That's putting it mildly, but I have this aversion to swearing on the Internet so I try not to.
Diabetes is an insidious disease that kills you slowly over time. That is the honest to God truth. Even if you take excellent care of yourself, if you have Diabetes some complication which it causes will most likely lead to your demise. I don't even want to list all the problems that can crop up because it is too long and depressing, but suffice it to say, Diabetes is the leading cause of blindness and kidney disease, two very terrible and permanent afflictions.
I married a man with Type 1 Diabetes and over the years have been watching it take its toll on him. It actually started its insidiousness in Mark before I met him. He was diagnosed at age 9 and by 25 he was legally blind, had lessening kidney function and neuropathy had begun in this feet. Once his kidneys failed he was blessed to receive a kidney and pancreas transplant which commenced a 6 year reprieve from Diabetes. There is a lot that goes into taking care of transplanted organs too, which can make it feel like you've traded one disease for another, but it was indeed a healthy time. We got married and had a baby during those years.
Mark has been back on dialysis and insulin since winter of 2002, another 9 years now, and there isn't much hope for a second transplant due to antibodies in his system from the first set of organs. The other problem is, Diabetes and dialysis have caused complications with his heart which ultimately led to his double bypass last September (after several angiograms, angioplasty and stent placements failed), and one very important thing you need in order to undergo transplant surgery is a strong heart. So he has been listed as active and inactive on the transplant list over and over since 2003. Each time an "abnormality" shows up on a heart stress test, he is deactivated, then after treatment and a clear heart stress test he is reactivated.
I'm pretty sure one's heart can be strong enough for surgery after bypass, but there's still the antibody issue. Therefor, in my mind Mark will likely live this way for the rest of his life. However, one never actually voices this to him. He still focuses on the possibility of another transplant because it gives him hope. I can't argue with that, nor should I try. Taking away some one's hope is cruel. And despite everything Mark goes through he is one of the most positive and upbeat individuals I have ever known. It's one of the qualities that makes me love him and how he has taught me so much.
Case in point: sometimes Mark goes through phases of insulin sensitivity. Meaning he can get low, have an insulin reaction, easily and for no apparent reason. He seems to be in such a phase right now (which is why I started this post). The night of my birthday this past Saturday, after a great day in Leavenworth and eating plenty of food (too much if you ask me), Mark ran to Walmart to return a movie and get me a bottle of wine and proceeded to get low while there. I had a strong feeling something was wrong because this little errand was taking way too long. He realized he was low himself when he stumbled and bumped into a few people. They asked him if he was OK and he said his blood sugar was low. Someone got him some orange juice, he drank it and was feeling better, so he got my wine (and a box of cereal because he thought it might look weird to be low and buy just wine). But he didn't make it out the door because his sugar was still too low so someone called 911. Paramedics/EMTs helped him and even drove he and his car home. I'm not proud, but I was really angry for a little while, not understanding how this could've happened. Mark tried to reach out to me but I pushed him away. But, I didn't want the day to end on such a crappy note, so I suggested we find something funny to watch.
Mark spent yesterday afternoon hanging curtain rods in our and Cami's rooms. At 4:30 he realized he needed to eat and he did. Then we had dinner around 6:30. Between 9-9:30 he was getting low again. He said he hadn't taken a bolus of insulin with dinner because he didn't eat much carbs. While in the kitchen trying to fix himself something to eat his sugar crashed to the point where he was totally out of it and couldn't stand up anymore. He had made some toast so I moved it to the table hoping he'd go sit down at it to eat. I tried to help him walk but he wouldn't let me. I kept trying to help. He still wouldn't let me, even though he was about to fall flat on his face. Thankfully he manged to just slide down to the floor, but not without totally fighting it first.
Once he was safely sitting on the floor I stuck a straw in the cup of milk he had poured and tried to help him drink, but he kept leaning away from me. I started to get scared that he was going to remain uncooperative and yelled at him to just freaking drink the damn milk already! He then decided I needed to give him the cup so he could do it himself. I loathe giving him a cup of liquid when he's low because he will most likely spill it, which he proceeded to do because he kept moving the cup around trying to keep it away from me even though I had backed off. Mark is like a drunk 2 year old when his blood sugar gets so low! He was yelling at me to let go of the cup (I had) then he spilled it and I burst into tears, crying as I sopped up milk.
Sometimes if I get upset during an insulin reaction he will hear it and it will make him think just clear enough to actually start consuming something. He chugged what was left of the milk and I gave him the toast he had made and got him more milk, crying the whole time. Once I knew he was getting sustenance I went to the bathroom for tissue...and to keep crying in private. Sometimes I cry out of utter frustration with the way Mark is behaving. And I was frustrated, but it was more than that. I was crying so much due to fear. Yeah it's irritating, then on the flip side, kind of funny after the fact. But it's also very disconcerting to see Mark be completely different from his normal self....not to mention where my thoughts invariably lead me....this is hurting him....he could die if I can't help him....please God, help me make him better.
Now here's the kicker. He's feeling a bit better and sits down at the table to just chill. I'm sitting on the couch and keep looking over at him, asking if he's doing OK. One time he says he's wishing something would just go his way for once. Well this hurts my heart so I go over and comfort him. The next thing he says is "but I'm so grateful". Grateful? Now? What for? "Because you're here", he says.
I am here. I am 100% here with Mark, and our kids. This is what I do, who I am. Even as I often hate Mark's health problems, want to scream and throw things and not do it anymore, I am completely in love with my family. How do I reconcile these conflicting emotions? Hell, life is a massive jumble of conflicting emotions! All I can do, all any of us can do, is focus on the good, laugh and sprinkle in plenty of other things that make us happy and fulfilled too. Such as friends, hobbies, work, music, books, movies, great TV shows, food and wine, nature, pets, birthdays, Christmas, caramel....
Diabetes is still dumb. Watching someone you love struggle is dumb. Being afraid all the time is dumb. Anything that sucks is dumb! I wish it would all go away.
On the other hand....
"We have no right to ask when sorrow comes, `Why did this happen to me?' unless we ask the same question for every moment of happiness that comes our way."
~ Author Unknown
Oh, my heart.
ReplyDeleteThe deep love you have for Mark - and that he has for you - is so apparent in this post.
And...all that you have gone through, Jen.
And the way he went through all of it and then had the strength to say he is so grateful...for you.
Wow.
Ado, it warms my heart that you clicked through to read this post. Thank you!
DeleteHello there- found you through the Yeah Write #42. Oh dear! My heart cries out for you and your family after reading this post. I have had Type 1 for 5 years now, and it is terrifying. I am lucky to be dating another T1 who understands exactly what I'm going through. Being low turns me into a mean, sharp-tongued, snappy, and impatient person, but I'm usually willing to eat food.
ReplyDeleteYou are an amazing wife and mother, and it's so obvious how much love and dedication you have for your family.
I'm sorry you have diabetes. I sort of hate it when someone like you reads something like this that I've writing cuz I don't wan to upset you. I hope I didn't.
DeleteNo, no, no! Your post provides good perspective. I can't always control how I act under the influence of dumb blood sugars, but I can tell my friends, family, and S.O. how much I appreciate them and how much it means to me that they care and try to take care of me. You've been through a lot, and your strength is inspiring.
DeleteWell good. And thank you!
DeleteYou have just about the best attitude possible. Mark is lucky to have you (and vice versa, I'm sure). Chronic illness is so hard to live with, because it almost feels as though there is a pendulum swinging over your head. Even when you're happy and having a wonderful time it's always there, lurking in the background, threatening to take away all that happiness. You're very strong, and I hope you both keep giving diabetes a heck of a fight.
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