Today marks 16 sweet weeks after surgery to implant the Enterra, a gastric stimulator. I have to say it has been on my mind all day long just how far I have come in these 16 weeks. Then I start to think how far I have come since this time last year. Although this path has been long and often painful emotionally and physically, as I look back I can see how every person, every doctor, every step along the way has been so crucial in my journey to this point.
I talk a lot about how there were not as many resources for me in New Mexico. This is a true statement. I lived in New Mexico for 30 years. Lived. My very first pediatrician was almost a part of our family. He referred me to my first internist when I was a preteen. She told us then that the big picture of my health would take time to come into view, but there was definitely a quirk they weren't catching. In college I was bounced around for a little while until a really great endocrinologist began chipping away at the pieces. Moving back to small town New Mexico had its share of challenges, but I will say this as firmly as I can, those small town doctors saved my life. They got me to specialists who sent me to the Mayo Clinic. That opened my eyes to realize I really needed to take this seriously. I am no immortal. Those small town doctors eventually put puzzle pieces together to refer me to Dallas for this very procedure. Then, they referred me to Johns Hopkins to be sure their plan was the right plan. So whatever little resources New Mexico had, it once again is the Land of Enchantment because a few gems saved my life.
To get to the business side, for those of you interested in my progress as well as this incredible technology behind the gastric stimulator, today is a good day. Last week I had an appointment with my surgeon/ gastroenterologist and the Enterragator. I tell my husband I am like Iron Man and the Enterragator, which helps the doctor control my stimulator, is what keeps me running. I am still working on the lingo so forgive me for not talking technically about the device and what happens at the appointments that leads to adjusting the stimulation and whatnot. I have hit a plateau since my last appointment and blog post. Not to worry though, a plateau is level not a decline! I am still worth a buck, but no more. My appetite has decreased as well as an increase in nausea and discomfort. Based on that as well as what the Enterragator told my doctor, he bumped up the stimulation just a bit once again. This is normal, as with anything in your body there is an ebb and flow that we are manually trying to keep in equilibrium. The discouraging part, I have to slow down on challenging my diet and return back to "safe foods" for a while. "Safe foods" meaning things I could eat before the procedure without too much trouble. I am welcoming the nutritious smoothies, fruit bars, and eggs...not that I ever cut them out completely, but they are again replacing more indulgent meals. I suppose if anytime is a good time, now is because they have become comfort foods for me. Autumn is perfect for comfort foods.
I am getting more used to having the device in my abdomen. The pain from the surgery is starting to lessen more and more everyday. It is still a little tender right at the site of implantation. If I do too much, my stomach muscles get sore. Bending and twisting along with certain clothing irritate it. But overall, these little inconveniences are nothing compared to what I was dealing with in the past. I rarely get a distended belly anymore. I actually feel food moving along my system in a more natural manner. Gas and regularity are not an issue. The biggest blessing is being able to eat three meals a day without feeling like I ate the entire McDonald's menu in one sitting.
Thanksgiving is coming up and everyone is wondering what I will be doing. I will gladly tell you, I will be doing the same as everyone else. I will be relaxing, spending time with family, and enjoying my son's time off from school. I will not partake in the traditional turkey, stuffing, and pumpkin pie meal that most Americans are accustomed to for Thanksgiving. Too many years have past with me trying to conform to a world I no longer fit in always ending with me in tears and pain for nearly a week thereafter. This year I decided to cut myself some slack. Why am I forcing down food that is only satisfying when it is on my tongue for a few short seconds? Instead, I think I will make a meal the day before to cut down on stress. I will make something that is a treat to myself as well as my family, but it will be a feast in my sense. I am sure there will be enough left-overs for me to enjoy the next day. On Thanksgiving itself, I will join family and friends for their feasts and enjoy their company with no pressure and no misery nightcap. Maybe some Thanksgiving in the future (next year?) I can enjoy the traditional meal and if not, oh well. I will make my own traditions and still enjoy life just as much as the next gal.
All in all, I can genuinely say this is my sweet 16!
Wednesday, November 20, 2013
Tuesday, November 12, 2013
Connected
November is Diabetes Awareness Month because of this, there are many websites promoting and selling diabetes related merchandise such as jewelry, clothing, t-shirts, etc. I have mentioned previously that my sister has Type I Diabetes too. I enjoy this month because there is so much promotion for Breast Cancer Awareness (which is greatly needed and I support fully), it feels good to know people are still working on a cure for diabetes. I have always worn my diabetes as a badge of honor and will gladly talk about it if someone asks. My sister has always been more reserved about health issues, especially her own, but this month I found these bracelets we could get to show our solidarity in this battle we fight throughout life together. I was actually really pleased and thankful when I sent the link to my sister suggesting we get these bracelets and she agreed.
I have to give her credit. She lives in a completely different world than I do. In her business, health issues are seen as a weakness or risk. Her career and environment are not exactly compassionate to human pitfalls, but it is such a rewarding field and she is so passionate. They say, "If you're going to work for the rest of your life, do what you love and it won't be work." To take this back a bit, I also want to credit her for following her dreams. Like many with chronic illnesses, diabetes stopped her career path dead in its tracks. She took a minute, evaluated the situation, put her head down and kept on trudging. She may not do what her childhood mind dreamed up, but she found a way to be involved in what she loves despite the evil of diabetes while still making a living.
Needless to say, being two time zones away from my sister makes the distance feel even greater at times. With these bracelets, even when I cannot talk to her I will look at it and know we are connected. This was my thought as I was looking at the merchandise. Then I had an epiphany- not only are we connected as sisters, we have this remarkable connection through diabetes. There are things we can understand about each other that cannot be described in words. We have a trust in each other that is so steadfast and the illness has made our unbreakable bond even tighter. This thinking turned into reminiscing, which brought to light another epiphany.
Our father, Don, was diagnosed with Type I Diabetes at the age of 5 back in the 1950s. In those days it was such a different diagnosis, treatment, and prognosis. It was so much more difficult to manage. In adulthood it was thought that diabetics would have greater infertility rates. My parents were blessed with one pregnancy during which they were told the child will only have about 25% chance of having Type I as well. That was my sister, born healthy. A second pregnancy three years later produced another healthy baby, ME. Unfortunately we lost our father this month in 1987. Throughout childhood everyone kept a watchful eye on us, but doctors had determined that the 25% statistic was wrong and we should not worry about the eventual development of Type I.
I, of course, had my first minor scare with chronic illnesses in my pre-teen to early teen years. Type I was ruled out and not feared thereafter. Somewhere deep in my gut though, I always thought it was in my future. About three or four years after my fears should have been relieved by the rule out, my sister called from college with the news that she had Type I Diabetes. It was a devastating blow to our family. I cannot imagine what it must have been like for her to go through that process basically alone away at college. She was 20 years old.
For the next few years I watched her learn to live this new life (in snapshots during her visits home). Type I is usually diagnosed in childhood, previously known as juvenile diabetes. A 20 year old college student with only a mild cardiac history is definitely not the typical Type I victim. She was treated as a Type II patient for a while, which made her much sicker, until the determination was finally made that it was, in fact, Type I. An astonishing realization for us all. I also think the label itself mattered to her because we had lost our Dad to this very thing only a little more than a decade before. With this news, I thought that gut feeling I had all my life must have been misinterpreted. It was not my fate but my sister's...or so I thought.
I rested easy for all of about 20 minutes. My own health started flaring up about a year after her turmoil started. I managed my thyroid problems and stress as that is where they thought my symptoms stemmed. Three years after my sister's roller coaster ride into a Type I Diabetes diagnosis, I had to call her to take me to the ER because I had spent the day going about my now college life without being able to see clearly, dying of thirst, and feeling unbelievably awful. Within minutes of getting to the ER, the inevitable was seen. My blood sugar was 427 (I will never forget). The irony of this, I was the same age my sister was (almost to the day) when she was diagnosed. An irony that has been pointed out by many doctors as eligible for research.
When I was pregnant with my own son (an unplanned pregnancy) I asked as many questions as possible. I state that it was unplanned because it is never a good idea for a diabetic to get pregnant without good management and an "all-clear" from one's doctor. I was only 22 and only a year and a half out from my own diagnosis. I was told by prenatal experts then that Type I Diabetes is not as closely linked to genetics as Type II is. It was described to me as being more of a deformity like a missing thumb or a third nipple ;-) . With that said, I was told that my son has no more of a chance of developing Type I Diabetes than his peers; if anything the percentage was not even statistically relevant.
Knowing all of this now, and getting back to the amazing connection my sister and I had, that second epiphany struck me. We have this remarkable connection with our dad. I move through life, especially right now with my recent health upheaval, longing for my dad's physical presence. I have so many questions. I want him to hold my hand through this. I have complaints and concerns only he would understand and not try to dismiss. But, he is here with me daily. I have this connection with him. The three of us have this connection that so many others will not. You may think this is a sad or dark thing, but that is not how I see it.
I see my illnesses as guidance. I believe they give me knowledge I would not seek out, a compassion unmatched, wisdom beyond my years, and they keep me grounded and focused on what is really important in life. With diabetes this is constant because we check our blood sugars up to ten times a day sometimes. That reminder that I am not in control and I am not entitled to anything is there, always. This, I believe, makes me a better person. Truly, a blessing in disguise. Adding another layer of blessings, this bond/ connection between Dad and his only children, my sister and me. We have a new understanding of what his life was like and how amazing he must have been to make such an impression on everyone around him. We have an understanding of each other that no one else, not even other sisters, could achieve. Now, I want these bracelets even more.
My sister and I talk daily. Thanks to modern technology, we are constantly connected. I am even connected with my mom in New Mexico and my aunt in Utah and my cousins in California.... I have not felt "connected" to my dad in that sense since I was four years old. I now have a new perspective on our connection. It goes beyond father/daughter, it goes beyond two people suffering with Type I Diabetes, it goes all the way to the top. I have ALWAYS felt like my dad watches over me and helps guide me through life, making decisions and life choices or holding me through hard times. I now feel like he laid the path for my sister and I to walk down hand-in-hand. I feel his smile shining down on us, proud that we have grown into such amazing women and that we are closer than we could have ever thought as bickering kids.
In this day of Facebook and blogs and Instagram and Twitter and email and cell phones and text messaging, we get lost in these sometimes superficial connections with people. Let's make a conscious effort to put down or shut off the electronics and celebrate the REAL connections we have in our life. The connections with those who are truly important to you. The connections you desire to nurture and tend to are the connections you will carry with you through good and bad times to come. At the end of the day, all you need is love. Right, Lennon?
I have to give her credit. She lives in a completely different world than I do. In her business, health issues are seen as a weakness or risk. Her career and environment are not exactly compassionate to human pitfalls, but it is such a rewarding field and she is so passionate. They say, "If you're going to work for the rest of your life, do what you love and it won't be work." To take this back a bit, I also want to credit her for following her dreams. Like many with chronic illnesses, diabetes stopped her career path dead in its tracks. She took a minute, evaluated the situation, put her head down and kept on trudging. She may not do what her childhood mind dreamed up, but she found a way to be involved in what she loves despite the evil of diabetes while still making a living.
Needless to say, being two time zones away from my sister makes the distance feel even greater at times. With these bracelets, even when I cannot talk to her I will look at it and know we are connected. This was my thought as I was looking at the merchandise. Then I had an epiphany- not only are we connected as sisters, we have this remarkable connection through diabetes. There are things we can understand about each other that cannot be described in words. We have a trust in each other that is so steadfast and the illness has made our unbreakable bond even tighter. This thinking turned into reminiscing, which brought to light another epiphany.
Our father, Don, was diagnosed with Type I Diabetes at the age of 5 back in the 1950s. In those days it was such a different diagnosis, treatment, and prognosis. It was so much more difficult to manage. In adulthood it was thought that diabetics would have greater infertility rates. My parents were blessed with one pregnancy during which they were told the child will only have about 25% chance of having Type I as well. That was my sister, born healthy. A second pregnancy three years later produced another healthy baby, ME. Unfortunately we lost our father this month in 1987. Throughout childhood everyone kept a watchful eye on us, but doctors had determined that the 25% statistic was wrong and we should not worry about the eventual development of Type I.
I, of course, had my first minor scare with chronic illnesses in my pre-teen to early teen years. Type I was ruled out and not feared thereafter. Somewhere deep in my gut though, I always thought it was in my future. About three or four years after my fears should have been relieved by the rule out, my sister called from college with the news that she had Type I Diabetes. It was a devastating blow to our family. I cannot imagine what it must have been like for her to go through that process basically alone away at college. She was 20 years old.
For the next few years I watched her learn to live this new life (in snapshots during her visits home). Type I is usually diagnosed in childhood, previously known as juvenile diabetes. A 20 year old college student with only a mild cardiac history is definitely not the typical Type I victim. She was treated as a Type II patient for a while, which made her much sicker, until the determination was finally made that it was, in fact, Type I. An astonishing realization for us all. I also think the label itself mattered to her because we had lost our Dad to this very thing only a little more than a decade before. With this news, I thought that gut feeling I had all my life must have been misinterpreted. It was not my fate but my sister's...or so I thought.
I rested easy for all of about 20 minutes. My own health started flaring up about a year after her turmoil started. I managed my thyroid problems and stress as that is where they thought my symptoms stemmed. Three years after my sister's roller coaster ride into a Type I Diabetes diagnosis, I had to call her to take me to the ER because I had spent the day going about my now college life without being able to see clearly, dying of thirst, and feeling unbelievably awful. Within minutes of getting to the ER, the inevitable was seen. My blood sugar was 427 (I will never forget). The irony of this, I was the same age my sister was (almost to the day) when she was diagnosed. An irony that has been pointed out by many doctors as eligible for research.
When I was pregnant with my own son (an unplanned pregnancy) I asked as many questions as possible. I state that it was unplanned because it is never a good idea for a diabetic to get pregnant without good management and an "all-clear" from one's doctor. I was only 22 and only a year and a half out from my own diagnosis. I was told by prenatal experts then that Type I Diabetes is not as closely linked to genetics as Type II is. It was described to me as being more of a deformity like a missing thumb or a third nipple ;-) . With that said, I was told that my son has no more of a chance of developing Type I Diabetes than his peers; if anything the percentage was not even statistically relevant.
Knowing all of this now, and getting back to the amazing connection my sister and I had, that second epiphany struck me. We have this remarkable connection with our dad. I move through life, especially right now with my recent health upheaval, longing for my dad's physical presence. I have so many questions. I want him to hold my hand through this. I have complaints and concerns only he would understand and not try to dismiss. But, he is here with me daily. I have this connection with him. The three of us have this connection that so many others will not. You may think this is a sad or dark thing, but that is not how I see it.
I see my illnesses as guidance. I believe they give me knowledge I would not seek out, a compassion unmatched, wisdom beyond my years, and they keep me grounded and focused on what is really important in life. With diabetes this is constant because we check our blood sugars up to ten times a day sometimes. That reminder that I am not in control and I am not entitled to anything is there, always. This, I believe, makes me a better person. Truly, a blessing in disguise. Adding another layer of blessings, this bond/ connection between Dad and his only children, my sister and me. We have a new understanding of what his life was like and how amazing he must have been to make such an impression on everyone around him. We have an understanding of each other that no one else, not even other sisters, could achieve. Now, I want these bracelets even more.
My sister and I talk daily. Thanks to modern technology, we are constantly connected. I am even connected with my mom in New Mexico and my aunt in Utah and my cousins in California.... I have not felt "connected" to my dad in that sense since I was four years old. I now have a new perspective on our connection. It goes beyond father/daughter, it goes beyond two people suffering with Type I Diabetes, it goes all the way to the top. I have ALWAYS felt like my dad watches over me and helps guide me through life, making decisions and life choices or holding me through hard times. I now feel like he laid the path for my sister and I to walk down hand-in-hand. I feel his smile shining down on us, proud that we have grown into such amazing women and that we are closer than we could have ever thought as bickering kids.
In this day of Facebook and blogs and Instagram and Twitter and email and cell phones and text messaging, we get lost in these sometimes superficial connections with people. Let's make a conscious effort to put down or shut off the electronics and celebrate the REAL connections we have in our life. The connections with those who are truly important to you. The connections you desire to nurture and tend to are the connections you will carry with you through good and bad times to come. At the end of the day, all you need is love. Right, Lennon?
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