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The American Diabetes Association is encouraging those who suffer with this disease to publish pictures of themselves holding a sign that says “This is ____. #ThisIsDiabetes.” Here’s mine! 🙂
They’re hoping that the more people who out themselves publicly, the more attention we can bring to the dangers of this disease, since so many people (as many as 9 million in this country alone) are living with diabetes without even knowing it.
The problem is that this disease silently wrecks your entire body and the longer it goes undiagnosed and untreated, the higher the likelihood that complications will develop. I should know…I am suffering from several of those complications after a period of “diabetes denial.”
My Diabetes Story Starts with a Yeast Infection
I was in my mid-30’s when I went to the doctor for a persistent yeast infection. I had been suffering with those annoying symptoms off and on for a year or more. Every time the symptoms would start, I’d go out and buy another over the counter remedy, treat myself, and I’d experience relief for a short time before the symptoms began again.
Since I did have insurance at the time, I finally made an appointment with a doctor. I explained the issue and one of the first questions they asked me was,
“Do you have diabetes?”
I was surprised. I’d never heard the connection between yeast and diabetes before. On reflection, it made sense, given that yeast feeds on sugar and diabetes is the presence of excessive sugar in the bloodstream…but at the time, I was shocked. I was too young to have that disease. Sure, my dad had it and my mom’s mom had been struggling with it for years, but I was only 35!
“No, I don’t think so,” I replied.
“Well, let’s just check, if that’s okay,” the nurse said, as she prepared a finger stick. I shrugged my acquiescence and winced when she pricked my finger. She took the blood glucose meter with her when she left the room. A few minutes later, she returned with the doctor.
“It looks like you might have diabetes,” he said. And he showed me that the meter revealed my sugars were in the 200s.
“Well, I did have a burger, fries, and a Coke for lunch a little while ago,” I countered. I was definitely a meat-eater once upon a time. And I figured that carb-heavy meal could account for the high reading.
“I’d like to do an A1C test to be sure. This will show us where your sugars have been over the last three months. If today’s reading was just because of that meal, the A1C will show normal numbers.”
That sounded reasonable, I thought, so I agreed to allow them to draw blood. The doctor also wrote me a script for the prescription strength yeast infection medicine and told me they’d call me with the results of the A1C soon.
A couple days later, the nurse called to tell me my A1C was at an 11, which she explained was quite high and indicated that I did indeed have Type 2 Diabetes. She instructed me to get a blood glucose meter and start testing my sugars several times a day. The doctor prescribed metformin and scheduled a follow-up visit with me for three months out.
I was devastated. The emotional impact of this diagnosis was huge and overwhelming and I found myself crying repeatedly in the weeks and months that followed. I got the meter, started testing, started reading about how I should modify my diet, and took the medicine.
My Experience with Meds & Dietary Changes
The most common medication prescribed to anyone with a Type 2 diagnosis is metformin, which is supposed to help make the cells more responsive to insulin. In Type 2, insulin resistance is the primary issue, which causes the pancreas to release more insulin that simply doesn’t get utilized properly by the cells. In Type 1 diabetes, the pancreas isn’t producing insulin at all, and that’s why those with Type 1 must take insulin to stay alive.
Unfortunately, just like with most medications, there are side effects. The most common one associated with metformin seems to be diarrhea. Let me tell you, it really sucks to have seemingly unending diarrhea.
I radically changed my diet, dropping my carbs way back. I lost about 20 pounds in the first two months and then plateaued. Before my diagnosis, I had inched up to about 165 pounds, so at 5’2” I was nicely rounded, but I didn’t feel “fat.”
I also found myself starving most of the time, with no idea how to feel full on a low-carb diet. At the time, I was living in a cottage behind a friend’s house. This cottage didn’t have running water or a kitchen, so I had a microwave, a dorm-size fridge, an electric burner, and a toaster oven, along with a basin set up under a 2.5 gallon water jug as a sink.
It was difficult to cook a lot in this situation. I got by, but I was mostly heating up pre-prepared meals, which of course contain a lot of other crap, even if the carb count is low.
I kept testing every day, and when I would talk to people about my diabetes, I invariably got lots of suggestions. I wasn’t seeing much of a drop in my blood sugar numbers and I was getting frustrated. The well-meaning suggestions by friends and family began to grate on my nerves.
My brain started interpreting these suggestions as criticism and I started to feel like a failure because nothing I did seemed to be having a big enough effect on my blood sugar. I also repeatedly heard all the warnings about the complications of diabetes and I was filled with a pervasive, low-level anxiety. People meant well, but unfortunately too many people were chiming in and I was overwhelmed.
Diabetes Denial was Too Easy to Slip Into
After awhile, I gradually started testing less and less frequently. I wasn’t feeling sick, I wasn’t seeing any complications, and my brain convinced me that maybe my body had adapted to the higher sugar levels and so I didn’t need to work so hard to try to and lower them.
Somewhere in there, I quit my job to go freelance while I got my Master’s Degree. Unfortunately, that meant losing my health insurance. But I’d already stopped taking the metformin because the diarrhea was so bad and didn’t seem to be having much effect on the diabetes. So I figured, since I felt fine and didn’t need any prescriptions, I’d probably be okay without health insurance for a time.
I didn’t know how wrong I was. I spent a couple of years wallowing in this denial, while all my energy and attention focused on my Masters program. I didn’t watch what I was eating very much, and I wasn’t testing my blood sugars for months at a time.
Once I started my therapy practice, I had an epiphany that I couldn’t ethically help others face their demons if I was unwilling to deal with my own issues.
So I made a resolution to figure out how to see a doctor and start dealing with my disease. Unfortunately, I still didn’t have health insurance and couldn’t afford to get my own plan. I started looking for other options.
The Promise of a Cure: Just Go Vegan
I found a book called “Dr. Neal Barnard’s Program for Reversing Diabetes: The Scientifically Proven System for Reversing Diabetes Without Drugs.” Just the title is alluring and the description of the book promised so much that I was hooked. I bought the Kindle version and devoured it.
Dr. Neal Barnard suggests that changing your diet to a hard-core high fat vegan diet is the way to reverse diabetes. He gives all sorts of scientific data to support his assertion and he shares bunches of case studies to prove that his system can work.
So I tried it. I cut out all animal product from my diet and went vegan. I may have sabotaged my own success because I didn’t focus as much on the high-fat part as the no meat part. And I was still trying to maintain low carb, as well, even though the good doctor recommends ignoring carb-counting in favor of getting higher good fat content in your diet.
Cutting Out Meat Didn’t Cure My Diabetes, But It Did Have Other Benefits
Anyway, I was trying my version of this diet, but after two months of this, I wasn’t seeing any improvement in my numbers. However, what I did discover is that perhaps my system doesn’t process meat properly. Suddenly, once I stopped ingesting meat, I stopped having the abdominal cramps and bloating after almost every meal. I had far less gas and what I did have didn’t hurt and didn’t smell as bad.
A lot of times, if you suspect you may have a food allergy or issue, it’s recommended you cut it out for a period of 30 days and then gradually re-introduce it to see what you react to.
My experiment revealed that land-based meat is not good for me. I have found that I can eat modest amounts of seafood without adverse effects. I discovered I could also reintroduce dairy products to my diet, so I could eat cheese and yogurt again. And apparently, eggs don’t hit my system the same way that chicken does, so I can eat those, as well.
I dropped another 20+ pounds with the vegetarian diet and returned to my high school (supposedly my medically ideal weight) of 117 pounds. I was still getting high blood sugar readings, though, so I kept looking for another solution.
Still Trying to Control My Diabetes, I Finally Found Insulin
About eight months after I went vegan/vegetarian, I found an organization that was helping people like me get medical care, so I applied for and was awarded one of their $250 medical grants. They also put me in touch with a doctor’s office that worked on a sliding scale and were willing to accept the grant money.
I walked in on the day of the appointment feeling slightly nervous. I knew I’d not been taking very good care of myself and I wasn’t sure how that would show up in test results. After listening to everything I had to say, they pricked my finger.
“Oh! Your sugars are so high! You need to be in the hospital! You could pass out at any second! You need to go to the emergency room right now!”
“What?!? How high are my sugars?” I demanded, feeling truly alarmed at this point.
“Your blood sugar is at 500. You really need to go to the ER right away,” the nurse and doctor continued.
“Look, I can’t afford an ER visit. The only reason I could come to see you was because I got a grant. I don’t feel like I’m about to pass out. Isn’t there anything else we can do about this?” I said.
“Well, we could give you some insulin and see if that helps. Would you consent to a shot? We really don’t want you to leave here with sugars so high unless you’re going to the ER.”
“Sure, give me insulin, that’s fine,” I agreed.
Then I waited almost an hour for them to get their act together and give me the shot. It seemed to me if I was really in that precarious a situation that they feared I was about to go into a coma any second that they would have moved faster to give me that shot, but whatever.
When the nurse finally returned with the insulin and the needle, she said she wanted to test my blood again first. So she did and got even more upset when she saw that I’d spiked another almost 100 points. My blood glucose levels were now at 596. She got the syringe ready and injected the medicine into the back of my tricep, in an area where I couldn’t see how she did the injection.
She then put me in a waiting area so that they could clear the room and get another patient in there. They wanted me to wait an hour or so to see the effects of the insulin. The Jeopardy theme song plays in my head whenever I think about that waiting period. But eventually they returned and checked my blood again. In a little less than an hour, my sugars had dropped about 200 points. The doctor returned and said,
“Alright, it seems that you need to be on insulin. If such a small dose (10 units) had that large of an effect, I’m writing you a prescription. When you get the prescription filled, come back and the nurse will show you how to inject yourself.”
“Okay, thanks, doctor,” I waved as he left the room.
Holy Crap, Insulin Is Expensive, (but It Works)!
The next hurdle was to figure out how to pay for this prescription. I found out just how expensive insulin is when you don’t have health insurance. I went to one of the big chain pharmacies (I don’t remember which one), and they told me it would cost in excess of $300 for a 30 day supply of vials of insulin. That didn’t include the needles, which were an additional cost (I can’t remember that figure). I inquired about the insulin pen, but that was something like $900 without insurance. I walked out without my insulin because I had no way to pay even the lesser amount.
Someone told me to check with the County Health Department and so I tracked them down and went to their pharmacy to inquire of prices. Here, I could get a bottle of insulin and needles for about $15 a month! Sold!
I returned to the doctor’s office to learn how to inject myself and was told to put the needle just under the skin, either in the tops of my thighs, in my belly, or in the back of my arms. She then proceeded to inject me in the back of the arm again, where I couldn’t see. This nurse may have been good at nursing, but she sucked at teaching. I fumbled through my own injections for the next few weeks, wishing they didn’t hurt so much.
I finally learned how to inject myself properly when I went home for a visit with my mom. My mom was a nurse for over 30 years and she saw how I was injecting myself. She promptly gave me some pointers and instruction to improve my technique and my confidence. During that visit, Mom and I also attended an event at which I met the man who would become my husband less than a year later. This man had been a Navy Hospital Corpsman and was able to help me refine my injection procedure even further.
I was started at 20 units of insulin, divided into two injections a day of 10 units each. I eventually was able to move up to the long acting insulin in pens that don’t need constant refrigeration, and I’m now up to 30 units of long-acting insulin, once a day, with a fast-acting insulin I can take as needed. I immediately started seeing normal blood sugars for the first time since I was diagnosed. Unfortunately, I did not yet understand the dangers of low blood sugar crashes that can happen as a result of insulin injections. But that’s a topic for another post.
Complication #1: Pain in My Feet & Legs
He asked me some more questions about those sensations and then said I probably had developed diabetic neuropathy. He prescribed gabapentin/Neurontin and we gradually increased my dosage to the highest amount it’s safe to take.
That level seems to keep most of the discomfort at bay. If I miss even one dose, I have problems sleeping at night, because that’s when the symptoms become most prominent and annoying.
Complication #2: Blurry Vision
Steve and my best friend expressed concern and so I finally gave in and went to the Walmart eye center near home. I agreed to pay the extra fee to have the special test they give to diabetics included in the exam. After one or two tests, the doctor brought me into her office and asked if I’d driven myself that day.
“Yes, I drove, but it’s okay, I was planning to do some shopping in Walmart after this exam, so just let me know how long I need to wait after you dilate my eyes before I’m safe to drive,” I said.
“You don’t understand. I haven’t even dilated you yet and you’re already not safe to drive,” she replied.
I felt like I’d been socked in the gut. But she wasn’t done.
“I’m seeing some things that are very concerning to me. You need to make arrangements to see a retina specialist as soon as possible,” she stated gravely.
So, I did. I found a specialist and made an appointment. They put me through a whole regimen of tests and then broke the bad news: I had Clinically Significant Macular Edema (CSME), probably related to my diabetes.
This is a condition in which the tiny capillaries in the eyes have broken down due to the high sugars that had been in my system, and were now leaking into the eye and not draining quickly enough. This was putting pressure on the eye and resulting in blurry vision. Apparently, if the condition continues untreated, it can cause total blindness.
The eye doctor felt that the condition was progressed far enough in the left eye that they really wanted to give me a laser cauterization treatment that day. They didn’t want me to leave and take a chance of it worsening further. Then they shared how much this procedure would cost and I choked. Thankfully, Steve was willing to help me pay for this procedure, so I took him up on his offer and consented to the procedure.
The laser cauterization wasn’t painful, and was over surprisingly quickly. Then it was just a matter of wait and see if that did the trick. The only other treatment alternative was to inject medicine directly into the eyes, which sounded totally awful and which I wanted to avoid if at all possible.
About a month later, I went in for the follow up, and the doctor told me things were looking good in that eye.
“Affordable” Insurance Is Sometimes an Oxymoron
Then the deadline arrived to sign up for the Affordable Care Act in mid-March of 2014. I was thankful that all my pre-existing conditions wouldn’t be a barrier to getting coverage. But I was astounded and dismayed by the reality that the word “affordable” in the title of this program was a joke, at least in Georgia where the Medicaid program had not been expanded to help those who fell between the income cracks.
So I didn’t qualify for any subsidies and I couldn’t find an adequate plan for less than $350+ per month. It was a good thing that my therapy practice was starting to bring in a consistent income. I signed up for it, feeling like I had no real choice.
Meanwhile, my relationship had continued to progress until finally Steve proposed to me on April 27, 2014. I said yes and we signed the legal paperwork and had a small handfasting ceremony on June 13, 2014.
Immediately thereafter we jumped through all the hoops to get me on his insurance so that I could see an eye doctor in Missouri. We’d already decided that I would move up there to be with him instead of him moving to be with me in Atlanta.
Getting married so quickly after the proposal was a financial decision. We also had a larger wedding to which we invited all our family in September of that year, but by going ahead with the legal part in June, we got to drop that $350+/month insurance plan, ultimately saving us over $1,500.
More Eye Problems Led to a 2nd Opinion
Unfortunately, once I got in to see the new eye doc in Missouri, he told me that I needed to get the laser cauterization in the right eye. Supposedly, it had deteriorated in the in the weeks between appointments. I sighed but agreed, since it had seemed to do the trick in the left eye.
In the days following the procedure, however, I started noticing that I had small black spots in the center of my field of vision. These were most apparent when I was trying to read and letters or parts of letters were missing. Alarmed, I called the doctor’s office and asked to speak to the doctor. He suggested I come on in so he could examine me and see if there was cause for concern.
In his office, he did some tests, but then said everything seemed to be coming along fine.
“But what about the blank spots?” I asked, since he hadn’t directly addressed that issue.
“Oh, I’m sure those will resolve. Give it until our one month follow-up appointment. I’m sure they’ll go away by then.” He reassured me.
Well, they didn’t. The spots didn’t get any worse, but they didn’t go away either. I told him so at our one-month follow-up.
“Huh!” he exclaimed. “I’ve never heard of that in my 30 years of doing this!” Then he continued, “But it does look like we’re going to have to do the injections, after all. The laser procedure doesn’t seem to have taken care of the issue. The problem in the left eye is worsening again, too, so we’ll have to inject both eyes.”
“You’ve never heard of blank spots in the vision after a laser procedure?” I asked, just to be sure I heard him correctly. He confirmed that’s what he’d said and then asked if I’d like to schedule an appointment for the first injection.
I said, “No, I think I’m going to get a second opinion first.” I was not about to trust this guy with needles if he was that surprised and unconcerned by the blank spots in my vision after the lasers. Especially since I didn’t have that problem in the left eye after the laser treatment I received in Atlanta.
To Inject or Not To Inject, That Is the Question
We contacted our insurance company and asked for another referral, due to the need for a second opinion. That doctor spent a lot of time with us, answering all of our questions, and finally expressed his opinion on the state of condition. He wasn’t at all surprised to hear about my blank spots.
“Of course, you have blank spots in your vision. You just had a laser burn parts of your retina!” he said. Then he continued, “That’s why I don’t do laser treatments for this issue. I’m certified to, but I don’t believe in them.”
He followed that with the bad news that I do need to have the injections but that he felt very optimistic about the efficacy of the injection treatment, especially in my case. He said I really hadn’t lost that much vision yet and that with my age, I had a good chance of a full recovery.
A full recovery did NOT mean I would get any lost sight back, although there is a small chance of that with this procedure, but that I could successfully treat the condition and eventually be able to stop treatment. The downside being that this treatment takes a really long time.
I started having injections in each eye every four weeks. I gradually have been able to extend my schedule to every six weeks, then eight weeks, and I’m now at every 10 weeks. I’ve been getting these injections for two years already and will continue to do so for the foreseeable future. But there is a distant light at the end of this tunnel, provided I keep my diabetes under control. Thankfully, with the insulin treatment, I am under good control.
Good Doctors Can Make a World of Difference
The good control I now enjoy is partly due to my new primary care physician in Missouri who correctly diagnosed me as having Type 1.5 Diabetes. He saw that I was not overweight at all, that metformin didn’t seem to shift my numbers much, but that I was very sensitive to the insulin treatment (as evidenced by the very small dose I’m on). So he kept me off metformin and has been monitoring me closely ever since.
I still eat a mostly lacto-ovo vegetarian diet, with the occasional seafood treat (I grew up with two parents from the Chesapeake Bay region; I love seafood!). And I still watch my carbs very closely. I love to experiment with low-carb dessert and breakfast options, but it’s such a challenge to eat out sometimes. It’s very tricky having such a restrictive diet and that’s part of why I’ve started this blog – to help others like me, even if we’re not eating the exact same diet.