Two years later.....
I'm not able to control a lot of what is going on in my life right now. Things are cattywhampus but I CAN control what I eat and how I exercise. I will say I've lost a few pounds AND my cholesterol is better than its been in YEARS but I'm also still Pre-Diabetic or Insulin Resistant as some say. My biggest issue is accountability. I joined Run for God at church and was doing great until my foot began hurting. Thankfully that has settled down so I'm ready to begin again. And I know now that instead of quitting, I should have just adjusted my workout.
As I think I have said before, I'm not one for dieting... this is all about living healthier but not depriving myself of the things I love. At this point, it is also for Gracie's health. The kid is growing like a weed in height but she is also gaining weight too quickly. I don't believe kids need to worry about weight. Their bodies are growing and changing every day and everything that goes with that is stressful enough without worrying about whether they are too fat or too skinny. I think its the parent's responsibility to make sure the right foods are provided and encouraged and in that regard I have failed. She would eat salads every single day if we just had the fixings available. She LOVES veggies. She is a very active kid but I know if we exercised together it would be helpful for us both. I can't take her with me to the gym until she is 13 but our church has exercise equipment we can hopefully take advantage of starting next week.
I know a lot of my calories come from soda. I LOVE Sonic ice. Large drinks are 99 cents in the mornings before 10 and a Coke is like my version of coffee. However I recently discovered they now serve green tea and I really like green tea. A coworker mentioned they put raspberry flavoring in it and bingo! The light bulb went off! Diet Green Tea with Lemon and/or orange! I tried it the next day and now have a new favorite drink that only has 20 calories! That same coworker mentioned you can also get flavored water... GENIUS!!! That's next on my list to try! I get all the fun of a Styrofoam cup, straw, and Sonic ice for nearly zero calories! See, that's a lifestyle change I can make! Not to say I'll never get another Coke but it will make it much easier to save soda for a treat day. These are the kinds of tips I seek and what I promise to share with you (if anyone is out there) when I come across them!
We all have Fit-Bits now too thanks to Santa. I am terrible at remembering to charge mine. However the one day I hit 10,000 I was elated!
So here's my plan as of today....
- Be a good girl and take all my medicines every single day (sometimes I get lazy)
- Drink mostly water or diet green tea with citrus
- Limit pasta to twice a week (baby steps....)
- Protein, Protein, Protein... not a fan of bars so this has to be eggs, chicken, fish, cottage cheese...
https://authoritynutrition.com/20-delicious-high-protein-foods/ (I know nothing about this website... it just had a good list of high protein choices... oh how I wish I liked Greek yogurt.)
- EXERCISE!!! Use equipment at church as well as try the Zumba classes on Tuesdays and Thursdays and the dance classes at New Hope on Mondays or Saturdays. Dancing is always a good choice for me. It makes me feel like I'm just having fun and the time flies by!
- Be a good example for Gracie (and Kayla too)
- Find accountability... even if its just making sure I post here.
- Learn how to spell accountability without using spellcheck!
I'm on a new thyroid medicine that may or may not help jump start the old metabolism too so we'll see how that goes. Thank you for following along... your comments will help motivate me so please chime in as you see fit (no pun intended!).
Wednesday, July 19, 2017
Saturday, August 1, 2015
Begin Again
I started this blog to chronicle my journey with Pre-Diabetes (My Story) but then Kayla became ill and my own health became second to hers. By last September she was weaning off the last of the steroids and was feeling more like herself... actually a better version of herself since her symptoms were under control. I was all set to go to my 6 month follow up with my endocrinologist and jump back on the bandwagon. The day before my appointment, Don went to the ER with high blood pressure and chest pain. He spent the night there and I of course cancelled my check-up with ever intention of rescheduling ASAP. ASAP didn't come until March and by then Dr. Goodman was booked until July.
All this to say yesterday I finally went to see Dr. Goodman. I was long out of the Metformin he had prescribed almost 18 months ago and told myself this appointment would just be a fresh start. I was very nervous and worried that he was going to read me the riot act for waiting so long and even more anxious that my A1C was going to show Diabetes (not that I've had symptoms thankfully). When I entered the waiting room, the first thing I saw was a sign announcing that Dr. Goodman was moving for Florida in October. Really?? Every time I find a doctor I like, they move or retire. I guess I can't say every... the girls have had the same Pediatrician since Kayla was 6 months old. I am very sad Dr. G is leaving because even though I had only seen him once, I liked his plan and his bedside manner which is a huge thing for me when it comes to doctors. The nurse called me back and took blood... lots of blood (they check my thyroid there too and who knows what else). I stepped on the scale and was pleased to see I'd lost five pounds. Five pounds is better than nothing. Blood pressure and pulse were good and Dr. G came in pretty quickly. I won't know about my thyroid numbers for a few days but my A1C was 6.2. EXACTLY what it was in March of last year. Still Pre-Diabetic but stable. I'll take it. I told him the Metformin messed with my tummy and he gave me samples of a different version that might work better. If they don't, I won't take anything unless I become diabetic. He recommended I give his partner a chance so I made a follow up appt in Feb to see him. Other than that it was a non eventful visit.
Now is the part where I'm on my own til February. Now is the part where I have to really dig in and make some changes. Oh if someone would please just invent a drive thru that sells grilled veggies!! I told Don I'd eat them if he would cook them. I hate to cook but I guess I'm going to have to learn to like it.
So here we go. Today on the way to work I stopped by Sonic to get my usual drink but I ordered Sprite Zero instead of a Coke. Took two sips and knew Sprite Zero is not for me. Drank my bottle of water instead. I had to work 10-4 which meant I'd have a lunch break. The fast food options are McDonalds and Taco Bell. There is a ChickFilA which offers grilled chicken nuggets and a fruit cup but in 30 minutes its hard to get there and back and still have time to eat. I called Rockin Dough which is in our shopping center intending to order a sandwich they offer that is veggie filled but no one answered the phone. Taco Bell it was. I had a chicken quesadilla for lack of better choices. I also got a small Mountain Dew. Baby steps people. Baby steps.
For dinner Don got a rotisserie chicken from Kroger and made corn and mashed potatoes. I know... corn AND mashed potatoes? But I had a small helping of the mashed and one baby ear of corn. I ate mostly chicken and it was pretty good. And I'm full. And if you are wondering what I had for breakfast, that's my biggest issue. I have to figure out how to fit breakfast into my day. I know its important. I know I have to eat in the morning. Once again, baby steps.
As for exercise today, walking around the store for 6 hours probably counts for something. Its not the gym but tomorrow is another day.
I know this is very train of thought writing and I'm usually a bit more sensitive about making my posts interesting and thought provoking and all inspirational but honestly right now I just need to write about what I'm eating and what I'm doing to get myself moving. In time I'll get back to more interesting stuff but this is how I know to keep myself accountable. To be completely honest I almost left out the part about the Mountain Dew but realized I'd only be hurting myself if I did. Some days will be better than others. My goal is to have more good days than bad but I know I will have the ones where I just want Mac and Cheese Damnit! I know part of the Weight Watchers theory is not to deprive yourself and I won't. But I'm also going to do my best to add veggies, pare down the carbs, and find more creative ways to make water interesting. And somehow, I'm going to make time for exercise! My head knows what I need to do. My 44 year old habits are going to take a while to change though. Thanks for hanging out with me in the meantime. If you feel like it, cheer me on in the comments or scold me for the Mountain Dew... whatever floats your boat. Here's to a healthier me!
All this to say yesterday I finally went to see Dr. Goodman. I was long out of the Metformin he had prescribed almost 18 months ago and told myself this appointment would just be a fresh start. I was very nervous and worried that he was going to read me the riot act for waiting so long and even more anxious that my A1C was going to show Diabetes (not that I've had symptoms thankfully). When I entered the waiting room, the first thing I saw was a sign announcing that Dr. Goodman was moving for Florida in October. Really?? Every time I find a doctor I like, they move or retire. I guess I can't say every... the girls have had the same Pediatrician since Kayla was 6 months old. I am very sad Dr. G is leaving because even though I had only seen him once, I liked his plan and his bedside manner which is a huge thing for me when it comes to doctors. The nurse called me back and took blood... lots of blood (they check my thyroid there too and who knows what else). I stepped on the scale and was pleased to see I'd lost five pounds. Five pounds is better than nothing. Blood pressure and pulse were good and Dr. G came in pretty quickly. I won't know about my thyroid numbers for a few days but my A1C was 6.2. EXACTLY what it was in March of last year. Still Pre-Diabetic but stable. I'll take it. I told him the Metformin messed with my tummy and he gave me samples of a different version that might work better. If they don't, I won't take anything unless I become diabetic. He recommended I give his partner a chance so I made a follow up appt in Feb to see him. Other than that it was a non eventful visit.
Now is the part where I'm on my own til February. Now is the part where I have to really dig in and make some changes. Oh if someone would please just invent a drive thru that sells grilled veggies!! I told Don I'd eat them if he would cook them. I hate to cook but I guess I'm going to have to learn to like it.
So here we go. Today on the way to work I stopped by Sonic to get my usual drink but I ordered Sprite Zero instead of a Coke. Took two sips and knew Sprite Zero is not for me. Drank my bottle of water instead. I had to work 10-4 which meant I'd have a lunch break. The fast food options are McDonalds and Taco Bell. There is a ChickFilA which offers grilled chicken nuggets and a fruit cup but in 30 minutes its hard to get there and back and still have time to eat. I called Rockin Dough which is in our shopping center intending to order a sandwich they offer that is veggie filled but no one answered the phone. Taco Bell it was. I had a chicken quesadilla for lack of better choices. I also got a small Mountain Dew. Baby steps people. Baby steps.
For dinner Don got a rotisserie chicken from Kroger and made corn and mashed potatoes. I know... corn AND mashed potatoes? But I had a small helping of the mashed and one baby ear of corn. I ate mostly chicken and it was pretty good. And I'm full. And if you are wondering what I had for breakfast, that's my biggest issue. I have to figure out how to fit breakfast into my day. I know its important. I know I have to eat in the morning. Once again, baby steps.
As for exercise today, walking around the store for 6 hours probably counts for something. Its not the gym but tomorrow is another day.
I know this is very train of thought writing and I'm usually a bit more sensitive about making my posts interesting and thought provoking and all inspirational but honestly right now I just need to write about what I'm eating and what I'm doing to get myself moving. In time I'll get back to more interesting stuff but this is how I know to keep myself accountable. To be completely honest I almost left out the part about the Mountain Dew but realized I'd only be hurting myself if I did. Some days will be better than others. My goal is to have more good days than bad but I know I will have the ones where I just want Mac and Cheese Damnit! I know part of the Weight Watchers theory is not to deprive yourself and I won't. But I'm also going to do my best to add veggies, pare down the carbs, and find more creative ways to make water interesting. And somehow, I'm going to make time for exercise! My head knows what I need to do. My 44 year old habits are going to take a while to change though. Thanks for hanging out with me in the meantime. If you feel like it, cheer me on in the comments or scold me for the Mountain Dew... whatever floats your boat. Here's to a healthier me!
Thursday, July 10, 2014
Blessing in Disguise
I didn't mean to desert this blog but life happened. I truly haven't been able to process it all yet but I know it needs to get written down. I will do my best to record everything here. In my last post I mentioned my daughter, Kayla, had been diagnosed with an eating disorder. I was terrified but hopeful we could get the right help for her. As I worked on that her health took a turn for the worse and forced our hand. Here's the whole story.....
As a refresher, somewhere around the first of April, Kayla became ill. She was staying in her room a lot, taking a long time in the bathroom, and generally avoiding food. She went to school one Monday and called me around 8am saying she was going to pass out. Don went to get her, I called in sick to work and we went straight to the pediatrician. All signs, including a 20 lb weight loss, pointed to an eating disorder. After the appropriate freak out, we had blood work done which confirmed she was severely anemic and malnourished. Her prealbumin was extremely low as well as her iron level and red blood cells. Prealbumin is a protein that is made in the liver and released in the blood. It helps carry certain hormones that regulate the way the body uses energy and other substances through the blood. She had almost none. The pediatrician (not our regular) sent us to a place in Cordova called The Transformation Center. They specialize in eating disorders and have an intensive out patient therapy program. We went for our intake appointment and the Dr. who saw us said she didn't think they would be of much help to us since Kayla didn't seem to have body image issues. I was sent away with a couple of names of therapists as well as nutritionists and spent the next week and a half trying to find the right people to talk to while trying to get Kayla to just eat and drink ANYTHING!!! It was a complete nightmare. The earliest we could get a therapy appointment was April 29th. The nutritionist everyone recommended didn't take insurance and was very costly although we certainty would have figured it out. I was so frustrated that the one person who seemed in a hurry to get her help was me! Thank God she ran a fever in the second week (Monday) and we had to go back to see our regular doc (Tues). She had no other symptoms besides the fever so he assumed it was something viral. He gently but firmly read her the riot act and said she had to eat or would end up in the hospital on a feeding tube. The next morning (Wed) she threw up (just once) and was still running fever so I called the dr's office again and they said just keep her on a liquid diet until she felt better.
By Thursday I was extremely concerned that she was dehydrated. She was lethargic and didn't want to move. I couldn't get her to drink anything and she was pale as a sheet. She had no lips. I called the dr yet again and they said I should probably take her to the ER at LeBonheur to get checked out. Meanwhile I was in contact with the nutritionist who had serious concerns about her being medically stable and also was encouraging me to take her to the ER. She said when we got out of the hospital I should be prepared to admit Kayla into a long term residential facility that specialized in eating disorders.... either in Denver, CO or Chicago, IL (!!!). Our insurance company on the other hand just wanted to send her to a psychiatrist and get a prescription for antidepressants which made me furious. My brain was spinning from all of this but I marched on. I told Kayla we were going to the hospital and as she cried about not wanting to go, her face did the ugly cry thing but only one tiny tear eeeked out. I told her we could go in my car or I could call an ambulance but she was going.
As soon as we got to LeBonheur, they saw us immediately. She had to run to the bathroom and the nurse went along with her to make sure she wasn't trying to throw up. They took vitals and put us in a triage room. They started to run an IV bag of fluids and did an EKG (heart rate was crazy high) and bloodwork. Talked to her about why she didn't want to eat... made her comfy and decided to admit her. By that night they were talking about giving her a blood transfusion and Friday morning they did just that. The Hospitalist said there were some things that just didn't match up with an eating disorder and wanted to do a CT of her abdomen to see if we were dealing with a GI issue. To get a CT you have to drink two huge bottles of horrible icky stuff and her stomach was so small from whole malnutrition thing that just the thought of drinking made her sick. She tried but only got about half a bottle down. They ended up having to do a NG tube (tube down the nose to stomach) and that was horrific. She had a major panic attack and they didn't get it in the first time and had to do it again. Then the tube had to stay down through the testing and until we got back to the room. Meanwhile her stomach was a mess and she had to go to the bathroom constantly. CT scan showed inflammation so they started talking about prepping on Sunday for a colonoscopy/ endoscopy. We all sort of breathed a sigh of relief at that point, especially when the doctor said - "This is not something you are doing to yourself. This is something your body is doing to you."
Because Kayla wasn't able to eat real food and at that point was passing blood, they needed to give her a PICC line (a central IV). Through that they would give her what is called TPN which is IV Nutrition. They had to give her morphine which was amusing for as long as they let me stay with her which was about a minute. When they got back to the room, they started a second blood transfusion. She was losing a lot through her bowels. Meanwhile her right arm where her regular IV was started to swell so they elevated that and started talking about having to do a new IV. About 30 minutes into the second transfusion she started to run a fever which can be a sign of a bad reaction so they had to stop the process. It was an exhausting day but we were in such great hands.
Sunday was Easter. Most of the day was quiet but she had to start the "gentle" cleanse to prep for the test on Tuesday. When your colon is already angry, there is no such thing as gentle. She already had stomach pain and the cleanse just intensified it. They gave her Miralax and she had to drink 6 - 5oz cups of it mixed with whatever she wanted and 8 more the next day. She only got down two that night. It was horrible for us both. Its so hard to see your child in pain and not be able to do anything about it. They let her sleep and we talked to the GI Dr. about it the next AM. He told her that he would only make her do 6 more and two pills. The pills were easy. The drinks however once again caused anxiety. She had two glasses to go and just couldn't do it. We ended up having to give her Ativan to calm her down and once that kicked in the nurse got her to swallow the rest. I could have used an Ativan at that point too. She also had blood transfusion #3 that night. She will most likely never drink Sprite or Gatorade again. Ever.
When she woke up the next morning she thought she still had to finish drinking and was so relieved to find out it was over. They did the scope around 11 that morning and they had to put her completely out for it. Poor kid had to keep going to the restroom before the procedure which meant a wheelchair ride down the hall because she was too weak to walk and hooked up to IV's. BUT, this is where the story gets better.... sort of.
The scope took about an hour and when the dr. showed me the scans it was obvious what was causing the bleeding and the pain. She has Inflammatory Bowel Disease, not to be confused with IBS. It is incurable but manageable. It manifests as either Crohns or Ulcerative Colitis and in her case its more than likely UC (very severe case). If you really wanna know more you can go to ccfa.org. But in short, she will have to be on medication for the rest of her life and there will be times when it will "flare" and those times may land her in the hospital again with worst case scenario having her colon surgically removed. Its an autoimmune disease and no two cases are alike so you just have to learn how to cope and manage it. They started her on IV steroids and Sulfasalazine which is a miracle drug. It completely stopped her stomach pain and calmed down the bathroom urgency within 24 hours. She was still passing blood but at least now we knew why.
After the test she could eat whatever she wanted which was wonderful after the last five days on liquids. They ran out of veins in her arms to draw blood from (once the PICC line went in they couldn't use the left arm at all and the right arm was just shot) so they had to draw from her foot. Her heart rate was still running high and that bothered me but I figured they were watching it so I tried not to worry. The first thing she asked when she woke up from the scan was "are they sure it's not cancer?" Poor kid! I had no idea she was worried about that!!
The next day (Wed) she woke up to swelling in her left arm where the PICC line was. We had to get an ultrasound done and unfortunately they found a rather large blood clot. The PICC line was removed (which meant the end of IV Nutrition ... she was 95lbs when we got to LeBonheur and might have been up to 100 at that point) but they couldn't start blood thinner right away because she had a disease that caused her to bleed and for the last 24 hours they had been trying to STOP the bleeding. Giving a blood thinner would be counterproductive. They had to call in a hematologist from St. Jude and they decided to give a Heparin drip via IV for 24 hours and see what happened. If her bleeding got worse, they could stop the heparin immediately and take other measures. Thankfully it worked but because there was still significant blood in her stool, they did another 24 hours on the drip and did another ultrasound to check things out on Friday. The clot runs from the middle of her upper arm to her jugular vein. Since there was no adverse reaction to the Heparin, they started her on Lovenox shots in her stomach twice a day. She has learned how to give them to herself and will have to continue them for three months with regular checkups at the Hematology Clinic at St. Jude. (As of this post the three months will be up next Wednesday! Hoping the ultrasound shows the clot is dissolved.)
Little by little the bleeding stopped over the next few days. They switched her to oral steroids and after she responded well them for 24 hours, they finally let us go home on Day 14. We made so many new friends there and it was bittersweet leaving but we were so happy to just go home and sleep in our own beds!!
Kayla was still weak and still needed to gain weight but her coloring was back and she felt like trying to finish out the school year so after a week at home, she went back and took her final exams. Would you believe the kid ACED most of them (we won't talk about Geometry... but she passed the class which is all that matters)!? The summer so far has been filled with a lot of rest, lots of Dr. appts, and almost 20 lbs in weight gain (Thank you Prednisone!)!
I want to clarify what the Hospitalist told us... Kayla WAS anorexic. Anorexia is a term used when you lose your appetite no matter what the reason. She did not however have Anorexia Nervosa which is the eating disorder. It was strange to be glad about an incurable autoimmune disease but it truly was the better diagnosis. I am absolutely appalled by how difficult it was to find help for an eating disorder in this city. Those were terrifying weeks and I had no idea how to help my daughter as I watched her wither away. My heart goes out to anyone who has ever dealt with such a difficult and debilitating diagnosis. It makes me look at weight in a whole new light. I'm just as guilty as anyone about thinking someone is too fat or too thin, including myself. The next time you think about jokingly saying "you need to eat a cheeseburger" or making a comment about one too many cookies, remember there are all sorts of reasons people weigh what they do. Eating disorders (whether it be too much or too little), cancer, steroids, thyroid medication, depression, Inflammatory Bowel Disease... these things are very real and many uncontrollable. Lets start looking at each other's hearts instead of our waist sizes. Be kind always.
As a refresher, somewhere around the first of April, Kayla became ill. She was staying in her room a lot, taking a long time in the bathroom, and generally avoiding food. She went to school one Monday and called me around 8am saying she was going to pass out. Don went to get her, I called in sick to work and we went straight to the pediatrician. All signs, including a 20 lb weight loss, pointed to an eating disorder. After the appropriate freak out, we had blood work done which confirmed she was severely anemic and malnourished. Her prealbumin was extremely low as well as her iron level and red blood cells. Prealbumin is a protein that is made in the liver and released in the blood. It helps carry certain hormones that regulate the way the body uses energy and other substances through the blood. She had almost none. The pediatrician (not our regular) sent us to a place in Cordova called The Transformation Center. They specialize in eating disorders and have an intensive out patient therapy program. We went for our intake appointment and the Dr. who saw us said she didn't think they would be of much help to us since Kayla didn't seem to have body image issues. I was sent away with a couple of names of therapists as well as nutritionists and spent the next week and a half trying to find the right people to talk to while trying to get Kayla to just eat and drink ANYTHING!!! It was a complete nightmare. The earliest we could get a therapy appointment was April 29th. The nutritionist everyone recommended didn't take insurance and was very costly although we certainty would have figured it out. I was so frustrated that the one person who seemed in a hurry to get her help was me! Thank God she ran a fever in the second week (Monday) and we had to go back to see our regular doc (Tues). She had no other symptoms besides the fever so he assumed it was something viral. He gently but firmly read her the riot act and said she had to eat or would end up in the hospital on a feeding tube. The next morning (Wed) she threw up (just once) and was still running fever so I called the dr's office again and they said just keep her on a liquid diet until she felt better.
By Thursday I was extremely concerned that she was dehydrated. She was lethargic and didn't want to move. I couldn't get her to drink anything and she was pale as a sheet. She had no lips. I called the dr yet again and they said I should probably take her to the ER at LeBonheur to get checked out. Meanwhile I was in contact with the nutritionist who had serious concerns about her being medically stable and also was encouraging me to take her to the ER. She said when we got out of the hospital I should be prepared to admit Kayla into a long term residential facility that specialized in eating disorders.... either in Denver, CO or Chicago, IL (!!!). Our insurance company on the other hand just wanted to send her to a psychiatrist and get a prescription for antidepressants which made me furious. My brain was spinning from all of this but I marched on. I told Kayla we were going to the hospital and as she cried about not wanting to go, her face did the ugly cry thing but only one tiny tear eeeked out. I told her we could go in my car or I could call an ambulance but she was going.
As soon as we got to LeBonheur, they saw us immediately. She had to run to the bathroom and the nurse went along with her to make sure she wasn't trying to throw up. They took vitals and put us in a triage room. They started to run an IV bag of fluids and did an EKG (heart rate was crazy high) and bloodwork. Talked to her about why she didn't want to eat... made her comfy and decided to admit her. By that night they were talking about giving her a blood transfusion and Friday morning they did just that. The Hospitalist said there were some things that just didn't match up with an eating disorder and wanted to do a CT of her abdomen to see if we were dealing with a GI issue. To get a CT you have to drink two huge bottles of horrible icky stuff and her stomach was so small from whole malnutrition thing that just the thought of drinking made her sick. She tried but only got about half a bottle down. They ended up having to do a NG tube (tube down the nose to stomach) and that was horrific. She had a major panic attack and they didn't get it in the first time and had to do it again. Then the tube had to stay down through the testing and until we got back to the room. Meanwhile her stomach was a mess and she had to go to the bathroom constantly. CT scan showed inflammation so they started talking about prepping on Sunday for a colonoscopy/ endoscopy. We all sort of breathed a sigh of relief at that point, especially when the doctor said - "This is not something you are doing to yourself. This is something your body is doing to you."
Because Kayla wasn't able to eat real food and at that point was passing blood, they needed to give her a PICC line (a central IV). Through that they would give her what is called TPN which is IV Nutrition. They had to give her morphine which was amusing for as long as they let me stay with her which was about a minute. When they got back to the room, they started a second blood transfusion. She was losing a lot through her bowels. Meanwhile her right arm where her regular IV was started to swell so they elevated that and started talking about having to do a new IV. About 30 minutes into the second transfusion she started to run a fever which can be a sign of a bad reaction so they had to stop the process. It was an exhausting day but we were in such great hands.
Sunday was Easter. Most of the day was quiet but she had to start the "gentle" cleanse to prep for the test on Tuesday. When your colon is already angry, there is no such thing as gentle. She already had stomach pain and the cleanse just intensified it. They gave her Miralax and she had to drink 6 - 5oz cups of it mixed with whatever she wanted and 8 more the next day. She only got down two that night. It was horrible for us both. Its so hard to see your child in pain and not be able to do anything about it. They let her sleep and we talked to the GI Dr. about it the next AM. He told her that he would only make her do 6 more and two pills. The pills were easy. The drinks however once again caused anxiety. She had two glasses to go and just couldn't do it. We ended up having to give her Ativan to calm her down and once that kicked in the nurse got her to swallow the rest. I could have used an Ativan at that point too. She also had blood transfusion #3 that night. She will most likely never drink Sprite or Gatorade again. Ever.
When she woke up the next morning she thought she still had to finish drinking and was so relieved to find out it was over. They did the scope around 11 that morning and they had to put her completely out for it. Poor kid had to keep going to the restroom before the procedure which meant a wheelchair ride down the hall because she was too weak to walk and hooked up to IV's. BUT, this is where the story gets better.... sort of.
The scope took about an hour and when the dr. showed me the scans it was obvious what was causing the bleeding and the pain. She has Inflammatory Bowel Disease, not to be confused with IBS. It is incurable but manageable. It manifests as either Crohns or Ulcerative Colitis and in her case its more than likely UC (very severe case). If you really wanna know more you can go to ccfa.org. But in short, she will have to be on medication for the rest of her life and there will be times when it will "flare" and those times may land her in the hospital again with worst case scenario having her colon surgically removed. Its an autoimmune disease and no two cases are alike so you just have to learn how to cope and manage it. They started her on IV steroids and Sulfasalazine which is a miracle drug. It completely stopped her stomach pain and calmed down the bathroom urgency within 24 hours. She was still passing blood but at least now we knew why.
After the test she could eat whatever she wanted which was wonderful after the last five days on liquids. They ran out of veins in her arms to draw blood from (once the PICC line went in they couldn't use the left arm at all and the right arm was just shot) so they had to draw from her foot. Her heart rate was still running high and that bothered me but I figured they were watching it so I tried not to worry. The first thing she asked when she woke up from the scan was "are they sure it's not cancer?" Poor kid! I had no idea she was worried about that!!
The next day (Wed) she woke up to swelling in her left arm where the PICC line was. We had to get an ultrasound done and unfortunately they found a rather large blood clot. The PICC line was removed (which meant the end of IV Nutrition ... she was 95lbs when we got to LeBonheur and might have been up to 100 at that point) but they couldn't start blood thinner right away because she had a disease that caused her to bleed and for the last 24 hours they had been trying to STOP the bleeding. Giving a blood thinner would be counterproductive. They had to call in a hematologist from St. Jude and they decided to give a Heparin drip via IV for 24 hours and see what happened. If her bleeding got worse, they could stop the heparin immediately and take other measures. Thankfully it worked but because there was still significant blood in her stool, they did another 24 hours on the drip and did another ultrasound to check things out on Friday. The clot runs from the middle of her upper arm to her jugular vein. Since there was no adverse reaction to the Heparin, they started her on Lovenox shots in her stomach twice a day. She has learned how to give them to herself and will have to continue them for three months with regular checkups at the Hematology Clinic at St. Jude. (As of this post the three months will be up next Wednesday! Hoping the ultrasound shows the clot is dissolved.)
Little by little the bleeding stopped over the next few days. They switched her to oral steroids and after she responded well them for 24 hours, they finally let us go home on Day 14. We made so many new friends there and it was bittersweet leaving but we were so happy to just go home and sleep in our own beds!!
Kayla was still weak and still needed to gain weight but her coloring was back and she felt like trying to finish out the school year so after a week at home, she went back and took her final exams. Would you believe the kid ACED most of them (we won't talk about Geometry... but she passed the class which is all that matters)!? The summer so far has been filled with a lot of rest, lots of Dr. appts, and almost 20 lbs in weight gain (Thank you Prednisone!)!
I want to clarify what the Hospitalist told us... Kayla WAS anorexic. Anorexia is a term used when you lose your appetite no matter what the reason. She did not however have Anorexia Nervosa which is the eating disorder. It was strange to be glad about an incurable autoimmune disease but it truly was the better diagnosis. I am absolutely appalled by how difficult it was to find help for an eating disorder in this city. Those were terrifying weeks and I had no idea how to help my daughter as I watched her wither away. My heart goes out to anyone who has ever dealt with such a difficult and debilitating diagnosis. It makes me look at weight in a whole new light. I'm just as guilty as anyone about thinking someone is too fat or too thin, including myself. The next time you think about jokingly saying "you need to eat a cheeseburger" or making a comment about one too many cookies, remember there are all sorts of reasons people weigh what they do. Eating disorders (whether it be too much or too little), cancer, steroids, thyroid medication, depression, Inflammatory Bowel Disease... these things are very real and many uncontrollable. Lets start looking at each other's hearts instead of our waist sizes. Be kind always.
Tuesday, April 15, 2014
Truth
I know you are probably wondering why I haven't posted in a week. So here goes...
In my last post I alluded to my daughter's health issues. It has been a long week filled with blood work, dr visits, and answers that brought on more questions. Why was she losing so much weight? Was it her thyroid going crazy like mine? Some other medical reason? We both knew what the answer would probably be. And we were right. She is severely anemic and malnourished. She has "disordered eating".
Why on earth would I put this out there publicly? Because after talking about it we both agreed that it shouldn't be a taboo subject. Because lots of teenage girls (and even boys) use food to cope with stress or body image issues. Our pediatrician referred us to a wonderful place called the Transformation Center for intensive outpatient therapy. We had an appointment on Friday but they did not think K would be a good candidate for the program. It is 9 hours a week of group and individual therapy and nutrition that deals mostly with body image issues. That's not where her problems stem from. The doctor said the disordered eating is a secondary issue with anxiety being the primary. She said half the program they offer would help but the other half really wouldn't so she would prefer we go for help elsewhere.
By the time we got out of there Friday afternoon it was too late to call the insurance company or any other doctor's offices. We had to muddle through the weekend and it was a rough one. K is still not eating well and her body is weak. It is difficult for her to stand for longer than a few minutes at a time and she is exhausted. I am appropriately worried and anxious for my daughter. Yes I have questioned how I didn't see this... how it got so bad without us realizing it. That's not going to help her get better though so I've had my moment and now I'm in Mama Lion mode. I haven't slept well in a week and I haven't been taking care of my dietary needs or exercise but right now she has to come first. I'm trying to make smart choices but I don't have the time or energy to be gung ho about it right now.
The good news is she WANTS to get better. There are several sources of stress and anxiety that are causing her to not want to eat. Thanks to the doctor we saw Friday, I am armed with the names and numbers of a good therapist and nutritionist that I will contact today. Don's EAP (Employee Assistance Program) will be very helpful with the therapy costs which is a huge relief. I visited with the school counselor on Friday (she hasn't been to school since last Tuesday) and she emailed all of K's teachers to let them know what was going on. The one teacher we thought might be a problem is actually the one who has been the most compassionate and supportive. It is painful for me to watch her try to eat and not get much down but we have hope now that she will get the right treatment. Its not going to happen overnight. We realize it will be a long road. We are working on taking one moment at a time. Prayers and well wishes are all welcome. We need all the support we can get. She really wanted to try and go back to school today but has been running fever so we will try again tomorrow.
The huge blessing that has come from all of this is that ever since last Monday, I feel like I have my daughter back. She still has her irritable moments but for the most part she has been very open, honest, and loving. She has been strong and spunky (in attitude if not physically) and even has her faith back. She knows she has all of our support and I will do everything I can to make sure she keeps feeling that circle of love around her. I wish this hadn't happened of course but we are holding on to each other and working through it together.
I've always like the Serenity Prayer but right now it has more meaning than ever... we all know the first part but did you know there is another verse?
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
One moment at a time. Keep Going Kid, Keep going. I'll be right here.
In my last post I alluded to my daughter's health issues. It has been a long week filled with blood work, dr visits, and answers that brought on more questions. Why was she losing so much weight? Was it her thyroid going crazy like mine? Some other medical reason? We both knew what the answer would probably be. And we were right. She is severely anemic and malnourished. She has "disordered eating".
Why on earth would I put this out there publicly? Because after talking about it we both agreed that it shouldn't be a taboo subject. Because lots of teenage girls (and even boys) use food to cope with stress or body image issues. Our pediatrician referred us to a wonderful place called the Transformation Center for intensive outpatient therapy. We had an appointment on Friday but they did not think K would be a good candidate for the program. It is 9 hours a week of group and individual therapy and nutrition that deals mostly with body image issues. That's not where her problems stem from. The doctor said the disordered eating is a secondary issue with anxiety being the primary. She said half the program they offer would help but the other half really wouldn't so she would prefer we go for help elsewhere.
By the time we got out of there Friday afternoon it was too late to call the insurance company or any other doctor's offices. We had to muddle through the weekend and it was a rough one. K is still not eating well and her body is weak. It is difficult for her to stand for longer than a few minutes at a time and she is exhausted. I am appropriately worried and anxious for my daughter. Yes I have questioned how I didn't see this... how it got so bad without us realizing it. That's not going to help her get better though so I've had my moment and now I'm in Mama Lion mode. I haven't slept well in a week and I haven't been taking care of my dietary needs or exercise but right now she has to come first. I'm trying to make smart choices but I don't have the time or energy to be gung ho about it right now.
The good news is she WANTS to get better. There are several sources of stress and anxiety that are causing her to not want to eat. Thanks to the doctor we saw Friday, I am armed with the names and numbers of a good therapist and nutritionist that I will contact today. Don's EAP (Employee Assistance Program) will be very helpful with the therapy costs which is a huge relief. I visited with the school counselor on Friday (she hasn't been to school since last Tuesday) and she emailed all of K's teachers to let them know what was going on. The one teacher we thought might be a problem is actually the one who has been the most compassionate and supportive. It is painful for me to watch her try to eat and not get much down but we have hope now that she will get the right treatment. Its not going to happen overnight. We realize it will be a long road. We are working on taking one moment at a time. Prayers and well wishes are all welcome. We need all the support we can get. She really wanted to try and go back to school today but has been running fever so we will try again tomorrow.
The huge blessing that has come from all of this is that ever since last Monday, I feel like I have my daughter back. She still has her irritable moments but for the most part she has been very open, honest, and loving. She has been strong and spunky (in attitude if not physically) and even has her faith back. She knows she has all of our support and I will do everything I can to make sure she keeps feeling that circle of love around her. I wish this hadn't happened of course but we are holding on to each other and working through it together.
I've always like the Serenity Prayer but right now it has more meaning than ever... we all know the first part but did you know there is another verse?
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
One moment at a time. Keep Going Kid, Keep going. I'll be right here.
Tuesday, April 8, 2014
No Witty Title... just Real Life
What I did wrong today...
I called into work, took my daughter to the doctor and found out she is 20 lbs lighter than she was. She's the one that doesn't have 20 lbs to lose. I knew something was wrong but I had no idea how wrong. I knew she was being picky about food but had no idea her body was withering away. I knew she was irritable but had no idea it was because she needed nourishment.
We are headed to the lab on Wednesday for bloodwork to rule out thyroid issues or some other underlying medical issue. She and I both know though this is bigger than that. She and I both know her aversion to food is an unhealthy reaction to stress... school stress, general life stress, and probably some stuff neither one of us understands right now. We trust the doctors to give us the right direction and guidance from here pending the bloodwork.
What I will do right tomorrow and every day after.....
- I skipped the gym
- I didn't eat breakfast
- I had spaghetti at 9pm
I called into work, took my daughter to the doctor and found out she is 20 lbs lighter than she was. She's the one that doesn't have 20 lbs to lose. I knew something was wrong but I had no idea how wrong. I knew she was being picky about food but had no idea her body was withering away. I knew she was irritable but had no idea it was because she needed nourishment.
We are headed to the lab on Wednesday for bloodwork to rule out thyroid issues or some other underlying medical issue. She and I both know though this is bigger than that. She and I both know her aversion to food is an unhealthy reaction to stress... school stress, general life stress, and probably some stuff neither one of us understands right now. We trust the doctors to give us the right direction and guidance from here pending the bloodwork.
What I will do right tomorrow and every day after.....
- I will continue to strive for healthy eating, exercising, and body image. I will not make negative comments about my own body or anyone else’s.
- I will give her support and compassion
- I will not be the "food police" ... ultimately this isn't about food
- Help her learn healthy ways to deal with stress and anxiety
- Love her more than she will ever understand until she has children of her own.
Sunday, April 6, 2014
Lean on Me
Its been a week since my diagnosis.... ok, nine days. Today at church the sermon was on confession and how we need to confess to one another in order to be held accountable, to get support, and to see that all of us mess up. Yes, ALL of us.
Here's what I've done right this week.
My biggest struggle right now is figuring out what to eat. When I try to eat healthy I don't eat enough. When you don't eat enough your body thinks its starving so it hangs on to the fat for survival. A friend of mine recommended I use the MyFitnessPal app. I'm going to try it this week and see if I can figure out how much I need to eat every day and then worry about WHAT I eat. I get obsessed with not eating carbs. I know your body needs carbs. I just have to figure out the balance.
Don and I went to the gym this afternoon and after about 10 minutes of listening to CNN say in 20 different ways that no one knows where the poor Malaysian airplane is, I flipped on my iPod and listened to music. Lean on Me played in the last five minutes of our workout. It made me think about a friend who came up to me after church today and told me she was following this blog to hopefully gain some encouragement in her own journey. It is so hard to take care of yourself without some sort of support system. I've tried and failed many many times. This time I feel it will be different because Don is by my side. He and I are doing this together. Its much easier to workout when someone is sweating just as much right next to you. Find a friend to take a walk with. Get someone to hold you accountable for your food choices. Encourage someone fighting the same battle. We are going to make mistakes. ALL of us. But let's lean on each other in the process. We weren't put here to be all alone. We are here to form relationships and strengthen each other.
Lean on me when you're not strong
And I'll be your friend, I'll help you carry on
For it won't be long
'Til I'm gonna need somebody to lean on
You just call on me, brother, when you need a hand
We all need somebody to lean on
I just might have a problem that you'll understand
We all need somebody to lean on
Here's what I've done right this week.
- Filled my Metformin prescription
- Ordered the grilled chicken nuggets and diet lemonade at ChickFilA
- Went to the gym four times and walked around the block most of the other days
- Ate breakfast most mornings
- Drank lots of water
- Didn't drink any soda (this is huge)
- Laid off carbs and had thin crust pizza when that was available.
- Started this blog
- Bought Cook This, Not That today at Kohl's ($5 as part of the Kohl's Cares for Kids program)
- Ate macaroni with no protien
- Had a Ding Dong (but just one!)
- Didn't exercise at the gym enough
- Ate spaghetti with no protein
- Didn't eat enough most days
- Didn't track my meals
- Didn't actually fill my Metformin prescription until Friday and didn't take my first pill until last night
- Didn't eat near enough veggies
- Had spaghetti... again
My biggest struggle right now is figuring out what to eat. When I try to eat healthy I don't eat enough. When you don't eat enough your body thinks its starving so it hangs on to the fat for survival. A friend of mine recommended I use the MyFitnessPal app. I'm going to try it this week and see if I can figure out how much I need to eat every day and then worry about WHAT I eat. I get obsessed with not eating carbs. I know your body needs carbs. I just have to figure out the balance.
Don and I went to the gym this afternoon and after about 10 minutes of listening to CNN say in 20 different ways that no one knows where the poor Malaysian airplane is, I flipped on my iPod and listened to music. Lean on Me played in the last five minutes of our workout. It made me think about a friend who came up to me after church today and told me she was following this blog to hopefully gain some encouragement in her own journey. It is so hard to take care of yourself without some sort of support system. I've tried and failed many many times. This time I feel it will be different because Don is by my side. He and I are doing this together. Its much easier to workout when someone is sweating just as much right next to you. Find a friend to take a walk with. Get someone to hold you accountable for your food choices. Encourage someone fighting the same battle. We are going to make mistakes. ALL of us. But let's lean on each other in the process. We weren't put here to be all alone. We are here to form relationships and strengthen each other.
Lean on me when you're not strong
And I'll be your friend, I'll help you carry on
For it won't be long
'Til I'm gonna need somebody to lean on
You just call on me, brother, when you need a hand
We all need somebody to lean on
I just might have a problem that you'll understand
We all need somebody to lean on
Thursday, April 3, 2014
My Name is Betsey and I Love Food
My name is Betsey and I have a love affair with food. Simple as that. I'm not a foodie really. I hate to cook. I like baking a little bit. Mostly I enjoy the eating part. I prefer someone else do the prepwork. I was a picky eater as a kid. My diet consisted of macaroni and cheese, grilled cheese, cheeseburgers, bologna and cheese sandwiches... see the trend here? I have become more adventurous as an
adult and have a much longer list of veggies I enjoy now besides just
peas and corn. OH and broccoli with yeah, you guessed it, cheese. It wasn't a coincidence that I married a man from Wisconsin!
I've always struggled with weight. I was "cute" in high school but certainly not one of those girls who could wear a bandanna as a belt! I gained and lost in my 20's and thanks to Gestational Diabetes when I was pregnant with Kayla, I ended up thinner after my pregnancy than before. Why is it so easy to eat right when it effects someone else but so hard when its just your life at stake? I always stayed within 160-180 lbs. That seemed to be ok. My clothes fit fine and I didn't have any health issues. Then I got pregnant again. Pregnancy agrees with me. I enjoyed wearing maternity clothes and not worrying about sucking in my tummy. But about 18 months after the baby came, my thyroid went a little crazy. I was diagnosed as Hyperthyroid in June of 2007. One of the symptoms was supposed to be rapid weight loss but I wasn't "lucky" enough to experience that one. I just had the crazy heart beat, mood swings, horrible anxiety, hair loss, skin rashes, and muscle weakness. I went on anti-thyroid meds for a year and then had radioactive iodine done to kill off my thyroid gland which made me Hypothyroid and basically killed my metabolism. I was 182 when I was diagnosed and I sit at 195 today. There it is in black and white... 195. Five pounds away from two hundred.
Last week I went to a new endocrinologist. I've been letting my GP check my thyroid levels but felt like I needed to get a specialist back into the mix. My parents both have Type II Diabetes and I knew it was a possibility that I may be diagnosed with the same at some point. First thing the nurse did was stick my finger to take my fasting blood sugar which was 113 (it should be below 100). The doc came in and asked all sorts of questions related to thyroid but also related to Diabetes. He said my blood sugar was definitely higher than he'd like and after a physical exam he diagnosed me Pre-Diabetic and also with PCOS or PolyCystic Ovary Syndrome. He gave me a prescription for Metformin and told me to diet and exercise and come see him in six months. (I got my bloodwork results in the mail yesterday and it turns out my thyroid numbers are actually high, not low. Doc doesn't want to change any meds right now though.)
I posted about this on Facebook and was overwhelmed by the support I got. I wanted to be held accountable for this new lifestyle change and I thought putting it all out there might help. A few friends suggested I blog about the journey so here I am. Please feel free to comment on any post and share with others as you see fit. As self centered as it might sound, I need your comments and encouragement!! Its the biggest motivator for me.
* The title of the blog is courtesy of my 9 year old. It goes along with my philosophy that diets don't work. The only changes that work are lifestyle changes and you have to take baby steps. Don't deprive yourself of the things you love or it will be so much easier to fall of the proverbial wagon.
I've always struggled with weight. I was "cute" in high school but certainly not one of those girls who could wear a bandanna as a belt! I gained and lost in my 20's and thanks to Gestational Diabetes when I was pregnant with Kayla, I ended up thinner after my pregnancy than before. Why is it so easy to eat right when it effects someone else but so hard when its just your life at stake? I always stayed within 160-180 lbs. That seemed to be ok. My clothes fit fine and I didn't have any health issues. Then I got pregnant again. Pregnancy agrees with me. I enjoyed wearing maternity clothes and not worrying about sucking in my tummy. But about 18 months after the baby came, my thyroid went a little crazy. I was diagnosed as Hyperthyroid in June of 2007. One of the symptoms was supposed to be rapid weight loss but I wasn't "lucky" enough to experience that one. I just had the crazy heart beat, mood swings, horrible anxiety, hair loss, skin rashes, and muscle weakness. I went on anti-thyroid meds for a year and then had radioactive iodine done to kill off my thyroid gland which made me Hypothyroid and basically killed my metabolism. I was 182 when I was diagnosed and I sit at 195 today. There it is in black and white... 195. Five pounds away from two hundred.
Last week I went to a new endocrinologist. I've been letting my GP check my thyroid levels but felt like I needed to get a specialist back into the mix. My parents both have Type II Diabetes and I knew it was a possibility that I may be diagnosed with the same at some point. First thing the nurse did was stick my finger to take my fasting blood sugar which was 113 (it should be below 100). The doc came in and asked all sorts of questions related to thyroid but also related to Diabetes. He said my blood sugar was definitely higher than he'd like and after a physical exam he diagnosed me Pre-Diabetic and also with PCOS or PolyCystic Ovary Syndrome. He gave me a prescription for Metformin and told me to diet and exercise and come see him in six months. (I got my bloodwork results in the mail yesterday and it turns out my thyroid numbers are actually high, not low. Doc doesn't want to change any meds right now though.)
I posted about this on Facebook and was overwhelmed by the support I got. I wanted to be held accountable for this new lifestyle change and I thought putting it all out there might help. A few friends suggested I blog about the journey so here I am. Please feel free to comment on any post and share with others as you see fit. As self centered as it might sound, I need your comments and encouragement!! Its the biggest motivator for me.
* The title of the blog is courtesy of my 9 year old. It goes along with my philosophy that diets don't work. The only changes that work are lifestyle changes and you have to take baby steps. Don't deprive yourself of the things you love or it will be so much easier to fall of the proverbial wagon.
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