rstonepal
Well-Known Member
- Messages
- 57
- Location
- Mira Mesa, CA
- Type of diabetes
- Type 1
- Treatment type
- Pump
- Dislikes
- Diabetic Educators, people who do not listen, people who do not actively try to make their situation better, people who think I am in their textbook, people who think I am a standard T1D.
Last Thursday my mouth/jaw started aching. Within hours it looked as if I was a SciFi bad guy. My husband rushed me to ER where they told me I have something stuck in my saliva gland. It would come out eventually but would cause pain until it passed. Great, I can deal with that, the pain will leave. Because we had waited too long to have this looked at, it was very infected and because I am a diabetic, they wanted to keep me overnight. I agree with that. Happily, and oddly, my sugars were at their constant 110-120, right where I like them and have worked so hard to attain. My diabetes was doing great,,,AS IT ALWAYS DOES,,mostly. While down there in ER, I would take tiny units of insulin, mostly under 1 unit, just to keep it where I like it. I really do know my sugars. I had not eaten for 4 days by then and was living on milk. A very professional Doc came by, while my husband was present, and explained about my mouth and how to deal with it, he said it will come out on its own and I do not need surgery. I needed to stay for a bit longer for fluids and antibiotics. My husband went home,,and it started. A diabetic educator showed up and the very first thing she did was grab my pump. That is the fastest way outside of saying anything even remotely negative about my husband, that will set me off on an angry rampage. To send me right over the edge, all they have to do is,,,push buttons. The de (she does not deserve to be capped, neither did the other doctors and nurses, there I only interacted with a few folks who deserve their titles be capitalized) got on her soap box and started explaining how my settings are wrong on my pump. Oh yes, furious now. Instead of heading off in a youthful huff as I have done up until my 50s, I resigned myself to speak to these people as they are to me, idiot bugs with a very low iq. I don't care how many degrees they have, they have not lived inside my head for the last 51 years with diabetes. They have not had to learn how to weed out the nonsense and find what is perfect for me. They also have not had to fight the medical system to get the tools that have kept me alive and healthy. When the de was Captain Obvious and stated, "You have 13 basal rates set." Instead of being defensive and explaining myself, I said, yes I do, and waited. She looked like I slapped her since I did not offer any explanation. The next one that stopped her and almost got her punched, she freaked out that I have a basal for a few hours at .4. At 6:00-6:45 it changes to .45. At 6:45 until 8:00 it goes back to .4. This one made her head explode, as I knew it would. I was very mean because I knew this would happen and I know she cannot do a thing about it. It agitates des and endos very badly. She commented on it, followed with the standard, I am going to fix this because it does not need to be in there. To which she heard, oh no you won't. Why? Because it works for me, leave it alone. Now listen, that is the truth. It does not matter how furious I was, I could have been happily loopy, it should not matter, that is my pump and my life and I have it that way for a reason. She then grabbed my CGM and proceeded to tell me what a piece of junk it is and that I am not allowed to use it while in the hospital. Bet me. She summarily explained how my CGM does not work as I think it does, letting me know where my sugars are. All it does is show false numbers to me. I had not eaten for a few days by then and although I have insulin nirvana going on, I still need to eat or drink milk when I normally do, at meal time. I told the de my sugar was dropping, I showed her my CGM. It said 47. A nurse showed up and took a finger stick, she showed 50. That proved the de's point, the two numbers were so far off we had to trust the hospital glucoscan. umm, really? I was thinking, omg, I love my CGM even MORE! It had not been calibrated the previous night nor that morning. It was pretty much right on. I calibrated it at that time and my number stayed the same on my CGM. Because that waste of skin de's ego was on the line and she knows more than I ever could, she put a stop to me using my equipment. She wrote it on my bed, on my wall and logged it into my file, I am not allowed to use my pump nor CGM. bet me.
When the de first came to me, she told me she was also a diabetic. I guess it was an attempt at bonding. I don't care if her hair is blue, I don't want to know, I don't care about her at all. 2 hours later before she left, she was discussing my evil CGM with a different nurse and told her that she had worn one of these for a week to see what diabetics see. umm, am I missing something here?
It dawned on me afterwards, why I was so upset about her being negative about my CGM. I used to test my sugars using the Ames acid pills, urine and water. I knew as a child, there had to be a more exact way to know what my sugar is at. Doctors know this, why can't I? When CGMS came out, medical insurance saw it as experimental and unnecessary. They still see it as such and it is a tiring fight to get one and the supplies. I was lectured my whole life, fingerstick 3 times daily. That was always a problem, really, 3 times daily? What happens during those other hours? How does a healthy non human's body do it? And why 3? The answer used to be, and I heard this a lot, my sugars do not change that often nor that fast. bet me. I can go from either 30 to 300 in 30 minutes. I can also go the other way. I am and have always been considered a brittle and fragile diabetic, the weather affects my sugars. Endos would make me crazy, 3 times a day, no, I am not going to do that. Their bodies are checking constantly. I fingersticked every hour while I was awake. My fingertips turned hard like leather, I lost feeling in them, using touch screens was a nightmare and my fingertips were dark. We manipulated my last endo to get me one, and she messed that up too, but that was when the conspiracy theory was confirmed, doctors DID have a way to know exactly what number I was at! I went from 9.1 A1C to 5.9. I fought like a crazy person for this. All my emotions, hope and happiness were contained in this one item and it turned out to be exactly what I wanted and needed. If I was stranded in a hospital full of idiot medical staff, I would want my CGM, take my pump, don't touch the CGM. When the de started being negative, it hit me totally wrong because she is wrong. It may be that way for her, it is not that way for me, I need and use my CGM like my life depends on it.... The bottom line on this one, she frivolously dismissed something that is the most important part of my life.
She left after 2 hours. It was lunch time, I needed milk! Nope, only clear liquids because of my diabetes. My sugar went hypo. They ran in with that red snot in the toothpaste tube. Not just 1 tube, they gave me 4 double tubes. I also have delayed gastric emptying. That nasty stuff kicked the DGP into action and the stomach pain and vomiting started. A female doc showed up and told me we need to fix my diabetes, I am not allowed to use my equipment and had them write on my board, the reason why I was in there was to get my sugars in control. Oh wow,,,what? Really? How did that happen? What happened to my mouth? By now I am fit to be tied, they took away my CGM, my pump, electronically confined me to the bed, gave me the red goo that I have always gotten stomach cramps and comatose sugars from,,, I was not in the mood for additional stupidity. Oh yes, it got worse.
As I said, they gave me an overdose of red snot. I was cry begging to please do not make me take that, just give me 4 oz of whole milk. They SHOVED that **** down my throat, one nurse had to hold me down the other shot that stuff into my mouth. Then the idiots released me from liquids and lunch arrived. I told them A. I need to eat the food for my DGP, the pain was getting bad B. I cannot eat the food because they already sent me hyper. They said no they did not and made me eat. Once my room cleared out, I grabbed my CGM and pump and dosed. Although I did not have the exact reading from a fingerstick, I felt hyper and knew I was high. I cannot imagine how high my sugar would have gone if I had not been dosing at the same time. I was unaware, however, they had me on an insulin drip line. Oh no. Not only an insulin drip line but a dextrose drip line also. Who comes up with this bs? I had 5 different IV needles in my arms, today they hurt pretty bad but are healing. Every time a nurse came in, I would tell her I need insulin, my sugar is going to rise. The doc did not write orders, sorry chump, sucks to be you and just deal with it. I showed one of the nurses my CGM and it said,,,HIGH. I was over 400. They checked it and I was at 433. They gave me more insulin and that is when I found out I was getting insulin through the IV. I stopped dosing.
dr ping showed up. He told me I need surgery and because I am a diabetic, it will be in depth. They will cut me from chin to jaw hinge and take out the rock. Wait, what happened to the other guy? ping told me he was going to write up the orders, no food, no insulin, no carbs. I lost the fight. It hit me hard, I started crying and begging him to not do this. Please listen to me, I know what I need and what has to be done, please. He ran out of my room. 30 minutes later they transferred me off of that floor. Upstairs I heard my nurse in the hall discussing me and how I was transferred up there because I was uncooperative and ugly. No, I was ****** off, I was not in there for my diabetes and that is what they wanted to fix. Then, 2 different doctors telling me 2 different things within hours of each other? And by this time, my sugar was as they wanted it, out of control and bouncing around. I was getting the headache, the aches and the stomach issue. Because they were causing my sugars to be erratic, it proved the lady doc's concern, my diabetes was in jeopardy and that is why I was there. She told me ping is the best doc at the hospital and if he says I need surgery, I need surgery. Therefore, blah blah, start the cycle again, I am sick of hearing this by now. The rest of the day was filled with the same fight to stay sugar happy.
The next day, bright and early, I was messing with my mouth when an odd hard plastic feeling piece came out. It was hard but skin colored, oh I held onto that thing, I knew what it was, the young Doctor told me it would come out in a few days, he was right, who is the best doc now? We put it in a jar. I alerted anyone who would listen and happily showed it off to them. A few hours later they scheduled me for surgery. I panicked again and I rudely said, "My husband and I would like to wait on the surgery for a bit, I do not think I am ready for it." I did not mean to say it so rudely, but they were not listening. They did not hear that either. The lady doc showed up, discussed how badly I was doing with my diabetes, told me how to prep for surgery, told me I need to trust the doc, he knows what has to be done, and left. My mouth had stopped hurting and was doing the relief pain. The swelling had begun to subside and you could actually touch my skin without me screaming. My sugars were still bouncing between 20 and 500. At that time, it was high so the lady doc had them give me more insulin to bring down my sugars before 4:00 pm when I was set for surgery. I could only get out of the surgery if I spoke with ping. He would be here any moment. He was on his way. He just sent word,,,,6 hours later, at 3:00, he showed up. He looked at the rock and said yes, that is exactly what they saw and that is it. Keep in mind, this is a floater contractor surgeon. He does not get paid by the hospital and my insurance, he gets paid by me directly. Thus, we figure he was happy and that is why he mentioned me being a diabetic and having to have surgery. I will not say the word I am thinking right now. He then told me that the scar under my tongue will not heal pretty like the other side. I think I choked and spit. Really? I smiled and told him, I don't really ever look under my tongue so I really do not care what it looks like. He told me some people really get upset at how ugly it is and he can go in and do surgery to clean it up. Again,,,really? ping and the first male Doc were the only two who kept on track about why I was there. Everyone else went stupid crazy and I thought I was there for my diabetes.
I have been home for 2 days now. I am feeling much better, my sugars are right where they should be. My pump is full and my CGM is fully charged....Life is amazing!
The de started
When the de first came to me, she told me she was also a diabetic. I guess it was an attempt at bonding. I don't care if her hair is blue, I don't want to know, I don't care about her at all. 2 hours later before she left, she was discussing my evil CGM with a different nurse and told her that she had worn one of these for a week to see what diabetics see. umm, am I missing something here?
It dawned on me afterwards, why I was so upset about her being negative about my CGM. I used to test my sugars using the Ames acid pills, urine and water. I knew as a child, there had to be a more exact way to know what my sugar is at. Doctors know this, why can't I? When CGMS came out, medical insurance saw it as experimental and unnecessary. They still see it as such and it is a tiring fight to get one and the supplies. I was lectured my whole life, fingerstick 3 times daily. That was always a problem, really, 3 times daily? What happens during those other hours? How does a healthy non human's body do it? And why 3? The answer used to be, and I heard this a lot, my sugars do not change that often nor that fast. bet me. I can go from either 30 to 300 in 30 minutes. I can also go the other way. I am and have always been considered a brittle and fragile diabetic, the weather affects my sugars. Endos would make me crazy, 3 times a day, no, I am not going to do that. Their bodies are checking constantly. I fingersticked every hour while I was awake. My fingertips turned hard like leather, I lost feeling in them, using touch screens was a nightmare and my fingertips were dark. We manipulated my last endo to get me one, and she messed that up too, but that was when the conspiracy theory was confirmed, doctors DID have a way to know exactly what number I was at! I went from 9.1 A1C to 5.9. I fought like a crazy person for this. All my emotions, hope and happiness were contained in this one item and it turned out to be exactly what I wanted and needed. If I was stranded in a hospital full of idiot medical staff, I would want my CGM, take my pump, don't touch the CGM. When the de started being negative, it hit me totally wrong because she is wrong. It may be that way for her, it is not that way for me, I need and use my CGM like my life depends on it.... The bottom line on this one, she frivolously dismissed something that is the most important part of my life.
She left after 2 hours. It was lunch time, I needed milk! Nope, only clear liquids because of my diabetes. My sugar went hypo. They ran in with that red snot in the toothpaste tube. Not just 1 tube, they gave me 4 double tubes. I also have delayed gastric emptying. That nasty stuff kicked the DGP into action and the stomach pain and vomiting started. A female doc showed up and told me we need to fix my diabetes, I am not allowed to use my equipment and had them write on my board, the reason why I was in there was to get my sugars in control. Oh wow,,,what? Really? How did that happen? What happened to my mouth? By now I am fit to be tied, they took away my CGM, my pump, electronically confined me to the bed, gave me the red goo that I have always gotten stomach cramps and comatose sugars from,,, I was not in the mood for additional stupidity. Oh yes, it got worse.
As I said, they gave me an overdose of red snot. I was cry begging to please do not make me take that, just give me 4 oz of whole milk. They SHOVED that **** down my throat, one nurse had to hold me down the other shot that stuff into my mouth. Then the idiots released me from liquids and lunch arrived. I told them A. I need to eat the food for my DGP, the pain was getting bad B. I cannot eat the food because they already sent me hyper. They said no they did not and made me eat. Once my room cleared out, I grabbed my CGM and pump and dosed. Although I did not have the exact reading from a fingerstick, I felt hyper and knew I was high. I cannot imagine how high my sugar would have gone if I had not been dosing at the same time. I was unaware, however, they had me on an insulin drip line. Oh no. Not only an insulin drip line but a dextrose drip line also. Who comes up with this bs? I had 5 different IV needles in my arms, today they hurt pretty bad but are healing. Every time a nurse came in, I would tell her I need insulin, my sugar is going to rise. The doc did not write orders, sorry chump, sucks to be you and just deal with it. I showed one of the nurses my CGM and it said,,,HIGH. I was over 400. They checked it and I was at 433. They gave me more insulin and that is when I found out I was getting insulin through the IV. I stopped dosing.
dr ping showed up. He told me I need surgery and because I am a diabetic, it will be in depth. They will cut me from chin to jaw hinge and take out the rock. Wait, what happened to the other guy? ping told me he was going to write up the orders, no food, no insulin, no carbs. I lost the fight. It hit me hard, I started crying and begging him to not do this. Please listen to me, I know what I need and what has to be done, please. He ran out of my room. 30 minutes later they transferred me off of that floor. Upstairs I heard my nurse in the hall discussing me and how I was transferred up there because I was uncooperative and ugly. No, I was ****** off, I was not in there for my diabetes and that is what they wanted to fix. Then, 2 different doctors telling me 2 different things within hours of each other? And by this time, my sugar was as they wanted it, out of control and bouncing around. I was getting the headache, the aches and the stomach issue. Because they were causing my sugars to be erratic, it proved the lady doc's concern, my diabetes was in jeopardy and that is why I was there. She told me ping is the best doc at the hospital and if he says I need surgery, I need surgery. Therefore, blah blah, start the cycle again, I am sick of hearing this by now. The rest of the day was filled with the same fight to stay sugar happy.
The next day, bright and early, I was messing with my mouth when an odd hard plastic feeling piece came out. It was hard but skin colored, oh I held onto that thing, I knew what it was, the young Doctor told me it would come out in a few days, he was right, who is the best doc now? We put it in a jar. I alerted anyone who would listen and happily showed it off to them. A few hours later they scheduled me for surgery. I panicked again and I rudely said, "My husband and I would like to wait on the surgery for a bit, I do not think I am ready for it." I did not mean to say it so rudely, but they were not listening. They did not hear that either. The lady doc showed up, discussed how badly I was doing with my diabetes, told me how to prep for surgery, told me I need to trust the doc, he knows what has to be done, and left. My mouth had stopped hurting and was doing the relief pain. The swelling had begun to subside and you could actually touch my skin without me screaming. My sugars were still bouncing between 20 and 500. At that time, it was high so the lady doc had them give me more insulin to bring down my sugars before 4:00 pm when I was set for surgery. I could only get out of the surgery if I spoke with ping. He would be here any moment. He was on his way. He just sent word,,,,6 hours later, at 3:00, he showed up. He looked at the rock and said yes, that is exactly what they saw and that is it. Keep in mind, this is a floater contractor surgeon. He does not get paid by the hospital and my insurance, he gets paid by me directly. Thus, we figure he was happy and that is why he mentioned me being a diabetic and having to have surgery. I will not say the word I am thinking right now. He then told me that the scar under my tongue will not heal pretty like the other side. I think I choked and spit. Really? I smiled and told him, I don't really ever look under my tongue so I really do not care what it looks like. He told me some people really get upset at how ugly it is and he can go in and do surgery to clean it up. Again,,,really? ping and the first male Doc were the only two who kept on track about why I was there. Everyone else went stupid crazy and I thought I was there for my diabetes.
I have been home for 2 days now. I am feeling much better, my sugars are right where they should be. My pump is full and my CGM is fully charged....Life is amazing!
The de started