Toledo Talk

Newly diagnosed diabetes person seeks temporary mentor.

Looking for a temporary mentor that would be willing to help me get off to a good start with my new life as a diabetic. Seeking a male (I don't know if there is difference between males and females) that is properly maintaining themselves, AND IS DOING THEIR DARNEDEST to keep up with record keeping, AND EXERCISING to minimize or completely get off insulin injections.

I have doctors instructions (but he's not exactly on call for simple questions). I have spent the last 4 days researching the topic so I am somewhat technically proficient, but still not sure of day to day lifestyle. All of my instructions are based on a person that works 9-5, and I am a 3rd shifter (10:30pm - 6:30am), so my meals (and exercise routines) are in completely different times for testing and injections. Trust me, I mentioned this before I was discharged, and was told I would have to figure it out on my own by the medical professionals.

Nobody in the medical profession I was instructed by is diabetic, so they don't REALLY know THE LIFE OUTSIDE THE MANUAL.

I understand the diet and carb thing, but there still a bunch of unknowns.

It would be cool if I could find someone that I can call or email with questions for the first 90 days. Questions that only a person living the lifestyle would have answers to.

I don't want any personal/medical information posted on this post, so we will have to figure out how to contact each other initially if anyone is interested in helping.

Thanks!

created by GTVT on Mar 20, 2014 at 06:05:59 pm     Comments: 29

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I'm a type 2 and I'd be happy to share my story and help in any way I can.

I was diagnosed 3yrs ago. I was drinking water like crazy and peeing every 5 minutes. I had a SEVERE craving for sweets and was eating food like a horse yet I was loosing weight. My vision was getting fuzzy and I started to really feel like crap. I borrowed a buddies meter and checked my blood. His meter maxed out at 599, I was over max. Way over max.

I went to the ER that night and they gave me some insulin injection to get me down to a safe range. After that my Dr put me on metformin 1k mg twice a day. That and diet kept me in the 90-100 glucose range. That worked great for a couple of years and then I let my diet fall off a bit and my numbers climbed to 120ish, Not great, but tolerable.

Last summer I started drinking water like crazy again, and was eating like a horse yet losing weight. I hadn't checked my numbers in a while and when I started checking again I was in the mid 400's. I decided to see and Endo and he put my on 2 different types of insulin. BTW, my A1C was 12.5 on the first visit.

I went back in a month and with the insulin and a very strict diet my A1C was 7.5 and my glucose numbers were averaging 80-90. He cut my insulin doses in half and added Januvia to my regimen. (Januvia is expensive, frigg'n expensive! It doesn't do much either IMHO)

I went back 3 months later and he took me off of the fast acting insulin totally and cut the slow stuff down another half. My A1C was 4.9, almost too low.

I go back to see him in April. I'm telling him I'm stopping the Juniva, that crap is just way too damn expensive. I'm also hoping he'll take me off the insulin totally. My numbers are averaging in the 80's to low 90's.

Sticking to a diet SUCKS. No need to beat around the bush, it SUCKS!!! I am VERY good on my diet on weekdays, and pretty good on weekends.

My M-f diet is this.

Breakfast- 1 big bowl of oats sweetened with Truvia and sugar free maple syrup.

Lunch- Sandwich with some type of lunch meat (no mayo or anything, just meat and bread) and an apple. BTW Krogers has a white bread with half the carbs and calories.

Dinner is usually light, but sometime heavy (pizza, Boston Market, Chinese, or for light maybe a salad with egg and ham)

You have to cheat once in a whole or you'll cheat all the time IMHO. For instance I am eating like a hog at the church fish fries every Friday. 6-7 pieces of fish, fries, a roll and dessert. But I am very good the rest of the week and I use that knowledge that I get to cheat big time on Friday to be my motivation to be good. It's still hard though.

My opinion on a few things.
1. Go see an Endocrinologist. Family doctors are not specialist. I can recommend if you like.

2. if you take injections you can save money by using the needle more than once. Some may say not to, but I'm the only one using them and I use mine 4 times before I throw it out. I just injected through my t shirt and skipped the alcohol wipe too.

3. Finger pricker for testing blood. Again, I use my multiple times. Mine uses little cartridges that have 6 needle each and I use each needle well over 20 times each till it starts to hurt. I believe it's an accucheck multiclick.

Any other questions, just let me know. And again, everything above is my opinion.

posted by Erin on Mar 20, 2014 at 06:53:38 pm     #  

Of absolutely no use in the mentoring, but certainly sorry that you are faced with this challenge GTVT. Best of luck to you. I'll keep my ear open to resources.

posted by LetItBe on Mar 20, 2014 at 06:54:01 pm     #  

type one here. I'm on year 26 with the plague. it gets easier as time goes on

posted by upso on Mar 20, 2014 at 07:37:38 pm     #  

Thanks for replying everyone!

LetItBe: Hey, I'm 48, and for the way I was feeling, I thought the Doc. was going to tell me to get my affairs in order...

All things considered, found out all my vital organs are doing fine, and I don't have cancer.

The American Diabetes website is a pretty good source of info, to include meal planning.

Erin, thanks for the input!

I just got home tonight going over all the info and Dr's orders, find the decisions a bit daunting, especially when the hospital did BG tests before meals, and administered insulin AFTER meals, but when I check out, they tell me to administer the insulin BEFORE the meals when I do the pre-meal test. I asked the REPEATEDLY why test before eating and use that # for the injection after eating, it just didn't make sense, and they kept saying that is the way its done. Who am I to dispute it? So when I asked why THEY didn't follow their own procedures, the answer was they didn't have time.

So, here is the real answer. Nurses administer the insulin (also need a fellow nurse to co-sign the injection), nurses aids do the test. Some how for some reason when each nurse and nurses aids are assigned 4 patents, they can't be in the same room together to do the procedure correctly.

So I went in at high 300's, and I was discharged at 216, and I am now expected to get it to 100 on my own, with a work schedule that confused them. The biggest issue is they have me taking a long acting at the same time I'm supposed to take a short acting, and somehow not let the BG get to low, and if I have any questions call my Dr. that doesn't return phone calls and can't schedule me in for 2 weeks. Oh, and by the way, take this thing seriously cause I could kill myself.

UPSO: Sorry to hear about your type 1, but I am glad you have been able to keep up with it and maintain such a full and successful life!

So far (day 1 on my own) I don't think it will be to big an issue ONCE I figure out what to do and when. But the way the hospital left me with such confusing guidelines concerning my 3rd shift life, just leaves me without a stitch of confidence,but hey, what could possibly go wrong?

posted by GTVT on Mar 20, 2014 at 09:31:22 pm     #  

Hey upso, your still a diabetic kiddie then :) I just celebrated 29 years since diagnosis day back on the 12th.

GTVT, best of luck on this journey. I used to mentor kids when they were diagnosed type 1. And I hate to say it, but often times the advice I had to give them was exactly what the professionals told you, that a lot of dealing with it turns into trial and error and learning about your body. I never dealt with the third shift situation for this, but I would say that much of the advice you do receive will be applicable, just time shifted for you. My "morning" is 6-10am, yours on third shift may be 4-8pm. If you have detailed questions shoot me an email, its my name here at yahoo.com and I will respond back with what I can.

posted by apophistoledo on Mar 21, 2014 at 07:26:56 am     #  

GTVT: The hospital did not have a nutritionist sit with you? UUGH. I am 5 years in and still have issues with BS. Diabetes sucks! But, as apophistoledo said, it is a lot of trial and error.
As far as extending needle usage- I do do it but not for the lancet. Last April, I cut my thumb by the nail bed while filing my nails. Not sure how or when I did it but it began to swell on the side. To make a long story short, after two full rounds of antibiotic I ended up going to the ER at Flower. The DR. there asked if I was diabetic which I said "yes." She had my thumb x-rayed and an hour later came back in the room with another DR and informed me that I would have to be admitted. The infection was in the bone of my thumb. I ended up in the hospital 6 days, had surgery on my thumb and had a PIC line where I had to give myself IV antibiotics 2x a day for 6 weeks. I had a staph infection, which was resistant to several antibiotics, but was not MRSA.
IF you decide to re-use the lancet, make sure you wash your hands just prior to testing. Staph is everywhere and staph and diabetes do not mix! I was lucky that I did not lose my thumb.
I have been on Metformin for a few years. While in the hospital they put me on a insulin pen which was a mix of fast acting and long acting insulin twice a day. Before lunch, if needed, they would also give me short acting insulin. Funny thing about infections- they increase your BS big time. While your BS is high, that feeds the infection. Yes, lots of fun. Anyway, even with being in the hospital, having surgery, etc., etc., I felt the best I have felt in a long time. They actually got my BS down to 90 which I had never seen.
My current DR. decided to get me off insulin and put me on glipizide/metformin about a month ago. My BS has been at 350 waking for two weeks and I have been waking and sweating profusely along with having a migraine. Last Sunday, I told my BF that I felt I should go to the hospital so maybe they could reboot my blood sugar. I fell asleep at 7:30 pm, woke up starving at 4, ate cereal, fell asleep and woke at 7 am.- Not sweating, no headache, BS at 120. I then remembered that I had not taken my second glipizide/metformin pill. SO, I have gone back on short acting insulin and metformin all week and no BS issues, no headache, etc. I see my DR Thursday and will be requesting he put me back on the regimen I was on in the hospital. All this time, I fought insulin and I was not happy when the hospital docs put me on it. NOW, looking up side effects of certain drugs, and knowing how I felt several months ago, I would rather be on a med that has proven results for decades that also does not have a side effect list three pages long.
Also, trivial as it may seem, try to lower stress in your life. Some stress you have no control over, but other stress, like internally getting mad at someone for not picking up socks, doing dishes, making a shitty remark, etc., etc., can play havoc with your BS.
You may also want to contact your physician about hooking you up with a nutritionist/diabetes educator.
Good luck and let us know how you are doing.

posted by golddustwoman on Mar 21, 2014 at 11:57:45 am     #  

golddustwoman, good points there. Stress and illness do have the ability to impact your BS in amazing ways. Most often times it will increase it, which can make you feel worse, which makes you not want to follow your regimen, which makes it worse, and so on and so on.

I personally do not advocate reusing needles or lancets. I had infections in my fingers from doing that in the past. I've lost feeling in the tips of those fingers, so I say be extremely cautious if you go that route.

The meds and diet that you settle on are going to be highly individualized for you if you work closely with your medical professionals. As stated above, an endocrinologist will be best able to help you. Working with a dietician will aid in getting practical use of the carb counting system down (it never made sense to me when they introduced that years ago until i did a one-on-one with a dietician about it).

If you want an interesting read, geared towards type 1's who are looking at insulin pumps but still informative, check out "Thinking Like a Pancreas" by Gary Scheiner. If gets more into the nitty gritty of what insulin is and how it behaves within the body.

posted by apophistoledo on Mar 21, 2014 at 12:24:57 pm     #  

I will look into reading that apophistoledo. I've reused the pen needles when I have been too lazy to get more, but I am still freaked from the thumb incident. I also try to limit my intake of fake sugars. There have been studies showing that "diet" pop especially can make you fatter. From what I have read, the taste buds "tell" the brain something sweet is coming in. The brain then tells the pancreas to release insulin. When "sugar" is not found, the brain then tells the liver to put sugar into the blood stream. It just starts a whole BS fiasco and I have felt very hungry when I drink too much diet Pepsi. I now only have 1 to 1.5 cans a day. I use a little real sugar in my coffee with cream- hey, gotta have a little something!

posted by golddustwoman on Mar 21, 2014 at 01:17:21 pm     #  

Good point about stress influencing blood sugar. Another thing you may want to remember is exercise. I am not diabetic, but have family members who are. Many times a simple walk around the block will bring down high blood sugars.

Good luck to everyone controlling this disease. I know from watching family members how hard it can be. Hopefully, there will be a cure soon.

posted by renegade on Mar 21, 2014 at 02:20:49 pm     #  

Thanks for the input everyone!

Today I am busy setting up appointments and seeing what is covered by insurance and what isn't, trying to get a grip of out of pocket expenses along with trying to budget pretty steep co-pay.

This is my 1st medical issue EVER, so I don't have a lot of experience dealing with this. I'm probably being a bit too concerned about it, but I just don't want to find out I was spending a bunch of $ I didn't have to.

Last night after pricking myself and testing about 60 times I learned how inaccurate BC testers really are. For example, same testing machine (Kroger Brand), 3 strips, same drop of blood produced 3 different #'s with a 60 point range. Panicked and rushed to Walmart to purchase ReliOn brand with test strips. 3 strips, same drop of blood, 3 different #'s with a 50 point range. WTH?

Did some research, and the Fed health department allows the manufactures have an accuracy rate of + - 20 points. So, I suppose if I knew how to average the 3 different readings, it would fall within the accuracy range. I would think that if this is how we determine not only IF we need and injection, but HOW MUCH (all cost related info), it would be a weee bit more accurate.

So, didn't do any insulin last night, because I wasn't sure how much to take. Saw the Dr. this morning to explain my dilemma, and he wasn't to concerned and said just test once and go by that #, and in the end everything works out. Wow, if we could only get away with that in the mechanic world, However, he did give me a shiny new state of the art tester who's test strips cost a fortune and after 3 tests of the same drop of blood, is still 40 points off.

golddustwoman: Sorry to hear about the staff infection, BUT THANK YOU FOR MENTIONING IT! I will admit I was solely relying on the alcohol pads for the cleaning.

I have 2 pens (long / short acting) for now, but I am sure the Dr. will change that as needed.

apophistoledo: I am starting to think I'm probably stressing over nothing I can control and just let the process run its course. I would prefer to take command and develop a routine that becomes a habit, but that isn't in the cards right now.

Question: Is telling my brand new primary care physician that has treated me as if I was a long term patient of his, that I want to see a endocrinologist after 2 days out of the hospital a bit of a slap in the face to him? I would hate to tell him the reason I am doing something different than what he recommends is because I am seeing a specialist which trumps him, or is this normal protocol?

posted by GTVT on Mar 21, 2014 at 02:25:29 pm     #  

I have a GP right now and I am OK with that. It seems that the more research you do and the more questions you ask a doctor the more I am beginning to feel like Elaine on Seinfeld when she had a rash and there was a notation in her chart saying she was a "difficult patient." Seriously, doctors seem to take issue with that. Anyways, I have never been to an endocrinologist so I too would be interested in knowing the benefits of going to one.

posted by golddustwoman on Mar 21, 2014 at 02:38:58 pm     #  

If your doctor is really invested in your welfare they will listen to your request to see a specialist. I see me endo every 3 months, together we have narrowed my numbers down to an amazingly slim range (rarely ever outside of 100-130 range). The benefit of a specialist is that they are just that, specialist. By their nature a family doctor is usually a generalist, without the time to keep up on the latest research and advancements on all issues that their patients could possibly face.

At this stage, you are new into the D world. Your body is reacting to medications and hormones (insulin) it's never dealt with before. As you and your body learn and adapt it will change. That change may, if your type 2 or even the more recent type 1.5, even involve a decrease in insulin needs and with work a move onto just pills and diet. For many type 1, the mere idea of never needing insulin through injection or pump is no longer a dream due to the physiological reasons for being type 1.

posted by apophistoledo on Mar 21, 2014 at 02:47:46 pm     #  

If your doctor is really invested in your welfare they will listen to your request to see a specialist. I see me endo every 3 months, together we have narrowed my numbers down to an amazingly slim range (rarely ever outside of 100-130 range). The benefit of a specialist is that they are just that, specialist. By their nature a family doctor is usually a generalist, without the time to keep up on the latest research and advancements on all issues that their patients could possibly face.

At this stage, you are new into the D world. Your body is reacting to medications and hormones (insulin) it's never dealt with before. As you and your body learn and adapt it will change. That change may, if your type 2 or even the more recent type 1.5, even involve a decrease in insulin needs and with work a move onto just pills and diet. For many type 1, the mere idea of never needing insulin through injection or pump is no longer a dream due to the physiological reasons for being type 1.

posted by apophistoledo on Mar 21, 2014 at 02:47:47 pm     #  

Rant time....

To people out there who are not diabetic, please do not assume that all diabetics are type 2. You do this every time you say to one of us that we should change our diet, get more exercise, or anything similar. You are assuming that lifestyle choices presented us with what we are dealing with. Guess what, many of us who were diagnosed young had no choice. You are the clueless one who doesn't know the world we have lived in. Try growing up and not being able to enjoy the school parties the way other kids did because you could have the cookies and punch. Birthday party, great, but I can't have any of the cake or ice cream because of what it will do to me.

I was an active person in school, on sports teams and going to the gym. My weight was below average and I was still diabetic. As an adult my weight is still in the healthy range and I still work out, and I'm still diabetic.

Don't assume you know something because the media just says diabetes and fails to say they mean type 2. My diabetes(type 1) cannot be controlled through diet and pills. Exercise and diet help, but are nothing more than another tool to help out the insulin I still have to inject.

--rant over

posted by apophistoledo on Mar 21, 2014 at 02:53:30 pm     #  

Rant time....

To people out there who are not diabetic, please do not assume that all diabetics are type 2. You do this every time you say to one of us that we should change our diet, get more exercise, or anything similar. You are assuming that lifestyle choices presented us with what we are dealing with. Guess what, many of us who were diagnosed young had no choice. You are the clueless one who doesn't know the world we have lived in. Try growing up and not being able to enjoy the school parties the way other kids did because you could have the cookies and punch. Birthday party, great, but I can't have any of the cake or ice cream because of what it will do to me.

I was an active person in school, on sports teams and going to the gym. My weight was below average and I was still diabetic. As an adult my weight is still in the healthy range and I still work out, and I'm still diabetic.

Don't assume you know something because the media just says diabetes and fails to say they mean type 2. My diabetes(type 1) cannot be controlled through diet and pills. Exercise and diet help, but are nothing more than another tool to help out the insulin I still have to inject.

--rant over

posted by apophistoledo on Mar 21, 2014 at 02:53:33 pm     #  

And sorry for the double post.

posted by apophistoledo on Mar 21, 2014 at 02:54:00 pm     #  

Wow.

posted by justread on Mar 21, 2014 at 03:09:18 pm     #  

Just had gestational diabetes and what I learned was I needed to work with my body. I personally couldn't eat as much as they wanted me too and I didn't exercise at all...I really had no interest exercising while pregnant! I'm glad mine was short lived, but found it manageable. I basically ate the same foods everyday when I found out what worked for me.

posted by ajm00733 on Mar 21, 2014 at 03:13:13 pm     #  

golddustwoman: Thanks for the info on fake sugar, and you were reading my mind on the "difficult patient" perception, and that was one hilarious episode :-)

My Doc visited me at 3am when he admitted me, and was there at 9pm, 11pm, and 12:30am the following nights, so I think he generally cares. He gave me his personal cell phone, home phone, and the # where he teaches, and he told me to call him each and every time I test with the #'s. I don't know how common this is, but it tells me he cares.

posted by GTVT on Mar 21, 2014 at 03:26:45 pm     #  

apophistoledo - I think you could be my new hero! I can't imagine being a diabetic as a child. It is great that you have gained control and are active.
I have always been heavy and had gestational diabetes in 1993. I generally felt great- even at 5'5", 180 pounds. Five years ago, almost 6, Monday, Sept. 18 to be exact- I had the first of several migraines that would plague me for a week. My ex father-in-law passed a few weeks earlier and that was stressful. My whole life has been frankly and I will not bore you with details. Anyway I had migraines- up to 3-4 per day. I went to ER the following Monday and they thought it was sinus. Gave me Vicodin and antibiotics. Spent another week in bed. The following Saturday, I felt good and went to put on jeans I had worn prior to 9-18. They fell off. No joke. I got on a scale and I had lost 16 pounds in 2 weeks. Now, my stepfather and father both were Type 2 diabetics- probably for at least a decade prior to this incident. I knew about diabetes, helped cook for both of them, knew signs of low and high blood sugar, etc. They were always thirsty and hungry and running to the bathroom. I had none of those issues. NONE. By the time my birthday came around (Nov. 27), I had lost 62 pounds and was elated I could wear a size 2. Yep. From a solid size 14 to a 2. WooHoo! In January, my right foot and ankle went numb. I thought I twisted it or something. A couple weeks later, the numbness moved from the right to the left. Then, a week later, both feet and ankles. I honestly thought I had MS. Then is stopped. The following August, after both my father and stepfather passed away from kidney failure, I just felt like crap. Exhausted. AND I could not get rid of a nasty, albeit common female infection. Women know what I mean. I went to the DR., he did blood tests, and a week later, he told me I had diabetes. I was shocked. Like I said, I was not thirsty or hungry, actually I was not hungry at all! After we spoke about what had happened with the migraines and the weight loss, etc., he told me my immune system just gave in- probably due to chronic stress.
So, now that I have spent half the day bitching- I am still a size 2, still have trouble eating, and I am tired. I felt better at 180 pounds than I do now.
It is confusing, but I am not giving up. I want to feel good again so I am really trying to get a handle on the insulin/food paradigm.
Don't give up GTVT! And thanks for all of the info. from everyone. It helps, big time.

posted by golddustwoman on Mar 21, 2014 at 03:50:27 pm     #  

golddustwoman: Not going to give up, I just want to get started on a regiment. I'm feeling too darned good after spending years feeling lethargic, and my #'s aren't close to normal yet. I accomplished more today than would have taken me a week to do before.

posted by GTVT on Mar 21, 2014 at 04:36:15 pm     #  

I'd like to know how insulin helps type two cases, since type two happens when you become resistant to insulin in the first place.

posted by Wulf on Mar 25, 2014 at 09:34:34 am     #  

Wulf, I'm not an expert in type 2, but I can give a basic reasoning. You are correct that type 2 is really insulin resistance, unlike type 1 which is a failure to produce or severe reduction in insulin produced by the body. For a type 2, the use of insulin is to counter the resistance by increasing the amount that is in the body. Almost like a little helper so that between what the body produces and the extra you give it you overcome what is preventing it from working and thus lower the blood sugar levels. From my understanding, pills like metformin (sp?) don't increase insulin production, but lower the bodies resistance to insulin.

posted by apophistoledo on Mar 25, 2014 at 11:31:55 am     #  

I recommend you visit and become a regular at diabetesforums.com. You will meet all sorts of experienced folks who will be very happy to help you.

posted by marillion on Mar 25, 2014 at 05:49:17 pm     #  

I'm type 2 and went on insulin this last fall. The Endo thought that maybe my pancreas had stopped totally as my sugar went way off. Test showed that it was still working though. I was on a fast acting at meal times (10 units) and a slow acting once a day before bed (30 units).

I'm now only on the slow acting and that has been cut down to 10units a day. I hope to be off of it totally on my next visit in a month. The Endo isn't sure what happened, but all is good now and getting better. My 30 day glucose average is 85, maybe a bit lower even. I really want to quit Januvia. That crap is expensive and IMHO useless, a 10 point drop at most in glucose numbers.

posted by Erin on Mar 25, 2014 at 07:50:38 pm     #  

Erin, can you recommend an Endo or ones to stay away from?

posted by GTVT on Mar 25, 2014 at 08:59:12 pm     #  

http://edcc.net/

they are moving to one of the new buildings near the hospital on central at promedica pkwy

posted by Erin on Mar 27, 2014 at 05:43:29 pm     #  

GTVT,

I am also 48 and have been a type I diabetic for 32 years. Not sure how contact people privately on this site, but would be glad to assist you with any questions you have.

I agree with Erin's suggestion on an Endro. That is the practice I have been going to since 1991, back when they were part of Mercy and downtown, and are GREAT. I really recomend Dr. Brunner. While I have no desire to go on a pump, quite a few of their patients are on them. They have a couple dieiticans and CDE's on staff.

posted by jamesteroh on Mar 28, 2014 at 11:46:04 am     #  

"Not sure how contact people privately on this site ..."

View this page for instructions
- http://toledotalk.com/cgi-bin/tt.pl/sendpm

posted by jr on Mar 28, 2014 at 12:13:28 pm     #