Sure wish somebody had told me when I got diagnosed...

Dr Gary
By Dr GaryCA Latest Reply 2013-06-12 11:00:57 -0500
Started 2010-10-25 11:00:14 -0500

Hi!

It seems like I am running into lots of postings by newcomers to DC who just got diagnosed. Just an idea here, but I am wondering if some of you who have been striving-surviving-thriving would want to give a few words of advice and support.

So here goes: Thinking back to when you first received your diagnosis, what are the five (more or less) things that you wish someone had said to you, words of advice, any don't do's, any words of support that stuck with you.

Practical, emotional, spiritual.

And… anything that someone said to you that wasn't so helpful.

I am hoping that we can we can share some words that might help not only newly-diagnosed friends to get prepared for the road ahead, but also give a boost to those who are further ahead.

I am looking forward to hearing what anything you have to share. Thanks!


150 replies

Ladybug62501980
Ladybug62501980 2013-06-12 11:00:57 -0500 Report

What thing could look like in the future if you don't follow the diet they give you. Like pictures of other that didn't and have bad feet and sores that don't heal and so much more.

Lakeland
Lakeland 2013-01-10 15:07:44 -0600 Report

my situation was strange, I was searching for answers to pelvic pain, I had 2 laparoscopies & all my blood work was fine after being put on lupron, my next unialysis my sugar was 1000, no one said a thing. I then went blurry & my sugar at the Md's office was 550. I thought he'd give me insulin or something to drop that number, heck he wanted me in the hospital that night, when I said I wasn't going to the hospital, I had inlaws coming for a visit, he gave me metformin, I wish he would have told me that even with short walks & medication it was going to take me 3 weeks to get that number to normal.

I went back & looked over my old tests (I keep copies of my medical records) when I seem the urine sample was 1000, I called that dr & said why didn't you warn me about that number, he said in diabetics that happens, I said " I'm not diabetic". I went to my family doctor where I was told "don't eat any thing white. " that was my instuctions till I got into diabetes classes

my dad was diabetic so I thought I knew alot. I then got into diabetic classes & we went over food, they talked about potatoes & breads, portions & carbs, I got angry & told the instructor, you are either lying to me or you lied to my dad. they said so much has been learned about diabetes & the things had changed. One thing I'm so glad they told me was about the carbs, we are allowed to have 3 carb servings (1serving is 15 g of carbs) at each meal, so I pick my carb first, dessert, or pasta or bread, & build the rest of the meal around that. also if the carb is a high fiber carb, i.e 4 or 5 that makes the body work harder to break it down so I'll stay more full longer & I can deduct that number from the carbs, so

so as to your question I wish someone would have told me, about 2 weeks to get your numbers to normal, but diabetes is very controllable if you test & are willing to take a short walk, when I have had readings in the 200's a short walk can drop me down to 130. if you knew someone who had diabetes years ago, there is new & better informaiton now. once you onset numbers get normalized it's fairly easy to keep them close to normal.

I'm glad I took the classess.

just recently I was diagnosed with boarderline pneumonia & the doctor didn't tell me that steroids will spike my sugar, I had a reading of 330 and was scared. thanks you you folks here , your memebers told me that steroids would do that and when I called the pharmacy they told me the same thing. so I still don' know what meds can affect my blood sugar numbers.

Lakeland
Lakeland 2013-01-13 09:58:50 -0600 Report

I forgot to mention, when I went blurry my doctor couldn't tell me about my eyesight, if it would come back. when I seen a traffic light it looked like the color lit was in 6 circles, the large lighting in stores look like the were 12"deep.

my brother in law who's an eye doctor in another state told me when I get my eyes checked ask the doctor if they will change my lenses as my eyesight improves when my sugar comes down, the one I was at wouldn't do it. so I'm glad I didn't spend the money on eye glasses because now that my numbers are good I"m back to not needing glasses.

Dr Gary
Dr GaryCA 2013-01-11 19:51:55 -0600 Report

Hi Lakeland,

This is an amazing story. It sounds like you found out about your diabetes the roundabout way, but fortunately you found your way to treatment and to a class to get yourself educated. Thanks for shring this great information. I was reminded of how patience is a virtue when I read your post, including when controlling diabetes. And education is power. I was also reminded of how patients have to be thier own advocates, and help their healthcare professionals to do their jobs better.

Thanks a lot! Great to hear from you!

Gary

Nana_anna
Nana_anna 2013-01-08 11:01:15 -0600 Report

My five things were:
1. Knowing what my AC1 was, 2. Knowing about carbs, 3. How important it is to watch your blood sugar levels, and how to check for ketones, 4. What equipment was good to use, like pumps, 5. What insurance pays for what equipment, visiting the Dr. on a regular basis.

Tia Shirley
Tia Shirley 2013-01-07 23:02:05 -0600 Report

I was diagnosed with type 2 Diabetes several years ago. For so long I procrastinated in taking care of myself but I have now taken it on as a challenge I am going to conquer. I have found if you listen to your body and to your heart and pay attention to the blood sugars you can be healthier because you are getting better nutrition.

Dr Gary
Dr GaryCA 2013-01-08 21:34:37 -0600 Report

Hi Tia Shirley. It's great that you are taking control of your health and doing what you can to take excellent care of yourself, listening to your body, watching that blood sugar. Congratulations!

Natim
Natim 2013-01-08 01:33:47 -0600 Report

Hi Tia
That is so true, most people try to wish away the challenges they face in life and only to find out that they are actually trying to run away from their own shadow.
Taking charge of any challenge is the key.
I am sure you will find success in your quest to keep it under control and conquer it.
"It is very much possible and it is fullfiling once you master it"
all the best to your new found courage!

Natim
Natim 2013-01-07 01:41:05 -0600 Report

I personally learnt a lot of information through the community at DC, When I started interacting with members that have been managing diabetes for years it really helped me to realise that this is possible and a life long commitment which only needed me to change my lifestyle and live a normal life like anyone else.
NB! One should never allow BG management to control one` life but rather take control of it and leave life to the fullest.
" It is really a lifestyle change by accepting it, facing the brutal facts of one` present reality, nothing more, nothing less"

Dr Gary
Dr GaryCA 2013-01-07 22:04:24 -0600 Report

Natim, what a great testimonial to the value of connecting with other patients here on Diabetic Connect. Support is power!

cplcrash
cplcrash 2013-01-08 09:42:51 -0600 Report

With this Obama care who can afford to pay for high insurance rates and Dr bills and medicine. I need to have lasic surgery but can't afford it. I haven't been on any Diabetic meds for a while because I can't afford to see a doctor and meds. I had an Diabetic eye evaluation and vision is 20/80. I'll be totally blind before I can pay for this. My job doesn't have. Insurance

Dr Gary
Dr GaryCA 2013-01-08 21:31:32 -0600 Report

Hi cplcrash, I am so sorry to hear this. It is just a tragedy when people can't get the care that they need. Have you looked into getting help from an organization that serves people with diabetes? Have you gone on the website of www.needymeds.org to look at programs you might get help from. Have you talked to your doctor about patient assistance programs? You might have some options. I hope you won't give up.

jayabee52
jayabee52 2013-01-08 09:51:13 -0600 Report

Don't get me started on Obamacare! Our congress "bought a pig in a poke" when this monstrosity was enacted. I believe it really hurts those who it was supposedly enacted to help.

Natim
Natim 2013-01-07 01:34:21 -0600 Report

Hi Dr Gary

I wish the doctors spend a bit of time with their patients and explain a bit more of the possitives and helpful information about diabetes.
My Dr spent lest than 5 minutes to explain to me about what I need to do and scared me off by telling me to take the tablets he gave me for about a week and suggested that after a week he will recommend an insulin enjection.
This is for type2 and when I went for a second opinion I was told totally the opposite.
He did not even mention diet and exercise as the first option to try and see if I can control my BG before taking tabs.
I was only on tabs for about 3 months and when I learnt that I could control it by exercise and diet I was able to come off the tabs which make me believe that I could have done that from the biggining and not gone the tabs route at all.
NB! what I can advise the newly diagnosed ones is that one must have a possitive attitude and read and learn a lot about the condition as much as one can and join communities that discuss the subject on regular basis and stay updated.

Dr Gary
Dr GaryCA 2013-01-07 22:03:24 -0600 Report

Hey Natim!

Nice to meet you, and thanks a lot for checking in here. You bring up a really interesting point. Physicians can vary greatly from one to the next. Some don't want to take a lot of time taling to patients, they want to diagnosis, get the patient on meds, and move on to the next case. They are either too busy, or feel like patients may as well get started. Others are more willing to work with thier patients on alternatives. Training may play a role here, as well as personal philosophy.

That's why it is so often a good diea to get a second opinion on both the diagnosis and the suggested treatment. And I agree, a positive attitude helps a lot. And knowledge is power.

Stay in touch!

Gary

jim healthy
jim healthy 2013-01-06 13:44:01 -0600 Report

Hi, Dr. Gary … I wish more doctors told newly-diagnosed T2s and pre-diabetics that they have an excellent chance of completely reversing their diabetes by eliminating sugar, sodas and other refined carbs from their diet, along with getting some regular physical activity. Numerous clinical studies show this is possible. So why don't more doctors give patients the choice between drugs and lifestyle interventions? Jim Healthy

Dr Gary
Dr GaryCA 2013-01-07 21:56:13 -0600 Report

Hi Jim! Nice to meet you! I am actually a therapist and not a physician so I unfortuntely don't have anything very useful to say here. But this is an interesting question -- what we can control by a healthy lifestyle versus the role of medication.

jayabee52
jayabee52 2013-01-06 14:00:24 -0600 Report

Actually, Jim, that seems to be changing.

My girlfriend was Dx'd this summer with Diabetes Mellitus (DM) t 2. Dr didn't immediately give her a DM medication, like I was in 1995. I had and continue to encourage her to deal with it by eating right and exercising. Our relationship is no longer a romantic one, but we are still in touch regularly by phone.

Unfortunately she says she can not stomach the taste of vegetables and she wants to go back to the way she was eating. I predict that she will be on a DM medication before too long.

Because I am on DC nearly every day and monitor nearly all the new postings, I have noted that newly Dx'd PWDs are not immediately given Rxs for DM meds.

It may not be perfect in your opinion, but IMO it is a step in the right direction.

James

jim healthy
jim healthy 2013-01-06 14:06:29 -0600 Report

Hi, James … That's good news. I think it will have to change because of the heavy toll that T2 and its complications are having on Medicare and the healthcare systems of the world, in general. Hope this finds you well. Warm regards, Jim.

jayabee52
jayabee52 2013-01-06 14:12:46 -0600 Report

Unfortunately, Jim, I am just 1 lab report away from needing to go on hemodialysis again, and I took the labs this past Thurs. So any time next week I expect to get the call to go and get the toxic sludge pumped out of my blood vessels. Otherwise I am doing well. Thanks Jim for your concern.

gatp
gatp 2013-01-05 21:51:55 -0600 Report

After being diagnosed is not the time to educate on diabetes. Every kid should hear about it and every high school senior needs to know that binging on sweets could kill him some day. it should be part of the health course, like educating about STD's.

Dr Gary
Dr GaryCA 2013-01-07 21:44:15 -0600 Report

This is an excellent point. And in this age of super sized sodas, and increasing diabetes rates, this is informaiton that needs to be emphasized.

gatp
gatp 2013-01-05 21:48:20 -0600 Report

Long ago, when I developed low blood sugar which is a precursor to diabetes, I would like to have known how hard diabetes is instead of the palliative statements I received to my questions. I was always told that diabetes was a no brainer, there is a pill, blah, blah,blah. It is so much more than that. I feel I've been cheated of my life when I coulod have changed my ways 40 years ago and saved my pancreas.

Dr Gary
Dr GaryCA 2013-01-07 21:43:27 -0600 Report

Hi gatp, thanks a lot for checking in here. As I mentioned below, I have had hypoglycemia since high school and am doing the best I can to manage it. I haven't become diabetic yet. I am really careful about what I eat. I understand what you mean here.

Pynetree
Pynetree 2013-01-06 20:55:48 -0600 Report

..gatp, Is Low Blood Glucose a precurser to Diabetes…? I had never heard that.

jayabee52
jayabee52 2013-01-06 22:48:30 -0600 Report

constant hypos are often a precursor to full blown diabetes. My 2nd wife "Jem", told me that just before her pancreas became "exhausted" it produced a lot of insulin and she had hypos all the time.

I believe she identified herself as a t 2, but maybe she was really a type 1. She was additionally VERY "brittle". It would seem to fit with her Dx of Systemic Lupis Erithramosis (SLE "Lupis") where her body attacked the organs in her body as though they were foreign invaders.

I have heard other people who suffered hypoglycemia at the beginning say the same thing happened to them when their pancreas shut down.

Pynetree
Pynetree 2013-01-07 09:06:55 -0600 Report

I have a child (now 35 yrs.old) who was diagnosed as Hypoglycemic as a preteen. She still runs Low. Now she has a 10 yr. old son, just suffering a few fainting spells..most likely cause was LOW Blood Sugar, according to EMT, and then his Pediatrition.. So, just wondering, does this usually lead to Diabetes?
Also wondering if I was as a child..just never officially diagnosed!

Dr Gary
Dr GaryCA 2013-01-07 21:40:45 -0600 Report

Hi Pynetree, I also have hypoglycemia, diagnosed when I was in high school. I manage it through my diet, but I have to watch everything I eat, and when, and how much. It hasn't turned to diabetes at this point, but my doctor monitors it carefully. But both of my parents had Type II. We'll see what the future brings.

Blessed617
Blessed617 2010-11-06 22:25:27 -0500 Report

I would liked to have known now to properly test my blood. I was not aware that I could not just squeeze my finger to get more blood to come out. There is a proper way to get the blood to flow. I would liked to have known how to use the insulin pens when I was sent home with them so I would have known I needed needles on them to inject the insulin in me. I tried to get 38 units in and when the pen wouldn't depress any further I asked my husband, who also has diabetes, how to work the thing. I also was not told I had to prime the pen first. I would also still like to know when exactly is 2 hours after eating? Is it after the first bite, mid meal, or after I've finished eating? The very best advice I was given was by the diabetes educators. It is a process to change my eating habits and instead of making many drastic changes overnight that I need to do things as I'm comfortable. Too much radical change for me personally is not good. Some can handle it, but I need time and that is OK.

Dr Gary
Dr GaryCA 2010-11-07 08:28:58 -0600 Report

Hi!

Thanks for checking in. You have provided a great testimonial to the importance of getting informed by talking to an expert who can not only answer your question, but help you to develop a strategy that fits your lifestyle.

It seems to me that so often individuals who are newly diagnosed assume that they have to turn their lives inside out and upside down overnight. So often, this is a recipe for failure, along with frustration and fear. That's not the way to move forward on this journey.

So maybe the words of advice are: get informed and be patient with yourself. Find an approach that fits who you are. As I always say, you are still you!

Thanks again and please stay in touch with your firiends on Diabetic Connect!

sNerTs1
sNerTs1 2010-11-03 22:56:51 -0500 Report

My biggest thing and my personal motto since I have found out is "This is not going to control me, I am going to control it". It is easier to make yourself healthier than it is to sit and wallow in something that you "have". I find that if you think about it too much, you notice everything that CAN go wrong without even putting an eye on what you will be doing to make yourself healthier.

My starting A1C was 9.6 and in a short time I am down to 5.5 (Dec. 2008 to Oct. 2010) I take 1 500mg Metformin a day and watch my diet. Counseling was horrible for me so I read books and listened to my doctor.

I also found that not only exercise which I am horrible at sticking to, but keeping your spiritual side strong helps immensely. I meditate and relax my "being" on more stressful days.

Just listen to yourself, to your body and be good to who you are.

Swbtab03
Swbtab03 2010-11-07 09:10:21 -0600 Report

I do so well in many things, but exercise is my worst offender. I cannot just get up and go. See I do so much physical work at work I'm wiped when I get home. The thought of going on the treadmill which is right behind me in my office as I type this. I know I should but no motivation. Just do not know how to inspire myself to get on it lol.

candie1996
candie1996 2010-11-11 17:28:13 -0600 Report

i had know motivation for a long time until i went to see my dr. and now i walk for a hour in my neighborhood and eat lean crusines,fruits, no soda, no chips and my sugars run 103 in the morning 115 in the afternoon 98 in the evening and 157 at night.

candie1996
candie1996 2010-11-12 12:36:06 -0600 Report

Yes i have lost about 5lbs the last time i checked. I just bought a used tredmill and i use it when i don't want to go outside on bad days.

Dr Gary
Dr GaryCA 2010-11-13 19:23:02 -0600 Report

I am also a big treadmill fan. It is like a meditation for me. And we are certainly getting into treadmill weather, at least where I live. 5 pounds is a lot!

Gabby
GabbyPA 2010-11-07 09:13:49 -0600 Report

My dog has been my inspiration of late. I used to have two dogs, and they were a pain to walk, so we didn't. Now I have one and I walk her...and she reminds me every day that we need to go out. It helps us both.

Dr Gary
Dr GaryCA 2010-11-07 16:11:25 -0600 Report

I would just like to add that it seems to me that one key to exercise discipline is finding something that you reall enjoy. Gabby, the word "inspiration" seems to me to be the key. Inspiration trumps trying to do something that you don't like. I watch TV while I am on the treadmill, not inspiring like a dog, but it at least takes my mind off the repetition.

Gabby
GabbyPA 2010-11-07 18:47:06 -0600 Report

Yep, if you are inspired to do something you are more likely to carry it out. That is so true. What inspires me also is seeing results. Once those start popping up, I want to do more. That is a great motivation as well, but you do have to start somewhere. LOL

Gabby
GabbyPA 2010-11-04 08:05:38 -0500 Report

I really like what you share because it is so true that we forget that we are total humans and doctors only see us to treat our disease, not to help us in other areas. We have to take that upon ourselves and making sure your spiritual part is well fed and cared for is too often overlooked.

sNerTs1
sNerTs1 2010-11-04 11:57:52 -0500 Report

Thank you Gabby =) I hope it helps. I just hate that I have seen so many of my relatives lose so much waiting on the disease to do whatever instead of living and staying healthy from diet all the way to your innards. Its important!

I agree with Dr. Gary too, no matter how you get in touch with the depths of your being, just get there and understand what your body tells you, YOU are the only person who can control it.

Dr Gary
Dr GaryCA 2010-11-04 11:50:23 -0500 Report

I just wanted to jump in and say that totallly agree with the importance of staying in touch with your spiritiual side, no matter how you define it. Meditation, yoga, taking a walk in nature, spending time being with a friend, helping someone, praying... all of these activities can be spiritual in that they keep you connected with a sense that there is something beyond day to day experiences and challenges. Body, mind spirit. Thanks for taking the time to check in!

whitetigress
whitetigress 2010-11-02 14:10:39 -0500 Report

This is going to sound radically different from what most here are thinking. When I was first diagnosed (and that is what diabetes is to me, a diagnosis or a message from my body telling me to wake up and notice that something needs to change).

I refuse the label "diabetic". I am not an "I have" or "I am". If someone asks, I tell them, "I have been diagnosed". I know this sounds radical but almost immediately my BS dropped to close to normal. The diabetes educators were trying to get me to wrap it around my brain that now I am a diabetic. They thought I was in denial. I was not.

Would you all someone who has cancer a "canceretic"? You would never think of it … how insulting! Why should we be any different?

Keeping it "out there" instead of owning it, "I am" or "I have", or "my diabetes" is actually quite freeing because it is so easy to feel like a victim, instead, I faced the issue head on and I'm getting healthier because of it… :D I do not struggle with my body or fight with my body, but love myself even more … and I am gentle with myself even more. :D
- whitetigress

Blessed617
Blessed617 2010-11-06 21:39:38 -0500 Report

Excellent outlook and I agree with you wholeheartedly. I take 14 different medications a day and REFUSE to take *MY* medication. It is *THE* medication. I don't *HAVE* any diseases, but have symptoms. Like you said, when I put that label on it that makes it personal that is claiming it and well, that is just not the case for me because of my spiritual belief.

The point about the "canceratic" is interesting. It would be rude to say such a thing. Thanks for that interesting way to see it.

Dr Gary
Dr GaryCA 2010-11-02 16:34:14 -0500 Report

Hi!

You have a very interesting perspective. I always tell my clients: "You are not a diagnosis, you are not your medical condition. You are a unique, multi-dimensional individua." This helps them to not reduce themselves to a treatment plan, and not to allow others to do that either.

Congratulations for being empowered, for facing your diagnosis head on and doing what you need to do to stay healthy, but also staying focused on the big picture: you life!

Thanks a lot for your post!

Billi Grossman RD
Billi Grossman RD 2013-01-05 16:13:26 -0600 Report

As a dietitian, one of my mentors taught me to never say "Diabetic" but always refer to "people with Diabetes". Symantics can mean a great deal.

jayabee52
jayabee52 2013-01-06 02:19:19 -0600 Report

I have been quietly promoting that "PWD" designation for about 3 yrs now. I learned it somewhere in my CNA continuing education classes.

waricks
waricks 2010-11-02 04:34:38 -0500 Report

Hi everybody,

Today is my first day on DC and I am glad I found it. I sure do have a lot to learn. I wish Doctor would have been more informative about anything. When I went in to see her and told her about how I was feeling and all the things that were going on (Tired all the time, major thirst, visiting the bathroom all the time, tingling in my thigh) and that I wanted to be tested for diabetes, she kinda laughed and asked me if it ran in my family. I told her no and she said that it probably was not diabetes. I insisted on the testing and she had some lab work done. A few days later the nurse called me and told me I did have T2 and that the doc was calling in an Rx for me and that I need to be back for a follow up 4 weeks later. I am not one that can sit still not knowing what is going on so I got a meter and started testing myself a few times a day and I read "Diabetes for Dummies". The book helped but the testing is what gave me the biggest push to want to do better. I changed how I was eating and I lost 23 pounds before my next appt with the doc. I had a bunch of questions when I went in to see her and her answers were helpful but to be honest I was let down because I just thought that I would have much more information given to me without me having to ask. I have yet to have an A1c and I am wondering if I need to insist on one at my next appointment which is November 30th.

Anyway I do not mean to ramble - I am just glad to have found a place that I can learn from people that are on the same road as I am.

Thanks in advance for all you may teach me.

Bill

Swbtab03
Swbtab03 2010-11-07 09:18:29 -0600 Report

Wealth of resources here on this site, so keep looking here.
you can also go to
www.pharmacydiscountnetwork.com- really helps in saving on prescriptions too.
another one is www.simplesavingscard.com
You get a card and it helps reduce costs.
Like mentioned before find a local nutrition class for diabetics and they have a wealth of resources to help on free to low cost items.

Ginny in CO
Ginny in CO 2010-11-02 12:32:45 -0500 Report

Wow, as an RN for 33 years this is really depressing to find out how poorly diagnosis and education are being handled. Just for instance, when I had to recertify that I could use a glucometer in the hospital, the company rep was from UK. They don't start meds there routinely. You start education, changing your diet, exercise and go through the blood tests in SIX weeks before they start meds. Obviously some people may need some meds to get very high sugars down. Bill, I would really encourage you to get a new doc. The general public is probably more aware that diabetes is spreading widely and emerging in people who have no family history (moi).

New diabetics absolutely need classes, spread over several weeks at least, with good reference materials to take home. I have told new diabetics for decades that the information and changes can be overwhelming at first but it is because you are in learning phase. You will get to the point where most of it is so familiar, you are in what is referred to as 'thoughtless competence'. This applies to everything we learn, riding a bike, math, playing an instrument. The first learning phase is very uphill. Winston Churchill said something I like to keep in mind.

"If you are going through hell, keep going."

The psychological and emotional aspect of any new major diagnosis is HUGE. The doctors who understand this are the best. If you can't deal with that, even over time, you will have a much harder time of everything else. Many people get over the fear of needles before they can accept the diagnosis.

If you have access to counseling, use it. EAP programs would probably accept you (through your job, they are a bridge to get you over a hump and on to what ever you need from there). Check your ADA, the class instructors, your doctor, here.

Journal. You can do this with pencil and piece of paper but I recommend getting something a little nicer because you are likely to find it interesting to review - even decades from now. The key to journaling is being honest with yourself. It is mostly about fear. What are you afraid of most? Dieting, vision loss, amputation. Or everything. Try to verbalize what is in the nonverbal part of your brain. Am I going to be able to SEE my daughter on her wedding day? Will I lose my job? Most of these fears tend to dissipate just on rational consideration. Other emotions can also interfere, apathy, anger, bitterness, guilt, shame. Processing these barriers to acceptance is a challenge in itself. Keep in mind if you really work on the diet, exercise, monitoring and meds, you have a very reasonable chance of controlling the complications.

I've taken care of T 1 and 2 diabetics in their 70s and 80s that were doing as well or better than people without.

One thing I have to emphasize. IF you are still smoking, STOP.
Smoking and diabetes both cause the red blood cell sites that carry oxygen and carbon dioxide to get permanently taken over for the (2-3 month) life of the red blood cell by glucose and carbon monoxide. Hence the Hg A1C test. All smoke has carbon monoxide in it. That is how hooking up to a car exhaust kills. The carbon monoxide is high enough to take up too many sites on the red blood cells. Smoking tobacco is just slower and, as one doctor told a newly diagnosed 38 year old who refused to consider giving up his cigarettes: "Your choice is the smokes or your feet, keep smoking, you will lose an extremity." I don't like hyperbolic scare tactics, but that is actually something you could win a bet on.

Be informed and proactive, advocate for yourself.

Dr Gary
Dr GaryCA 2010-11-07 16:22:42 -0600 Report

Ginny,

I will join the others who had posted responses and agree with them -- some fantastic advice here. Of course, I have to second your advice on getting counseling, since that is my business. Sitting down with an objective, trained listener can really make a lot of difference for someone dealing with the emotions around a medical diagnosis. I work with a lot of Employee Assistance Programs -- ther are a great resource and so often underused.

And I love the journal idea. It's a great way to hit the fear factor head on by emptying all of those questions, fears, scary images, but also hopes and dreams onto the page. And further down the road, it's a great way to trace just how far you have come.

And education is another great antidote to fear. Flood the fear with facts, so that fill in the gaps in knowledge with more fear. Knowledge is power.

Thanks you!!!

waricks
waricks 2010-11-02 13:43:44 -0500 Report

Hi Ginny,
Thanks for the information you have given. (and thank you to Caliko and Dr. Gary also) I am actually stuck between a rock and a hard place. I have no insurance and have to pay all of these new expenses out of pocket. I am barely able to afford the testing supplies. My Doc is not by my choice because I have to go to the clinic that allows me to pay by a sliding scale for the visits, which does not include meds or labs - I still have to pay them in full. I am lucky so far that my meds are all generic and only cost me $12 a month. I want to be able to take some classes and get my hands on some good reading materials but that is going to have to wait till I save up for the eye exam that I need that is not covered under the sliding scale.

It is funny that you mentioned journaling. I have been doing that. I have been a heavy guy (380) most of my adult life. I was up to the 380 mark six months ago and knew it was time to take my weight seriously. I kinda messed around with diets and lost a little. When I finally got tired of my symptoms and went to the doc I was down to somewhere in the area of 360. I am not sure because the scale they had only went up to 350 but when the nurse put the weight way out on the end past the 350 mark the scale started to balance so we called it 360. When I went in to the doc for my follow up last month I was down to 337. (yeah!!! back on the readable area of the scale - that felt good!) Anyway a friend gave me a dieting journal. It is pretty much just blank pages and it has spaces for breakfast, lunch, dinner, excercise and a snake along with squares you can x off for glasses of water. It also has an area at the bottom of each page for notes. I have been using that since I was diagnosed and even keep my BG levels on it and how I am feeling at the bottom of the page. This has been a great tool for me.

Right now the best tool is how I feel. I think I have had the big D for a a long time, maybe two years. I was feeling super depressed every day. I never had energy, I felt like I was walking around in wet concrete that was up to my waist. I feel much better now - not perfect but I am getting there. The depression is still there some but that has a lot to do with my current life situation and I have to take that as it comes.

Thanks again everybody for your kind words and advice!

Bill

Blessed617
Blessed617 2010-11-06 22:32:01 -0500 Report

Check out "partnership for prescription assistance" for assistance with your medicines. They might even be able to assist you with getting your supplies. Contact the maker of your meter to see if they have a program for people without insurance. My mother-in-law used to get er supplies mailed to her for free from the makers of the Breeze meters. If there is a diabetes educator in your area they might be able to refer you to a company that provides such a service. The meters are easy to get but the strips are expensive.

Dr Gary
Dr GaryCA 2010-11-07 08:29:58 -0600 Report

Hi, thanks for providing this resource. I am always looking for ideas that I can pass on. Much appreciated!

CaliKo
CaliKo 2010-11-02 14:17:11 -0500 Report

PS Check around the site, there is some good information about low cost supplies etc. Also, the library is a good resource for information, and do check out the CDE classes through your hospital. At least ask what classes or literature might be available to those without insurance. CVS pharmacies are offering free A1c tests to diabetics Oct 25 through Nov 25: http://www.minuteclinic.com/freea1c/
Good Luck!

waricks
waricks 2010-11-03 00:21:18 -0500 Report

Thanks for the tip on looking for the low cost supplies. I have been getting books from the library, my wife has also found many cookbooks there. I am sorry to say that there are no minute clinics in my area. I am thinking abut getting on of the over the counter A1c kits and just going that way.

Thanks again!

CaliKo
CaliKo 2010-11-02 11:18:44 -0500 Report

Hi Bill, and welcome to the site. Congrats on being willing to work to improve your health. That is the single most important start for a T2 diabetic. The next thing is having the right primary care physician. You need someone who is very good with diabetics. I have an excellent internist that works for me, at least for now. Lots of people here on DC suggest an endocrinologist. I'm not sure I would keep a doctor that hasn't done an A1c. That's kind of like diabetes 101, you should know where you are starting, and then have another every 3 months the first year. After you are under good control, they may suggest every 6 months. The next thing you need, and your doctor should have referred you, is to get you into educational classes with a Certified Diabetes Educator. Most hospitals can help you find this. The classes will teach you what you need to know about diet, exercise, complications, meds and perhaps even have a support group. They will customize a meal plan for you. Sounds like you made a great start on your own, and that just puts you ahead of the game, but there's no substitute for a great team of professionals helping to guide you. Good luck, Karen

Dr Gary
Dr GaryCA 2010-11-02 11:01:38 -0500 Report

Hi Bill,

Thanks a lot for taking time to tell your story. Your experience is a reeally good example of the importance of being an empowered, educated medical consumer, getting informed, asking questions, speaking up. Your post also reminded me of why I get concerned that so many people don't know how to advocate for themselves and their families, and slip through the system until their condition has progressed to the point of more noticeable symptoms, or worse.

So, congratulations on on taking care of yourself in how you communicate with your physician and on your own. You really have achieved some major goals on your own.

I'm sorry to hear that you had to do so much of this on your own, however, and that you were provided a prescription but no education.

I am not a phjysician, but maybe others on DC can make recommendations about further testing. But I would encourage you to enlist your doctor as your partner in treating your diabetes, staying educated, asking questions, expecting answers.

Thanks again and please keep us posted!

jm327202
jm327202 2010-11-01 13:34:57 -0500 Report

Please vote for the Skinny Gene Project in the pepsi refresh every thing contest and help the Skinny Gene Project win $50,000 that will be used to fund Diabetes prevention nutrition classes, and community outreach programs that increase awareness about prediabetes. PLEASE TEXT 103793 to 73774 (P-E-P-S-I) or vote at http://www.refresheverything.com/preventdiabetes

Anonymous
Anonymous 2010-11-01 20:56:17 -0500 Report

I am irritated when someone comes in here and posts off topic messages which is essentially nothing more than an advertisement

theladyiscrazy
theladyiscrazy 2010-10-31 18:16:49 -0500 Report

Oh, another thing I wish they would have explained is the adjustment period your body needs to adjust to the new "normal" ranges for you. You are told about low blood sugar symptoms to watch out for; but not told that you can experience the same feelings when your blood sugar grows from 350 to 175, even though the 175 is good.

Blessed617
Blessed617 2010-11-06 21:49:28 -0500 Report

THANK YOU for this information! When my BS gets around 100 I feel weird.. It used to be around 120 I felt like that so it is going down. I thought it was high, but when I'd test it was not. I'm on prednisone which skyrockets my levels into the high 200s/low 300s if I'm not careful. Thank you again for this tidbit.

Dr Gary
Dr GaryCA 2010-11-01 12:31:10 -0500 Report

Thanks for the additional tip. Learning to be aware of the messages that your own body sends you, and then knowing how to interpret them, is important.

Brenda_B
Brenda_B 2010-10-30 16:04:31 -0500 Report

LOL I wish someone would have told me I was diabetic… much sooner.
My AC1 test were between 5 and 5.5 My morning fasting were no more than 115. It was the neuropathy pain in my feet/toes that made me crazy. My orthopedic kept telling me I was diabetic and convinced me to in for a 4-hour fasting test. Yes I'm diabetic. Blood surgar goes high(200 - 300) when I eat then come crashing back down in about 2-3 hours… I just wish I had learned before I did so much damange to my feet. And I hated the sick/shakes on the crash mode.
NEXT on my wish list is learning about high GI food. My doctor send me to a dietician who talked to me about a "diet"… word I TRULY HATE. But it alowed me to eat bread, pasta, etc. It was a diet to lose weight not to control crazy blood surgar reading. Top that with a doctor who told me I only need to test 2 times a day… WRONG. I need to test a lOT. Finally I am learning. I feel better… THANKS so much to this group!
Testing is the key to what your body is doing. Thanks so much for telling me what I suspected! I ate one slice of a Medium pizza the other day. BG reading went to 185… I can eat the topping but I can't eat the bread/crust… LOL no mater matter what dietician said.

snuggums3030
snuggums3030 2010-11-01 18:32:27 -0500 Report

Does this mean my kid can't eat pizza? I have a hard time finding out what she can and can't eat. I was told she can eat anything just have to add to her carbs ratio and adjust her insulin. I haven't talked with a dietitian at all about her diabetes.

3Jewels
3Jewels 2010-11-03 10:23:39 -0500 Report

We have talked to two dieticians since my son was diagnosed three months ago. They both told us the same thing, Type 1 can eat anything they want, you just have to cover for it. What they didn't tell us is that different foods affect people differently. One mom I talked to said her son couldn't touch pizza because it would raise his levels for days. We haven't found that to be true with my son. We were really frustrated with the medical field because every time you have a question about levels they don't have an answer because it could be stress, growth, etc. etc. Unfortunately, we are finding out that there isn't a clear cut answer to diabetes and the control of it. A very wise mother of two, Type 1 daughters told me, don't beat yourself up when the numbers aren't what you expect because every day is different, just adjust and keep moving ahead.

jim healthy
jim healthy 2013-01-06 14:02:55 -0600 Report

This "eat anything" is the standard advice, but it is actually dangerous. Why would you want to eat a food that spikes blood sugar and necessitates a big dose of insulin to bring those levels down? Insulin, like blood sugar, is highly inflammatory to the body. This inflammation is directly responsible for plaque-formation in blood vessels and raises the risk of heart attack, stoke and cardiovascular disease. Elevated blood sugar and insulin levels also accelelerate the aging and breakdown of tissues and organs by glycating ("cooking") them. (This is why people w diabetes can look much older than their chronological age.) T1s can reduce the amount of insulin they need by eliminating foods and beverages that spike blood sugar from their diet. Whether you're a T1 or T2, the less insulin the better. Jim Healthy

jim healthy
jim healthy 2013-01-07 14:24:05 -0600 Report

One final point: insulin doesn’t “magically” lower blood sugar. It does this in a very specific way: by sayi converting the excess blood sugar into fat (triglycerides) and sending it to the body’s fat cells for storage. Yes, insulin lowers blood sugar by making one fat – which anyone who has taken it for diabetes will attest. Taking insulin doesn’t address the underlying problem that causes Type 2 diabetes, which is insulin resistance. In fact, adding insulin to the system makes insulin resistance worse. So seeing insulin as the “solution” to Type 2 is wrong in so many ways. Adding insulin makes diabetes worse … adds to your weight … raises your risk of cardiovascular disease (heart attack and stroke) … increases the risk of cancer and Alzheimer’s … and damages your kidneys. And once you start taking insulin for Type 2 diabetes, it’s very difficult to get off of it. It’s a slippery slope you definitely don’t want to go down. Jim Healthy

jayabee52
jayabee52 2010-11-01 19:08:57 -0500 Report

Even if you get the OK from someone only her glucometer can tell you for sure what she can eat.

Test her BG# before she eats the pizza, then she eats 1 serving of pizza only (if it's a store bought pizza serving size will be on the nutritional information label - if at a pizza resturaunt ask the management what the serving size is {# of oz since slices can vary widely}) Then 2 hours after she takes her first bite, measure her BG# again to see how much the serving of pizza raised her BG.

Then you'll have an idea of how much insulin she'll have to take to cover for the pizza.

Brenda_B
Brenda_B 2010-11-01 20:46:09 -0500 Report

Jayabee Now that is the good answere! My meter tells ME what I can eat! And…Yes test before and after.

Brenda_B
Brenda_B 2010-11-01 18:55:31 -0500 Report

That is the tricky question. Everybody is different. And I think I'm a bit different than most. I NEED to test a LOT. It is only by testing I can figure out what I can eat. Example…Most people can eat sprouted whole wheat bread… but that raises my blood sugar as much a fluffy (empty) white bread… I Don't know why… I don't take insulin (yet)… and I can eat a little candy with out much BS change but one slice of bread is bad.
Oh and when I did see a dietician it was not a diabetic dietician. She gave me a diet to lose weight. Of course I didn't know the difference until a couple of months ago.
I have an appointment to see a diabetic doctor for the first time tomorrow. My Internist said I didn't need to see specialist. So for 5 years I have been just stumbling around.

Dr Gary
Dr GaryCA 2010-10-31 18:25:50 -0500 Report

Thanks for sharing your experience here. Getting educated, jumping all over your numbers, and figuring out how to best take care of yourself... great ideas. Each individual has to figure out their own unique path to staying healthy, and then stay on that path. Take care!