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type 1 diabetic 17yrs and still cant control it
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Digm70 posted:
I first have to say I have recently got insurance(from the state)I havent had insurance since my onset.Everything has been OTC meds and from clinics with pay adjusted fees.I have had diabetes for 17yrs and I'm only partially better at controling it than when diagnosed.Actually I'm alot better than when diagnosed a record at Edmonds hospital in Wa my blood sugar levels were off the charts 1666.I had lost weight,very "hollow" looking I thought I messed around with the wrong girl.I had gone from 242lbs to 157lbs in a little under a year with no diets constantly peeing and constantly drinking(little did I know the drinking of reg Pepsi was adding to the problem).After my diagnoses of diabetes I've been trying to deal with it,hit and miss to say the least.I use the word "crash" for blood sugar level drop(anything under 60 for me)followed by a visit from paramedics.I'm blind in my rt eye(cataracts,retinopathy)constantly have seizures(esp with crashes)but now they are independant(occuring on their own)I know that everyone is different and injectable insulin will affect people differently but it would be nice if I had some sort of a guide to when bsl are this then take this amount.Meal planning for me is a joke I sometimes dont eat or eat WAY TO MUCH(dont take me to an A.Y.C.E. I'll eat everything including your plate).I'm 42,6ft'er,and180lbs my last A1C was 9.4 down from 10.6 in Sept and 14.8 in June(yes it is coming down but with no less than 28 crashes and 17 seizures since June)so no it is not under control.My question? Am I alone in this?Is this "normal" when trying to control bsl?Is there going to be unrepairable damage?My friends have been caring for me and their patience is wearing thin to many paramedic visits after crashes(it scares the hell outta them)my most recent crashes were today about 2 hrs ago and thursday,today 27 and on thursday 33 bsl.I just started taking GABAPENTIN for neuropathy and seizures.I have been a little down lately cause I cant control my diabetes and it is hitting hard on my friends(missing work to take care of me etc.)Any advice on getting a grip on this?Thanks Digm70
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mrscora01 responded:
You don't say much about your insulin regime. What insulins are you on? If you are a humalog/lantus type regime, what is your insulin to carb ratio (the amount of carb you eat per unit of insulin)? What is your insulin sensitivity factor (the number of points one unit of fast acting insulin will bring you down)? Do you count carbs? These are all things you can work out by testing a lot. Most people start with a 1:15 insulin to carb ratio. That means taking 1 unit of humalog for every 15 grams of carb. If when you test at the 2 hour mark, you are low, then you need to eat a bit more carb for that unit of insulin. If you are high, then you need to eat a bit less.

Nothing will work well until your basal rate is set correctly. To check this you need to do short periods of fasting (eg, skip breakfast and then test a lot) to see if your background insulin allows your sugar to rise, keeps you stable, or drops you. Once you have this worked out, you can work on the other ratios.

Good books to get to learn more are "Using Insulin" and "Think Like A Pancreas".

Hope this helps a bit. Feel free to ask a lot of questions.

Cora
T1 1966, Dialysis 2001, kidney transplant and pump 2002, pancreas transplant 2008
 
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nutrijoy responded:
Cora gave you some excellent advice. The books that she recommended are among the best for diabetics who use insulin. Here are some links on the Amazon site that you can use for shopping comparisons:
Using Insulin by John Walsh
Think Like A Pancreas by Gary Scheiner (Also available in an eBook version for the Kindle eReader)
Dr. Bernstein's Diabetes Solution online (free) chapters. The freebie chapters are from an older edition of his book but most of the information is still appropriate and well worth the read. Chap.7 (PDF version ), Chap.9 (PDF version ), and Chap.10 (PDF version ) will be particularly appropriate if you are still uncontrolled after 17 years.

Dr. Bernstein's Chapter 7: The Law of Small Numbers has proven to be especially useful to insulin users because it focuses on the use of small dosages. If a mistake is made, small insulin doses generally only result in small mistakes that are fairly easy to correct and/or adjust. In addition, the use of small doses more easily enables you to avoid or prevent serious hypo incidents. However, you must make corresponding modifications to your food choices and activity levels in order to be able to use small doses effectively. I would highly recommend that you educate yourself by doing some in-depth reading and applying some of the suggestions in Cora's post if you haven't been doing same already.
 
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auriga1 replied to nutrijoy's response:
I agree with what both of you have said.

Education is extremely beneficial.

If the problem is insurance and what they will pay for, the extra testing and smaller doses of insulin will not work. Insulin comes in two different packages: the vial or the pen. Then there are the syringes for the vial or the needles for the pen. These are both script only and are not cheap, especially if you have to pay out of pocket.

If his insurance covers all that he needs, the point is moot.

Cora's point about basal insulin is excellent. He needs to get to that point first. I had to experiment with my doctor's permission. I had to call his office every other day, to report my BS results and how much Lantus I was taking. We finally got to a point where we found the correct dosage.

He does need to make a commitment and eat right; not skip meals or eat way too much. Taking insulin and not eating is so dangerous.
 
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Digm70 replied to mrscora01's response:
Thanks for the response,as for the points you brought up I dont have the slightest idea.I haven't not been educated to these points.Insulin to carb ratio,sensitivity factor,cant test as much as I would like,on state assit and medical and they will cover only 50 test stips per month(what a joke)I only get $197 a month of which rent is $110(thank you roommates/friends).I'm on a "R" and Lantus regime(insurance wont cover the pen/solostar just the vial) sliding scale on the insulin but no set amount for "R"(which I think is your point), Lantus is now at 30 units of which I take at 8pm everyday.Dont see an endo/nutr for meal planning,cant drive due to license taken away (blindness)and with roomies at work and dealing with my issues cant take anymore time off to drive me to appointments.I walk 6 miles to my Dr's appointments(so at least I get a little exercise when I have appointments LOL)There is no readily accessible Diabetic clinics around my area everything is pretty far to walk(I shouldnt be walking as far as I do right now the neuropathy is killing me)I will look into the books that you and other people have responded with and I have been looking at various websites(I love the term "looking" esp with me,keeping the levity up LOL)That seems to be at the core of my issues is the basal rate, I'll work with my PCP and see if we can cut through some of this BS red tape(not blood sugar,the other BS) and see if the insurance company will cover a specialist. Its weird havent had insurance most of my life and since my onset and now that I have it I'm going through so much "stuff"(like to use a different "S" word here but lets keep this "G" or at least tv14 here)and in fighting between this,that and the other thing its almost a joke.Trying to get S.S.I/Disability been fighting with them for 4 months had to finally get a attorney had to quit my job due to seizures(Dr's orders I was a driver but my license was taken away from me so I couldnt get un-enjoyment they (un-enjoyment) told me to go to S.S.I/Dis and state assit.I was before my exit from work using walmarts' side kick tester and Seamar clinics to get my meds(the pay adjusted sliding scale with certain Dr's not to many speciallists)like I said earlier hit and miss(hadnt had a A1C in almost 2yrs until last June)I'm at the point now to where I'm "chasing" my numbers because of the low blood sugar levels I've been having I know thats not right but with limited resouces I would rather chase than what has been happening.I never take insulin w/o eating or checking my blood sugar levels I just dont know what to take and get confused when I go to bed at 10:30pm at 93 and wake up at 7am and I'm at 392 when I last ate at 5:30pm.I have heard about the "dawn effect" and know the liver dumps carbs(at night)but even that was hit and miss some times I'm high other times right on and at worse extremely low this has been with Lantus even(started Lantus at 20 units and now progressively up to 30 units)it still is a rollercoaster.I've looked up websites and webMD for meal planning and what to avoid as well as what to eat(high fiber foods and wheat grains,exchanges,carb in take,3 main meal plans and snacks throughout the day,low sodium,lots of water and I mean lots.Cut out lots of things including fast foods and processed food(ie tv dinners,breaded meats, sugar based cereals)and more importantly what I do eat fish,skinless chicken,and pork not some much of red meat but a little,tons of freebies like carrots and celery,salad with lite virgin olive oil based dressing and apples those I put in my snack menu.Yes education is key and I try to learn as much as possible but some of the brain damage I have already suffered I think is hindering me.I have to keep refering to your post to remember what you guys typed in but THANK YOU Mrs Cora01,Nutrijoy and Auriga1.I will look into the links provided cant really buy any books and there isn't a library for miles around here.THANK YOU guys once again DIGM70
 
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Digm70 replied to nutrijoy's response:
Thanks for the response I attached my response to all you guys who gave me info to MrsCora.Also thanks for the links and freebies extremely helpful.I dont eat like I described all the time esp now,cant really go anywhere.I use to walk a little each day from just a couple of blocks to now about a 1-3 miles each day(thats there and back combined)at different times each day(usually because of weather damn Seattle rain)so I'm not a couch potato.At 6ft and 180lbs I'm actually less in weight and waist size(242lbs and 34inch waist at 18,180lbs and 27in at 42)than high school.As for the not eating sometimes I'm so depressed I cant eat,even without eating I would throw-up or so nauseated I cant eat.Depressed cause I cant control or I see how my friends have that is he going to have an incident tonight look on their faces.Its the same when I would work and my co-workers wouldnt want to work with me for fear of working with the "diabetic".I'm giving diabetics a bad rap,but I know with control I can avoid these fears but even when I had a little better control I would still have an hypo incident and as soon as that happened everyones' thought processes changed.Worked at a company for 3yrs had no incidents for 1st 2 of those yrs(no low sugars)into the 3rd year had a low blood sugar event and everyones attitude changed I was avoided like I had the plague.Ironic I never missed a day of work in fact I had only missed 6 days of work total in 17yrs.The other healthy workers missed more time in one year go figure.I dont blame them,scares the hell outta me,lack of education on their part and I tried to explain to them and told them to look up stuff and educated themselves on diabetes(advice I should've followed up on as well).Even though some co-workers did and understood a little better I still was treated differently not in your face different but different never-the-less which led to many "oh you messed up this so we're gonna have to let you go" "since this is your 3rd offense" written documents,when other employees I found out much later were excused from this with much worse offenses.It's like I was late for work by 3mins cause of traffic or a accident write up,didnt clean out the van well enough write up,things like that 3rd write up sorry your gone got a paper trail to justify it.No un-joyment dont let the door hit you on the way out.Its like I've alway said this is something I wouldn't wish on my worst enemy.The reason why I don't have any children for fear I may pass it on to them.Hence probably the root of my depression.I know it's not all doom and gloom but I really do wish(and dont think I'm suicidal)if it is going to take me then do it quickly and with less pain than what I'm experiencing now esp with friends/family.I know they are there and show great support and understanding but it really hard on them as well and I really am trying to work this out but there are times when I do give up and give in to my "dark side of the force".Its like well I've been having low blood sugars(there goes the paramedics again) the iv in the arm the"do you know where you are?" " what your names is" I figure if I'm going to damage to myself might as well enjoy myself and eat.Thats the mentallity I SOMETIMES have and truthfully after having a MONSTER MEAL I feel alot better about myself usually followed with a nice dose of insulin and after those monster meals I've NEVER had a low blood-sugar usually drop to about 150-225 range go figure and thats with guess work.Like I said not trying to be doom and gloom but thats my way of thinking and I must stress this is sometimes usually after a series of hypo.I thank you guys for all the advice and knowledge and hopefully I'll be able to apply this in my everyday life,and lifestyle changes.Thanks once again Digm70
 
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Digm70 replied to auriga1's response:
I wont bother you with all the hub-bub you can read my messages through Nutrijoy and MrsCora01 they apply to you as well and maybe you can help and or relate or maybe not relate but you can see my way of thinking.Never-the-less thank you for your input I can not thank you guys enough for the insight.Wow under 500 characters a record for me:-).Thanks once again,Digm70
 
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Digm70 replied to mrscora01's response:
I thank you for your contribution to my(my and everyone elses)cause,my roommates "voted me off the island" as of Friday the 31st my next residence is going to be "Nickelsville"(a homeless area of Seattle named after mayor Nickels)I will probably die for it is not an environment for a diabetic if anyone else is reading this post I thank them too.After 3:00 pm tomorrow I will be homeless at least my roomies are going to give me a ride up there.I sincerely hope that these wont be my last messages I give to this community,but it will,now you can say I'm suicidal,I've let myself and friends down.When I get to "Nickelsville" I'm go to take 150 units of humilin r and follow with 100 units of lantus.Thank you guys once again God bless and I hope everyone controls their bloodsugar levels.Derrek Geoffrey Miller aka digm born 1970 to die 2013."Some times your the bug,sometimes your the windshield"
 
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Digm70 replied to nutrijoy's response:
please follow up on Coras' post,I'm sorry.Thank you digm70
 
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Digm70 replied to auriga1's response:
please follow on Coras' post thank you


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