My Story

[skb]

My Diabetes Journey

My Diabetes story begins sometime in the year 2005 though my BG could have been out of whack much earlier. In those days, I used to undertake a trip into the deeper Indian forests in the summers every year. The forest ranges are located in central India around 1200-1500 km (about 900 miles) from Mumbai, and every year we drove both ways, to the chosen location. Out on the Indian highways I trust no one and do all the driving by myself, for hours at a time. Otherwise too, the trip involves a lot of sitting in the vehicle for most of the week or ten days.

When I returned from that annual trip, my right leg just froze up on me, from the calf upwards. The pain was attributed to a lot of sitting and ignored for some time, in the hope that it would resolve on its own. But it became excruciating with time and I could only walk with great difficulty. I'm very reluctant to meet doctors, but this time, I had to. The doctor I met thought I had DVT (Deep Vein Thrombosis) and a Doppler scan was done on my right leg. The scan confirmed circulatory problems but could not point out a thrombus. My Blood Panel showed BG readings of 125/157 (fasting/PP) but the doctor ignored it. Today I can safely say that I was suffering from neuropathic damage or PAD (peripheral arterial disease) brought on by my uncontrolled BG. Thankfully, that problem resolved in a couple of weeks and all was forgotten.

A few months after this episode, I started to experience a kind of drunken stupor at all odd times. In hindsight, I can recognize this as a Carb overload which can be experienced by any low carber. At night, I would often dream of a very old lady telling me that I had diabetes. I knew I was a high risk candidate as my father had died due to diabetic complications. Then, in 2007, I suffered from a serious bout of "allergic bronchitis". People in polluted Indian cities, often get throat infections with weather change and I was a text book example, falling sick with every weather change. This time the infection was so severe that I had difficulty talking. One of the most senior, recognized & awarded doctors in India happens to be a friend. I had sold him a house up in the hills which he visits to write text-books on medicine.

He checked my BG at his clinic and it was at 219 random. He made things "official" by diagnosing and labeling me as 'diabetic'. I was prescribed a steroid based inhaler for the bronchitis and a metformin + sulphonylureal combo pill for the diabetes. He gave me a pamphlet on "healthy eating" which predictably advised a very low fat – high carb diet, which I diligently followed. For the next 3 years things followed a very casual path, with me eating whatever I wanted because now I was taking pills. Sometimes I completely forgot to take my medicines and other times the pills would make me shake and sweat because I had not sufficiently covered them with a carby meal.

In 2010 I was sitting with my shooting coach at the range enjoying a couple of drinks when he asked me about my BG. It so happened that my fasting BG was 173 on that day. He chided me for being reckless with my health and gave me a verbal thrashing which had a good effect on me and put me in the direction of any how controlling my BG. I started walking between 7 – 11 km everyday, without missing a single day. That helped bring down the numbers a bit, but diet based control was still unknown to me. Then one fine day in August 2010 while doing a Google search on Diabetes, I ended up at a Diabetes Forum just like ours and registered as a Newbie there. These were pre Face Book days when forums were quite popular back then.

That forum had so many knowledgeable people who I would like to call my Gurus. They put me on the LCHF path and in 3 months my numbers were pure magic. However, the large number of experts meant that there were a lot of contrary opinions and hostility there. The Moderators kicked out most of the experts at regular intervals. From the members here, Shanny, Grammabear, xMenace and foxl  were there and they would know what I'm talking about.

Anyways, from thereon one thing led to another and I became my own living laboratory and performed countless n=1 experiments, which only confirmed all that these seniors were advising me. I read and read every site that I was referred to, and soon myself became a self-proclaimed "expert". I started to advise any diabetic I met. While some listened, some scoffed and some outright ridiculed what I had to say. So much so that I resolved that I would need to procure some sort of authority that gave me a right to advice. In 2012 I enrolled for an online course on Nutrition from UCLA-Berkeley and cleared it with flying colors. My Instructor towed the "official line" but was sympathetic to my LC views because of my Diabetes.

On the second forum (where most of us were members), I soon became a part of the Moderation team. I learned some of the forum back-end stuff there. As most of you know, there was a serious fallout the Moderation team had with the forum owners in late 2015 and we all walked out of there en-masse. There were 8 of us who left together but during the course of charting out our plan of action, 4 of them parted ways and the other 4 gave birth to The Diabetic Pub.

This is the story of my Diabetes journey, which I hope you liked. I would love if everyone shared their own Diabetes story. Once the thread is decently contributed to, we shall link it to our website & the Forum Home Page. 

[Shanny]

Sure brings back memories, skb! That last forum was humming along nicely until the gentleman who owned it sold out to some corporation in Canada, that immediately started interfering in our conversations. One specific owner/moderator (I think her name was Helen or Helene) was particularly offensive, and at least for me, led to boycott.

I'll get started putting together my story too . . .

[skb]

Helena from Vertical Scope.

[Shanny]

Yep - she's the one. Forgive me for saying it so bluntly, but she was a bit of a witch! 

[Shanny]

Several years ago I remember logging some elevated blood sugars - prob'ly on an annual blood test during an annual physical. I wasn't inclined to brush it off, but we were a little busy at the time, because DH had been scheduled for a full hip replacement, and planning for his convalescence took priority.

I remember our doc saying I was obviously diabetic, but I think my BG was running about 130 mg/dl, so I wasn't going to keel over any time soon. DH had his surgery in the fall of 2008 & we spent the next few months getting him back to top speed, and then I started dealing with the diabetes. My readings weren't horribly high, but I was definitely carb-sensitive, because after a particularly high-carb meal, I could usually be found fast asleep on the sofa.

Doc prescribed metformin & that was my only treatment for awhile, until I found the diabetes forum mentioned by skb, and learned about LCHF. It made perfect sense to me, so I undertook that way-of-eating, and stayed quite strict for the first few years. But my resolve eventually began to fail and I added back some carbs. After that, Doc added Lantus to keep me honest. I still take metformin & use the long-acting insulin, but I still need to tighten up my control with diet. 

My diabetes doubtless has an hereditary factor, because my mom developed it during her later years, and more recently I have discovered a cousin on Mom's side who is also an insulin-dependent diabetic.

[rocky]

This is a nice subject topic. My story may not be very interesting but I will collect my thoughts and write later.

[rocky]

I was posted in Saudi Arabia and in bad health from every angle. I was experiencing strange sensations in my legs and going frequently to pee. This was in 2015 somewhere in June I think. On my next trip back home I went to a doctor and he said I was Type 2 Diabetes patient. I was not aware of the Types and all that till I joined here. He gave me metformin pills and a meter and said my A1c was 9.3. Since I was taking a flight back to SA the same day, I forgot my meter. Upon landing I got very busy with work and forgot all about my diabetes.

May 2016 I was sitting idle doing Google search for Type 2 Diabetes and somehow I clicked on Diabetic Pub. I read a little and decided to join here. It's been good going since Day 1. I have lost my extra weight and my numbers are very stable, always in 2 digits. Last A1c was 5.1. Now I have stopped the daytime dose of metformin and am in much better health than when I started. Thank you, everyone for the help and support that you have given.       

[Carbcrazydog]

My story started with gestational diabetes. I was expecting my first child in 2012 and was warned that my sugar may rise in the second trimester as i have a genetic disposition to it. My father was a diabetic at 35 who refused to let us know for 10 more years. Uncontrolled diabetes plus smoking resulted in a fatal heart attack at 52. I freaked out when my sugar levels rose and the doctor wanted to put me on insulin as medications are not safe in pregnancy. I cried and cried- worst was the horror of testing 3-5 times a day as i was so freaked out of being hurt by the needle. I managed to control through diet but got obsessed by testing. By the time i delivered my first one, i was perfectly in shape coming out of the delivery room- for the first time in my life as i had been overweight since teens. I found the old forum and made a lot of friends there. Shanny, skb, grammaB are many from whom i have known there.

Post delivery i let my control slide till i saw a 200+ number 1 hour post meal and 160 at 2 hours. I was scared of dying early like my father and started exercising control. The forum also helped me become a better parent. I was convinced i was doing something wrong as i was not feeling "happy" or "ecstatic" post my kid. And everyone made me realize here that parenting is hard work and the initial years are tough where you feel like you barely manage to keep your head above water.

Just when things were streamlined, i realized i was unexpectedly pregnant again when my son was just 1.5 years. We decided to have the baby and that was the most exciting time for me on the forum. everyday on the fasting thread people would post their numbers and ask "is the baby here yet?". I felt so important that people across the world are waiting for my baby to be born.

I believe in blessings and i believe in goodness. I started with self pity that i was diagnosed so early and could not "enjoy food" like "normal people". I read a blog by some doctor who said diabetics do not have to follow a diet. They have to eat like normal people should in the first place. And that changed my perspective.

Now i think i am lucky to have got the warning signal that my dad did not before he turned a full fledged diabetic. I still worry about dying early and leaving my kids young but i know i cant predict the future- can only have the positives on my side.

[walkerwally1]

I hope this is not too long but I am also hopeful that anyone that is newly diagnosed or new to the idea of controlling your blood sugar with diet may learn from my experience.  I was diagnosed in 1993.  I had gone to the emergency room when I slipped and put a nail through my hand and my blood pressure was extremely high.  The doctor there wouldn't let me leave unless they could get my blood pressure down and when they did it was with the promise that I would see my doctor right away.  I had insurance but avoided going to a doctor before that with the idea that if it ain't broke why try to fix it and I did not feel broke.  Well, when the doctor ran tests he said that I did indeed have high blood pressure and also high cholesterol and "oh, you also have diabetes".  That was all at that time.  I got medication for my blood pressure and cholesterol and told to stay away from sugar.  For the next seven years I had at least four other doctors due to moving or changing insurance and my diabetes was never taken seriously.  I don't recall even having an A1c test.  Around 1999 I got a glucose meter only because I saw a One Touch at the pharmacy offered for free and bought my own strips.  I didn't have any idea what the numbers meant and didn't test much at all.  In 2001 My insurance was with Kaiser Permanente, a large HMO with their own facilities and doctors.  My doctor there was much more interested in my diabetes and did the testing and gave me prescriptions for Glipizide and Metformin.  They also gave me a prescription for a glucose meter and strips.  That was great but also NO instructions on using any of that or what the meter readings meant except that I should test once a day, no time given but that also occasionally I should test an hour after a meal and it should be under 180.  Straight from the ADA.  When I did test after a meal and my bg was over 300 I told my doctor and he just shrugged his shoulders.  So much for testing because what difference did it make ?  I also was sent to a diabetes education class and got all of the useless information that follows ADA guidelines and was told that a really good breakfast for a diabetic was whole wheat cereal, a banana and low fat milk.  And a good lunch was whole wheat bread, peanut butter and low sugar jelly.  Testing was not discussed except if you felt like you were too low.  But I knew that I was doing good because everyone told me so.  As long as my A1c was under 7% everything was great .  The problem with that is that your A1c is an average and didn't show the roller coaster of highs and lows.  Testing was discouraged and doctors were not interested in my readings, they only paid attention to A1c.  I retired in 2010 and no longer had Kaiser and started seeing a local doctor who also followed ADA guidelines and kept my prescriptions the same but was not very interested in my diabetes.  It was after seeing him for a couple of years my A1c started to go over 7% and his only comment was " you are starting to get in the diabetic range" whatever he meant with that but he also offered no solution.  At that time I thought that medication was the key to keeping my bg in line but he refused to change it.  At my next A1c it was 7.7% and that was when I decided that it was going to be up to me to do something.  After all of these years I finally started to do some research and the first place I went was the ADA.  According to their website they said that to start working on controlling your bg a good place to start was 45g of carbs/meal.  So my first breakfast was the good whole wheat cereal, banana and low fat milk.  Then I tested an hour after and got a 300mg/dl result.  So then I tried the good lunch of whole wheat bread, peanut butter and SF jelly( I mean it's sugar free so it has to be "free")  and tested again and it was over 350mg/dl.  I began to suspect that the ADA was not the right place to go for information.  I bought a book.  At my age I was more used to look for books to get information than the internet so I bought Blood Sugar 101 by Jenny Rhul.  This was the first time I got some good information on what diabetes is really about and what can be done to control it.  I also found a couple of forums and discovered a community of diabetics that had learned how to control their diabetes.  The forum that some people have mentioned had some very helpful people that guided me to learn how to control your bg with diet.  Keeping track of carbs is the key and testing is vital to learn how your body handles carbs.  I was able to stop the use of Glipizide and I have cut my Metformin use in half.  I have my goal set to maintaining my bg between 60-120 mg/dl and do that with my diet.  It has been 4 1/2 years since I started LCHF and it still works just fine.  Every one is different and you may be able to eat a lot more carbs than I can but that is where testing comes in.  You have to find what you can tolerate and work from there.  That is what Eat to Your Meter is about.  There is a lot of information on the internet and some of it is good and some of it is trash.  I think that hearing from people that are dealing with diabetes every day and learning from them is the best way to get information.  People here have experience and are happy to answer questions to help so don't hesitate to ask.

[Shanny]

One other thing I learned when I discovered diabetes forums, and it scared the bejesus out of me . . . uncontrolled diabetes can and usually does claim your vision. My vision has always been poor from the time I started school in 1951 and people finally realized I couldn't see. I wore thick heavy glasses from then on until I had cataract surgery in 2010 & they implanted intraocular lenses. Realizing that I could go blind was a major wake-up call for me.

[Tamagno]

Having retired from the opera stage, I found myself teaching at a private school where there was a beautiful weight room to which I had full access. I took full advantage of the facility and had for over ten years been there two hours a day, six days a week without fail.

I was marvelously fit and at the age of 60, regularly bench pressed well over my body weight, squatted for reps with over 400 lbs. and performed at least 60 chin ups among other things. I greatly enjoyed the strength as well as the ability to eat great amounts of absolutely everything I wanted.

At 5'11" with a 32" waist I'd gradually managed to increase my weight to 195 lbs. and could expect to add a pound or two of muscle each year. I was noted on campus for being "hopelessly robust" and fully intended to maintain this discipline for many years.

My habit for weigh-ins was to check the scale once a month or so. I'll not forget the day I checked and discovered I'd lost 8 lbs. I was not happy at the loss of so much hard-won mass.

Naturally, at the time I had no regular doctor, but found someone at a generally reputable practice. He, of course, ordered the usual routine blood panel, discovered glucose well over 300 and pronounced me with type 2 diabetes.

Additionally, he gave me the usual prescription for Metformin that initially didn't work and then suddenly seemed to except post prandial when glucose could easily go over 500 for a short while.

Unfortunately, my weight loss continued at an alarming rate and I began experiencing severe muscle spasms both of which sent me in search of specialists for relief.

So began a very long saga of doctors, hospitals and retirement. Eventually, it was discovered that not only was I GAD 65 positive, but excessively so. The several month period of good glucose had, in fact, been the "honeymoon" period of type 1 diabetes. That diagnosis was additionally confirmed by several bouts of DKA as well as severe weight loss. The terrible muscle spasming along with elevated GAD 65 produced a diagnosis of Stiff Person Syndrome which is a rare nerve disorder.

The six-year period following the original diagnosis is something of a blur of medications, insulin pumps and CGMs, canes, walkers and hospitals along with numerous comorbidities. Finally, at the age of 64 I was forced into retirement but outside of very erratic glucose thought I was pretty stable.

Finally, in the fall of that same year extreme difficulty swallowing produced a diagnosis of stage 3 esophageal cancer (a caution: cancers just love high glucose) that was followed by a long period of chemo, radiation and surgery to remove my cancerous esophagus and a third of my stomach. For eight months I "ate" through a feeding tube inserted in my intestines.

While it's taken over a year, seven surgeries and substantial physical and emotional travail, this little story has a happy ending. At present, even though I now weigh barely 115 lbs., I am cancer free and discover that it's absence has greatly improved glucose control. Although limited in physical capacity, I feel better than I have in years and look forward to continuing to do so.

Finally, I cannot thank this forum enough for the wonderful support and education it's members have provided through the all this time. It was here that I learned the benefits of low-carb eating which is something I wish was far more widely observed by endocrinologists and all diabetics. The kindness and caring evidenced here make this an exceptionally welcoming worldwide community where all are welcome to participate, learn, and most of all, get well!

[bigskygal]

I was diagnosed in Feb of 2012. My fbg was 243 with an A1c of 9.5%. Totally shocked! I had not done blood work for two years so it was sort of on me that the numbers were so high.

My late DH also had T2 diabetes. This was back in the 90's and there wasn't much info anywhere. His pcp put him on one unit of insulin a day. He refused to do his own shots so I had to poke him. He was not about to give up any food, ie his beloved tater tots or french bread. I don't even remember what his numbers were any more. Then he was down with congestive heart failure, followed by a 5-way heart bypass. It was during the lab work for the bypass they discovered he had Leukemia (AML). He was losing weight and his numbers came down some. After the chemo, his vision started getting really bad. He was working at the wood pile one day and some logs fell on his foot. He never showed me any damage and one day he took off his shoe and his foot was black! The surgeon took his leg at the knee. He said if he just did the foot he'd be taking more later. By now DH was practically blind. They gave him 6 months to live after the AML dx, but he lasted 18 months. I lost him in '97.

All that said, when I got my dx, I knew I wasn't going to go down that same road. I came home and went online and looked for forums and all the info I could find on how to control my diabetes. My pcp put me on metformin 1000mg a day. The Diabetes Educator fed me the typical ADA line. I bought Dr Bernstein's book Diabetes Solution and took it to heart. I joined a couple forums, but settled on the old one we came from as it seemed the best fit.

I went low carb/high fat about a week after dx and eventually added ketogenic into the mix. By June of 2012 my A1c was in the 5% club. I was very strict weighing, measuring, and logging everything I ate. After a while, I knew what was safe and what wasn't, so the logging tapered off. I went off the metformin in 2015 controlling with just diet alone. I have recently loosened up a bit, but keeping well in the lc/hf range.

My A1c was in the 4% range for a couple of years and my pcp decided I was "cured" of diabetes. Just recently he removed diabetes from my list of dx's. My latest A1c was 5.5% and he said he just couldn't call me diabetic any more. (Fool!) He told me I didn't need any dietary restrictions at all. I am in the process of looking for a new pcp!

In 2013 I was dx'd with breast cancer. It was early and small (probably thanks to my diet) but I opted for a double mastectomy (my Mom passed from breast cancer), so not taking any chances there. I didn't need radiation or chemo and this August will be the 5yr mark making me cancer free!!

[Shanny]

 

[skb]

My Blood Panel showed BG readings of 125/157 (fasting/PP) but the doctor ignored it.

Doc prescribed metformin & that was my only treatment for awhile, until I found the diabetes forum mentioned by skb, and learned about LCHF.

I went to a doctor and he said I was Type 2 Diabetes patient. I was not aware of the Types and all that till I joined here. He gave me metformin pills and a meter and said my A1c was 9.3.

Well, when the doctor ran tests he said that I did indeed have high blood pressure and also high cholesterol and "oh, you also have diabetes".

Additionally, he gave me the usual prescription for Metformin that initially didn't work and then suddenly seemed to except post prandial when glucose could easily go over 500 for a short while.

My pcp put me on metformin 1000mg a day. The Diabetes Educator fed me the typical ADA line.
My A1c was in the 4% range for a couple of years and my pcp decided I was "cured" of diabetes. Just recently he removed diabetes from my list of dx's. My latest A1c was 5.5% and he said he just couldn't call me diabetic any more. (Fool!) He told me I didn't need any dietary restrictions at all. I am in the process of looking for a new pcp!

The common denominator in all of the above is that though we give a lot of respect to doctors and their advice/opinion, sometimes it is found wanting, and lets us down.

[walkerwally1]

I personally blame the ADA for a lot of the problems.  Doctors follow ADA guidelines and in many cases they are required to.  I went to the ADA website when I first started to do research on how to do a better job of controlling my bg.  It only took one day and some testing to find out that everything I was seeing from the ADA was wrong.  Even with medication it was impossible to keep from going way too high following the ADA guidelines.  And yet doctors and so called diabetes educators for the most part follow these guidelines and assume that if you are not doing great then it must be because you don't do what they say.