tag:blogger.com,1999:blog-25361788372560942462024-03-13T21:02:46.840-07:00The Nefariouspoo of Sarah (A Field Trip into Disability Advocacy)A type 1 diabetic mom of Gracie, my 4 year daughter with type 1 diabetes & cerebral palsy and Sandis, my 7 year old son with PDD-NOS (a disorder on the autism spectrum). We are learning to move beyond and not be defined by our diagnoses every single day.Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.comBlogger321125tag:blogger.com,1999:blog-2536178837256094246.post-56968055313404321972009-05-24T09:13:00.000-07:002009-05-24T09:32:37.380-07:00My First Post in 2009Not one post this year, not one post. So I blog in 2009 quite behind the times. <br /><br />I will do a quick update and then, perhaps I will tell you all what is on my mind. Because that is what is drawing me to write right now. I don’t have some urgent desire to share point by point the happenings in the past six months, but rather the need to set my heart down on paper. For those of us that write, I’m sure you understand. <br /><br />February 2009 – Laid off from job as technical writer – shit …..<br /><br />March 2009 – briefly hospitalized (about a week) for the most gruesome headache in the world. Seriously. Terrible.Freaking.Headache. I could write more about this. Fact is they gave me fentanyl twice, dilaudid twice. And Nubain once. And nothing touched this headache. And these were given to me in a matter of hours. Finally, they gave me morphine, and while I still had the headache and was unable to walk/speak/chew/sit up, etc I was able to lay in a doped up peace not thinking I was going to die while my body is locked in agonizing pain It was fun stuff! 1 week later I was released, no longer on IV meds, but still with a terrible headache and bruises on my bum from shots I had been given. Good stuff.<br /><br />April 2009 – Baby Thia Apple Waline was born at 37 weeks 2 days gestation on 4/8/09. She was 10 lbs! 21 inches long and beautiful and healthy and perfect! She got stuck on the way out (but only for a moment, mild shoulder dystocia) but she has no blood sugar problems, she was born full term, and she breathed wonderfully. My beautiful “little” girl!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpvYDHfkqzFCzpWdbKXWkddNJqUdkFwaRcKfswQC-Tol5Tvznh-HHZ2OEQtrxnfTCu5OgdAFPJScaxIXy4Lv9jOebfnVx69fcfhpc_Cp33k6jyBi4S6cN_k-WU7YBxT1vKWu-ohgsedVY/s1600-h/5.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpvYDHfkqzFCzpWdbKXWkddNJqUdkFwaRcKfswQC-Tol5Tvznh-HHZ2OEQtrxnfTCu5OgdAFPJScaxIXy4Lv9jOebfnVx69fcfhpc_Cp33k6jyBi4S6cN_k-WU7YBxT1vKWu-ohgsedVY/s320/5.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5339428715733459298" /></a><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5vD3o9X_MCenLSFvbfjCWuaG_SVJwfYauN2GEenP-YGtJdXggBlEmleLrnwHAOhEfFEnFHxHv_hyphenhyphenZo59PlOsiiEAjbnIep2rNKR41FokkKS9ZRehA4RoikiH4WXNmEgv3vQlDgwdHbuo/s1600-h/2.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 210px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5vD3o9X_MCenLSFvbfjCWuaG_SVJwfYauN2GEenP-YGtJdXggBlEmleLrnwHAOhEfFEnFHxHv_hyphenhyphenZo59PlOsiiEAjbnIep2rNKR41FokkKS9ZRehA4RoikiH4WXNmEgv3vQlDgwdHbuo/s320/2.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5339429032460349074" /></a><br /><br />and yes, we are using cloth diapers :) Here is a cute one!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDU-9L21k5uLINXvdaXZMIwe-cvL1NdL0nVPG6JK_zoOcy_IM7OICEwHxK7_GoerdchyphenhyphenR4TP8ycnzhkkQXEAyy5ewU0z8aeNA11XXUeQ2Ukl1_vmmpRZ2V-4R49CV45OSrcE0_cwcTXAQ/s1600-h/3.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 202px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDU-9L21k5uLINXvdaXZMIwe-cvL1NdL0nVPG6JK_zoOcy_IM7OICEwHxK7_GoerdchyphenhyphenR4TP8ycnzhkkQXEAyy5ewU0z8aeNA11XXUeQ2Ukl1_vmmpRZ2V-4R49CV45OSrcE0_cwcTXAQ/s320/3.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5339429214301951762" /></a><br /><br /><br />It was also this month that I was approved for a Trade Adjustment Assistance Training Program so I can complete my bachelors degree in political science. I started school full time (from part time) on May 4th, and I haven’t looked back. Although, school full time with a newborn on your lap is interesting. The program pays for my school 100%, pays 80% of my COBRA until August 2010, and pays me unemployment insurance until February 2011 when I graduate. Seriously, who turns down programs like that? It is too good to be true!<br /><br />So now it is May. My family of four is now a family of five. And yet, I’ve watched from afar a family of three become a family of one. And that is what is driving me to write…<br /><br />I live in a complex of 12 townhomes. They are right next door to the train tracks, but separated from them by a big fence and off the road far enough that you just can't see the ins and outs of what goes on here. We are dubbed "affordable housing" which means they charge lower rents so poor people can afford to live in homes (either with section 8 or without) that have enough bedrooms for their children. <br /><br /><br />I'm in my third year living here. I moved here from my old crummy apartment, and the townhome is beautiful and three bedrooms and two stories and just, wow. I have been blessed. A lot of folks that live around here think it is a shit hole, but I say it is all about perspective.<br /><br /><br />Anyhow, a girl across the way from me has some mental health concerns. She hasn't been able to work in quite some time, but has been making it. She has guys come and go, some losers, some quite nice. How do I know this? Well, in these townhomes we all face each other, and we get to know the finer details of one another's lives, whether we talk to each other or not. It's just like that. Like Melrose place, but poorer. <br /><br /><br />A couple of weeks ago this girl's daughter, who is just under or just over a year, drowned in her bath tub. It was fortunate for her that the baby was able to be revived. It was unfortunate for her, that because this woman already has child services involvement, that this incident caused her to lose both her children, and she is currently in a CHIPS trial. <br /><br /><br />Ick. I've been watching this woman come outside to smoke, and be a shell unto herself. I watch her take out the garbage. I saw her come home without her kids (age 3 and 1.) I watched, and I cried. I watched and I cried and I hurt so badly inside, because it doesn't take much to remember when it was my turn and I screwed up and I lost everything. <br /><br /><br />I talked to her the other day and I let her know a little bit about my own story, and about how at least over here, no one is judging her and no one is thinking she is bad. I've heard her story about what happened to her daughter, and I don't doubt her truth. I've also been in her shoes. Slightly different circumstances and slightly different time, but I've been there. <br /><br /><br />Because I am poor (not wealthy) in funds, and because we can afford without help but with some help the things that we need, I live here. I live here and every day I am reminded of yesterday. <br /><br />I also live across the courtyard from a woman I went to treatment with. And her boyfriend. I was in treatment with him too. (They met in treatment.) She was/is my closest friend here, and I've watched her spiral back into crack for the past year. And tear out our friendship and my trust bit by bit. It happens, and I don't hate her, but I can't trust her. But it reminds me why I'm here, what brought me here, the joys I have that others don't (even though we aren't wealthy or well-to-do we are so loved!)<br /><br /><br />I've been thinking a lot lately about how I got here and where I've been and I guess the people around me are reminding me. I’ve found that I can find so much more than shame in my past choices. I’ve learned that shame is such a transitory emotion. I’ve learned these things and I realize that it has taken me many years to realize them. And it hurts to watch this young girl across the way and know that I can tell her these things, but it won’t be real until she learns them herself. <br /><br />And that is a long long road.Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com9tag:blogger.com,1999:blog-2536178837256094246.post-54134507148069370402008-12-24T12:24:00.001-08:002008-12-24T13:04:49.218-08:00A 7.0 Victory! ...among other thingsI received in the mail today a letter, a letter from my humble new family practitioner, who with the help of a dietician and a diabetes educator, has agreed to monitor my diabetes through the duration of my pregnancy.<br /><br />I left my endocrinologist of five years a few weeks past for this doctor, and I am very glad that I did. <br /><br />Leaving old friends/foes aside, back to the letter. The letter indicated that my a1c is 7.0!<br /><br />Yay!<br /><br />A few of you may be scratching your head, wondering why oh why a pregnant woman with type 1 diabetes should be happy with a 7.0 a1c.<br /><br /><br />Here is why:<br /><br />The first month of my pregnancy my a1c shot up from a 7.2 to an 8.6. Since that first month and terrible high, I have been desperately working to lower that a1c. And the lowest I have been able to manage this entire pregnancy is a 7.5. Until now.<br /><br />I am plagued by gastroparesis, which, in case you didn't know, worsens in pregnancy. The gastroparesis has made easy peasy blood sugars a thing of the past. It was okay when I ate very little (thus the drop from a size 12 to a size 6 before I got pregnant) and was okay with a 7.2 a1c. That changes however when faced with constant nausea and an overwhelming desire to stuff my face. My gastroparesis, combined with my hypoglycemic unawareness, and quite frankly my fear of lows, has greatly limited my success with blood sugars. This 7.0 is a charm. A charm!<br /><br />I honestly did not believe I would or could reach this a1c during this pregnancy.<br /><br />My general practitioner who manages my diabetes is going to work with me to help treat my gastroparesis after I deliver. However, I expect things to even out after my pregnancy. As stated before, my gastroparesis is not nearly the issue it is right now when I am able to eat small amounts infrequently, which, if you have gastroparesis and are not pregnant, you know is easy to do. I fill up fast, and if I eat past being full I pay the price in discomfort. It is like symlin, just different :)<br /><br />On other news, <br /><br />I am 22 weeks 2 days pregnant! Yay! <br /><br />There was a quick question about how Bob the Babe and I arrived at Thia Apple's name. I am happy to say that yes, there is a story behind her name!<br /><br />Thia is a name I have derived from the Greek Name Ilythia, which means Goddess of Labor. Thia, alone, means Divine One or Goddess. But we named her after the Goddess of Labor? And why? Because this pregnancy, from even before I was or knew I was pregnant, has been a labor. A labor in love, perhaps, but a lot of hard work! I wanted our baby girl's name to reflect this love in labor. Bob, however, hated the name Ilythia. Thus the Thia.<br /><br />As for Apple? Well when Bob the Babe and I agreed on the name Thia, I asked him what her middle name should be. I believe it was the end of a weekday and we were casually lounging in our bed, not ready for bed, just lounging for a few minutes before we were off to whatever we were to do next. And Bob? Bob said Apple. I think he meant it as a joke, but ya know, Apple was just a really cool fit so we stuck with it!<br /><br />So there you go, the reasons behind the name: Thia Apple Waline<br /><br />Now, we have also been doing hockey this year. Gracie is in hockey this year, along with Sandis. <br /><br />Gracie is a junior mite, and you wouldn't believe how her strong legs are taking her about the ice. I love to see her working the thick muscles in her legs. You should remember last year (September 2007?) Gracie was diagnosed with hypotonic cerebral palsy. The diagnosis was met without much ado (we cared, but not really because it changed nothing) but, to know the gross motor delays my daughter has struggled with since birth while I watch her on the ice learning to play hockey, well....She really loves it out there too. She is such a jovial, creative, funky child! She plays more often with boys than girls, and in her own way, despite loving horses and kitties and puppies and the color pink, she is a down and out true to life tom girl. She also really works hard out there! She only used the bar (walker) to help her skate the first four practises. After that, and after some strong encouragement from mom & dad, she abandoned the bar and ever so slowly developed her skating stride. It was so cool to watch! She didn't even participate with the other kids those first few weeks; she just rythmically moved up and down the ice, slow as a snail yet determined as any woman that comes from my lineage is destined to be!<br /><br />Now on to Sandis. Sandis is in his second year of hockey this year, and he is in the mites. Sandis is a different skater and player this year. He is still an aggressive boy who abandons all protocol on the ice, but he is much more refined this year! We are finishing up a short stint over these past few weeks as a goaltender. Sandis played goal once last year, in full gear, and anounced shortly afterwards that he hated goal and would never play again. I can imagine that for a boy with his perfectionist tendencies, that playing a position that you are bound to have multiple mini failures in just as a par for course is difficult! Well, this year when the coaches asked who was interested in playing goal and practising in goalie gear, my lovely boy raised his voice, and probably his hand.<br /><br />I wasn't so sure. He'd hated it so much last year! But he was insistent. So we grabbed that extra 20 to 25 pound bag of gear (in addition to his other hockey bag full of gear that we still needed) and we ventured into goaltending adventures.<br /><br />Sandis has practised in goalie gear three times now, and played one game. He is playing his last game as a goaltender this coming Saturday. In addition to practising on the ice, Sandis has also been coming home and practising blocking "pucks" (harmless plastic balls that damn well better not fly!) in my kitchen. I watched Sandis play his first game as goalie over this past weekend. I honestly think they have traded my boy in for another child. This boy could not be him! I noticed things were off (unusual) in the locker room, where amidst all that young boy chaos as they dressed for their hockey game, my son was unusally calm, focussed, and alert. He cooperated quietly and easily as I worked with his coach to get not only the usual hockey gear (minus shin pads, chest pads, & elbow pads) on but also while we strapped on huge bulky goalie pad to his legs and fastened the monster goalie chest and arm protectors on his thin frame. He cooperated. He helped. He was in tune. He asked questions that were pertinent to what was going on. He was completely with us, in tune with us, communicating with us, and he did all of this while in a chaotic room of noisy boys. Where is my child? Or is this my child and I am just meeting him for the first time?<br /><br />Sandis purposefully took to the ice with his coach where I watched him carefully listen to instruction. And then I watched my boy, my beautiful boy, pay attention to ONE puck with a focus unabled to be paralleled by even most children his age for forty-five minutes. <br /><br />My son focussed on one thing, with one intent in mind, with absolutely no outside redirection, for almost an hour.<br /><br />I realized that day, during that game, that somehow this game of hockey, this game that I have loved for so long and have passed on to my children, somehow this game took my boy and gave me back my son.<br /><br />Don't get me wrong. I mean, I've always had my son. But for two years now we have had a diagnosis and services and evaluations that have focussed not on the child but on the disability. And I have worked so freaking hard to ensure that my boy has the supports he needs so that things like this are possible for him. But really. That day, Sandis wasn't a child with a helper. He wasn't a child with a disability. My son was a goaltender, playing goal, and doing all he could to not let that puck in. He was just a little boy, and he was my little boy.<br /><br />And as I've pondered this realization about hockey, how it took this boy from a diagnosis and services rendered and made him back into a little boy, I also realize what it is doing to my little girl. My little girl isn't a girl with diabetes or a girl with braces on her legs out there. She is a little girl playing hockey, and damnit if she doesn't look like any other kid. But she isn't. She's mine.<br /><br />So what does all this rambling come up to? <br /><br />Hockey took my children, and turned them back into children. Just kids, having fun, playing hockey, like all the other kids. And I have what I had before I learned they were different, and before I knew what a disability is and what it could mean to me. I have those same kids, minus the limitations that a disability label can put on a child. Minus the limitations. Because what county case manager, while administering Sandis's waiver funds, would stress the importance of a normal activity like hockey? They wouldn't. Only parents do that. Case managers stress therapy, not realizing that the best therapy is not in a doctor's office but rather in the day to day activities that every other family and child is participating in. Those same day to day activities that you lose more and more of the more you add therapies and doctor's appointments. Somethings gotta give. I'm glad we chose hockey. <br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidFctqhI4IBbKFf_9tudTdbJEqnZBcXwkYBBoRB1fUpEoHDfxEScdaliKIAAScEF2AfqsQd5wiMHjwYMWlJ9erzNncLgchU3YrWnS6FhNjIxe4_Sfu2gzGM7ATtXqYxMmpEcpzA7l7xSw/s1600-h/4.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 231px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidFctqhI4IBbKFf_9tudTdbJEqnZBcXwkYBBoRB1fUpEoHDfxEScdaliKIAAScEF2AfqsQd5wiMHjwYMWlJ9erzNncLgchU3YrWnS6FhNjIxe4_Sfu2gzGM7ATtXqYxMmpEcpzA7l7xSw/s320/4.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5283465411030911730" /></a>Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com8tag:blogger.com,1999:blog-2536178837256094246.post-68874656555958364402008-12-19T09:24:00.001-08:002008-12-19T09:24:46.361-08:00Thia AppleOur perfect little beautiful Thia Apple is planning to make her appearance sometime in April. I can’t believe her arrival is so imminent.<br /><br />Yet in our hearts and in our family, little Thia Apple is already here. She is the newest addition to our family, and we smile and giggle all in wonder of her.<br /><br />We are anxiously setting up her space in anticipation. Little Thia already has a home and many many hearts that are stolen by her.Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com2tag:blogger.com,1999:blog-2536178837256094246.post-62474847071177956312008-12-10T05:49:00.000-08:002008-12-10T06:33:08.246-08:00I have been reading.It is no wonder, really. I have an ultrasound Tomorrow. You know, the big one. The high clarity, performed by a physician so if there is something wrong he is already in the room to tell you the bad news ultrasound. I guess you can say that they don’t waste any time or resources at the neonate clinic. <br /><br />I have been reading about families who received adverse diagnoses for their baby while they were still pregnant. They received diagnoses that left a door open for them to abort their child. They received diagnoses that, in the medical professions’ view, lessened that baby’s right to life and lessened the mother’s ability to protect that life and the dignity owed to it.<br /><br />Many, many of these babies died. Almost all of these babies lived, after birth, for a certain amount of time. Some of these babies were surprises, and did not have the condition their parents were told the baby had. <br /><br />All of these parents were offered abortions and all of them chose to give their baby life, no matter the length of that life.<br /><br />I realize this is heavy, tearful reading for an expectant mother who in a matter of hours (albeit at this point around 26 hours) will be having her own diagnostic ultrasound. However, this reading has not left my stomach in a knot. I am not afraid of what we will find tomorrow. I am not anxious for a “loss.”<br /><br />I have two children, both beautiful, both healthy, who both at some point received a diagnosis which caused me to grieve. I did not want these diagnoses, and I never imagined my life with them. <br /><br />However, their diagnoses in no way diminishes their role in my life and their place in my heart. <br /><br />I tell my children that we are having a baby, but they will both always be my babies. No matter their age, no matter their temperament, they will always be my babies, attached to me by a virtual cord that is not even severable by death. <br />It would be foolish to think, even for a moment, that their position as my babies could ever be diminished or changed by a diagnosis. <br /><br />It is no different for this child, the child I carry inside of me.<br /><br />I have routinely refused all genetic testing and profiling thus far in this pregnancy. In fact, while maintaining contact and communication with my endocrinologist, I have really tried to just stay out of the doctor’s office this pregnancy as much as possible. I am enjoying my baby and the time that only the two of us share. I am trusting in the natural progression of pregnancy, and I am not afraid. <br /><br />So why this ultrasound? Why this ultrasound if I don’t want to know?<br /><br />We want to know the baby’s sex. We want to know if we are pink or blue and we want to foolishly buy into flagrant baby color schemes! Ultimately, I also plan to spend the majority of my labor at home, alone, with my husband. I will not do this, however, if this ultrasound shows that there are concerns with the baby. <br /><br />I wait, excited to know which side of the gender fence this baby will land on. <br /><br />And yet, I don’t wait. Because although I want to know the results of the he/she equation, there isn’t much else I really want to know.<br /><br />(Edit: If you would like to read the stories I have been reading (I have now read them all!) go here: http://www.benotafraid.net/)Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com5tag:blogger.com,1999:blog-2536178837256094246.post-68377124989582017622008-11-25T07:18:00.000-08:002008-11-25T07:19:14.724-08:001772 years later I still feel the vicious bite of that number, its recurrence bitingly ironic.<br /><br />Rarely does the grief associated with my daughter’s diabetes diagnosis reveal itself. Time has dulled the experience. <br /><br />A change in my peanut’s treatment needs temporarily flares this cyclical grief and I submit to raw feelings with little hope of staunching the spread.Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com1tag:blogger.com,1999:blog-2536178837256094246.post-71875299952477153202008-11-19T05:22:00.000-08:002008-11-19T05:36:19.655-08:00I am not broken<em>I am not broken<br />I am whole.<br /><br />I feel I love I sing I cry.<br />I am not broken.<br /><br />I am not in pieces <br />I am not put together<br />I am just as I should be.<br /><br />I am not broken<br />I am<br />whole in Gods’ eyes<br />whole in my husband’s eyes.<br /><br />I am mother student person whole.<br />I am not broken<br />I am whole.</em><br /><br /><br /><br /><br />Do you know how it feels to be broken? <br /><br />Do you know the feeling when others perceive that you are broken; that they feel you cannot accomplish what your body was simply created and put to task to do without their guidance because you are less than whole, less than perfect, lacking, diseased, or broken? <br /><br />Do you know how it feels to have the label broken?<br /><br />I am not broken, and perhaps, I am using the form of verse to state this fact, to share its truth, and to broadcast my realization that their truth is not mine. I am not broken. <br /><br />I am whole.<br /><br /><br />(edit: The pregnancy is going beautifully. I am 17 weeks and 2 days along. My kidneys are functioning beautifully. My a1c is 7.5. My gastroparesis is HELL. My poor hubby thinks I have the worst breath on earth, but I am doing the best I can. My baby is beautiful and whole and content and deeply comfortable within my warm and fluid depths! <br /><br />This pregnancy is a journey not just as I embark on the creation of my final child, but also a realization that I am not a statistic, I am not a number, and there are choices that I can make in regards to my body and my care that perhaps others may not understand. <br /><br />I am not my diabetes, my vascular system, my back disease, my kidneys, nor even my a1c. I am a person that has a person within me. <br /><br />I am blessed with one of the most arduous yet awesome tasks that God has perhaps ever seen fit to task any woman with. That is to aid in bringing a child into the world. I am working hard, and trusting God; trusting that God does not make broken people. <br /><br />This entry is intensely personal and painful for me.<br />I will perhaps never describe to anyone (other than my husband) exactly what this entry is for and to me, but I think you can understand the general gist.)Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com4tag:blogger.com,1999:blog-2536178837256094246.post-22336371135215609302008-10-16T06:33:00.001-07:002008-10-16T06:33:24.199-07:00The New Piece of the PieI’ve kind of been going back and forth as to whether or not I should share my latest news, or not, but I guess here goes. I am 12w3d pregnant, and so far so good. Outside of some severe morning sickness (which has now gone on its merry way) I’ve been okay!<br /><br />For those that don’t know (most do), my pregnancy is high risk. I have type 1 diabetes (for 17 years), gastroparesis (delayed gastric emptying, problems with my vagus nerve in my stomach), hypoglycemic unawareness (I don’t feel my low blood sugars), degenerative disc disease, and spondylosis (arthritis in my spinal canal and subsequent narrowing). <br /><br />I have two children, ages 8 and 5. I am also newly married, on July 2 of this year. I am 30 years old. <br /><br />Bob and I decided to try and have children right away, immediately after we got married. He doesn’t have any biological children, although he calls my two his own. Our reasoning to try right away is because I am 30 and have had diabetes for 17 years. It is known (and I was cautioned) by my doctors that if I started to have kidney problems or eye problems, those conditions typically accelerate during pregnancy which would mean that my personal health risk (and the baby’s risk) would be much higher if I had those diabetes complications. I consulted with all my doctors, had my meds changed around, worked on my blood sugars, and got the okay to be pregnant. I had my kidneys and eyes checked and both were great. Since I have been diabetic for so long, I felt like it was only a matter of time before I had kidney or eye complications so I figured the sooner I have this child, the better. <br /><br />So my husband and I got pregnant, IMMEDIATELY (like the very first week we tried!)<br /><br />I have bi-weekly appointments with my endocrinologist and at my most recent appointment with my endocrinologist she told me that although before the pregnancy I did not have noticeable issues with my kidneys she now believes I have stage 2 diabetic nephropathy (There are 5 stages, the final being End Stage Renal Disease). As stated before, this condition typically accelerates during pregnancy, so I can expect my kidney situation to worsen throughout the pregnancy. However, after I give birth, my kidneys should return to the health they are at currently, which is easily treatable with medication that cannot be taken during pregnancy because it causes birth defects.<br /><br />Almost all women with nephropathy develop pre-eclampsia and 90% deliver before 34 weeks gestation. 70% or more of women with diabetic nephropathy deliver via c-section. <br /><br />I am sad, sad, sad. I just feel like we did all we could to ensure this pregnancy was as healthy as possible. We changed my meds around. I see the doctor constantly. I’m under constant stress health-wise, and although I knew this would be hard, it felt like I could do it. This throws an entire new wrench into the whole pregnancy. Not to mention aside from that I am dealing with the diagnosis of a new life-long eventually life threatening condition. (I know, over-dramatization! My mom has taken meds for her kidneys for over 10 years with no progression, but still!)<br /><br />The day after I received my diagnosis I went and bought diamond earrings. True to form, I’ve been wearing my diamond earrings and a beautiful diamond heart necklace my mother in law gave me because it just seems the jewels lift my heart and mind. It sounds silly, but the sadness I feel is intense. I am 30. I feel young, not kidney disease material! That may not be rational, but I don’t feel very rational. I feel cheated of health.<br /><br />I know my chances of returning to almost normal kidney function after I deliver is very high, and I am thankful that as of right now my blood pressure is normal. Knowing these things, however, does not stop up my sadness. I can’t turn back now. However cliché this is, I feel as though I am on a train that has no stops, a direct shot straight to wherever I am going, and wherever that takes me (us) I sincerely hope that the end result is a baby with health enough to survive.Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com6tag:blogger.com,1999:blog-2536178837256094246.post-35184748838360236802008-08-30T14:49:00.000-07:002008-08-30T14:53:13.125-07:00Fun With Babies<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTx3wYfKao7mYM0_c4YBQlzsDCOUBhtYgp16LlJV854kvKJA4zFiMjsCIjDH86OSuSpM1HpBY7rxJJNCpiQdCRJ7ySl8jKvudeBczdnwaHD5x9TXk0kivVXso-75scYHzY4XRh9HZbBSU/s1600-h/baby+news.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTx3wYfKao7mYM0_c4YBQlzsDCOUBhtYgp16LlJV854kvKJA4zFiMjsCIjDH86OSuSpM1HpBY7rxJJNCpiQdCRJ7ySl8jKvudeBczdnwaHD5x9TXk0kivVXso-75scYHzY4XRh9HZbBSU/s320/baby+news.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5240431491526279970" /></a><br />Anyone care to guess what would warrant giving both of the kids a baby doll? <br /><br />Reactions? Gracie is Psyched! Sandis, well it took him a few minutes but he came around!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidFrd-5-n68mj9uLYFP3KfCMkFWJuXPDgGVogcy-v99pOEVpxvL1-MK7EwLNyS50i51yOOEh1P6i9ZgHIkgRRdPGBFC51-kc9thfkac0zKUlvv6htx8JKN6FHv1_mm8Jof1WCdxXB3OhM/s1600-h/baby+news+2.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidFrd-5-n68mj9uLYFP3KfCMkFWJuXPDgGVogcy-v99pOEVpxvL1-MK7EwLNyS50i51yOOEh1P6i9ZgHIkgRRdPGBFC51-kc9thfkac0zKUlvv6htx8JKN6FHv1_mm8Jof1WCdxXB3OhM/s320/baby+news+2.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5240431980142096482" /></a><br />How did we share the news? I wrote a note that read: "Mommy is going to have a baby." We sat the kids down on the couch and I gave Sandis the note to read out loud. It took him a minute for it to sink in. After it did? We handed out the baby dolls, which will be good practise for when the real one comes in April or May!Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com8tag:blogger.com,1999:blog-2536178837256094246.post-38410769188615153002008-08-22T12:24:00.000-07:002008-08-22T12:38:27.527-07:00Medication and Other Such ThingsWe are a medicated group. <br /><br />Sandis recently started stimulant medication, only one short week ago. <br />I am on many medications including Lexapro, prenatal vitamins, Novolog, and Percocet as well as over the counter remedies like Metamucil, Colace, an occasional Woman’s Correctol, and Calcium Supplements.<br /><br />Bob has his medication of choice, and Gracie? She gets the all-powerful Lantus.<br />These eleven lovely medicines help to maintain the health and well-being of my family. <br /><br />I wonder what families like mine would do without access to the medicines we take? <br /><br />For one, Gracie and I would be dead. So with that in mind, our family would be a two-person family consisting of Sandis and Bob. That effectively cuts the medications down to two: Sandis with his stimulant and Bob with his med-of-choice (respecting privacy here!) <br /><br />Where would they be without their meds? Bob would be where he was before he started his new medication, and well, he wouldn’t have a wife to be none the happier about it (I’d be dead), so who is to say. And Sandis? Sandis would be struggling, just like he was before medication (and just like he does still, just differently with medication) and he wouldn’t have a mum to help him out. Fortunately he would have Bob.<br /><br />What am I getting at? I’m not exactly certain. Perhaps I am feeling tied to medications lately. Sandis and I both take Class 2 Medications which means that if we want our prescription filled we need a paper prescription. This involves an extra trip to the doctor to pick said prescription up. This extra element certainly adds an errand or two to the routine, and it certainly can add to the feeling of being chained to the medications you take.<br /><br />My switch to Percocet is relatively recent. I had been taking Ultram and Elavil for pain. The duo worked and managed my pain well without the addition of a narcotic. However, those medications aren’t recommended for use during pregnancy. Percocet is actually in the same class as Ultram, but after consulting with several doctors and finally my pharmacist, the general consensus is that I should settle on the medication that I can take the least of AND the medication for which there has been the most opportunity to see how babies are affected when it is taken during pregnancy. I initially switched from Ultram to Vicodin, but Vicodin was terribly ineffective in regards to treating my pain. It did work well at contributing to nausea and mood swings though! Thus the switch to Percocet ensued as safety questions and dosing preponderances were resolved. The pain relief is fabulous, and at only 1 pill per dose I really am not all that dopey. I do however struggle some with concentration. <br /><br />It was an interesting experience deciding which medication to take while pregnant. My primary physician is definitely inclined to seek outside opinions, which I think is fabulous. I don’t necessarily want my doctor to be the most confident dude with a board certification but rather the D.O. that is going to take the time and utilize the resources he has (including professional colleagues!) to ensure that he is helping to coordinate the best care possible for me (his patient!) When all was said and done, my primary physician consulted with my endocrinologist, an obstetrician, a perinatologist, my interventionist pain physician, and my pharmacist about appropriate pain medication during pregnancy. Should you be disinclined to count, that is five consultations! My doctor called me at home, work, or on my cell phone after each consultation to discuss the other doctor’s opinion and reasoning behind it. The entire experience was grounding and helped me feel confident in our decision to try and make baby #3 (Bob’s baby #1) while managing my other conditions. I cannot sing the praises of my excellent primary physician enough! <br /><br />I do have other conditions beyond my degenerative disc disease, however, that need to be managed during a pregnancy, most notably my type 1 diabetes. Any woman with type 1 diabetes who has been pregnant understands the sprint-like marathonian qualities of this particular (or rather peculiar?) set of circumstances. I have been instructed to test my blood sugar when I wake up, before I eat, 1 hour post-prandial (after I eat), and finally before bed. I will fax in my blood sugars every Monday and Thursday. This is actually considerably easier to do with my RealTime system (continuous glucometer.) I am shooting for the 100-120 range and under 180 1 hour post-prandial. It really isn’t safe for me to be under 100 because I can drop so quickly and don’t feel my lows. Since I have started trying to be in that tighter range I have been fairly successful, generally being 100-135 although the 1h pp is a difficult sugar to have under 180. I receive specific ranges when I see my endocrinologist on September 9th and at that point I will share them! The nurse didn’t share the typical ranges because they won’t apply to me. <br /><br />My final condition that could affect pregnancy is gastro paresis. This condition has really done a butt-whooping on me this past year and I have finally taken some specific actions to address it. There are quite a few dietary changes I’ve made that significantly helped me to feel better while reining in unintended weight loss. I have unintentionally lost 35 lbs since last September. I initially thought it was a side effect of my back pain. Unintended weight loss is a very common side effect of gastro paresis. I was diagnosed last September (right around the time of my back surgery) but have not pursued further treatment until recently, putting it off for other more pressing matters. The fact that I could not stop losing weight was an eye-opener while working with my doctors. My lowest weight was 130. I am 5-6-1/2” so I was never underweight but it is good to get a handle on things while finding other ways to get the nutrients that my body isn’t getting from food. During a pregnancy I would need to eat six meals a day and continue to take my vitamins and calcium supplements. I also have Ensure on hand should I be having a particularly rough time with eating which will help replace calories I might not be able to consume otherwise.<br /><br />Sandis, as mentioned earlier, began his stimulant medication this past Friday. He actually began taking Concerta, which is a long-acting Ritalin. The day that Sandis took this medication for the first time happened to be a day that Sandis was home for the day. I had taken the day off to prepare for a family trip to the family farm. The drive is about three hours, and we were planning on staying there Friday, Saturday, Sunday night and then leave first thing Monday morning. I had quite a bit of packing to do for a family four (and two diabetics, ack!) I wasn’t around Sandis all that much because of this, but he was at home with his PCA doing his own thing including chores. We had celebrated Sandis’s eighth birthday the day before (a few days early) and Sandis had gotten a desk (with 6 drawers!), a desk chair, and a skateboard. The addition of the desk to his bedroom had created a chaos in his room that is paralleled perhaps only by the Christmas morning after-present siege. Sandis’s chore that day was to clean his room and in turn organize the contents of his room. This is typically something that requires much redirection and involves many tears and tantrums. It tends to culminate in a room half organized with Bob or I completing the task while perfecting what Sandis did manage to complete. It is a painful ordeal for all involved. Imagine my surprise when I came home from running errands to find that Sandis had methodically cleaned and organized his room. He proudly showed off each drawer outlining its purpose. He had a car drawer. He had a music drawer. He had a pencil and pens and notebooks drawer. He had a video games drawer (of course!) Sandis had organized not only the six drawers in his desk but also nine additional drawers in smaller toy dressers, his book case, and the top of his dresser. I had no idea this boy had it in him. <br /><br />His PCA told me that she kept expecting him to be “done” but that she just “went with it” while he was still willing to work on his room. I have heard comments that Sandis is more “socially aware” and more chatty on his medication. Sandis himself told me that he thinks the medication will be helpful for school because he won’t get as frustrated. I see a HUGE reduction in Sandis’s impulsivity. This may end up redefining how we approach services for Sandis. <br /><br />Oftentimes children with autism spectrum disorders don’t respond typically to medications, especially stimulant medications. We took a bit of a gamble with this medication, but I am really glad we did. <br /><br />We do still have a few issues to iron out though. Side effects such as reduced appetite and reduction in ability to sleep are things that we are dealing with. We have been trying to ensure that Sandis has a snack every two hours. He isn’t hungry that often as a rule with this medication but if he doesn’t eat he will get a stomach ache. Sandis does NOT like the stomach aches so we are trying to prevent them. He also hasn’t been sleeping well every night. I think we need to make sure he is taking the medication before 8 am. He isn’t getting to sleep until around 9:30 or 10pm. He isn’t overly crabby though, so while the sleep thing is a concern if he is feeling okay that is a good barometer for how acutely it is affecting him. This medication is very long acting, and we may need to switch to a medication that needs to be taken more often so we can get more dosing accuracy in the afternoon and affect initial sleeping less. We are rather new in this process, though, so I don’t have the answer to that yet. We did just increase from 27mg to 36 mg as the medication visibly loses effectiveness after about 8 hours. <br /><br />Medication updates aside, do you ever feel tied to your medication?Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com1tag:blogger.com,1999:blog-2536178837256094246.post-79910054140353362772008-08-12T11:31:00.000-07:002008-08-12T11:32:04.846-07:00The Vast Considerations (not Vas Deferans)I mentioned last post the state of my baby fever. I also mentioned complications both current and perhaps expected. <br /><br />Do you have any idea what sort of tiff doctors get into when you have several conditions, some requiring medication, and you tell them you want to have a baby? I had forgotten, but then again, I have never planned a child. Sandis and Gracie were both so blissfully unexpected. <br /><br />I have spoken to my endocrinologist, who surprisingly, had positive thumbs up for me. I will have slightly less stringent after meal blood sugar guidelines because of my hypoglycemic unawareness, but I’m where I need to be with my diabetes (as much as possible) in order to have a healthy baby. <br /><br />I have spoken to my primary doctor, who acts as my pain management/medication doctor. I went from a trio of meds, none narcotic, to a duo of meds, one narcotic. This is apparently what they do when you want to get or are pregnant. They change everything.<br /><br />My primary doctor has spoken to an obstetrician and a peri-natalogist. The peri approved our med set, and recommended I pursue further care with my interventionist pain physician to lower my oral medication set as much as possible. That is scheduled for the 19th.<br /><br />All this and I’m not even pregnant!<br /><br />Then of course, there is all that there is outside of this entire baby making madness. <br /><br />I registered the kids for hockey yesterday. Hockey is expensive. Really freakin’ expensive. However, despite the gregarious chunk of change we have plunked on hockey in the past weekend, upon closer examination I realize something. Hockey is the only activity my kids participate in. This will be Gracie’s first year. Hockey fees and gear, in total, amount to less than 2% of our annual income. While the appropriateness of the fees may be called into question, in light of the trouble we have paying our medical bills; a more appropriate question comes to light. Why is less than 2% of annual income for sports/activities for children perhaps deemed inappropriate yet almost 30% of annual income for health care expenses is deemed completely appropriate?<br />Pfft. I don’t need to get started on the ridiculous state of health care in the United States. Read my archives, however, if you want to learn more of my views. I’m sure I’ll have stuff to follow in regards to it, as well.Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com1tag:blogger.com,1999:blog-2536178837256094246.post-34297128495931721562008-08-11T11:45:00.001-07:002008-08-11T11:45:28.887-07:00You Give Me FeverAhhhh. Baby baby baby baby.<br /><br />Baby Fever. I have a bit of baby fever.<br /><br />Baby Fever is not without its own complications. Seeing as how I am a type 1 diabetic with more than one complication accompanied by a completely different chronic condition, I am no stranger to complications (t-1 diabetes 17 years, gastroparesis, hypoglycemic unawareness, degenerative disc disease accompanied by neuropathic pain.) Complications that complicate that whole innocent baby making process (well perhaps not the making process itself….)<br /><br />That being said….ahhhhh little baby baby baby baby baby. How does one decide that a baby baby baby should not be a baby baby baby inside of me? I want to believe that any baby of mine would be content simmering amidst my other internal organs, happy to some extent with the environment I have prepared for it, lacking though it may be in perfection. Thirty something baby-making with a complication or two may not be complication free for baby too. <br /><br />But in the end, I do believe, that despite med changes and body rages, that whatever baby baby baby God may grant to me and Bob the Babe-y may wallow quite contentedly in the womb that happens to be mine.<br /><br />Ah well, god’s will is more prescient than my own and we will see what baby baby baby may come to pass.Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com2tag:blogger.com,1999:blog-2536178837256094246.post-69385873590087220532008-07-25T07:43:00.000-07:002008-07-25T07:45:18.589-07:00Married!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAWpd0E2dx5GzatloLAKvZF0gsEgxPKT8BiG9Tm1em1BJf0v24Bow_8kthRtK2LDr_EQ7ZI4KEmRrWCAt5JR2ZUMyDoaL5IyB4qC_o8Eq6La1_LcscbEsOjdVpZQmeUKYGTIuGwSAKEgE/s1600-h/WEDDING.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAWpd0E2dx5GzatloLAKvZF0gsEgxPKT8BiG9Tm1em1BJf0v24Bow_8kthRtK2LDr_EQ7ZI4KEmRrWCAt5JR2ZUMyDoaL5IyB4qC_o8Eq6La1_LcscbEsOjdVpZQmeUKYGTIuGwSAKEgE/s320/WEDDING.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5226962737624937986" /></a><br /><br />Yes, we tied the knot! What else is there to say except that I have finally been given that partner I always wanted to have Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com11tag:blogger.com,1999:blog-2536178837256094246.post-66352345205489563342008-06-16T05:23:00.000-07:002008-06-16T05:24:03.591-07:00I Feel As Though an Explanation is OwedYes, things have been hectic. Yes, things have been crazy. These are not the reasons that I have been choosing not to blog. <br /><br />Yes, choosing.<br /><br />I have found that while I am no household name, in my community my name is more well-known as I participate in more activities that put my name front and center. This hinders my freedom for open speech.<br /><br />I have found in my advocacy work that I am involved with organizations planning various events and programs. I may ponder these activities often, but I am not free to share what is not yet to be. When I am representing not only myself but potentially also other organizations, it is not prudent to share many things. While I need not conduct myself in secret, it is typically not ethical to discuss ideas that are merely in planning stages and may never come to be.<br /><br />I have found that I cannot write about what is, and what may be. I have found that my speech is not free, not by any extension of law but rather by a mixture of events and circumstances that make sharing much harder.<br /><br />This blog has served as an excellent place to feel out my children’s diagnoses. It will not be an appropriate place to feel out my advocacy ambitions. While I imagine with the help of other parents I will accomplish much, my venue now must be more professional and more closely honor other’s confidentiality needs. <br /><br />I doubt I will be back, but then again, I may…Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com5tag:blogger.com,1999:blog-2536178837256094246.post-44408102978005574352008-04-16T13:07:00.001-07:002008-04-16T13:09:58.319-07:00Retail Bliss……Or SomethingIt has been some sort of interesting shopping infested divine interlude for me these past few weeks. I understand that perhaps that doesn’t make much sense. With that, I will branch off into some sort of explanation.<br /><br />I have lost upwards of 25 pounds since my surgery in September. Losing 25 pounds typically means you have to start replacing clothes as that will bring you down 2 to 3 sizes. I have gone from a 12 to either an 8 or 10(misses), or 11 (in juniors) in pants or shorts. In blouses I’ve gone from a Large to a Medium (in Misses), and from an X-large to a Large in juniors. I have gone down a size in underwear. I have also gone down a size in bras, and I even went down half a shoe size. The only thing that fit was my socks. <br /><br />Imagine the frenzy (and sadness, and anxiety) involved in replacing an entire wardrobe. Not a few pairs of pants, but also jeans, blouses, underwear, bras, and finally shoes. The clothes I owned were so large on me they looked sloppy, and although I did have some shoes that I could manage in I’ve had to do away with heels for the most part because of my back. This further exacerbated the shoe issue. It is fun to lose weight, yes. There is, however, a certain stress involved when you have limited funds to replace your wardrobe. <br /><br />I have guiltily, however, been enjoying shopping! I really can’t think of a better reason to blow money on clothes than losing 25 lbs. In fact, I feel a bit entitled to the frenzy. I’ve managed a few pairs of pants, a couple pairs of jeans, a LOT of socks ( I know my old ones still fit, but you don’t understand, this is a retail FRENZY we are talking about!), some panties, a couple of pairs of shoes (brown & black), a bra (just one), many skinny belts, and several fitted curvy blouses. <br /><br />This past weekend, I was indulging in shorts shopping. The shorts I wore last year were big at a size 14, but not yet sloppy as I was still wearing a 12. This year those shorts won’t even stay on my hips. So I began to look for shorts that will make my somewhat transparent legs look delectable. But everything I tried on in the Misses department was too big! I realized I would need to go down a size…to an 8. <br /><br />I felt like crying. I was thinking about all those great pants I bought, all a size 10...All those clothes. Will they still fit? ...All that money and all those beautiful wonderful sexy pants. God I hope they still fit. I don’t want to lose more weight.<br /><br />I ended up deciding that I would shop for shorts in the juniors department, where size 11’s are still comfortably fitting perfect. <br /><br />The thing is; they don’t sell Dockers in the junior’s department.<br /><br />….Sigh….Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com3tag:blogger.com,1999:blog-2536178837256094246.post-91101620720182664962008-04-11T11:02:00.000-07:002008-04-11T11:07:24.693-07:00What Kind of Health Care Reform Does Bob Olson Support?<object width="425" height="355"><param name="movie" value="http://www.youtube.com/v/PNs76t_KLF0&hl=en"></param><param name="wmode" value="transparent"></param><embed src="http://www.youtube.com/v/PNs76t_KLF0&hl=en" type="application/x-shockwave-flash" wmode="transparent" width="425" height="355"></embed></object><br /><br />Bob Olson would like to see our country with single payer health care, and he has some great ideas to get our country moving in that direction.<br /><br />P.S. I found this great excerpt on the Blog of the <a href=http://liberalinthelandofconservative.blogspot.com/2008/03/olsontinklenberg-debate-health-care.html>Political Muse.</a>Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com3tag:blogger.com,1999:blog-2536178837256094246.post-69900180967688593612008-04-08T06:02:00.000-07:002008-04-08T06:03:02.486-07:00On Being RichThe other morning, on the way to work and school, I was having a conversation about politics with my randy little guy Sandis. We were talking about the differing priorities when one is well to do and when one is not so well to do. We talked about the inclination to preserve the funds that one has coming in, and preserve the freedom to do what one chooses with that income. We also talked about something called “social justice” and the health care quandary our nation seems to be in.<br /><br />This may seem like rather heavy material for a 7 year old, but I find that Sandis’s ability to comprehend the heart of the matter in regards to politics is quite uncanny. So after some conversation, and then some conversation about the differences in theory between the GOP, DFL, and even the GREEN, Sandis had something to say to me. <br /><br />“All these people have it wrong, though, Mom. Being rich doesn’t mean you are loaded with money. It means you are loaded with love and family all around you.”<br /><br />So simple. <br /><br />It is easy to say when you are 7, and all your needs are provided for. He has clothes when he needs clothes, shoes when he needs shoes, a couple of helpers to help him accomplish things he would have trouble accomplishing without, a behavioral therapy programmer, an entire team at school dedicated to helping him succeed, food & medicine without need of conscience in regards to their cost...<br /><br />This too will pass. This boy will grow up. And while Sandis will always be loaded with the love of those around him, he will learn how it is hard to prosper, flourish, grow, and appreciate ones circumstances when basic needs are ignored and not met. <br /><br />Being rich is not about money. Sandis is right on about that. Being rich means that society (you & me) cares enough about you (or your children, or your parents) that your very basic human needs are met. Basic human needs that include food, clothes, shelter, medical care, compassion, empathy, and love (and I’m sure a few others.) Some of this we can get from our family members. Other things we must rely, at times, on society to provide should one be unable to provide independently for oneself. <br /><br />The sum of a nation, of any society, is merely the heights its most vulnerable citizens will reach. <br /><br />What a unique concept that is: to judge our society not by the richest or most powerful, but on the poorest and least powerful.Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com0tag:blogger.com,1999:blog-2536178837256094246.post-74373391512352512752008-04-07T09:41:00.001-07:002008-04-07T09:41:36.181-07:00Just A Little Something.......On Health Care Reform in MNHF 3391 & 3390 are health reform bills in the MN House getting a lot of attention from lawmakers lately. <br /><br />HF 3391 & 3390 concentrate on a few erroneous assumptions. The first erroneous assumption is that preventative care saves money. Would that it were so easy! Studies have actually shown that while preventative care in some instances may save money in the long run, most preventative care actually costs more. (Expert characterization on Feb. 13, 2008, edition of the New England Journal of Medicine: "Although some preventive measures do save money, the vast majority reviewed in the health economics literature do not.") <br /><br />The second is doctor & patient overutilization. In order to address this, the new legislation proposes an extremely confusing third layer of “managed care.” This would force patients to once again have PCP’s (didn’t we prove managed care didn’t work in the 80’s?) These bills would also require physicians’ to absorb the risk that insurance companies typically do, by paying physicians not fee-for-service but with an annual fee per patient loosely determined by a risk algorithm not yet known. <br /><br />What does this mean? Hypothetically, your physician would receive $2000 to provide you primary care services for the year. Should your care cost more than this, your physician loses money. Should your care cost less than this, your physician will earn money. This seems to me like an excellent incentive for physicians to avoid chronically ill and underserved populations. <br /><br />Health care reform is important, but it is also important that we approach health care reform in a way that is not based on popular “myth” but on fact. Senator John Doll’s comparative cost analysis bill, which studies the major reform bills in the Legislature, would help us do just that.Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com0tag:blogger.com,1999:blog-2536178837256094246.post-4424582205912351892008-04-04T11:54:00.001-07:002008-04-04T11:54:44.881-07:00April is Autism Awareness MonthApril is Autism Awareness Month, and it is a wonder that this year, 18 months after Sandis’s intial diagnosis whereupon I was so afraid…..It is a wonder that this year I am not afraid.<br /><br />Why am I not afraid? Amidst all these murmurs, perhaps from one parent to the next, about the horrors of autism, why am I not afraid? <br /><br />Sandis with his joyful heart , precipitous smile, and eager gait is a child with autism. It is hard to be afraid of autism when my boy is such joy. <br /><br />It isn’t that things are never hard. It isn’t that I never wish things were different. It isn’t that I am not tired, and some days more than others. <br /><br />Autism, in my child, in my beautiful boy, is the most beautiful parts of him in the most curious presentations. Even his outrages, pure in their simplicity, lend themselves to something that perhaps means more than just anger, but an anger with humanity as it is. An outrage at the box society has trapped him in. <br /><br />It would sound pretentious to say I am grateful for autism. It would sound perhaps cliché to say that Sandis would cease to be Sandis if his autism were “cured.” <br /><br />It would sound pretentious and perhaps cliché, but I can’t imagine my beautiful boy in any other way.Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com1tag:blogger.com,1999:blog-2536178837256094246.post-65031479550935839572008-04-03T05:24:00.001-07:002008-04-03T05:24:47.107-07:00The Business of Being BusyI haven’t been blogging much. Which seems fairly odd for me as I have been religiously posting entries on this web site of mine since inception, August 26, 2006. It just doesn’t seem right.<br /><br />So here is the deal. Some things I can’t blog about. Sometimes things are sensitive enough of a nature, and seeing as how this blog is not intended in any way to be anonymous (try googling Sarah Rittmann) sometimes the sensitive stuff (not in feelings but sensitive as can be offensive to some I know) just wouldn’t be beneficial to post here.<br /><br />The other part of the deal? I have been excruciatingly busy. In a good way though. <br /><br />Bob the Babe moved in not long ago. I must say that the time needed to invest in a partner is significant. Add to that the fact that both he and I are learning the whys, how-tos, and all those other things that go into being in a relationship where marriage will soon be our common tie AND sharing a common residence and budget. We have a lot of work to do and we are learning to do it lovingly.<br /><br />I have been more and more involved with our local DFL. I do have my issues with party politics, as I don’t believe that my personal visions in regards to politics are partisan. But, apparently (and unfortunately), many of them are (and can be spun to seem to be.) I am a neighborhood leader in the DFL (precinct Associate Chair) and I have a large number of people in my precinct that need the benefit of one-on-one conversation about current issues. I live in a working-class neighborhood. The people that own homes in my precinct aren’t typically white collar folk. They are labor union folk who have worked hard for the small homes they have. This population needs a voice and needs to feel acknowledged. I really want to work to help them find it. My precinct also houses a large population of poor and disabled individuals. I can’t wait to share with this population, as I can’t imagine anyone who fits better into that shoe than I. <br /><br />I volunteered (just last night) to have a house party for one of our local candidates for MN House. Joanne Dorsher needs Democrat support and I’d love to help get her name out there. I was hesitant, if only for a moment, as I live in a townhome complex that is created for people whose income is under 60% of the median income of the area. I wondered, in my mind, how it would be accepted to have a house party for a candidate in a home that is perfect for me (and beautiful in my mind) but can be seen as kind of a local ghetto (alley of the poor.) Soon after I had this thought, I wondered how often candidates have come to my corner of the neighborhood. I wondered if any door-knockers had ever braved our doors. I imagined this candidate coming into my neighborhood, visiting with my neighbors, and I imagined a certain amount of local apathy dissipating. When you are poor, it doesn’t seem that candidates come to you often. What a wonderful opportunity!<br /><br />In keeping with this busy atmosphere, in a couple of weeks we are going to MAYO with the kids to the DANA child development and learning program. The kids will both be evaluated by a team of doctors and a comprehensive treatment plan will be created for them. I am hopeful to get some good input about both of the kids. We are committed to three days at this clinic, and it will be three days of intense doctor stuff. Which reminds me, I should really start talking to the kids about this “vacation.”<br /><br />I’ve also been writing a lot of letters. And not just letters, but hand-written letters. While at Partners last week, I learned something about our Senators and Representatives that perhaps I had not known before. Typically, when you write a letter to a Representative or Senator their assistant opens the mail and organizes the mail. Here is the typical organization tactic: hand-written letters on top, typed letters w/ pictures underneath (from constituents), then all other letters. Personally, if I write a letter to my Representative or Senator, I want them to actually read it. So from now on, all letters from me will be hand-written. It takes a little longer, but if it increases how likely the letter is to be read, well…..I’m sure you understand the benefit.<br /><br />Lastly, this past Monday I had an opportunity to meet with my MN House Representative Steve Gottwalt. Man, was he ever a nice guy! Representative Gottwalt is GOP, which means that often we find reasons to disagree on many issues. This time, though, we had many reasons to agree. There are currently two Democratic Health Reform bills in the MN House (HF 3390 & HF 3391) that I strongly oppose. Rep. Gottwalt also opposes these bills, but for very different reasons. For now, he is my ally. And perhaps, if I keep sending him information, he will soften on the single-payer idea (but I’m not counting on it.)<br /><br />I’ve certainly been on my toes lately, but I am grateful for every opportunity that has been granted me.Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com1tag:blogger.com,1999:blog-2536178837256094246.post-13801340790132876032008-03-26T10:40:00.000-07:002008-03-26T10:50:44.510-07:00Live the Change You Dream Of.Vivian over at <a href=http://danieldoo.blogspot.com/>Danieldoo</a> tagged me for this great memoir in six words. <br /><br />My memoir?<br /><br /><b>Live the change you Dream Of.</b><br /><br />What does this mean? <br /><br />It means that change does not stop with desire. It means that change is realized only because of action, and change happens most effectively and most sweepingly from the bottom up. <br /><br />I've been exceedingly busy these past few weeks doing just that. I've had quite the opportunity to advocate for and speak about the Minnesota Health Act (MN proposal for universal single-payer health coverage for all MN residents.) I've been given the opportunity to meet some amazing people, and without intending to, I have made my own profound impression on several local personalities.<br /><br />I am living, actively, the change that I dream of. <br /><br />So why have I chosen universal, single payer coverage as my focal point to advocate for?<br /><br />Insuring everyone under current private comprehensive medical insurance standards will not be enough. It will not help the under-insured (all of us!) It will not address the misuse of funds administratively by thousands of insurance companies. <br /><br />Single-payer is the only way to address these issues. Single payer is the way to cut health care costs by 27% if you insure only those who currently have insurance. Single payer is the way to cut health care costs by 5% if you insure <b>EVERYONE</b>. <br /><br />Universal, single-payer is not just ideology in politics. Universal, single-payer is common-sense policy which allows health care practise to have principles based on the health care model, rather than the business model. <br /><br />Live the Change You Dream Of.Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com3tag:blogger.com,1999:blog-2536178837256094246.post-2415727875076614832008-03-14T12:25:00.001-07:002008-03-14T12:25:39.471-07:00My kids grow up.My Sandis grows up. He has a smattering of freckles across the bridge of his flared nose. He is strong, persistent, and athletic. He is the fastest, the most competitive, the most driven. He is the most of everything. <br /><br />My Gracie gets older. Her patterned feet, her twisted legs, her fluttering eyelashes far atop pierced and dimpled cheeks. She is painted with pink, her cheeks so rosey as to seem artificial. She is conspiratorial, imaginative, and involved with scores of stories only narrated within her. She often holds a grudge yet despite this, wants desperately to be held, loved, and nuzzled. Gracie’s energy is bright, alive, and creative. <br /><br />I love them both so differently. Her independence sets her apart, and I forget she needs my touch. His dependence evokes my protective sense, and I forget he needs to be apart. <br /><br />So different, yet I am so very much in love with both.<br /><br />Tonight Sandis plays a hockey game at the SCSU Huskies playoff hockey game, between the second and third period. He will be playing hockey in front of a stadium full of cheering fans, and he harbors excitement and no perceptible fear. He is a star, my star, and he wants so badly to be in front of crowds with all eyes upon him. Bob is taking Sandis to the game and they will be the Bob & Sandis duo that is so important for them to be.<br /><br />Tonight Gracie will accompany me at a movie theatre. I will be undistracted by chores or other family members. I hope to pull her up warmly into my lap and push her hair back between my fingers, curls falling through the cracks. Gracie and I will be the mommy & Gracie duo that is so important for us to be.<br /><br />I am lucky. God, how lucky I must be.Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com1tag:blogger.com,1999:blog-2536178837256094246.post-82689913735144620262008-03-12T12:32:00.000-07:002008-03-12T12:43:06.062-07:00DFL Monthly Meeting - District 15I’m speaking tomorrow at the monthly DFL meeting. Up until recently, I haven’t been all that active in partisan affairs. It seems as though most things I am involved in, although obviously in one camp more than the other, are not considered “partisan” activities. <br /><br />It seems that not all disabled folk are in one party. Disabled folk (families, children, adults, pre-teens, teenagers) have all sorts of political views, but they all basically want the same things for themselves: Equal opportunity, equal access, etc. Associating with one party over another wouldn’t accomplish what they need, which is recognition of the problem and overwhelming social change to correct it.<br /><br />Tomorrow evening I will be speaking about the Minnesota Health Act at my district’s monthly DFL meeting. I’ve discovered, and decided, that I am the best person for the job of informing the public in my district about this bill and how it can change the face of health care (and business) in the state of Minnesota. I am determined to dispel myths and invite others on the campaign trail of single-payer universal health care for the state of Minnesota. Fortunately, at the meeting tomorrow night, I will have a captive audience (and hopefully an agenda item after me…) I’m not one to look a gift horse in the mouth, and having people seated with the intent to listen to me is exactly what I need to spread the word about this bill.<br /><br />Should you happen to live in District 15 in Saint Cloud, please hop on over to the DFL meeting tomorrow night. Just do me a favor, when I have my five minutes to share information about the Minnesota Health Act, please don’t point and laugh. I guarantee I will have something cool to share!Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com0tag:blogger.com,1999:blog-2536178837256094246.post-63605374167882912342008-03-11T08:22:00.001-07:002008-03-11T08:22:13.858-07:00On PovertyI’ve been extremely busy lately. I’m devoting quite a bit of my energies to advocating for (and lobbying for) the Minnesota Health Act. <br /><br />One thing has got me bothered, though. And perhaps it is just my oversensitivity. <br /><br />What is this bothering thing? <br /><br />A general lack of compassion among the people I am acquainted with. <br /><br /> I get the feeling that if all the poor people just up and died of some incurable Spanish flu bug they wouldn’t be the worse for wear (my acquaintances, as obviously, the impoverished would be greatly affected.) Unfortunately for my acquaintances, were that to happen, they would realize too late that there is always a “bottom” of the money totem pole, and perhaps they would now be closer to it. <br /><br />Poverty is not an indicator of a person’s low worth. Material riches are not a “good people” status quo we should all strive to reach. <br /><br />It is not about money people! Money, your house, your rings, and your fabulous wardrobe do not somehow make your opinion more valuable, more poignant, or more meaningful. It simply means you have the means to adorn yourself grandly, and even perhaps others. That is all. You do not suddenly possess more personal “human” worth as your means grow. <br /><br />I am not rich. I am not desperately poor. I have been desperately poor. When I was desperately poor I still had fears, I still had dreams, and I still read classic literature with fervor. I was no more and no less “human” or “valuable.” I was, however, less “valued” by society as a whole. <br /><br />Unfortunate, but true.Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com1tag:blogger.com,1999:blog-2536178837256094246.post-60097515360117424392008-03-04T11:05:00.001-08:002008-03-04T11:05:59.379-08:00A Leap of FaithWell, not exactly a leap of faith, but something to that effect. I have lost around 20 lbs since my surgery in September last year. I started at around 168 and I am weighing in around 148 now, with no indications that my weight is beginning to rise. With the decreased weight also comes a decreased insulin need. I would estimate that my insulin usage is approximately half of what it was this time last year. I am averaging less than 25 units per day, and often times I am under 20 units. <br /><br />The past couple of months I have been adjusting how I take insulin. If my bolus wizard cues me to take 3.6 units of insulin, I’ve been administering 1.8 units of insulin. This has been working fairly well, and although I have had a few lows (and a few highs) it seems about right. Today I took the final step (my leap of diabetes faith) and changed my ratios in my pump. My insulin to carbohydrate ratio is now 1/16 (it was 1/8) and my correction is 1/70 (it was 1/35.) I’m hoping to see some better numbers with this as my intent is to consistently bolus what my wizard prompts me to bolus. This should show me where I am with my ratios (to some degree.)<br /><br />Other averages of mine seem to be reigning in somewhat since my acquisition of the Mini-Link Transmitter. My morning blood sugars have been routinely fabulous and although I still have the odd night-time low (which I am hesitant to correct yet) I sleep much more soundly (and without inhaling my kitchen beforehand) because my pump <b>will</b> wake me up if my blood sugar drops low. I am still working to correct the multitude of lows that come with losing weight and decreasing insulin needs. I’m hoping my new ratios will help with this, along with the adjustments I made in the weeks prior to my basals. <br /><br />I am still markedly excited about and pleased with my transmitter. I can’t think of one thing (other than my pump, which I have had for 13 years) which has been more helpful in the care of my diabetes.Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com0tag:blogger.com,1999:blog-2536178837256094246.post-40607035158746239412008-03-03T05:31:00.001-08:002008-03-03T05:31:43.496-08:00Breaking up is hard to do…….But seriously, staying together is <b>wayyyyy</b> harder.<br /><br />Bob (the babe) moved in last Sunday. He is meshing (to whatever extent we both allow) his household with mine, and to be perfectly honest, growing pains in this regard are intensely painful, distracting, and infuriating.<br /><br />We dither between arguments long enough to make up, only to rage our fires yet again a few moments later. Fortunately the hours 10pm to 6am are blessed with quiet and peace (and a few snuggles.)<br /><br />I hadn’t any idea that this man I love is so hard to live with (nor he imagined me the same..)<br /><br />It occurs to me (quite recently) that commitment is no easy game, yet despite all this work (and fighting) I’m certain the end result will be quite worth it.Sarahhttp://www.blogger.com/profile/02841767505240383644noreply@blogger.com2