prostate cancer when Allie was in the hospital. He wanted to know if Allie graduated, and was so proud when my Mom told him she had, and was now working. They talked about me and he reassured my Mom that I was on the right track. They parted ways in the Detroit airport, with him telling my Mom that he wants to get Allie in touch with his wife who is a psychotherapist to help her with Psych grad school decisions. He said, "Mary, there is a reason I was put on this plane."
I believe this too. How do you explain that of all the flights, on all the days, and all the times, that Dr. Ferentz found himself on the same flight as my parents that day? My Mom had just talked to me about Dr. Ferentz THAT DAY at length about how he had saved my sister's life because he was not willing to give up or leave any stone unturned. And then there he was, in the flesh, 3 hours later on that airplane.
Honestly, I believe that God put Dr. Ferentz on that plane for my Mother and Father. They have been through so much with two of their daughters being sick in the last three years. I think Dr. Ferentz's presence on that plane was to let my parents know that everything will be alright. He is after all a symbol of life in their eyes because of where Allie is today.
You may disagree and that is okay. You may just see it as a mere coincidence. But I don't. I believe that this story illustrates that the Big Guy upstairs really knows what he is doing.
Last week when Brad and I were on the road to Cleveland to go for my autonomic nervous system testing, my Mom called to see how my day was going. She and my Dad had been in Philly visiting Kristen, Jake, and the beautiful Cecilia Jane. They were headed to BWI airport and we both still had a couple hours left to be in the car. At the moment she called I was struggling. My back and head hurt, I was nervous, and I was experiencing the anxiety that a trip to Cleveland Clinic usually brings. I was trying like heck to hold it together. Sensing that I was near a meltdown, my Mom went into her pep talk, pick my spirits up, cheerleader mode.
She reminded me of how when Allie was in the hospital for 46 days in Maryland, there were days they honestly did not know if the doctors would ever figure out what was wrong with her. But she went on to tell me how there were certain doctors who were obviously not going to give up for anything. She specifically talked about Dr. Ferentz and the care and determination he brought to Allie's medical team. One day when Allie was in the hospital, Dr. Ferentz ordered a kidney biopsy. He insisted they needed it to see if it showed anything. However, the other doctors on her team pretty much laughed at him and said a kidney biopsy was unnecessary. But Dr. Ferentz INSISTED. So they went ahead and did the biopsy voicing that it would not show anything. Well, sure enough when the results came in, the doctors reported that they FINALLY had answers. Because of that biopsy that most of the doctors saw as useless, Allie was diagnosed with Polyarteritis Nodosa Vasculitis. Basically Dr. Ferentz was the doctor who saved Allie's life.
My Mom reminded me that because of Dr. Ferentz (and other wonderful doctors who are treating Allie now) Allie has her life back. She is working, getting ready to apply to Grad schools, and living life like a 22 year old. My Mom told me that this too would happen for me. I just needed to keep moving forward, and I needed to continue seeing great doctors and having tests until I get there. She said I will have my "Dr. Ferentz(s)" too. We hung up the phone and I felt calmer.
After we arrived to Cleveland Clinic Guest House, we checked in, got settled in the room, Brad worked on report cards while I watched Oprah. Right before we were about to head down for dinner, my phone rang. It was my Mom and I thought she was calling to tell me that they landed safely in Detroit. However, I could tell in her voice she had more to say. She said, "I have to tell you something."
She said, "Remember how three hours ago I told you about Dr. Ferentz as Allie's life saver and everything he did to make sure Allie was taken care of? Well, we were sitting on the plane and a man was putting his bag in the overhead. I happened to look up and I did a double take. I said, "Dr. Ferentz?" He said, "Mary?"
It turns out he was headed to Michigan for one day to speak at a conference. They got to talking and my Mom told him she had just talked about him a few hours earlier to help me know that there will be doctors like him who will help me get my life back, like he did for Allie. As they caught up he wanted to know how my Dad was doing since he had Prostate cancer when Allie was in the hospital. He wanted to know if Allie graduated, and was so proud when my Mom told him she had, and was now working. They talked about me and he reassured my Mom that I was on the right track. They parted ways in the Detroit airport, with him telling my Mom that he wants to get Allie in touch with his wife who is a psychotherapist to help her with Psych grad school decisions. He said, "Mary, there is a reason I was put on this plane."
I believe this too. How do you explain that of all the flights, on all the days, and all the times, that Dr. Ferentz found himself on the same flight as my parents that day? My Mom had just talked to me about Dr. Ferentz THAT DAY at length about how he had saved my sister's life because he was not willing to give up or leave any stone unturned. And then there he was, in the flesh, 3 hours later on that airplane.
Honestly, I believe that God put Dr. Ferentz on that plane for my Mother and Father. They have been through so much with two of their daughters being sick in the last three years. I think Dr. Ferentz's presence on that plane was to let my parents know that everything will be alright. He is after all a symbol of life in their eyes because of where Allie is today.
You may disagree and that is okay. You may just see it as a mere coincidence. But I don't. I believe that this story illustrates that the Big Guy upstairs really knows what he is doing.
Five for Friday 11/12/10
1. Celebrated Daylight Savings by eating at Panera, and taking a trip to Target. We bought checkers and chess and I plan on beating Brad as soon as he gets brave enough to play me.
2. Started watching the first season of Modern Family since we just started watching it this season. Man is that show hilarious.
3. Started drinking Dr. Joe's Magic Green Potion to bring down inflammation (will post more about that later). I also received some fancy medical equipment-a TENS unit for pain, a muscle stimulator for muscle spasms, and a cervical traction unit.
4. Emailed a doctor out of the blue in Mishawaka, Indiana about prolotherapy. Did not know if I would hear back but I did within a few hours. Some doctors really, really care.
5. Meghan and Jackson came to visit! I loved seeing them and could not believe how big Jackson is getting! I can't wait for our next visit soon. Hopefully it will involve CRANIUM!
Thursday, November 11, 2010
11/11/10 Thankful
Today I am thankful for all of the Veteran's and people who are currently serving our country. Thank you for being the 1% of the population that makes so many sacrifices for the other 99%. A special thank you to Aunt Mada, Uncle Brock, Uncle Richie, Gabe, and my brother, Andy! RIP Uncle Allen, Grandpa Humbie, Grandpa Dudley, and Grandma Gert.
Curveballs
September was the month I would be starting my 6th year of teaching. August was the month Brad and I were supposed to start trying to have a family. July was the month we were supposed to go to Gun Lake with friends
If the last year has taught me anything, it has taught me that life throws curve balls that are often beyond my control. This has been a very hard lesson for me to learn; one that is extremely hard to accept for a type A, control freak like myself. I have also learned that putting timelines on life doesn't always work out as well.
Throughout my life I have always been an overachiever and always experienced and believed that if I put my mind to something, I would make it happen one way or another. So when I left school in June, I remember telling my assistant that I was devoting the summer to getting healthy and when she saw me again in August to set up the classroom I would be healthy as ever. WRONG.
I worked and worked all summer trying to get better. I employed that same hard headed attitude that I always lived by, that if I worked hard at something it would happen. So as the end of August neared, anxiety hit an all time high as I was significantly worse than when I left in June. I was not anywhere near finding answers, my health continued to decline, and I had spent the whole summer seeing specialists, going to acupuncture, having spinal injections, having tests done, going to physical therapy, trying every diet and non traditional remedy suggested to me (besides marijuana), researching hours and hours for doctors and possible diagnoses, peeing in countless cups, spitting in countless tubes for saliva samples, giving vials and vials of blood, you get the idea...
At the end of August I was getting sick daily with trying to stand and walk. I remember waking up each day wondering if today was the day I was going to pass out. I also needed my hands to hold my mid back up and often hold my hips in place. I felt like I did not have enough hands to support my body.
But the thought of not returning to teaching because of these health issues was unbearable to me. I cried many, many times, not knowing how I would teach with the sickness and instability I was experiencing each day. But I also knew that I needed to be with those precious kids, because teaching was my love and I thought for my mental health I needed to do what I loved doing. I kept trying to wade through the concept of mental health vs. physical health. Plus I kept telling myself that so many families were counting on me.
The week before we were required to report back to school I went into denial mode, packed my car with my teaching materials, and told myself that I was stronger than this illness and I just needed to push through. I went to my classroom at the end of August and began to set up my classroom. I would set up a section of the room and then lay on the floor with the room spinning. I would set up another section and then run to the bathroom with dry heaves. I would crawl on my knees to gather materials so I did not have to stand up. The day my teaching assistant came in to help me she walked into the classroom to find me in hysterics. I felt so dizzy, my heart was racing, my eyesight was blurry, and I could not catch my breath. We talked for a long time about what I needed to do, and at that time I still didn't know. I was feeling so many emotions. But I knew that the harder I worked at pushing through the sicker I got. The more I worked at setting up the room, the more my back pain went off the charts.
The next day, after a long talk with my family, I realized I had to be honest with myself, and also fair to those 4 and 5 year olds who would be showing up in a week so excited about everything that is school-new backpacks, new crayons, having a name tag, recess, chocolate milk...I knew in my heart that I would not be able to return to work at that time, and do my job how it needed to be done. I strapped on my big girl boots and walked (very slowly while trembling) to have the dreaded medical leave conversation with my principal.
Our conversation could not have gone better. She was so loving and supportive and told me my health comes first, and that is what I needed to focus on. She told me that she would make sure the kids were in great hands while I continued to find answers, and therefore treatment. We even sat in her office and shared a Boost :) I will forever be grateful for the care my principal expressed for me and my family, and the advice she gave me about priorities-that health and family ALWAYS come first. I cried, thanked her, and left her office with a new task of figuring out the whole medical leave thing.
As I went home and figured out who would take over my classroom, everything seemed to fall into place. My assistant's daughter (who had subbed in my room last year) offered to take over for as long as I needed. She had just finished her internship in lower elementary and was more than qualified for taking over my pre-kindergarten and kindergarten classroom. It was such a relief to know my students would be in excellent hands, while I put my energy into finding answers and treatment options.
September 7th was a difficult day. While my students were starting their first day of school, I was at the cardiologist appointment close to collapsing on the treadmill during the stress test. It was really hard not to feel left behind. I was so frustrated that MY timeline for getting healthy did not work out.
Each day I am reminded of an important life lesson that I have learned at 29~that sometimes life takes twists and turns that are out of my control. However, despite my experiences during the last year, I still strongly believe that if I continue to work hard at getting better, it will eventually happen...it just may not happen on MY time. I believe starting a family will still happen-it just may not happen on OUR time. So I have been forced to throw out all timelines, and have embraced that getting my health back will be a marathon instead of a sprint.
If the last year has taught me anything, it has taught me that life throws curve balls that are often beyond my control. This has been a very hard lesson for me to learn; one that is extremely hard to accept for a type A, control freak like myself. I have also learned that putting timelines on life doesn't always work out as well.
Throughout my life I have always been an overachiever and always experienced and believed that if I put my mind to something, I would make it happen one way or another. So when I left school in June, I remember telling my assistant that I was devoting the summer to getting healthy and when she saw me again in August to set up the classroom I would be healthy as ever. WRONG.
I worked and worked all summer trying to get better. I employed that same hard headed attitude that I always lived by, that if I worked hard at something it would happen. So as the end of August neared, anxiety hit an all time high as I was significantly worse than when I left in June. I was not anywhere near finding answers, my health continued to decline, and I had spent the whole summer seeing specialists, going to acupuncture, having spinal injections, having tests done, going to physical therapy, trying every diet and non traditional remedy suggested to me (besides marijuana), researching hours and hours for doctors and possible diagnoses, peeing in countless cups, spitting in countless tubes for saliva samples, giving vials and vials of blood, you get the idea...
At the end of August I was getting sick daily with trying to stand and walk. I remember waking up each day wondering if today was the day I was going to pass out. I also needed my hands to hold my mid back up and often hold my hips in place. I felt like I did not have enough hands to support my body.
But the thought of not returning to teaching because of these health issues was unbearable to me. I cried many, many times, not knowing how I would teach with the sickness and instability I was experiencing each day. But I also knew that I needed to be with those precious kids, because teaching was my love and I thought for my mental health I needed to do what I loved doing. I kept trying to wade through the concept of mental health vs. physical health. Plus I kept telling myself that so many families were counting on me.
The week before we were required to report back to school I went into denial mode, packed my car with my teaching materials, and told myself that I was stronger than this illness and I just needed to push through. I went to my classroom at the end of August and began to set up my classroom. I would set up a section of the room and then lay on the floor with the room spinning. I would set up another section and then run to the bathroom with dry heaves. I would crawl on my knees to gather materials so I did not have to stand up. The day my teaching assistant came in to help me she walked into the classroom to find me in hysterics. I felt so dizzy, my heart was racing, my eyesight was blurry, and I could not catch my breath. We talked for a long time about what I needed to do, and at that time I still didn't know. I was feeling so many emotions. But I knew that the harder I worked at pushing through the sicker I got. The more I worked at setting up the room, the more my back pain went off the charts.
The next day, after a long talk with my family, I realized I had to be honest with myself, and also fair to those 4 and 5 year olds who would be showing up in a week so excited about everything that is school-new backpacks, new crayons, having a name tag, recess, chocolate milk...I knew in my heart that I would not be able to return to work at that time, and do my job how it needed to be done. I strapped on my big girl boots and walked (very slowly while trembling) to have the dreaded medical leave conversation with my principal.
Our conversation could not have gone better. She was so loving and supportive and told me my health comes first, and that is what I needed to focus on. She told me that she would make sure the kids were in great hands while I continued to find answers, and therefore treatment. We even sat in her office and shared a Boost :) I will forever be grateful for the care my principal expressed for me and my family, and the advice she gave me about priorities-that health and family ALWAYS come first. I cried, thanked her, and left her office with a new task of figuring out the whole medical leave thing.
As I went home and figured out who would take over my classroom, everything seemed to fall into place. My assistant's daughter (who had subbed in my room last year) offered to take over for as long as I needed. She had just finished her internship in lower elementary and was more than qualified for taking over my pre-kindergarten and kindergarten classroom. It was such a relief to know my students would be in excellent hands, while I put my energy into finding answers and treatment options.
September 7th was a difficult day. While my students were starting their first day of school, I was at the cardiologist appointment close to collapsing on the treadmill during the stress test. It was really hard not to feel left behind. I was so frustrated that MY timeline for getting healthy did not work out.
Each day I am reminded of an important life lesson that I have learned at 29~that sometimes life takes twists and turns that are out of my control. However, despite my experiences during the last year, I still strongly believe that if I continue to work hard at getting better, it will eventually happen...it just may not happen on MY time. I believe starting a family will still happen-it just may not happen on OUR time. So I have been forced to throw out all timelines, and have embraced that getting my health back will be a marathon instead of a sprint.
Subscribe to:
Posts (Atom)