I started this a couple years ago, and put it to the side. I feel the need to finish it now though, and hope it will explain a few things. I know this isn’t my usual crafty stuff, and I’ll get an update on that soon too, but this needed to happen first.
Many of you lovely readers that know me, know that DH is a Type 1 Diabetic. Diagnosed right before Halloween when he was 11 years old. Learned how to give himself shots, check his blood sugar, got lists and lists of “dos and don’ts”, and got chased around by nurses trying to get him to eat peaches *giggles*
Before this diagnosis, he was an aspiring hockey player (he is from the frozen Midwest after all) with not a care in the world (as any 11 year old should be). Now we have a son, not much older than that, I can’t even begin to imagine.
As a wife though, from the time I found out (funny story there), to now, I have given shots, spoon fed Lucky Charms, waited anxiously through tests, two eye surgeries, a hernia surgery, and dug through grocery store shelves to find that ONE bag of fruit gummies (his favorite low blood sugar treat) with more of his favorite flavor, and that’s just a tiny piece of it. Because, I love him, and I married him the man, NOT the disease.
Now, to the part that will probably get me LOTS of comments and such. If you are a Type 2 diabetic, go away. No offense intended, at all, but in 80-95% of cases, you can get rid of your diabetes (to those in the small percentages, I’m not talking to you). Type 1’s cannot. Ever. It doesn’t matter if they are under, over, or a perfect weight, doesn’t matter if they adhere to the strictest of diets, doesn’t matter WHAT they do. T1D will ALWAYS be there.
I know it seems harsh to say “go away”. But seriously people. There are ways to keep T2D under control to the point of no medication (and before I get blasted, yes I know there is a percentage of people this is not the case for, but you aren’t the ones I’m talking to), or gone completely by doing what your doctors, nurses, exercise coaches, and nutritionists tell you.
All that being said. I’ve read some disturbing statistics over the years. The rate of T1D diagnoses has gone up 23% in the US between 2001 – 2009. Also, I believe it’s somewhere in the 80% range of the funding for diabetes research goes to Type 2, NOT type 1. That being said, if you want to help, http://www.JDRF.org is the place to go. They are dedicated solely to finding a cure for T1D. Push your local and federal leaders to support JDRF and increase the funding to find a cure for this.
My DH has been very blessed. No major problems from his diabetes. One eye has a few issues, he’s had some mild neuropathy. We are exploring options of a cure called Islet Cell Transplantation. It involves surgery, and time away from home, and a myriad of things I won’t get into right now.
What I do want to talk about though, as delicately as I can, without giving away too much information is this. Diabetes not only controls a good chunk of our lives. Not only is factored into every single decision we make. Not only is why I always carry I bigger purse, and snacks everywhere we go. Not only is why we don’t travel much. Not only is all of these things. But it is expensive. We have watched over the years the prices of all the needed medications rise steadily, and rapidly, over the past 15 years. At scary rates. For example:
The second two listed? Those are two of the many prescriptions we buy a month. Not in vial form, and yes, we have insurance. And no, we can’t skip it. Yes, we have skipped other things to pay for this though. Average medical costs per month for us can be upwards of $400. That is prescriptions, alcohol swabs, special foods, doctor’s visits, lab work bills… I think you get the idea. And that’s assuming there are no major problems, and we keep him out of the doctor’s office (or worse, the hospital) for viruses, bacterial infections, and the like. (which by the way, if you’re sick, go away and don’t breathe on me or him, and as much as we care about you, no we will not come visit you in the hospital lol)
So, to all those people that say, “why don’t you get DS more private lessons?”, “what about this or that summer intensive?”, “how about these shoes, tights, clothes?” or sympathetic looks when I say my DD is doing technical college before transferring to a four year, like I’m doing something wrong. When I say back, “no sorry, we can’t.” or “only if there is a scholarship for it.” or “thank goodness my dad is willing to pay for this or that”. I’m not kidding. I’m not lazy. I home-school my DS, keep up with the house and laundry, taxi both kids everywhere they need to go in my 10 year old car, am taking 24 college credits from March to November (that’s 3 credit hours every 5 weeks, or the equivalent of two full 12 credit hour semesters in about 8 months with no breaks. None, seriously, I will finish a class on a Monday and start a new one on a Tuesday), and am seriously looking at any offer of a job, even if it’s bagging groceries.
And you know what. I’m not ashamed. Not of my circumstances. I’m a bit embarrassed for everyone that thinks I should be “doing better”. But you know what? I am happy. I am stressed out sometimes, and seriously wish I would manage to land a winning lottery ticket some days, but I am happy. My kids are happy. My husband is alive, and as healthy as can be expected. All I’m hoping for is a little more understanding. A little less, “oh you all should do this, that, or travel here or there.” It sounds great, it really does, but that’s not where my priorities are. My priorities are educating my children, getting my own education, and keeping my husband as healthy as possible for as long as possible.
Is it really necessary for me to “tell the world” all of this? Nope. But I am tired of people not understanding. I’m tired of trying to make excuses for reasons we can’t go somewhere, or do something. I’m tired of trying to justify why my hubby is sick again (please, PLEASE stop spreading your germs, or just assuming it’s faking, or assuming he’s lazy, or just thinking he’s not doing something, trust me, daily vitamins and pro-biotics on top of all his regular meds are keeping him as healthy as he is, imagine how sick he would be if he didn’t do everything he does) And please understand. Sometimes there is NOTHING we can do. He can eat perfectly, take perfect doses of insulin, everything right, and there are STILL going to be days that sugars go high, or low, or whatever. There are many things that can happen when it does, and the effects can last for a day or two, as well. I will leave you with a little chart that is just a small glimpse of what my darling husband, goes through, sometimes daily…