I always consoled myself about the pain and illness's that I was here to educate. I have more than several doctors go back to medical books to look up my maladies. I hope that I made these doctors aware so that the next person will get better care. I have even let a newbie draw my blood TWICE! The first time was in an ambulance, he ripped my vein opened and I watched blood spurt across the roof of the ambulance. The second time was at a hospital, she started to DIG for the vein. I just keep thinking, "better me than a child."
Although I console myself believing this, I also thought I had an agreement with the universe. I'll take all the pain, but not my children. Well Damn it, wouldn't you know, my daughter seems to be headed down the same path. (sigh) So I think, "I'm the one willing to go through all this, but not my child!" It's a good thing my version of God isn't a bearded man sitting up in the clouds, or I would spend an awful lot of time throwing rocks at clouds.
My daughter was early, born at 33 weeks, 40 is the height of full term. She was doing really well, had a little trouble eating on her own. But then again she got down to 3.8 lbs. Little thing. At 3 months old she got E-coli. We think it was a bladder infection (from a messy diaper) that turned into an infection in her blood, e-coli. We spent a week in the hospital. Then at about 8 months she had a clogged tear duct. It kept getting infected and her eye would swell shut. They went in and cleared her tear duct, basically punched a hole through to her nasal cavity. Then she was great. So no issues since then.
Last year she turned 5. She started vomiting in the middle of the night. We thought at first, it must be the pepperoni. She went through a phase where she loved pepperoni and couldn't get enough! The next time she hadn't had any pepperoni, but it was in the middle of the night and it was red. So I thought maybe she is allergic to red dye. We watched anything with red in it. Then it seemed to be every time some other kid was sick, in the middle of the night, she would start vomiting. We assumed it was every tiny bug and flu going around. Then we thought maybe it was allergies with all the mold and weed and tree crap floating around. But alas.... it was none of these.
She has a condition called CVS, Cyclic Vomiting Syndrome. One of her cycles was for five days in a row and that is when I started researching and decided there was a real issue here. I happened upon, "chronic vomiting in children," and CVS came up. It is fairly rare to be diagnosed, because just like us, everyone assumes they have a crappy immune system and write it off. It hits children between the ages of 5 and 7. I haven't read anything about their being a cure, but her doctor seems to think if we can give her this strong medicine for 3 months, we may be able to cure her.
Now this is the fun part, ready for it. She is in first grade. How stressful is public school? This is triggered by stress of any kind. Happy or sad. Getting a low grade, or Christmas morning. How exciting for my family. Besides the vomiting it also has a lovely symptom called "abdominal migraines." Yep, migraines of the stomach. A 300lb man punching my little 6 year old in the tummy.
Last night she had her worse AM so far. Last year, before the diagnosis, she would tell me her tummy hurt and I didn't believe her. She would tell me that she felt like she was going to throw up and I would send her to school anyway. Great Mom award on that one huh!? I thought she was just being manipulative. I'm not sure she still isn't using this as a manipulation tactic at times. I really want to teach her that she can't use this problem as an excuse to get out of every tiny thing. How do I do that though, without being a horrible mom. I mean what if I call her out for lying and she isn't.
The really bad AM I can tell, she lays on the floor and says, "mommy I can't take it!" The really weird thing about this condition though is that when she isn't having the migraine or actually vomiting, she is fine!
We just got referred to a specialist because her school suggest "home bound" schooling. This is going to be a fun adventure.
Tuesday, October 25, 2011
Saturday, October 15, 2011
I always new that it was a bit strange
I am what I know now is hyperextensive. One physical therapist called me a "gummi bear," because my joints are really stretchy. Sounds like that would be a good thing, right? Nope. I guess for all the men out there that like to make sexual jokes about a "double jointed" woman, it might be amusing. It however, is not terribly fun. Because my joints have more hypermobility to them, I get injured more easily.
I have seperated my knee twice. My fingers, elbows, hips and knees hurt often. I have to be careful doing stretching excersizes because it is kind of like heating up taffy. You just end up with a mess, usually me in the ER.
When I was in my teens, my right arm used to slip out of the socket all the time. It was weird, it was gross, and it hurt. But I don't think anyone actually believed me. Then when I was 19, I was at work and a ceiling fell in on me. The kind of suspended ceilings most retailers and offices have in them. The tiles, and one metal bar hit me just right on the shoulder joint. It tore up everything inside that shoulder. I had to have complete reconstructive and rotator cuff surgery. I have since then, had two more surgeries on the same shoulder. I also have a pin in that shoulder now. I really have to keep up with strength excersizes to keep all the surrounding muscles prepared to support my lazy joints and ligaments.
I have also torn all the ligaments in my right foot. At that time I rolled my foot. Most people would end up with a sprained ankle. I ended up with a support boot for 9 weeks. The doctor said it would have been better if I had just broken the ankle. Then at least they know exactly what to fix and that the fix would hold. With Hypermobility Syndrome, you never know when it will tear, or stretch too far. The last time I tore my rotator cuff, I didn't even know I did it. That presented as a pain in the neck.
Oh... have I mentioned that I'm a bit odd.
I have seperated my knee twice. My fingers, elbows, hips and knees hurt often. I have to be careful doing stretching excersizes because it is kind of like heating up taffy. You just end up with a mess, usually me in the ER.
When I was in my teens, my right arm used to slip out of the socket all the time. It was weird, it was gross, and it hurt. But I don't think anyone actually believed me. Then when I was 19, I was at work and a ceiling fell in on me. The kind of suspended ceilings most retailers and offices have in them. The tiles, and one metal bar hit me just right on the shoulder joint. It tore up everything inside that shoulder. I had to have complete reconstructive and rotator cuff surgery. I have since then, had two more surgeries on the same shoulder. I also have a pin in that shoulder now. I really have to keep up with strength excersizes to keep all the surrounding muscles prepared to support my lazy joints and ligaments.
I have also torn all the ligaments in my right foot. At that time I rolled my foot. Most people would end up with a sprained ankle. I ended up with a support boot for 9 weeks. The doctor said it would have been better if I had just broken the ankle. Then at least they know exactly what to fix and that the fix would hold. With Hypermobility Syndrome, you never know when it will tear, or stretch too far. The last time I tore my rotator cuff, I didn't even know I did it. That presented as a pain in the neck.
Oh... have I mentioned that I'm a bit odd.
Friday, October 14, 2011
Me and my Oddities
I have always been a bit odd. My brother called me a "tree hugging granola eater." I hate granola of most types, but I do like trees. My mother said I have a love of life. Is that code for loud and obnoxious?
I think the earliest of my medical oddities that I remember, I was maybe 3 or 4 years old. I got all these little bumps on my stomach, side, and arm. The doctor had to go look it up in a medical book. I had Molluscum Contagiosum, it is a type of Pox Virus. It shows up as little bumps with a white top. My mother was told to basically pop each one and pull the little white "ball" out, then it would go away and not come back. The problem was, it hurt like hell, and I had a lot of them. I still have the little circular scars on my side and a few on my arm. Back then it was a rarity. Sadly this condition has made a come back into our society and is seem more often these days in kids and adults. It is transmitted through skin to skin contact and fomites, like towels.
My daughter and my son both have had it. My son's went away by itself, pretty quickly. My daughter's however were all over and weren't going away. The doctor told us we could rupture them or wait and they would probably go away in about a year. We opted to rupture them. She had a few really nasty clusters and she would scratch them and they would bleed but she wouldn't get the white stuff out of it, so it didn't go away. I decided to rupture them in a more controlled way, a few at a time, making sure to get all the yuck out, then using antibacterial ointment and band aids. They are all gone now, with no scars.
I am really hoping that she doesn't follow in my odd medical life pattern. However, it appears she might just do that.
The next odd medical thing that I remember is with a tooth. Supposedly I am in a dentist medical book somewhere. I must have been 5 or 6 years old. I went to the dentist. He started poking at a tooth in the back on the left side. He cracked the tooth, so of course had to go in and fix it. Low and behold, my tooth had grown in hollow. He had never seen anything like it. I remember everyone in the office taking turns looking in my mouth. Sure that won't scare a young child at all. That tooth hasn't been right since. I guess that means it was never right then?
So you can see that this was just the beginning and I hadn't even seen a decade yet. Now I have 3 more decades and they just got weirder.
I think the earliest of my medical oddities that I remember, I was maybe 3 or 4 years old. I got all these little bumps on my stomach, side, and arm. The doctor had to go look it up in a medical book. I had Molluscum Contagiosum, it is a type of Pox Virus. It shows up as little bumps with a white top. My mother was told to basically pop each one and pull the little white "ball" out, then it would go away and not come back. The problem was, it hurt like hell, and I had a lot of them. I still have the little circular scars on my side and a few on my arm. Back then it was a rarity. Sadly this condition has made a come back into our society and is seem more often these days in kids and adults. It is transmitted through skin to skin contact and fomites, like towels.
My daughter and my son both have had it. My son's went away by itself, pretty quickly. My daughter's however were all over and weren't going away. The doctor told us we could rupture them or wait and they would probably go away in about a year. We opted to rupture them. She had a few really nasty clusters and she would scratch them and they would bleed but she wouldn't get the white stuff out of it, so it didn't go away. I decided to rupture them in a more controlled way, a few at a time, making sure to get all the yuck out, then using antibacterial ointment and band aids. They are all gone now, with no scars.
I am really hoping that she doesn't follow in my odd medical life pattern. However, it appears she might just do that.
The next odd medical thing that I remember is with a tooth. Supposedly I am in a dentist medical book somewhere. I must have been 5 or 6 years old. I went to the dentist. He started poking at a tooth in the back on the left side. He cracked the tooth, so of course had to go in and fix it. Low and behold, my tooth had grown in hollow. He had never seen anything like it. I remember everyone in the office taking turns looking in my mouth. Sure that won't scare a young child at all. That tooth hasn't been right since. I guess that means it was never right then?
So you can see that this was just the beginning and I hadn't even seen a decade yet. Now I have 3 more decades and they just got weirder.
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