MG seems to have taken over my life. In everything I do, it is in the back of my mind which is understandable when one seems to be on a slow decline. Frustration set in this hasn’t been my best few weeks.
At times my life seems to be nothing but MG, it’s as if this disease has encompassed every facet of my life and that really bothers me. I try very hard to see the humor in situations, the silver lining in problems and buckets of gold at the ends of rainbows. But sometimes there’s nothing to laugh about, the silver is tarnished and the bucket of gold? It was just fool’s gold.
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Our son enjoys soccer, and it is now soccer season. It’s a million degrees, with a thousand percent humidity. It’s so hot and humid this Summer that Satan himself, I believe, has taken off for vacation to some cool climate. These extreme temperatures and humidity does a number on me, but I want so badly to be able to watch Hot Rod play. Sitting outside for an hour in my little blue chair the heat and humidity made me sweat so much I was sweating in places I didn’t realize could sweat! By the time we got in to the car, I was slurring, stumbling, unable to form a smile and probably looked like a lush to an outsider. Darn MG makes me look like an alcoholic, yet I can’t even imbibe!
Hot Rod did great in soccer, his kicks are stronger, he paid attention and most importantly, he had a great time! It’s so refreshing to watch one’s child as they do something they love. I don’t think he’ll ever be the next big soccer star, but I know he loves soccer and he enjoys it. While Hot Rod played with the other kids, Princess was on the sidelines with her soccer ball playing with the Hubster. She’s excited about playing soccer next year! I did get a few snapshots of the kids before my arms went all spaghetti-like. Tomorrow he has soccer practice and I won’t be able to go this time. It’s the first time I’ve ever not attended one of his practices, but alas it’s IVIg time and I don’t think the infusion nurse would be willing to pack up and head off to the soccer fields with me hooked up to an IV, so Super Hubby will have to take the kids if Hot Rod is going to practice. That makes me sad.
Sometimes everything mounts and little hills grow to enormous emotional mountains and what’s one to do? Embarrass ones’ self and cry I suppose. That’s what I did last night in front of the infusion nurse, no less! The past few weeks have been hard on me and yesterday’s problems with getting an infusion nurse to the house had me a wreck. Wednesday I had a neurology appointment and after seeing the state I was in the neurologist agreed I needed more IVIg over more days, and more meds. Everything has increased, a new medication has been added and now I’m glad I got the huge pill sorter as my “cocktail” continues to grow. My infusion was set up for the very next day, after a nurses’ personal fiasco hindered my receipt of IVIg yesterday morning it resulted in my infusion with another nurse taking place until 2:30 am. Thank God for the nurse who came out though, even if I did cry when she had problems finding veins…again. Not from the pain, but from the fact that something as simple as finding a vein is problematic at this point.
So now my MG is worsening, resulting in us needing to add more medicine, my blood sugars are increasing which may be the beginning of prednisone induced diabetes, chest ports are being considered because of the problems everyone is having finding usable veins, and we’ve had to buy me drinkable nutrition. Yay…could you read the excitement in that statement? “Drinkable nutrition” Not exactly appetizing. But there are days where mashed potatoes, pudding, and yogurt consistencies are about all I can do. None of this is good for you, however, and with my sugar levels rising I need to keep a closer eye on it. On the way to the pharmacy from the neurologist I, as it seems I do often, was thinking of how MG is affecting my family. The stress my disease is causing my family really bothers me and makes me feel guilty (I think I was meant to be a Catholic because everything makes me feel guilty…lol). I look over at my husband and we have this conversation:
Me: I’m sorry I’m falling apart…
Hubby: You’re not falling apart, you’re falling together.
Me: *pause* So, you’re saying I’m not exploding I’m imploding?
Hubby: Exactly!
He makes me smile! Today’s infusion went pretty well, she found a vein after a couple of sticks and a heating pad. I’m tired, run down, my head hurts, I’m nauseous and round three begins tomorrow. I’ll gladly go through this if the IVIg works - to get a few good weeks would be fantastic! Things will get better! Something I have noticed, is that our children are pretty empathetic to one’s plight. They don’t complain about what we can’t do and are grateful for what we can do. My son hugs me and tells me that he likes me this way and that I don’t embarrass him. I hope as he grows older he still feels that way!
For now, I'm just waiting until I fall back together...
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