I emailed my Diabetes Educator as I see her more often than I do with my dr. I wanted to see if I can email them the data I have collected since seeing her. I am hoping I can send it each week so they have it instead of waiting for October 28th and November 22nd. I am trying to prove that the MDI is just not working anymore. I’ve been doing MDI since I was diagnosed in 2006. My dr keeps changing the units and it will work then not. I went from 4 shots a day but using Humalog for meals and Lantus for bedtime and no corrections after meals to 2 shots a day on Humalog 75/25 mix as I was stressed out, bruised and frustrated and yet, it will work then not. I’ve been on a rollercoaster since being put on Humalog 75/25 mix. I want to simplify my life more by using a pump and have lower A1C and lower #s. But no, I have to get my A1C to 8% (which doesn’t make sense as each pump company says it will help lower your A1C), can show them I can count carbs (I’ve been counting carbs since 12/21/06 and I find it stupid I still have to show them that), After I have completed this, they will clear me for the pump. Um my reason for wanting to go onto the ump is so I can LOWER my A1C and IMPROVE my #s.
Do they have a procedure as to EXACTLY what you have to do to get prescribed a pump? Do you have to wait for a doctors approval to make changes to your dosages? Read the books “Think Like a Pancreas” and "Using Insulin’…They will give you insights asd to hahow insulin works in the body, and provide all sorts of tips and suggestions as to how to get in control. The doctor’s in your office do not hae any magical wands they wave to determine dosages… It is all based on scientific rules and formulas, which are explained in detail in the books or can be found online. I had never had such suggestions as detailed from any diabetic educators. I have learned more from my own research and the DOC ( Diabetic Online community than I have from many of the medical personnel that I worked with… and I however,was somewhat resistant to learn anything, as I was not willing to really see myself as a diabetic, and was really too scared to do anything, until I had the disease for over 25 years…My medical teams are now and has been, for the most part, kind, competent, and caring . Yet, diabetes is a condition that you have to take the bull by the horns: You are Your own science expiriment Do not be afraid to ask a LOT of questions:It is part of the “Scientific Method"c method” ( LOL) and will enpower, inform, and enlighten you
Do you have insurance so that you can see an endocrinologist if not already…If you have the data to back up that your current dosages are not working, What is the problem.? Before I got on the pump, I had to literally write down EVERYTHING for three months: Every morsel I ate, how much exercise i had,I show by my lalculations that I knew how to carb count, do pre- and post -prandial testing AND adjust bolusses, then send it in EVERY week for basal adjustment by the CDE./and endo. We worked together as a team, and armed with the info from the books, I was able to suggest to her basal rate changes from my trial and error. It as a tedious process , but I did get approved for the pump… I was told by the medical personnel at their office that not many of the diabetics went through the 3 month process, saying that they thought all the testing was too ominous,. I guess the conditions of getting a pump are stringent because thery want to make sure that the pumps are actually used to their best advantage and that the diabetics are up to the challenge… I am sure you are…the pump is great, and I would not give it up.
I can certainly understand your comcerns about bruising. from injections sites. When I went from once and twice a day dosages s from the old-school regimen ( I have been diabetic 42 years) to MDI and up to 8 shots a day, I started getting bruises, scarring and bumpy lumpies…More than enough reasons, in addtion to the better control, for me to get on the pump. I hope my suggestions help.
God Bless,
Brunetta
Ditto exactly on what Brunetta is saying below - those two books helped me alot when doing MDI - and when I did go onto the pump (against my endo’s wishes I might add) - it helped me understand how to use the juice of life aka insulin to my best advantage. Where I live here in Canada, we have a few provinces that have pump coverage, and in order to qualify you have to get your A1C below 8%. It can be done, I’m living proof of it, with MDI I was a 7%, and then when going onto pump, got down to as low as 5.8%. Just took a 5 month holiday from the pump and managed to keep my A1C at the same level, but alot of it had to do with the pump re-educating me on how to use insulin.
BTW, I use the pen needle to inject with - so the pen needles tend to be more fine - 32 gauge then the regular syringes - I guess it depends on what coverage your insurance provides to you - since I think pen needles are more expensive to use - but will help with having less injury to the areas you inject in (I inject in buttocks, backside, stomach, arms -rotatation, rotation, keeps me flexible in my old age ).
Anna from Diabetes1.org
Amy, I’m so sorry to hear this. What a mess. I did not have to prove MDI’s would/could not work for me. Do you have a Dr. willing to write the prescription? If you need, I’ll gladly come to your doctor’s appointment, to Medtronic or anything to help direct the process. I don’t understand all the hoops you must jump through. I was diagnosed, hospitalized for four days, Doctor wrote the prescription for a pump at my bedside saying you must go on the pump. Someone at church who worked at Medtronic offered to call and get me in touch with the people in the pump area. Long story short, I had only done MDIs (5-6 shots a day) one month before getting the pump. They (pump companies, diabetic educators, not doctors) have a guideline of one year on MDI’s I think, but with my age they waived it. I was eating a strick South Beach Diet which is better than the ADA’s diet, IMO, but it went smoothly. The only reason to make the process longer is to determine who is compliant and non-compliant with their self care, because a pump’s success is tied to the person’s ability to use it wisely, and they want to get it in the hands of people it will most likely help. It requires a lot of thinking and button pushing, but nothing you can’t master with time and becomes routine. Also, my diabetic educator was not good. Her room smelled like she was in DKA and gave horrible advise and possibly was on a power trip. I got my pump in spite of her. Let me know if I can help in some way. I would be willing to call the woman who originally helped me at Medtronic. If it is an insurance problem, I can’t help too much, but Medtronic does work with your insurance or lack thereof to the best of their ability. At the very least, you should be given a chance to try it. It might not be for you, but you should be able to try a pump.
So, four years ago this month, I was diagnosed. In October I started pumping. In November I started CGMS. I did have to show I had skills and determination. I made calls, I asked questions…mostly, can you help me?..How can you help me?..When will you help me? etc. Half squeaky wheel getting the grease, half a few good people’s compassion. I know this is the opposite of most people’s experience, but it proves there are truly no rules or laws about getting a pump, only recommendations that can be taken under consideration.
A pump isn’t a gold star you can earn…it is a tool to treat diabetes. It is a choice. Not quite a’ right,’ but close. The pump and CGMS don’t make diabetes less easy to take care of, but it makes it more discreet and immediate to respond to your blood sugars. I still check my BGs 8 X day. Change the infusion set every third day, which in my opinion is FAR less painful and troublesome as shots. The CGMS has more drama to inserting and takes a lot of patience to learn, but I only change it every 6 days and I have adjusted my lifestyle around these devices.
Think Like a Pancreas is a great book. It reads like Greek if you do not have a pump, but it becomes oh-so-clear afterwards.
I’ve been off-line with my busy schedule, and missed you at the last TC Meet up. It was a good time.
I’ll be cheering for you. Let me know if I can help.
I just want to cringe every time I read your posts! I agree that it doesn’t make sense that you have to get your A1c down below 8 before you are allowed to get a pump. Obviously what you are doing is not working and you need to do something different. I thought doctors were supposed to help people - every day that they are forcing you to live with high blood sugar is time off of your life and that is not right.
Not everyone can manage with one or two shots of Lantus or Levemir a day (or in your case, the mixed). I have 7 different basal rates per day because I have different needs throughout the day as a lot of us do - you can fine tune your basal rates much better with a pump and our basals our the foundation to our control. A lot of us also use different carb factors for different meals and it is a lot easier to let your pump remember that it is lunch time so you should be using a different carb factor. Why a doctor is not helping you get a tool that can help you manage better is beyond me.
I also agree that it is crazy that you have to prove you can carb count. I get that knowing carb counting helps get the most out of your pump. However, insulin shots can be dangerous if you don’t know how to do that properly and no one would withhold insulin from you if you don’t prove you can carb count.
The one thing that is critical in pumping is testing - not that it is not important with MDI, but if your pump or infusion set malfunctions and you don’t test and realize that, you can easily go into DKA. If you are someone that tests, they can figure that out by looking at your meter and that is the only thing in my mind that you should have to show that you are willing to do.
In your other blog post, I mentioned the person on another board that had to take the “how to pick out a pump class” at Joslin when she already had picked out which pump she wanted. Because of the run around that she was getting, she ended up asking her PCP to sign the paperwork and he agreed to do that. When I got my pump in June, I did not have an endo and I asked my PCP to sign the paperwork also. He was reluctant to do that but agreed to do it for me. I let him know that Animas provided the training and would help with any problems that I had and I would not need his assistance.
Animas did provide the training and they also signed me up for a Blood Sugar Management course to help fine tune the pump settings. I decided not to use that program because I have gastroparesis and it has been my experience that most people don’t get that so they would not be much help. I am sure that Minimed has similar programs to help you if you have a PCP that you could convince to sign the paperwork for you. You also have TuDiabetes to help with stuff you can’t figure out. With the Animas program, you send in your logs every day for a period of time for someone to look at and help get your rates adjusted.
The only disadvantage I had by going thru a PCP was that I did not like the infusion sets that were originally sent to me and then I ended up with a Teflon allergy. Animas will send you samples of different sets to try, but an endos office would have other brands giving you a larger selection to choose from.
Kelly that is what I have issues with. If I get it down to 8%, doesn’t that show them that the MDI is working?? I ate the # of carbs allowed last night and did 33 units of the Humalog 75/25 mix. My sugar level was high at dinner. I woke up to a sugar level of 230. I ate 46 grams of carbs this morning, and gave myself 28 units of the insulin. I am always experimenting what food combos are the best. Sometimes one combo will work for a while then have to switch. Ever since I was diagnosed it seems the dr only wants to increase the # of units instead of saying “well the humalog isn’t working lets try this one” or "lets see if the pump will work better. I have no issues with telling the little machine my bg level, or tell it I need this many units for this many carbs. I wouldn’t mind going on a CGM so the machine has more data than just my finger sticks. What I want is what I think will work best for me. I’ve dealt with Diabetes since 12/21/06. I have learned by trial and error, etc. When I moved back I told my dr at Joslin that doing 4 shots a day stresses me out and causes way too many bruises! I want to simplify my life a bit more. He was right on board with giving me Humalog 75/25 mix pen. But not so on board with the pump. the Humalog 75/25 mix pen does simplify my life but now I want tighter control, a bit more freedom and not be on a schedule like you have to be with the pen. I want to know its ok to wake up at 10am and have breakfast or if I feel hungry at 1pm I can eat lunch whereas they want me to have breakfast the same time each day (which can be impossible on some days) and eat lunch the same time a day, etc. I want to know that if I am still hungry after eating the number of carbs allowed I an eat a bit more and just take the correct amount of insulin to cover that. I’ve done MDI since the first day I was diagnosed and since becoming a type 1 last year from being LADA since the diagnosed date, my sugar levels haven’t come down that much. I know that the pump isn’t a cure but it does give you more flexibility than the MDI gives you. I rather change the infusion site every 3-6 days (depending on what is recommended) than to give myself 14 shots a week or when they switch me over to the Humalog/Lantus route which is 28 shots in a week. It seems too much. I know the machine will malfunction and can have the pens as a back up in case it does malfunction which is fine with me. My overall goal is to get my #s down, simplifying my life a bit more, and of course get that A1C down to where it should be. Right now I’ve been between 10% to 14% on MDI alone. When I was first diagnosed I was at 5%-7% but then I was LADA. The only time since being a type 1 that I was under 7% was last March when I first switched to the Humalog 75/25 mix pen. After a while the overall A1C has been 10% or 14%. I dont want to live with high blood sugar. I want to lower them. I can’t go to the gym unless my sugar level is under 250. I haven’t been to the gym in a few months because i can’t go. I do walk everywhere as I do not have my license yet. So I am getting exercise. But can’t lower the #s. I drink water whenever I can too. So something is not working and I’m fighting all I can to get something that will work. I know the pump will work as I’ve heard from lots of pumpers that they are blessed that they went on it and wished they went on it sooner. All I ask for is lets give it a try. I know it can change my life as I heard from other pumpers, I know it can help me reach my goal that I know I can reach from the pump.
So I am hoping when my Diabetes educator returns, I hope she and my dr can get on board and help me reach my goal and not make me feel that I’m not getting the help I know that I can get. I look at my numbers and see the # of carbs I eat and know I can’t lower that number or I bottom out (get lows). I know what I want, and I want to try the pump. And I will succeed on that pump and feel better # wise and health wise.
Hi Kelly,
Sheesh, I just went through hell in several endos’ offices getting a pump prescribed, though really, the thing that I think made the most difference in ease of maintaining and understanding what was going on and what worked, how, was DexCom. Even while MDI I could see what was happening lots easier.
I have not been through as many regimen changes prescribed by docs, I was given an insulin-to-carb ratio by an office long ago and pretty much still use it (though newly on the pump, just made a change after fasting a few days to watch (on the Dexcom cgm) how my basal rate was working). I used that same insulin-to-carb ratio over the years, even though I know that I took more units (the number that "worked) for various foods, and I knew at which meal times and which meals need that, which suggests I nee to fine-tune my carb ratios programmed into the pump.
Other than that though, I feel confused by your doc not working more closely with you to help you fine-tune your own control with MDI. And too, really, the continuous glucose monitor… as soon as I heard these were released, I knew I needed to have one – they have made a world of difference. I’ve had the Dex since last April, and immediately saw improvements just by watching my 14- and 30-day averages in my bg tester.
Have you considered a cgm?
Jojo I plan to email tonight and see if we can get me on a cgm while doing Mdi…if I can get a script from that and show them more data tthat the mdi isn’t working and must go on the pump ill be thrilled…but overall they like to change the units of insulin and not helping me find a better solution…I overall want to be on he pump.
An update, this is what she wrote to me “You can do either CGM or the pump but not together. Choose one and go with that decision—might actually be best to go with CGM first—you’d have to go to the class “Is the CGM for me?” class which is offered 2 x a month.” Yeesh, I have to take that class too??? I can take the one on the 20th as I already have an appt in the city on that day. Might as well take the class. I can email her the log Ive been keeping. Which is great news for me. So this Friday, I’ll send her a detailed email with the info. I am hoping I can get the CGM asap so they can find out whats going on between meals and checking BG. I am hoping I can get them on board to keep me on the CGM and get me on the pump. So, I am hoping I can get what is best for me.
Sounds like forward motion! I understand you can’t start both at once. They each have a long learning curve, but doable. What does she mean to choose one and go with that decision? Does this mean to start with one until you are good with the technology, and then add the other? From the moment I got T1 and had the pump and CGMS, I knew I wanted to go that way for myself and for the cutting edge CGMS trials…being a part of history, etc. The CGMS is a big ouch and more bruising. I rarely have bruising or discomfort with the MM infusion sets. Very comfortable to wear and insert. So if you are looking to be more comfortable, I’d choose the pump first. I’m excited for you no matter what you choose. Choices are good!
Bea, I’m going to do the cgm first so I can get use to something being in me for a few days plus its more info for them so I can go on the pump. At least I’m getting somewhere with my battle.
My pump was ordered for me when my A1c was 7 but it went to 8 right before I got it. Which did not take me long at all. My a1c now is 6.1 which is great but I am having some problems being on a pump too. Not to scare you off because I do reccommend one. I have gained 40lbs in 19months because the constant flow of insulin makes me feel hungry all the time. I just took off my pump off my pump out of frustration and told my husband I am never wearing it again. I will probably go back to it but I am just peeved. I use the U500 insulin in my pump. They have you go through training before you work your pump so they teach you how to carb count and I do reccommend calorie king book to have with you everywhere you go. Good luck!!
Cathy, I already have the Calorie book :). It is helpful when I am just not sure on something. I also have the at this not that restaurant guide book so I can make better choices in the places I eat. It doesn’t have the carbs but I can look in the calorie king book. If I gain weight, I do. I gained weight just doing my insulin regularly. I’ll go to the gym to be sure I maintain my weight and make sure that I stay healthy.