I have come to the realization that in the past thirty days, my life and life circumstances have changed so much that I have actually experienced a reality shift.
A reality shift, for me, tends to be defined by the things that happen in my life, and a lot of times, they really tend to be health related. I'd say my first reality shift, where how I viewed the world and my surroundings changed dramatically, was after my sexual assault at age 13. My second reality shift, coming soon after the first, was my diagnosis with diabetes. Reality shifts after that would include things like: getting clean off of methamphetamines at age 18, going to college and failing MISERABLY at age 20-21, having my son at age 22, recovering completely from a burst appendix at age 22, having my daughter at age 24, graduating from drug treatment for fentanyl abuse at age 25........These are the major things in my life that have changed, at the core of my being, how I view, interpret, understand, and experience the world around me.
I believe that I can safely say that within the last month, I have experienced a set of new reality shifts. I have gone from having a set of wild and active, healthy young children to being a single mom of two (TWO!!!) special needs children. Two cihldren that qualify as having childhood disabilities and are protected from discrimination because of these disabilities. Two children that are going to intensely need an advocate, are going to intensely need a parent who is not just a parent, but a life support. Wow. It is just a lot to take in.
A couple of months ago, Sandis starting school didn't consist of whether or not the school lunch system can support a Gluten Free/Casein Free diet. A couple of months ago school was an exciting new adventure, rather than a LIST of highly inconvenient (although needed) doctors/psychologist/psychiatrist/therapist appointments. In September, I had no IDEA what an IEP is. Now I'm gritting my teeth trying not to be too overwhelming and abrasive as I am trying to ensure that my son gets all the tools he needs in school to succeed. It is so different than what I ever imagined, expected, or ever could have anticipated. So different....
Until this past week, things like training day care staff in the treatment and management of diabetes was not something that even crossed my mind. Until this past week, asking a diabetes educator if I can switch the injection site for my daughter's Lantus injection from her buttocks to her thigh until her skin heals would have been entirely out of context and my experience. Until this week, giving my daughter a shot, holding her down and physically restraining her to do so, never would have occurred to me. It just wasn't a part of my life or set of experiences. All the sudden, honeymoon is referring to something other than that marriage I've been fantasizing about for the past year (hint hint Bob!).
Things are just totally different. I feel fairly overwhelmed around 85% of the time. The times I don't feel overwhelmed, I am sleeping, or peeing (Who can think while they pee?).
I have been migrating to autism/asperger/pdd/parents of diabetic children blogs so much my mind is spinning. I read about children who are diabetic, who are past that whole honeymoon thing, and I really am not looking forward to more intensive insulin management for Gracie. I feel pinned to my job. What job wants to hire someone who has as many outside commitments I can't beg out of? Sure they can't discriminate, but even if I wanted to move to the cities and find work there, I wouldn't be able to shirk these responsibilities. I'd have to go a year without FMLA protection and I'd have a whole new school district to work with. Plus, I'd have to pay COBRA for myself and two young children. Now not one of us can AFFORD that lapse of benefits. I'm feeling pinned to Saint Cloud. I'm feeling pulled to the cities. After all, all the decent care for the conditions my children have is located where? In Minneapolis/St Paul.
There is a lot going on, and suddenly, I'm not caring too much about running anymore. I haven't been counting my calories for over a week, screw it, I have other things to worry about. My passions in my life seemed to have switched from running and islet transplantation and managing unforeseeable and unpredictable lows to diabetes advocacy, autism advocacy, getting the most out of your IEP, sensory integration, blah blah blah blah blah. Everything is changing, has changed.
And you know what? I realized today that not only have things been different lately, and not only has everything changed, it will never be the same again. I can never go back. I have had a complete reality shift. I am not certain I have had a reality shift as complete and as thorough as this since I first gave birth. This is that big. (If you are a parent, you understand just how big that is!)
So what now?
I learn how to change. It's funny how life changes and suddenly, something that was vitally important yesterday just isn't all that important anymore. Something came up. Lately, I have had autism and type 1 diabetes come up. I've decided that I am going to become a member of the Autism Society of Minnesota (and I'm even gonna pay the dues). I am also going to join the JDRF (and I'm not sure if I have to pay dues for that, anyone know?).
Just on a quick exit note, I'd love to share with you a note about Gracie. Her blood sugars are doing fabulously on just a 1/2u of lantus, staying perfectly between 85-115. I know it won't be like this forever but I'm crossing my fingers. Also, she has officially received a Type 1 Diabetes diagnosis. Tonight was her third night with a lantus shot. The first two nights I had to physically restrain her and she struggled so much and cried and screamed. It was pretty terrible. Tonight she laid down on my lap for me and cried a little, but did okay. She said: "Just a little poke mommy and then it is all over." I said: "Yep, Just a little poke and then it is all over." Until tomorrow, right?
Wednesday, November 08, 2006
Monday, November 06, 2006
A Call To Action (Insulin is NOT a Cure!)
Scott and Penny have lit the fire in me to write about how diabetes affects my life.
A month ago this post would have been a whole lot different. A month ago I would have focussed a lot on hypoglycemic events I can't feel and the constant variables and guessing that goes into diabetes. I would have focussed on the lifetime I've spent immersed in my disease and all for what? To maybe avoid some complications? To live in a life of highs and lows that constantly affect my emotional state and all of the dealings I have with anything and everyone?
But, in light of all that, I would have said having diabetes sucks but it isn't that bad. I can live with this treatment, for now......I can live with it for ME.
Everything changes.....
This is my daughter, and she is three and a half. She is the newest face to diabetes. She is 31 lbs, 33 inches tall. Her name is Gracie Ardith-Ellen. She has two awesome pinpoint dimples, and the darkest brownest eyes. She even has spiral curls that I think instill the very devil into her temperment. She is the newest face, delving slowly from prediabetes into diabetes. She is an example of a beautiful little girl with a very wrong and unmerciful auto-immune disorder. Take a good look.
My daughter had her first shot of insulin tonight, Lantus, 1/2 unit. I have been a type 1 diabetic for 15 years, and I have managed okay. But do you think that insulin was "good enough" when I gave her her first shot, and comforted her afterwards? Insulin is far from good enough. Insulin is NOT enough. Insulin does NOT solve her problems. Insulin will keep her from dying. That is all. And that same treatment that could keep her from dying could also aid her in dying. This is on my shoulders.
I have never been an advocate for a diabetes cure. I honestly don't believe I will ever see a cure. So why do I bother with this? Because insulin is not good enough. It is good enough for me, I can struggle with it, but it is not good enough for my daughter. That should tell you something about insulin treatment. Fifteen years I have used insulin treatment, and I feel nothing but despair when faced with my daughter also needing it. I have fifteen years experience of poking my fingers and taking those shots, and I am DEVASTATED by the understanding, the TRUE understanding, of what is to come for my daughter and how much her life will change.
My daughter can be anything she wants, even with diabetes, but the pain of knowing her struggles before she has them, is much for my heart to bear.
My daughter does not yet meet clinical diagnostic standards for diabetes. Her highest recorded blood sugar thus far is 177. Her 2 hr PP tonight was 174. Her AM fastings are typically 100-150. Her a1c is currently 5.5%. Her blood sugars are not getting better, they are only getting higher. I am a mother watching helplessly as her daughter falls prey to diabetes. There is nothing I can do to stop it. Nothing I can do to reverse this process.
All I can do is give her the tools she needs to manage this condition as she gets older. I know she is truly blessed to have a mother who is as active in her own personal care as I am. I know Gracie has a phenomenal role model in me, as I had in my mother. I know Gracie will take charge of her diabetes as she gets older. I know this, and I have faith that Gracie will be such a wonderful peanut as she ages that her diabetes will not be a factor. But I know, just as well as you know, that it will always be there, in the background. She will always have to work that much harder. And she is only three. She is only thirty pounds. She is not even three feet tall. She is not who you see when you see diabetes on TV, But she is our newest addition.
This month, I am going to get out of myself, and I am going to tell people about my daughter. Anyone who will listen. Because she is three, and she could be your daughter; she could be their daughter. This is what I am doing to spread awareness about diabetes this month, I am telling Gracie's story. I know it will touch people's hearts.
Perhaps you can tell her story too? Or maybe you have your own story to tell? The point is, get out and educate. There is NOTHING we can do to stop Gracie's diabetes, and there was NOTHING I could have done to stop my own diabetes. This is not a disease of bad habits, this is a disorder that deserves attention and research. Please, get out of yourself this month, and tell a story about diabetes. Get out and educate, because really, if you don't, Who will?
A month ago this post would have been a whole lot different. A month ago I would have focussed a lot on hypoglycemic events I can't feel and the constant variables and guessing that goes into diabetes. I would have focussed on the lifetime I've spent immersed in my disease and all for what? To maybe avoid some complications? To live in a life of highs and lows that constantly affect my emotional state and all of the dealings I have with anything and everyone?
But, in light of all that, I would have said having diabetes sucks but it isn't that bad. I can live with this treatment, for now......I can live with it for ME.
Everything changes.....
This is my daughter, and she is three and a half. She is the newest face to diabetes. She is 31 lbs, 33 inches tall. Her name is Gracie Ardith-Ellen. She has two awesome pinpoint dimples, and the darkest brownest eyes. She even has spiral curls that I think instill the very devil into her temperment. She is the newest face, delving slowly from prediabetes into diabetes. She is an example of a beautiful little girl with a very wrong and unmerciful auto-immune disorder. Take a good look.
My daughter had her first shot of insulin tonight, Lantus, 1/2 unit. I have been a type 1 diabetic for 15 years, and I have managed okay. But do you think that insulin was "good enough" when I gave her her first shot, and comforted her afterwards? Insulin is far from good enough. Insulin is NOT enough. Insulin does NOT solve her problems. Insulin will keep her from dying. That is all. And that same treatment that could keep her from dying could also aid her in dying. This is on my shoulders.
I have never been an advocate for a diabetes cure. I honestly don't believe I will ever see a cure. So why do I bother with this? Because insulin is not good enough. It is good enough for me, I can struggle with it, but it is not good enough for my daughter. That should tell you something about insulin treatment. Fifteen years I have used insulin treatment, and I feel nothing but despair when faced with my daughter also needing it. I have fifteen years experience of poking my fingers and taking those shots, and I am DEVASTATED by the understanding, the TRUE understanding, of what is to come for my daughter and how much her life will change.
My daughter can be anything she wants, even with diabetes, but the pain of knowing her struggles before she has them, is much for my heart to bear.
My daughter does not yet meet clinical diagnostic standards for diabetes. Her highest recorded blood sugar thus far is 177. Her 2 hr PP tonight was 174. Her AM fastings are typically 100-150. Her a1c is currently 5.5%. Her blood sugars are not getting better, they are only getting higher. I am a mother watching helplessly as her daughter falls prey to diabetes. There is nothing I can do to stop it. Nothing I can do to reverse this process.
All I can do is give her the tools she needs to manage this condition as she gets older. I know she is truly blessed to have a mother who is as active in her own personal care as I am. I know Gracie has a phenomenal role model in me, as I had in my mother. I know Gracie will take charge of her diabetes as she gets older. I know this, and I have faith that Gracie will be such a wonderful peanut as she ages that her diabetes will not be a factor. But I know, just as well as you know, that it will always be there, in the background. She will always have to work that much harder. And she is only three. She is only thirty pounds. She is not even three feet tall. She is not who you see when you see diabetes on TV, But she is our newest addition.
This month, I am going to get out of myself, and I am going to tell people about my daughter. Anyone who will listen. Because she is three, and she could be your daughter; she could be their daughter. This is what I am doing to spread awareness about diabetes this month, I am telling Gracie's story. I know it will touch people's hearts.
Perhaps you can tell her story too? Or maybe you have your own story to tell? The point is, get out and educate. There is NOTHING we can do to stop Gracie's diabetes, and there was NOTHING I could have done to stop my own diabetes. This is not a disease of bad habits, this is a disorder that deserves attention and research. Please, get out of yourself this month, and tell a story about diabetes. Get out and educate, because really, if you don't, Who will?
Sunday, November 05, 2006
Holey Smokes Man I've Been Tagged
It is a sign of the times, or it is just a November thing, or whatever it is, but it is. I have been tagged! I was honestly wondering if it would ever happen to me, so I tried not to YIP! with glee when purplehaze up and tagged me! I guess I pick five random things about me and then try and tag someone who hasn't been tagged after that so I guess here goes!
1. I HATE CHARTER!!! This is actually a new thing....But it really really really pisses me off. I downgraded my cable television service and all hell broke loose from there. They have not managed to get billing correct, they have not managed to get cable downgraded, when they do manage to get cable downgraded, they turn off internet, upon attempts to fix said internet problem, they try and have me PAY for them to fix THEIR screw up. I don't care what the hell it costs, this 7 or 8 phone calls over the past month (and 4 phone calls in the past three days) has cost me over 10 hours of my time and it freaks me the hell out. I cancelled today, and now I have entered AOL dial up land and I'm not sure if I'm happy about it. But i am freaking RELIEVED that I never have to call f******* charter AGAIN!
2. I am totally anal and rigid about my schedule. If something changes, I usually respond by getting pissed and stressed. I cannot handle schedule changes, so if you can't be here, well, you HAVE to be here because my coping skills concerning change are basically nil.
3. I never graduated high school. I did get my GED, but I never finished high school. I actually dropped out after freshman year.
4. I love hockey! Most people who know me from way back know this, but one of my favorite handles and usernames (iamslh) stands for "I am sarah loves hockey") that said, I LOVE hockey. I am an avs fan, and I still remember when they came to denver (from quebec) and won the cup their first year! Nothing can ever replace the likes of patty roy, joey sakic, peter forsberg, claude lemieux, and Sandis Ozolinsh all on one team together.
5. That being said, I named my son Sandis after hockey player Sandis Ozolinsh. The best damn skater on the planet. I used to go to pre-season training at the World Hockey Center in Colorado Springs and I remember just being in AWE over Sandis and his skates. My son isn't the same as that, but hey, I'll give him time. Oh, and did you know that Sandis Ozolinsh's parent's started him out in figure skating, not hockey?
Okay, Those who I tag are (please excuse me for not linking, I don't have the addresses memorized and still getting the hang of AOL)
Anne at Annetics
Lyhreca at Managing the Sweetness Within
Lori at the Very Old, Very Healthy Diabetic
Lala at Lala's Hi Lo Log
and lastly,
(I know you've already been tagged and I know there is no double tagging so just ignore this)
Scott at Scott's Diabetes Journal
1. I HATE CHARTER!!! This is actually a new thing....But it really really really pisses me off. I downgraded my cable television service and all hell broke loose from there. They have not managed to get billing correct, they have not managed to get cable downgraded, when they do manage to get cable downgraded, they turn off internet, upon attempts to fix said internet problem, they try and have me PAY for them to fix THEIR screw up. I don't care what the hell it costs, this 7 or 8 phone calls over the past month (and 4 phone calls in the past three days) has cost me over 10 hours of my time and it freaks me the hell out. I cancelled today, and now I have entered AOL dial up land and I'm not sure if I'm happy about it. But i am freaking RELIEVED that I never have to call f******* charter AGAIN!
2. I am totally anal and rigid about my schedule. If something changes, I usually respond by getting pissed and stressed. I cannot handle schedule changes, so if you can't be here, well, you HAVE to be here because my coping skills concerning change are basically nil.
3. I never graduated high school. I did get my GED, but I never finished high school. I actually dropped out after freshman year.
4. I love hockey! Most people who know me from way back know this, but one of my favorite handles and usernames (iamslh) stands for "I am sarah loves hockey") that said, I LOVE hockey. I am an avs fan, and I still remember when they came to denver (from quebec) and won the cup their first year! Nothing can ever replace the likes of patty roy, joey sakic, peter forsberg, claude lemieux, and Sandis Ozolinsh all on one team together.
5. That being said, I named my son Sandis after hockey player Sandis Ozolinsh. The best damn skater on the planet. I used to go to pre-season training at the World Hockey Center in Colorado Springs and I remember just being in AWE over Sandis and his skates. My son isn't the same as that, but hey, I'll give him time. Oh, and did you know that Sandis Ozolinsh's parent's started him out in figure skating, not hockey?
Okay, Those who I tag are (please excuse me for not linking, I don't have the addresses memorized and still getting the hang of AOL)
Anne at Annetics
Lyhreca at Managing the Sweetness Within
Lori at the Very Old, Very Healthy Diabetic
Lala at Lala's Hi Lo Log
and lastly,
(I know you've already been tagged and I know there is no double tagging so just ignore this)
Scott at Scott's Diabetes Journal
Friday, November 03, 2006
The Act of Being Normal
What is normal? How do we define that? Being normal seems to be exactly what you need to achieve in order to make it in our public schools or to be accepted by a loving group of friendly coworkers. Why do so many of us feel out of this normal loop? Why do I personally work so hard to achieve a status of normalcy that really seems to have no true definition?
I’ve been thinking a lot about what is normal lately, and how this affects my family, and most recently how it affects my son. When I think about my son, I think about his passion. I think about his joyful smile. I think about how his behavior generally tests me and shows the truth concerning my patience levels (very low presently) every single morning. I see all of the wonderful things in my son that expand my heart, fill me with pride. Sandis has an energy that overflows. I wish I had that overflowing energy for myself, the energy and the passion to lift myself up with every afternoon. Why is it that when he is at school, they do not see this as the gift it truly is, but rather as a negative in that he cannot focus on what they are doing? What should I focus on? Their negative or my positive? Why does their negative influence my positive? Why can’t he be both? Why isn’t the fact that he is a happy and joyful child enough?
Special Education. (IM NOT NORMAL). Occupational Therapy. (IM NOT NORMAL). Speech Therapy. (IM NOT NORMAL). One-to-One Aide. (IM NOT NORMAL). Psychologist in Class. (IM NOT NORMAL). Rocking Chair. (IM NOT NORMAL).
I may as well just paste a big fat red sign on his head that says “HEY! PICK ON ME!” I remember being in school. I remember the cruelty of young children. I wish I could save him from that. I also want to ensure that he can be the most adult that it is possible for him to be. Do I let him go along, as he is now, with tools that are inadequately suited for meeting the world’s expectations, without much intervention? Or do I step in and offer all that I can, trying to change the little boy that has so touched my heart? (Sandis has both enraged and melted me! He has truly done a number on my heart!)
Why can’t he be normal? Why does everything we do to help him have to make it so clear to EVERYONE ELSE just how normal he ISN’T? Why is this such a struggle for me?
I am still learning to accept my son. I am still learning to work WITH him rather than against him as we try and meet our goals for him. What are his goals for himself? I am still learning to accept my son’s needs. I am still trying to ESTABLISH my son’s needs. I hate that he isn’t breezing through school. I hate that every day at school makes it so much more clear how much extra help he is going to need to get through these next few years.
I hate my OWN limitations. I hate how I myself do not meet their “normal” standards. I hate being the odd family out. I hate feeling like I do not fit in. This is not about diabetes, this is about me, who I am, who my son is, who my family is.
I am trying to pave a way that, although separate from most other families and other kids, has the same goals as other families. We are just getting their differently. Our path has some pretty awesome scenery. We learn a whole heck of a lot on the way. And in the end, even though our goals may be the same (Grow up, be healthy, be happy, find personal success) we will get there so differently, even our results will be different. Our goals will change color and the hues will no longer match.
What is normal? Is there a normal?
I know this for certain, I don’t think we are normal, but maybe we are? If all parents want the best for their child, and all children have different needs…..And I am just doing what needs to be done to meet my child’s unique needs as best as possible…Am I not the most normal parent ever? If all my son really wants is to play, eat, and be loved is he really any different from the child next to him who is not autistic?
Perhaps normal is not something that is defined by someone else? Perhaps normal is not something that is defined by society, but something that is defined more by our instinctual physical and emotional needs more than anything else?
I want to love. I want to be loved. My son wants to love. My Sandis wants to be loved. We share this. I bet you share this attribute with me too.
Let’s celebrate this “normal” trait among us, I’m fairly certain all of us have it!
I’ve been thinking a lot about what is normal lately, and how this affects my family, and most recently how it affects my son. When I think about my son, I think about his passion. I think about his joyful smile. I think about how his behavior generally tests me and shows the truth concerning my patience levels (very low presently) every single morning. I see all of the wonderful things in my son that expand my heart, fill me with pride. Sandis has an energy that overflows. I wish I had that overflowing energy for myself, the energy and the passion to lift myself up with every afternoon. Why is it that when he is at school, they do not see this as the gift it truly is, but rather as a negative in that he cannot focus on what they are doing? What should I focus on? Their negative or my positive? Why does their negative influence my positive? Why can’t he be both? Why isn’t the fact that he is a happy and joyful child enough?
Special Education. (IM NOT NORMAL). Occupational Therapy. (IM NOT NORMAL). Speech Therapy. (IM NOT NORMAL). One-to-One Aide. (IM NOT NORMAL). Psychologist in Class. (IM NOT NORMAL). Rocking Chair. (IM NOT NORMAL).
I may as well just paste a big fat red sign on his head that says “HEY! PICK ON ME!” I remember being in school. I remember the cruelty of young children. I wish I could save him from that. I also want to ensure that he can be the most adult that it is possible for him to be. Do I let him go along, as he is now, with tools that are inadequately suited for meeting the world’s expectations, without much intervention? Or do I step in and offer all that I can, trying to change the little boy that has so touched my heart? (Sandis has both enraged and melted me! He has truly done a number on my heart!)
Why can’t he be normal? Why does everything we do to help him have to make it so clear to EVERYONE ELSE just how normal he ISN’T? Why is this such a struggle for me?
I am still learning to accept my son. I am still learning to work WITH him rather than against him as we try and meet our goals for him. What are his goals for himself? I am still learning to accept my son’s needs. I am still trying to ESTABLISH my son’s needs. I hate that he isn’t breezing through school. I hate that every day at school makes it so much more clear how much extra help he is going to need to get through these next few years.
I hate my OWN limitations. I hate how I myself do not meet their “normal” standards. I hate being the odd family out. I hate feeling like I do not fit in. This is not about diabetes, this is about me, who I am, who my son is, who my family is.
I am trying to pave a way that, although separate from most other families and other kids, has the same goals as other families. We are just getting their differently. Our path has some pretty awesome scenery. We learn a whole heck of a lot on the way. And in the end, even though our goals may be the same (Grow up, be healthy, be happy, find personal success) we will get there so differently, even our results will be different. Our goals will change color and the hues will no longer match.
What is normal? Is there a normal?
I know this for certain, I don’t think we are normal, but maybe we are? If all parents want the best for their child, and all children have different needs…..And I am just doing what needs to be done to meet my child’s unique needs as best as possible…Am I not the most normal parent ever? If all my son really wants is to play, eat, and be loved is he really any different from the child next to him who is not autistic?
Perhaps normal is not something that is defined by someone else? Perhaps normal is not something that is defined by society, but something that is defined more by our instinctual physical and emotional needs more than anything else?
I want to love. I want to be loved. My son wants to love. My Sandis wants to be loved. We share this. I bet you share this attribute with me too.
Let’s celebrate this “normal” trait among us, I’m fairly certain all of us have it!
Wednesday, November 01, 2006
6.8
So my endocrinology appointment today (at my doctor's in Saint Cloud) was just basically a big fat mountain of stress. I was eyeing the paperwork that the nurse had before my doctor came in to see me and was SHOCKED by an 8.6 a1c and was brought to tears as I came to terms with the fact that my a1c had jumped from 7.2 (last time's numbers, an increase even there) a full 1.4 points to 8.6. I was more than mildly surprised when my doctor told me that it was actually 6.8! So there was my lesson to not try and read the lab work results sideways and upside down!
On a good note, Gracie's blood sugars today have been wonderfully normal with a 105 fasting and a 119 2 hour PP. I am going to test tonight while she is asleep, as that worked fairly well last night, and that was when she was her highest yesterday after a full day of normal yesterday.
Gracie also had an MRI today, requiring sedation, which also thankfully was normal, although the entire day was fairly hard on the mums, what with IVs in my three year old and plenty of places for her to sleep but recliners although comfy aren't conducive to a midday nap for me (plus I was without sedation!)I do realize that was a mighty runon sentence as well!
I was fully unprepared for this endocrinologist appointment, and was not handling having my kids there very well. Gracie was dopey, and moody, from the earlier day's sedation. Sandis was, as he normally is, unresponsive to social etiquette and the people around him other than to further his rather lively play (meaning get out of my way mom and I want to climb on EVERYTHING and push my sister around and make her scream since she is rather moody!) Normally I can deal with all of this, but I just was super tired and was up to EYEBALLS in every other issue but MY diabetes. I didn't even have sugars, much less my normal presentation of printed out goals and such things. My doctor actually suggested I find a general practitioner (I don't have one) and see about perhaps starting on a mood stabilizer, seeing as how I was obviously stressed and in and out of tears, and taking into account how physical activity with my back and knee is not able to work its mood magic on me. (Run on sentence, I realize this, I am grammatically challenged today, and well, lazy.)
Hmmphh. I did decline the suggestion, as I honestly do feel it is normal to feel fairly overwhelmed and emotional, and I do feel I have not even had a chance to grieve the hopes and dreams and expectations I have had for both of my children nor had the chance to readjust these hopes and dreams and expectations to be more congruent with what I can expect. Dont take this the wrong way. I expect my children to achieve wonderful things and to be wonderful people, but I know that they now have hurdles that I did not know they had previous to these past few weeks. Things will be different than I have always hoped them to be, but perhaps they will be better than I ever could have imagined? We will see.
In my diabetes, I have completely stopped symlin as of today. And I have been handed a tentative diagnosis of gastroparesis. At this point, I'm honestly not too concerned. I have slow digestion at night, but it seems to follow a pattern and I don't get into too much trouble with it, although I had loads of problems with symlin at night, which is partly explained if this diagnosis is actually true. I have to go in to have a test done, but we agreed I could wait four months until my next appointment to set that, as things are a little overwhelming on the family health front right now, and this can just wait.
Gracie's appointment at Children's Hospital is on Monday at 10am. They told me to expect to spend all morning there as we learn a BUNCH of stuff, stock up on prescriptions, and do well, all sorts of stuff that I will tell you about after we do them, because honestly, I don't know what they are. It is touted to take several hours and that is the extent of what I know!
One last note on Sandis's IEP and the social worker from the school. She hasn't managed to call me back. And that REALLY irritates me. But damnit, I think I am probably fairly irritable today.
I also want to thank everyone for their very kind words of support concerning Gracie and Sandis. A lot of times I don't even know how to respond, I'm fairly consumed at this point, but I do want all to know that I really do appreciate it. I find solace reading these kind words after they are in bed and it is good to know that I am not alone in this!
On a good note, Gracie's blood sugars today have been wonderfully normal with a 105 fasting and a 119 2 hour PP. I am going to test tonight while she is asleep, as that worked fairly well last night, and that was when she was her highest yesterday after a full day of normal yesterday.
Gracie also had an MRI today, requiring sedation, which also thankfully was normal, although the entire day was fairly hard on the mums, what with IVs in my three year old and plenty of places for her to sleep but recliners although comfy aren't conducive to a midday nap for me (plus I was without sedation!)I do realize that was a mighty runon sentence as well!
I was fully unprepared for this endocrinologist appointment, and was not handling having my kids there very well. Gracie was dopey, and moody, from the earlier day's sedation. Sandis was, as he normally is, unresponsive to social etiquette and the people around him other than to further his rather lively play (meaning get out of my way mom and I want to climb on EVERYTHING and push my sister around and make her scream since she is rather moody!) Normally I can deal with all of this, but I just was super tired and was up to EYEBALLS in every other issue but MY diabetes. I didn't even have sugars, much less my normal presentation of printed out goals and such things. My doctor actually suggested I find a general practitioner (I don't have one) and see about perhaps starting on a mood stabilizer, seeing as how I was obviously stressed and in and out of tears, and taking into account how physical activity with my back and knee is not able to work its mood magic on me. (Run on sentence, I realize this, I am grammatically challenged today, and well, lazy.)
Hmmphh. I did decline the suggestion, as I honestly do feel it is normal to feel fairly overwhelmed and emotional, and I do feel I have not even had a chance to grieve the hopes and dreams and expectations I have had for both of my children nor had the chance to readjust these hopes and dreams and expectations to be more congruent with what I can expect. Dont take this the wrong way. I expect my children to achieve wonderful things and to be wonderful people, but I know that they now have hurdles that I did not know they had previous to these past few weeks. Things will be different than I have always hoped them to be, but perhaps they will be better than I ever could have imagined? We will see.
In my diabetes, I have completely stopped symlin as of today. And I have been handed a tentative diagnosis of gastroparesis. At this point, I'm honestly not too concerned. I have slow digestion at night, but it seems to follow a pattern and I don't get into too much trouble with it, although I had loads of problems with symlin at night, which is partly explained if this diagnosis is actually true. I have to go in to have a test done, but we agreed I could wait four months until my next appointment to set that, as things are a little overwhelming on the family health front right now, and this can just wait.
Gracie's appointment at Children's Hospital is on Monday at 10am. They told me to expect to spend all morning there as we learn a BUNCH of stuff, stock up on prescriptions, and do well, all sorts of stuff that I will tell you about after we do them, because honestly, I don't know what they are. It is touted to take several hours and that is the extent of what I know!
One last note on Sandis's IEP and the social worker from the school. She hasn't managed to call me back. And that REALLY irritates me. But damnit, I think I am probably fairly irritable today.
I also want to thank everyone for their very kind words of support concerning Gracie and Sandis. A lot of times I don't even know how to respond, I'm fairly consumed at this point, but I do want all to know that I really do appreciate it. I find solace reading these kind words after they are in bed and it is good to know that I am not alone in this!
Tuesday, October 31, 2006
177
Gracie's two hour PP tonight was 177. I feel like crying. This is the highest it has ever been.
I don't want to be strong. I want to cry. I don't want to be invincible mommy, I want to cry. Thank God my kids are asleep, now I can cry.
All I want to do is cry. This isn't going away. I can't believe that this is happening to my tiny little beautiful peanut. It just doesn't make any sense that it would happen to her.
Somehow I am expected to hold this tender little family together with shoelaces and I don't even want to try. All I want to do is cry. Why me? Why her? Why MY baby? Her life will never be the same. I don't want to do this. I don't want this.
People are going to tell me that we are lucky we caught it early. Will that make it go away?
I'm going to go cry now, so maybe tomorrow, I will make it through until again they are asleep, and I can cry again.
I don't want to be strong. I want to cry. I don't want to be invincible mommy, I want to cry. Thank God my kids are asleep, now I can cry.
All I want to do is cry. This isn't going away. I can't believe that this is happening to my tiny little beautiful peanut. It just doesn't make any sense that it would happen to her.
Somehow I am expected to hold this tender little family together with shoelaces and I don't even want to try. All I want to do is cry. Why me? Why her? Why MY baby? Her life will never be the same. I don't want to do this. I don't want this.
People are going to tell me that we are lucky we caught it early. Will that make it go away?
I'm going to go cry now, so maybe tomorrow, I will make it through until again they are asleep, and I can cry again.
I'm Not a Believer (Not Yet Anyways)
Today, the pediatric endocrinologist from Children’s Hospital called me at work. ( I thought Gracie was being referred to the IDC, but I was wrong, she is being referred to the Children’s Hospital.) We talked some……and really, she is on a different plane of belief than I am. I’m not of the believing species yet. I don’t/can’t/won’t believe this, not yet.
Gracie’s blood sugar this morning was 91. Woohooo! After a full day of 150’s, 160’s and then rounding down late afternoon and evening to 138 and 107, I was THRILLED to wake up to a nice healthy 91.
The doctor discussed why Gracie had ketones (and not talking just a little, we are talking a WHOLE HECKA BUNCHA LOTTA ketones) in such a high quantity and also discussed Gracie’s diet some with me. The doctor believes that perhaps because we eat so few simple carbs (we don’t even drink milk, we do unsweetened soy milk which is 4g carb per 8 oz, but that is another post) this could explain why Gracie is building up ketones yet keeping lower sugars. See, the sugars and amount of ketones don’t jive which led to this discussion. It makes sense as really the only simple carbs we routinely eat are bananas and apples and other fruits, which other than the bananas are fairly high in fiber reducing absorption rates. Also, typically we eat our bananas with peanut butter. Funny, because Gracie had these elevated sugars coming off a day with a babysitter where they consumed pretty large amounts of juice (finished off two bottles when normally two bottles (32 oz) will last over a week). She said that if Gracie continues to have higher ketones but more normal blood sugars, we may have to start her on a very small amount of lantus to help reduce those ketones and keep even her smaller spikes down.
The things is, and forgive me as I know this entry is not well composed, is I haven’t yet accepted Gracie as a diabetic. I’m holding out that maybe that isn’t what it is. The doctors are already treating it as though it were diabetes, and it freaks me the hell out. I am okay when I can say, hey maybe it isn’t this, but when the doctor calls and starts talking about getting her prescriptions for insulin and stuff ready for when she needs to start the insulin and eventually starting her on a pump, I just can’t take it, because I’m not yet there. I’m not yet a believer.
Add to this all, my son’s IEP process is now at it’s beginning stages. I’m poised to tell the social worker sometime today (when she calls me back) not to expect me to sign a medical records release for the school, but I’ll be happy to provide them with any information they request or also very happy to accommodate them with a conference call to my doctor (with me included) if they need information that they need to get from the doctor they can’t have me get for them. I’m not very good at telling people no, but I’m also not about to give an educational institution full access to records that they are not fully qualified to process (if they were doctors, perhaps, but social workers, no, they don’t need his labs, they don’t need every iota of conversation that I’ve had with Sandis’s doctors). I’m a little stressed about this. I feel it is the right thing, but I hate stepping out of the box of what they hope for and I hate telling people no. I guess I will use this as a personal opportunity to build up my NO skills. Ha ha, you would think I would have gotten enough of that learning to say NO to drugs in public school……!!!
The list of things I need to do is getting bigger. I’m dreading the next walk up to HR to request yet ANOTHER FMLA form, this time for Gracie, and explaining how bodily misfortune and dysfunction has once again fallen on the family of three (My peanut, pumpkin, and me the mommy of multiple misfortunes…)
I need to write this more, so that I feel it, I believe it, and I carry it high so others see this in me instead of my troubles right now. I am NOT defined by my problems. I am NOT defined by my health or how my health is perceived by others. I have been given, and my children have been given, wondrous intelligent invigorating souls begging to be seen by you, by me, by everyone who comes into contact with them. Their diagnosis are only parts of their greater mold, the mold of their total person. They/we are awesome, they/we are God’s creatures, they/we are not mistakes, they/we are exactly how God made them/us. And that is truly truly perfect.
Now I’m going to go conquer the world, or just be the best damn advocate my children could ever have hoped for. Seeya! Oh, and happy Halloween!
Gracie’s blood sugar this morning was 91. Woohooo! After a full day of 150’s, 160’s and then rounding down late afternoon and evening to 138 and 107, I was THRILLED to wake up to a nice healthy 91.
The doctor discussed why Gracie had ketones (and not talking just a little, we are talking a WHOLE HECKA BUNCHA LOTTA ketones) in such a high quantity and also discussed Gracie’s diet some with me. The doctor believes that perhaps because we eat so few simple carbs (we don’t even drink milk, we do unsweetened soy milk which is 4g carb per 8 oz, but that is another post) this could explain why Gracie is building up ketones yet keeping lower sugars. See, the sugars and amount of ketones don’t jive which led to this discussion. It makes sense as really the only simple carbs we routinely eat are bananas and apples and other fruits, which other than the bananas are fairly high in fiber reducing absorption rates. Also, typically we eat our bananas with peanut butter. Funny, because Gracie had these elevated sugars coming off a day with a babysitter where they consumed pretty large amounts of juice (finished off two bottles when normally two bottles (32 oz) will last over a week). She said that if Gracie continues to have higher ketones but more normal blood sugars, we may have to start her on a very small amount of lantus to help reduce those ketones and keep even her smaller spikes down.
The things is, and forgive me as I know this entry is not well composed, is I haven’t yet accepted Gracie as a diabetic. I’m holding out that maybe that isn’t what it is. The doctors are already treating it as though it were diabetes, and it freaks me the hell out. I am okay when I can say, hey maybe it isn’t this, but when the doctor calls and starts talking about getting her prescriptions for insulin and stuff ready for when she needs to start the insulin and eventually starting her on a pump, I just can’t take it, because I’m not yet there. I’m not yet a believer.
Add to this all, my son’s IEP process is now at it’s beginning stages. I’m poised to tell the social worker sometime today (when she calls me back) not to expect me to sign a medical records release for the school, but I’ll be happy to provide them with any information they request or also very happy to accommodate them with a conference call to my doctor (with me included) if they need information that they need to get from the doctor they can’t have me get for them. I’m not very good at telling people no, but I’m also not about to give an educational institution full access to records that they are not fully qualified to process (if they were doctors, perhaps, but social workers, no, they don’t need his labs, they don’t need every iota of conversation that I’ve had with Sandis’s doctors). I’m a little stressed about this. I feel it is the right thing, but I hate stepping out of the box of what they hope for and I hate telling people no. I guess I will use this as a personal opportunity to build up my NO skills. Ha ha, you would think I would have gotten enough of that learning to say NO to drugs in public school……!!!
The list of things I need to do is getting bigger. I’m dreading the next walk up to HR to request yet ANOTHER FMLA form, this time for Gracie, and explaining how bodily misfortune and dysfunction has once again fallen on the family of three (My peanut, pumpkin, and me the mommy of multiple misfortunes…)
I need to write this more, so that I feel it, I believe it, and I carry it high so others see this in me instead of my troubles right now. I am NOT defined by my problems. I am NOT defined by my health or how my health is perceived by others. I have been given, and my children have been given, wondrous intelligent invigorating souls begging to be seen by you, by me, by everyone who comes into contact with them. Their diagnosis are only parts of their greater mold, the mold of their total person. They/we are awesome, they/we are God’s creatures, they/we are not mistakes, they/we are exactly how God made them/us. And that is truly truly perfect.
Now I’m going to go conquer the world, or just be the best damn advocate my children could ever have hoped for. Seeya! Oh, and happy Halloween!
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