I haven't posted in a while. The weekend before last I flew home. I've been recovering from the trip and adjusting to being home again. That's always a rough transition for me. Jet lag, 3 dogs, 2 teenagers, a dirty house. It's a lot to take in after being gone for 3 weeks. I haven't even completely unpacked.
My blood sugar isn't any better so far. I titrated up on the medication Saturday. The only difference so far is increased gas and bloating. My blood sugar still drops every day. I have been trying to just correct it and go on with whatever plans we had for the day. There have been things on the calendar for every day since I've returned. Dropping my son off at soccer camp and picking him up. Errands. Family activities. I have also been trying to get the house cleaned a bit.
I am worn out. I am frustrated. I can't keep up with conversations with my family because their brains go so much faster than mine, and they always dart from one subject to another. Trying to keep them on one subject at a time is impossible, then I get frustrated with it, and they get frustrated with me. I know that soon I will once again stop trying to keep up with it. It is too hard. And that makes me very sad. Life seems to be swooshing by without me. Soon my babies will be grown and out of the house. I won't know who they are because I am too sick. I don't want to hold them back, but I don't want them to leave me behind either. My daughter really tries to spend time with me. My son is just at an age that he is so irritated with me that he doesn't want to take the time to try to talk to me. I really hope that at some point we can reconnect.
I go to my regular doctor today. I will talk with her about my increased pain level due to arthritis, and I will also request a referral to go to a therapist. I need help getting out of this dark place I am in. There is less and less light with each passing day. I don't know how to get out of it on my own. I wrote it down on my list of things to ask her, and I am writing it here. That way I won't be able to back out of asking. I hope.
Monday, June 29, 2015
Friday, June 12, 2015
Funk
As I sit here reflecting on the past few days I find it difficult to know what to say. Some wonderful things have happened. My long-term disability has already been processed, and my first check is at home waiting for me to return from CA. A dear friend who was diagnosed with cancer found out that it is in the stage just before cancer. I went to visit with my Uncle, Aunt, their granddaughter and great-grandbaby (and their dog, too!). Met a friend for lunch. I went to the movies to see Spy with my mom and a friend. All of these have been blessings to me!
I've been walking most mornings (I skipped one earlier in the week and today because my lower back an hips were too locked up from arthritis). I am up to 2 laps around the court my parents live on. It isn't far, but it is building my strength up little by little. I am taking the medicine right before each main meal, as instructed, and eating the carb to protein ratio as closely as I can. This is day #6. I haven't seen any improvement in my blood sugar. The medicine is making my little pouch upset at times, and I have a lot of uncomfortable gas from it. I have 2 more weeks before I can go up on the dosage. I am praying that I will see some improvement - no matter how small - at that point. It is difficult to stay positive. I'm trying hard to not be swallowed up by this funk that is looming around me.
I miss my family. They are enjoying the freedom that comes along with mom being away and school being out for the summer. Video games in the living room, football with a loaf of bread in the kitchen, being loud and watching things on TV that mom thinks are stupid. I miss the occasional hug, the silly looks, the joy of seeing my son and daughter being such good friends and enjoy the same things, my furbabies coming to get rubbed and cuddles. It is impossible to name everything. It will be good to be back home in a little over a week. And then I will miss my parents and friends here.
I've been walking most mornings (I skipped one earlier in the week and today because my lower back an hips were too locked up from arthritis). I am up to 2 laps around the court my parents live on. It isn't far, but it is building my strength up little by little. I am taking the medicine right before each main meal, as instructed, and eating the carb to protein ratio as closely as I can. This is day #6. I haven't seen any improvement in my blood sugar. The medicine is making my little pouch upset at times, and I have a lot of uncomfortable gas from it. I have 2 more weeks before I can go up on the dosage. I am praying that I will see some improvement - no matter how small - at that point. It is difficult to stay positive. I'm trying hard to not be swallowed up by this funk that is looming around me.
I miss my family. They are enjoying the freedom that comes along with mom being away and school being out for the summer. Video games in the living room, football with a loaf of bread in the kitchen, being loud and watching things on TV that mom thinks are stupid. I miss the occasional hug, the silly looks, the joy of seeing my son and daughter being such good friends and enjoy the same things, my furbabies coming to get rubbed and cuddles. It is impossible to name everything. It will be good to be back home in a little over a week. And then I will miss my parents and friends here.
Sunday, June 7, 2015
Carbs Galore!
Carbs, carbs, and more carbs! I haven’t tried eating this many carbs in over 3 years. And less protein. It’s been drilled into me since well before my surgery that I should eat very few carbs (one doctor even told me to cut out ALL carbs because that was causing my blood sugar issues) and as much protein as possible. 85 - 100 grams a day! Now I should eat no more than 75 grams of protein and about 135 grams of carbs a day. The whole time I am eating now the little voice in my head is crying NOOOOOOOOOOOO....
Yesterday I traveled from AZ to CA to stay with my parents for a week or 2. My sister was very ready to be home! I slept for about 10 hours last night. I got up and went for a short walk. Only about 5 minutes, but it’s a start. I ate most of my breakfast. 2 hours later I checked my blood sugar and it was 102! Hooray!!! That hasn’t happened in a very long time. It made me feel good. Praise God! I had my mid-morning snack, then took a shower. I rested for a little while and then I was ready to go to the pharmacy to get the medicine the doctor at Mayo had subscribed. I checked my blood sugar just to be sure I could drive. 80. Nope - didn’t have warm-fuzzies about driving. My mom drove me to CVS. I checked my blood sugar again when we were almost there. 71. I’m not supposed to correct it until below 70 now, but I didn’t feel comfortable going into the store when it was obviously dropping. I went ahead and ate my 2 PNB crackers and a small piece of beef jerky. Boy oh boy, I didn’t feel good. We finished there and went to the grocery store for some items that I needed for being on the new and improved diet. More walking. I’m pretty sure that a snail could have gotten around the store faster than me. I was so glad to get back to the house. I gathered everything I needed so I could stay in one spot for a while. I took my new med, then I had a sandwich with 2 WHOLE PIECES of 12 grain bread. TWO PIECES!!! Yum! It took a couple of hours before my body recovered from the low, but I’m feeling good again. My afternoon snack was surprisingly good. I had a 100 calories strawberry cheesecake greek yogurt with some grape-nut flakes. AWESOME snack! I also took some time to set alarms in my phone to remind me of when to eat. I need to start being on more of a schedule. I had a schedule before, but I got to where I had to eat so often in between meals and snacks because of my blood sugar - I was just really thrown off.
One of my goals for this week is to search for online support groups for people with reactive hypoglycemia (the official medical term is postprandial hypoglycemia) - it is the kind you get following gastric-bypass. If I can’t find any, then I will start by creating a group on facebook. I might be the only one in it, but like they said in “Field of Dreams” - if you build it, they will come!
Friday, June 5, 2015
This Phase is Coming to an End...
Yesterday was a very difficult day. I chose not to blog because I was in a very dark and emotional place. I had been fasting since dinner the night before. I got up and got to the doctor's office just fine. I was very anxious about the test. When they took me back, there were 3 nurses. The one that put the IV thingy in my arm was from a different part of the clinic and was being cross-trained. She didn't get it in very good. every time they had to take blood, they had to wiggle the little tub thingy around, move where my arm was, etc. It wasn't pleasant. They took blood many many times while I was there. 2 times before the food, then 2 tubs every 30 minutes for 300 minutes. A different nurse finally had to put another IV thingy in the other arm because they just couldn't get any more out of the first one. Fun fun fun!
My mixed meal test was interesting. I had 10 minutes to eat one cup of oatmeal, one cup of unsweetened applesauce, and one cup of whole milk. I added about half the milk to the oatmeal because I really don't like milk. I tried drinking some of it and it just wasn't a pretty sight. I actually finished most of the applesauce, most of the plain oatmeal, and maybe a third of the milk. Within the next 45 minutes I was feeling pretty bad - headache, couldn't focus my vision, dizzy. I had them do a finger prick. It was 137, so I was having those symptoms because it was going up. OK. After a while I was feeling pretty decent. Then I started feeling sleepy, light-headed, heavy. I had them do a finger prick again --- 74. This was a couple hours into this. I was so frustrated. Why wasn't it getting lower? Why was my body not showing what happens to me on a day to day basis. My sister went back to the hotel to get some work done. Another finger-prick --- 72. Feeling tired, frustrated, lost. All of this money and time spent to come across the country for an answer, and the doctor would look at this test and tell me I'm just not eating right. Devastation. Guilt. Fear that no one would believe me and they would think it is all in my mind. Why oh why was this happening? I got to the end, they did a final finger prick --- 70. Even though I was feeling low, I was not officially low. I would have had to drop into the 60s for it to be official.
I went back to the hotel, ate something, and went to sleep for a while. I woke up and I had dropped to 67. Stupid stupid stupid body. I went to the lobby with my phone. I ate cheesecake and drank a latte. I cried. I downloaded apps to use the messenger. I could call my family at home because I wouldn't be able to talk because of crying. I sent my kids, my parents, and some very good friends messages using one of the great new apps I downloaded so they knew that I loved them -- even in the darkness that surrounded me. One of the ladies I had chatted with the morning before stopped to make sure I was ok. God was looking out for me. I got some dinner. Went back to the room and ate. I started feeling better. More like myself. I wrote out some things to talk to the doctor about. I got input from my hubby, my mom, and my sister. I put it all aside and started crocheting a granny square for my son's blanket. My sister and I talked and laughed. I didn't sleep well, but that was ok.
I got up this morning and once again tried to eat ALL of the carbs and protein the nutritionist suggested. Nope. Didn't happen. I re-wrote my questions for the doctor in a notebook and left room for what she wanted me to do. I felt good about the going to the appointment, but I was still very anxious. It was time to go. With notebook in hand, I was prepared. She came into the room, and she was very pleased with my test results. I let her know that my body doesn't always react the same way to the same food, and that I have days that I stay in the low 70s/high 60s no matter what I eat. Stress and activity plays a big roll in my blood sugar dropping. I told her I can't eat as much food as the nutritionist recommended. So here is the plan:
* I will start on Acarbose (a prescription med that I tried twice before). In 3 weeks I will titrate up to a higher dose. Then again in another 3 weeks. And so on until I either reach a dose that helps me or I get to the highest dose and it just doesn't help.
* I will contact the nutritionist I saw here via the portal for suggestions since I cannot fit that much food in my little pouch.
* I will start walking in the mornings before I eat since my blood sugar doesn't drop prior to eating.
* I will start correcting when I get below 70 instead of 75 so my body will get used to feeling that low and knowing it's ok.
* I will go back to the endo in NC for her to monitor my progress. If, after all of this, my blood sugar continues to drop, the doc in NC will contact the doc at Mayo to revisit the surgery option or get advice on other possibilities.
It wasn't exactly what I was hoping. I feel good about having the plan in place, though. Ultimately, it would be great not to have to have another surgery, especially since it is so risky. I guess the part that I don't like it that it could be another 6 months of monkeying around. Or longer. Then again, we might find the magic combo of that med and carb intake.
My sister and I leave tomorrow morning to go to CA. I will be staying with my parents for a little while before returning home. On to the next phase of my journey....
My mixed meal test was interesting. I had 10 minutes to eat one cup of oatmeal, one cup of unsweetened applesauce, and one cup of whole milk. I added about half the milk to the oatmeal because I really don't like milk. I tried drinking some of it and it just wasn't a pretty sight. I actually finished most of the applesauce, most of the plain oatmeal, and maybe a third of the milk. Within the next 45 minutes I was feeling pretty bad - headache, couldn't focus my vision, dizzy. I had them do a finger prick. It was 137, so I was having those symptoms because it was going up. OK. After a while I was feeling pretty decent. Then I started feeling sleepy, light-headed, heavy. I had them do a finger prick again --- 74. This was a couple hours into this. I was so frustrated. Why wasn't it getting lower? Why was my body not showing what happens to me on a day to day basis. My sister went back to the hotel to get some work done. Another finger-prick --- 72. Feeling tired, frustrated, lost. All of this money and time spent to come across the country for an answer, and the doctor would look at this test and tell me I'm just not eating right. Devastation. Guilt. Fear that no one would believe me and they would think it is all in my mind. Why oh why was this happening? I got to the end, they did a final finger prick --- 70. Even though I was feeling low, I was not officially low. I would have had to drop into the 60s for it to be official.
I went back to the hotel, ate something, and went to sleep for a while. I woke up and I had dropped to 67. Stupid stupid stupid body. I went to the lobby with my phone. I ate cheesecake and drank a latte. I cried. I downloaded apps to use the messenger. I could call my family at home because I wouldn't be able to talk because of crying. I sent my kids, my parents, and some very good friends messages using one of the great new apps I downloaded so they knew that I loved them -- even in the darkness that surrounded me. One of the ladies I had chatted with the morning before stopped to make sure I was ok. God was looking out for me. I got some dinner. Went back to the room and ate. I started feeling better. More like myself. I wrote out some things to talk to the doctor about. I got input from my hubby, my mom, and my sister. I put it all aside and started crocheting a granny square for my son's blanket. My sister and I talked and laughed. I didn't sleep well, but that was ok.
I got up this morning and once again tried to eat ALL of the carbs and protein the nutritionist suggested. Nope. Didn't happen. I re-wrote my questions for the doctor in a notebook and left room for what she wanted me to do. I felt good about the going to the appointment, but I was still very anxious. It was time to go. With notebook in hand, I was prepared. She came into the room, and she was very pleased with my test results. I let her know that my body doesn't always react the same way to the same food, and that I have days that I stay in the low 70s/high 60s no matter what I eat. Stress and activity plays a big roll in my blood sugar dropping. I told her I can't eat as much food as the nutritionist recommended. So here is the plan:
* I will start on Acarbose (a prescription med that I tried twice before). In 3 weeks I will titrate up to a higher dose. Then again in another 3 weeks. And so on until I either reach a dose that helps me or I get to the highest dose and it just doesn't help.
* I will contact the nutritionist I saw here via the portal for suggestions since I cannot fit that much food in my little pouch.
* I will start walking in the mornings before I eat since my blood sugar doesn't drop prior to eating.
* I will start correcting when I get below 70 instead of 75 so my body will get used to feeling that low and knowing it's ok.
* I will go back to the endo in NC for her to monitor my progress. If, after all of this, my blood sugar continues to drop, the doc in NC will contact the doc at Mayo to revisit the surgery option or get advice on other possibilities.
It wasn't exactly what I was hoping. I feel good about having the plan in place, though. Ultimately, it would be great not to have to have another surgery, especially since it is so risky. I guess the part that I don't like it that it could be another 6 months of monkeying around. Or longer. Then again, we might find the magic combo of that med and carb intake.
My sister and I leave tomorrow morning to go to CA. I will be staying with my parents for a little while before returning home. On to the next phase of my journey....
Wednesday, June 3, 2015
It's a New Day
Today is a new day. A new day with endless possibilities. I woke up with a better outlook. The things of yesterday are in the past, and moving forward is always better than looking back. Always.
I didn't have any appointments today, so I've done a lot of resting. This morning I went out to the lobby for breakfast, then sat on one of their couches crocheting. It was lovely to sit there listening to the music they had playing and talking with people as they stopped to see what I was creating. One of the ladies working in the restaurant area came over, I gave her my card so she could see more of my work, and now she calls me Cin. One lady stopped to chat, and she said that she didn't bring any of her craft supplies with her. I offered her some yarn and a hook. She said that she isn't able to work on things right now because of her illness and that she wouldn't feel complete until she was well enough to start again. I completely understand! She promised to chat more with me sometime. I look forward to that. Yesterday we met a lady who has been coming to the Mayo Clinic for 17 years and another lady who was being tested to be able to donate a kidney to her brother. There are some amazing stories here.
The people who work at the hotel, the clinic, and the hospital are great! They all go out of the way to help in any way they can. I was supposed to get plain oatmeal (not instant), whole milk, and unsweetened apple sauce for my mixed meal test in the morning. The people in the cafeteria at the hospital gave me the oatmeal, and we got the other items there as well. The directions for preparing it were really not clear, so I messaged the endocrinologist. She sent it to someone in the lab and let me know that they would contact me. They told me that they would provide everything for me! We almost spent $40 on a rental car just to get the oatmeal and applesauce! I am so blessed to be here with people who are so caring.
I've had a rough blood sugar day. It has been hanging out in the 70s which is an acceptable level, but it makes me feel so drained and my body feels too heavy to move. It has dropped below that a couple of times, too. I've corrected it 3 times today. I am thinking that trying to add more carbs like the nutritionist said was the norm for patients like me to manage their hypoglycemia just won't work for me. I'll keep trying, though. I've had a sore throat all day as well. Don't know if it is allergies, the dryness around here, or a cold starting. I've been taking benadryl, but it doesn't seem to help.
Tomorrow morning is my mixed meal test, as I said earlier. I have to eat the oatmeal and applesauce in a 10 minute time period and have blood tests every 30 minutes for at least 3 hours. I've done this test 2 other times. I know how it makes me feel, and I'm not looking forward to it. I understand why it needs to be done, and I know it is only a few hours. I just need to focus on that. The test is for a reason. It is worth it. It is ONLY a few hours. I can get through anything if I know it is only a little bit of time and it will pass. It WILL be ok. I can get through it. God is with me. I CAN get through it.
I didn't have any appointments today, so I've done a lot of resting. This morning I went out to the lobby for breakfast, then sat on one of their couches crocheting. It was lovely to sit there listening to the music they had playing and talking with people as they stopped to see what I was creating. One of the ladies working in the restaurant area came over, I gave her my card so she could see more of my work, and now she calls me Cin. One lady stopped to chat, and she said that she didn't bring any of her craft supplies with her. I offered her some yarn and a hook. She said that she isn't able to work on things right now because of her illness and that she wouldn't feel complete until she was well enough to start again. I completely understand! She promised to chat more with me sometime. I look forward to that. Yesterday we met a lady who has been coming to the Mayo Clinic for 17 years and another lady who was being tested to be able to donate a kidney to her brother. There are some amazing stories here.
The people who work at the hotel, the clinic, and the hospital are great! They all go out of the way to help in any way they can. I was supposed to get plain oatmeal (not instant), whole milk, and unsweetened apple sauce for my mixed meal test in the morning. The people in the cafeteria at the hospital gave me the oatmeal, and we got the other items there as well. The directions for preparing it were really not clear, so I messaged the endocrinologist. She sent it to someone in the lab and let me know that they would contact me. They told me that they would provide everything for me! We almost spent $40 on a rental car just to get the oatmeal and applesauce! I am so blessed to be here with people who are so caring.
I've had a rough blood sugar day. It has been hanging out in the 70s which is an acceptable level, but it makes me feel so drained and my body feels too heavy to move. It has dropped below that a couple of times, too. I've corrected it 3 times today. I am thinking that trying to add more carbs like the nutritionist said was the norm for patients like me to manage their hypoglycemia just won't work for me. I'll keep trying, though. I've had a sore throat all day as well. Don't know if it is allergies, the dryness around here, or a cold starting. I've been taking benadryl, but it doesn't seem to help.
Tomorrow morning is my mixed meal test, as I said earlier. I have to eat the oatmeal and applesauce in a 10 minute time period and have blood tests every 30 minutes for at least 3 hours. I've done this test 2 other times. I know how it makes me feel, and I'm not looking forward to it. I understand why it needs to be done, and I know it is only a few hours. I just need to focus on that. The test is for a reason. It is worth it. It is ONLY a few hours. I can get through anything if I know it is only a little bit of time and it will pass. It WILL be ok. I can get through it. God is with me. I CAN get through it.
Tuesday, June 2, 2015
Broken
The nutritionist. She said that I should be eating more carbs. So today I went out to the little restaurant ready to eat my carbs! I ordered a breakfast sandwich on a croissant. That would give me the carbs she suggested. YUM! I could only eat about 1/3 of it. So I went back to the room. I upped the carbs at snack time a bit. Lunch! I split a turkey blt with my sister. Only about half the carbs the nutritionist suggested, and I couldn't quite eat all of that. In the past I have not been successful with managing my blood sugar no matter what carb to protein ratio I use. In the last 2 years I've tried so many different formulas! I will keep trying.
After lunch, we took the shuttle over to the clinic, then got on the other shuttle to go to the hospital in Phoenix for my appointment with the surgeon. My blood sugar started dropping, so I was trying to fill out forms (which I have filled out several times now) and eat peanut butter crackers at the same time. I got called back and an assistant came in and had me explain the problem instead of just going from what my records said. That's great! But with my blood sugar being funky I couldn't form the words and make them come out of my mouth the right way. My sister was with me, and thankfully she jumped in to rescue me. With all of that done, the lady left the room and came back with the doctor. I was so hopeful that he would say let's do the surgery and fix this! Nope. He said he has only had one patient ever need to have a reversal of the gastric bypass due to hypoglycemia. ONE??? That's how rare this is. He wants to see what the results of the mixed foods test are and what the endocrinologist has to recommend on Friday. My 3rd mixed foods test. Oatmeal and applesauce this time. He also said that usually the hormones that are sending the wrong signals usually correct themselves 2 to 3 years after the gastric bypass. In September it will be my 3 year mark. I'm not getting warm fuzzies about any of this. The surgery is more invasive than the gastric bypass and pretty complicated. If I have it, they wouldn't be able to do it until the end of July. There is no guarantee that it will correct my problem. Lots to think about.
I am frustrated. I am drained. I am tired. I am broken.
Monday, June 1, 2015
Mayo Clinic
My first appointment at the Mayo Clinic was this morning. I don't know what I expected going in, really. Ideally, it would have been nice for the sky to open up for an angel to come down and reveal the answer to all of my health problems. In reality, we talked for a bit while the doctor worked on getting a full understanding of what is going on, what has already been tried, and where I stand at this point. My sister was with me to make sure that I didn't miss something. I was definitely not expecting to have to go through the same testing I have already done a few times. I guess I should have seen it coming, but I thought that is why I got all of my medical records to her. So I have a few more appointments scheduled. I got some general lab work done this morning. I go to a nutritionist this afternoon. During this week I will see a surgeon to see what his take is on my problem, and I also go in for yet another mixed food test. This time I get to (more like HAVE to) have 1 cup of oatmeal (not instant), 1 cup of milk (to be used to make the oatmeal), and 1 cup of unsweetened applesauce. I go back to the endocrinologist Friday morning for her final assessment She hasn't seen a case as extreme as mine, but she has seen patients experience low blood sugar after gastric bypass. She said that most of the time it can be controlled with diet. We shall see what happens next!
For now I am sitting at the hotel crocheting and watching TV. The hotel is nice, and the food in their restaurant good. The fridge is tiny. We brought our swim suits, but it's so hot we may not go out there! All there is to see are hills and cactus, but it is pretty. If I can remember, I will post some pics.
Thank you all for your continued prayers!
For now I am sitting at the hotel crocheting and watching TV. The hotel is nice, and the food in their restaurant good. The fridge is tiny. We brought our swim suits, but it's so hot we may not go out there! All there is to see are hills and cactus, but it is pretty. If I can remember, I will post some pics.
Thank you all for your continued prayers!
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