The past week hasn't been very good, we all have those days. You know the ones I'm talking about, the ones where you wonder who turned the bed around because you've been getting up on the wrong side of it? Or the ones where you wonder where the people are hiding in the bushes ready to assail on you with video cameras with shouts of "You're on Candid Camera!"? Well I've been sleeping in another bed, and no one has shouted anything about me and cameras so I guess this week isn't a joke and it just stinks.
One thing and then another has gone wrong, but there were some things that went more than okay. We'll start with the bad and get it all out of the way. We took a long trip from Podunkville, to Northern, A-little-less-podunkville riding about 14 hours in a car was Hubby, myself, Hot Rod, Princess and one of my fur babies. Where is the other furbaby? Well, my beloved Tink had to be put to sleep, and she's now in Doggy Heaven chasing baby chickens, eating good stuff, or being grumpy - whatever makes her happy. I miss her. Before this trip, remember I had that scientific new miracle medicine for my MG? I had noticed my legs were hurting, it felt as though I had pulled a muscle right below my knee in my upper calf and then in my other leg between my calf and my achilles tendon. I had just been rubbing them, hoping they'd stop hurting but the charlie horses I'd get in my calves hurt more than the pulled muscles so I didn't think too much of it.
Monday, after our trip, I had my hubby agree to go to the doctor with me. He had been sick several weeks before and his chest was still hurting but he refused to go. My sinuses had been bothering me since before my IVIg and I thought if I told him it was more for me that he would go too since he had taken the day off to rest up from our trip. He agreed, turns out he only had a pulled muscle, and his lungs were okay - thank goodness!! I asked Hubby when we were at the doctor, "So, do you think I should mention my legs hurting since I'm here already?" "Sure," he replied "you may as well." So when the doctor comes in I tell her my sinuses have little men with daggers stabbing me slowly and repeatedly so I figured I'd come see if she could serve them their eviction notice in form of an antibiotic, just not in those words exactly. After consulting my list of MG No, no antibiotics she settles on one and then I told her about my leg. She said she wasn't real concerned but wanted to be sure it was just a muscle, and asked if I'd go to the hospital to have an ultrasound. I politely refused and instead opted for a blood test. I'm in my early 30's here, I don't want to waste the time or the money, I feel like dog poop and just want that nifty antibiotic. She says if this test is elevated she'd call me and while we were getting bloodwork we did a CBC and she checked my sugars since I'm on some meds which could cause diabetes. Next stop, the mall to get our eyes checked, a waste of time and money, hubby needs readers pretty much, and I just need new eyeballs - preferably some who didn't belong to someone with MG and can actually see. Hubby got his dilated so he asks me to drive, I agree as we walk up to the car - Which someone HIT! Yes, you read that correctly, someone hit our car and left. They did leave a number, a witness did see it and gave us some information regarding said accident, cops came, security made a report also, etc., etc., could our day get any worse? We're tired, haven't rested up from the trip and hubby has to go to work the next day.
Next day, I get a call from the nurse. She tells me my bloodwork came back and everything is fine except my white blood cells are elevated, probably because of the sinus infection but recheck in 3 weeks to be sure. Yeah, sure, thanks! I don't tell her I really have no intentions of getting that re-checked - I have better things to do man, what's with all this checking and rechecking? Anyway, everything is fine, I tell Hubby and Super Mommy-In-Law WBC are elevated but everything else is normal. That's what I was told after all. Then I get another call from the doctor. I think they secretly have a crush on me and couldn't get enough of my Southern Drawl, so I answer the phone,
"Hellow" (that's the proper pronunciation ya'll)?
It's the doctor, she says
"So, you know how I told you I'd call you if that test was elevated?"
"Mmmhmm."
"Well, we just got the results,"
I'm in the middle of playing one of those stupid social networking games and don't really pay much attention just "Mmmhmm" again for good measure.
"well, yours are elevated."
Crap, seriously? "Okay." No big deal.
"Well, I called your husband and I'm faxing over the results to the hospital. You really need to go ahead and go there now."
"Okay, what was my number? And what is it supposed to be?"
"It shouldn't be over .4 and yours is 2.7"
So she's rushing me off the phone like she thought that'd get me there faster. Me? I'm not worried, I think their test is messed up or something and I'm taking a shower and packing a bag, just in case, before I go to the hospital. Good thing I did, I've been here ever since Tuesday and my vision of fireworks for the 4th of July might be the ones that the computer gives you when you win a hand of Spider Solitaire (What? I'm bored!). I'm special and soon I think I'll have earned my very own short bus with all of my eccentricities. I have not one but 2, at least, blood clots! One in each leg, and there could even be one in my chest but I had to educated the doctor in the ER about MG and the potential hazard of CT dye. So he said since they already know I have two clots, the treatment would be the same so we wouldn't risk the CT...my, how nice of him, lol. At midnight, exactly, I'm moved to a room where I have been held hostage ever since. I'm so ready to leave and sleep in my own comfortable bed, surrounded by my own beautiful babies, and the furbaby I have left. Hubby's sleeping here..for now but he might have to go home on the 4th so he can go to work on the 5th. It's crazy how little, it seems, some doctors know about some medicines and medical conditions. I'm on a drug which interferes with the blood thinners I'm on, when mentioning it to the doctor (since my levels aren't rising quickly enough) she informs us that it does not prevent the thinner from working. Obviously she's done her own research, far better than the FDA, and her results yielded different than theirs as the FDA specifically says that it does, in fact inhibit the thinning capabilities of the thinner, whereas hers evidently does not. I'm the only person I know who can be on blood thinners and instead of their numbers rising as they should, they drop. Yep, I told you I was special! The magic number is 2, well between 2 and 3, but we're shooting for 2. When I came in my number was 1.08, next day 0.99 and then 1.08 the following day with medicine! Getting shots in my stomach and an oral thinner since Tuesday and here it is Saturday and I'm only at 1.29. Oh well, hopefully soon I'll go home...alive, lol.
So, that's how my week has gone. But, I did say there was some good stuff to happen also. Good stuff was that Hubby only had a pulled muscle, and he's feeling a bit better. No one was hurt when that lady hit our car. My babies are all happy and healthy. My furbaby is probably loving having my in-laws here.
Speaking of...my hubby has the best parents in the world, and they drove all the way from Northern A-little-less-podunkville to come stay with our kids while I've been in the hospital. Seriously, they must love us! They have been staying with the kids, bringing them to the hospital, and easing their minds since they got here very late Wednesday night. My in-laws are the ones that girls pray she gets when she gets married! Unfortunately, I don't know that they make in-laws like them any more so some of you ladies are probably out of luck. If I could choose a mom, I would have chosen Super-Mommy-In-Law, but since you can't marry your brother (not even here in Podunkville - that's way gross!) and I'd never want a husband other than mine, God gave me her in another way. My father-in-law goes by the moniker of Rotten Pap, and I'm glad Rotten Pap and Super Granny are here to play with our kids. I think having them, since we don't get to see them anywhere near as often as we would all like, has helped keep the kids' minds off of me being gone some. Not completely, unfortunately. Hot Rod broke my heart last night as he was leaving the hospital room. He said that "He really wants me to get better, but he really wants me to be home too". My buddy misses his mommy and I surely do him too. Super Granny kept him entertained and distracted enough though that he was fine after a bit. She had him call me and that helped, he's a great kid!
God has really blessed us, who knew going to the doctor for a sinus infection, that I'd be told I have blood clots. Another positive, I got to not only wash my hair but actually shower today, and goodness did I need it! Laying in this hospital bed is hard work, and my butt keeps getting flatter I'm sure, but today I was also allowed to take off the super stylish knee high hose and walk around some, so that's another positive. MG sucks, of course, and my hair is falling out due to some of the medicine, but I'm trying to find a bright side. The best I can come up with is, at the rate it's falling out soon I won't need to buy myself shampoo and conditioner! Also, through all of the problems we've had for the past several months, and now this it's amazing and wonderful and very touching to have so many people wish me well, send thoughts and prayers, and be there for me whenever I need them. I appreciate every kind word, every warm wish, and every get well soon. Thank you all!
Next week...next week has to be better than this week, and I pray I'm home next week to enjoy it! Through this all I try to remain positive, try to see the good, and try to find the humor. I don't always succeed, but this is bigger than me, it is effecting us all and the ones who need the most help understanding are usually the ones that make me laugh. Hot Rod is so expressive, he uses large words, and says some of the funniest things without even realizing it. I wasn't able to hear this one, but I was able to share in their laugh when Super Granny and Hubby told me about it. I'll share with you, and while reading it won't be as expressive, it's still cute.
Rotten Pap, Super Granny, Hubby, Princess and Hot Rod headed off for the cafeteria to eat while I ate my dinner in my room - They like the cafeteria. Hot Rod had just told me about how much he loved the burger from the cafeteria he had the previous day and he was looking forward to one today. Well, I guess I'm the only one who heard that because Hubby gets to the cafeteria and didn't realize what Hot Rod wanted. Hubby scooped out salad, and macaroni and cheese and I think even some corn while Hot Rod stood patiently by waiting for that mouthwatering burger. Rotten Pap has his food, Super Granny hers, Princess has hers also, and Hubby has his. Hot Rod looked around, "Hey, where's mine?" Hubby, "Your what?" "Where is my burger?!" Hubby replies, "I didn't realize you wanted one." Hot Rod says in astonished disgust, "Man, this is just so wrong!" Poor kid, I guess he thought he wasn't going to get to eat, but rest assured everyone, he did get his burger which he ate every bite of. I love and appreciate our family and friends!
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