Here’s my story;
I’m going to start with January of last year, the moment I started rapidly losing weight. My weight loss was in spurts and generally no less than 5lbs a week-- up to 15lbs. The month I lost over 30lbs, I knew something wasn’t right. I went to see my primary doctor who had ordered a mess of blood work and a thyroid ultrasound. The only thing that they were able to find was my thyroid hormone was elevated just a bit-- not enough for concern though. Months went by without weight loss until about September when I suddenly dropped another 30lbs in a month, began eating constantly (due to an intense hungry), my heart began pounding harder and faster, my hands began to tremor, and I began losing my hair. I made a second appointment with a new doctor and jumped right on the persistent bandwagon. December, 2013 after another series of blood work, I was diagnosed with Grave’s Disease, an autoimmune disease that attacks the thyroid and causes it to produce too much thyroid hormone. The new doctor promptly prescribed me a thyroid medication to lower my hormone and another to mask all my symptoms until we could get everything under control. A few months went by as I still continued to lose weight, my hair, and my hunger increased. I needed to eat full meals every hour to hour and a half-- even through the nights. I also developed fatigue and dizziness. Enough was enough. I made an appointment with an endocrinologist who promptly gave me three decisions-- radioactive iodine treatment, surgery, or continue to taking the medicine I was on for the next two years with potential risk for severe. We had eliminated the radioactive iodine treatment due to me being/have been a former smoker, and the medication due to the severe risks associated with it. My only resort was surgery. For about two months leading up to my surgery I developed the inability to “quench my thirst” and the need to relieve myself every half hour. Both my doctor and the endocrinologist informed me that both were future symptoms of my Grave’s Disease and that surgery needed to be done sooner than later.
May 21, 2014 I was scheduled to have a complete thyroidectomy. I arrived promptly at 6:30a.m. to be prepped for surgery. As I sat swishing my water and spitting, the nurses and doctors kept asking me if I was positive I wasn’t diabetic in which I kept answering yes. They revealed to me that my blood sugars were 398 and I was promptly denied my surgery. After revealing I had moderate amounts of ketones in my blood they admitted me to the ICU. Within a few hours I was approached by my doctor, the hospital dietician, two Diabetes dietitians, three other doctors, and a “Chapel leader”. I was diagnosed with Adult Type 1 Diabetes. I stayed in the hospital for three nights and four days-- all while being completely bombarded with information. The staff was amazing and resourceful and taught me everything I needed to know about my new disease. They even gave me starter kits, test strips, lancets, a couple meters (just so I’m prepared for whatever my sure insurance covered) Everyone kept asking me if I was okay, if I was understanding everything, and how I was feeling about all of it. At the moment I thought I was okay. I kept telling them that I’d be okay and jokingly told them that; “It probably won’t really hit me until I get home.” The day I was released I went directly to the pharmacy to pick up my newly prescribed insulin and begin my new journey. That’s when it all hit me. The moment the total climbed on the screen and I was paying over $300 for my insulin. Needless to say, I cried when I got home. Since my diagnosis, I’ve had my thyroid removed which came alone with another week in the hospital. (due to extreme complications with my surgery).
I find myself crying out of frustration. I’m FAR from being okay with my new diagnosis. I have a great support group but all that rattles through my head now is where the money for my next round of insulin will come from? If I have to pay for that where will the meals for my family come from now? I’m going to put it very simply. I’m poor. Very poor. My life was on track to becoming manageable but I now have this HUGE curveball thrown at me. I keep asking myself; “Why me? Why now? Why this?” I’m so frustrated with life right now, I’m at a loss of what to do. In a matter of days my whole lifestyle has been changed and I’m now at the mercy of this disease. (for the time being anyhow) I KNOW it’ll get better, I just don’t know how to make it better. Is anyone willing to lend a hand to my frustration. I know I’ve thrown a lot of information out all at once, but I just needed someplace to voice my frustrations. (that wasn’t to the people around me)
$300 is a lot of money for each refill. Whatever type of insulin and supplies you use, most of the major manufacturers offer free or reduced cost product to those who qualify. Visit their websites to find out how to apply.
I work for a major health insurance company. Now with Obamacare, You could surely qualify for low cost health insurance with a subsidy from the government. Also check with your state insurance commissioner’s office to see if you qualify for Medicaid. God Bless and Good Luck. Just a question–with all the blood work you had, did it not show an elevated blood sugar long before May 21, 2014? The extreme weight loss and excessive thirst would be the first clue. Sorry you had to suffer through your diagnosis for such a long time.
Your diagnosis happened when you were going through another major health issue and surgery, so you’ve had a double whammy!
Being diagnosed with a lifelong health issue like diabetes is always a shock. And you will go through stages of frustration, grief and mourning as you come to terms with it. Know it will happen, just not overnight.
Diabetes is unique in that the patient does so much of their own care and medication dosing at home. Seriously, I’ve had this disease for almost 38 years and I’m still learning new stuff all the time. Don’t feel overwhelmed and like you need to know it all instantly. You already know the basics… insulin lowers blood sugar, sugar raises it, your meter tells you if you need a little insulin or a little sugar. You’ll learn the rest as you go.
If you have health insurance it will cover your medication and test strips, but you’ll still pay money out of pocket every month for co-pays. During times in my life when I’ve not had insurance I’ve done “poor girls” diabetes. That means I use (and re-use as long as they’re sharp) syringes, use the cheap though less quick acting Regular insulin, and the generic meter and test strips which are $.50 each instead of $1 each like the name brand strips.
I’ve also had to make the decision to quit my artsy job with no benefits and get a less exciting job that had incredible health insurance so I could have regular visits with a great doctor and an insulin pump. I still pay about $150 a month out of pocket for co-pays between insulin, strips and pump supplies. When people have asked what I’d do if there was ever a cure for diabetes, my response is always that I’d go on vacation with all the extra money I’d have! But somehow, even in the times when I was unemployed or working contract theater jobs for not much money, I always found a way to get the supplies I needed. Sometimes you have to get creative or not use cutting edge medication, but there are lower cost options available.
@JaniB145 : They claimed I didn’t qualify for ObamaCare because I recently moved, and quit a job. They claimed that, because I had no income coming it at all, I qualify for state aid. They sent my paperwork there and I fought tooth and nail to get in, but was accepted last week. All of my Diabetic supplies are covered-- meters, test strips, lancets, insulin. (WHAT A RELIEF)
And as for the blood sugar. ACTUALLY it was tested back in January (for routine blood work associated with my Grave’s Disease) but nothing came back abnormal, other than my thyroid hormone. By January I had already lost over 100lbs. But then, about two months later in March, it was tested again. (I went to the ER for severe chest pains and almost passing out) and THEN it was in the 200’s and nobody caught. Not the ER doctors, and the not my regular physician (That I followed up with post ER visit). The excessive thirst didn’t start until about mid April. I told my Endocrinologist about this and he said it was another sign of my Grave’s Disease. (It was hard because all the symptoms of both interlap)
@jennagrant : I think that was the hardest part. Having everything happen all at once. (In less than 6 months of each diagnoses) By the time I got over being diagnosed (and fixing) my Grave’s Disease, I had another thrown on top of me. I’m slowly getting there. I’ve begun to notice my signs for low blood sugar as well as high (kind of). I’m just trying to figure out answers to questions like; "Do I give myself a shot of insulin (like I would at mealtime) for snacks.
SAY, I went to the bakery with my partner and wanted a piece of cake, that cake has, let’s say, 50 carbs in it (a whole meal’s worth for me) but I just ate an hour ago and gave myself insulin to cover that food. Would I give myself another 5 units (1 unit for every 10g I eat) or just let it go and see how I am in two hours?
And let’s say when I eat this cake I’m at 100 for my sugar levels, but about 2 hours later my blood sugar is 200-250 (just throwing a number out there) would I then give myself insulin based on my sliding scale?! And if lets say, I go to take my lantus before bed (like a good girl) check my sugars and they’re 200 (had this happen a few nights ago) would I then give myself my Humalog based on my sliding scale?
I think that’s the most frustrating part, is trying to answer these questions. Because, as I am on a much healthier diet since being diagnosed, I have had to say no to a few things because I didn’t know how to handle the situation.
Glad to hear that you got coverage and that your meds and supplies are covered. That is a relief for you. It is very frustrating, as a diabetic, dealing with insurance whatever type it may be.
I can’t imagine your stress. I am also recently diagnosed. As far as all of your questions about corrections, when do give more, etc… I really suggest reading the book “think like a pancreas.” It helped me out a lot with those types of questions. It’s great that you are now insured! It get’s easier…
I was diagnosed full on T1d at almost 46 yoa. When I think “Whoa, is me,” I think, what if I was a little kid? Parent of a child who wakes in the middle of night to check a BG? A Teen? A College age young adult!
I can’t imagine as a child saying “no” to birthday cake at a friend’s party. Or “no” to fast food on-demand as a hi-schooler. Or “no” as a college student to late night pizza and beer or Boone’s Farm Strawberry Hill.
IMO, I am lucky. I am lucky my T Cells decided, for whatever reason, to go crazy on me as an adult. They could’ve done it when I was 2. Or 10. Or 16. Or 21. They could’ve placed a tremendous burden on my parents and two older siblings. They did not.
Thank God I made it to 45 before it happened. Everything else is icing on tar first 44.5 years of my life.