For the longest time, I thought I was just about to sit down and get back to blogging. Facebook, in large part took its place. I had resisted for so long, but it became impossible to stay in touch with family and friends without it. Then I started posting my photos and funny kid quotes over there instead... it felt redundant to blog them as well. Anyway, all this time I've been hoping to come back and share the longer stories. But the longer time went on, the longer those stories would be... and who has the time?? Plus, as you'll soon learn, I was sleeping...
Long story short, for five years I've been sick. I didn't know it. Not until about 2 years or so ago when I started feeling very tired... getting constant migraines (literally CONSTANT)... and a host of bizarre maladies. I had intense sugar cravings (weird but true) and I was gaining weight no matter what I did. They tested me for MS, but I didn't have it and my family doctor looked through her crystal ball and said "You are in perimenopause, it sucks." (But I wasn't...). A year later, last fall, I just pretty much succumbed. I could not wake up. Like honestly... could not stay awake. It was crazy. I would be making dinner, and want to lie down on the kitchen floor, so desperately, I'd be crying... just a level of exhaustion I had never ever experienced. I would get the kids to school and then fall asleep for 5 hours and have to force myself to get up to pick them up. Every day. My blood pressure had gone up 30 points, my heart rate was through the roof. I was dizzy, had brain fog so badly I couldn't get my words out. It was terrifying. My doctor said "Hmm, maybe a mono like virus." After another month I couldn't drive, I couldn't focus and I had constant heavy chest pain. I cried and told my doctor something is not right. She said "Your blood work is normal, it is just a long virus." Mr F was traveling for work a week each month, and I have never endured as much stress as trying to raise our girls during that time. I thought I was surely dying, and while Baby was young enough to take it in stride, Kid was extremely aware of what was going on. I would attend a school function and people were shocked at how I looked, like a zombie with no coloring. I couldn't stand up straight or walk faster than a 90 year old woman. I'd sit there in a coat and scarf and gloves (inside) shivering and barely awake. IT WAS INTENSE!! I thought I must have end stage cancer. I would cry myself to sleep, because I couldn't take the stress and I couldn't keep living like that. Like, I honestly knew, a body cannot go on living like this. It was traumatizing. It went on like that for months, in and out of the ER. As it turns out, I have an unusual blood disorder and my body doesn't hold iron but I'm not anemic, in the sense that my hemoglobin doesn't change, so until I got to a phenomenal oncologist-hematologist I kept getting misdiagnosed. Turns out without iron your organs have to work REALLY hard. It was killing me. Even after a year of infusions, and surgery, I'm still dealing with this as a life long issue. I'm better... SO MUCH better. And I'm being monitored constantly so that I don't bottom out again. But that's a lot of where I've been. For five years I was just basically hemorrhaging more iron than I could replace each month until I got down to zero iron stores in my bone marrow. Now, for reasons my hematologist doesn't really understand, despite surgically stopping my periods, I cannot maintain normal iron levels. But I'll live. I just have a bit of a harder time. I have to readjust my expectations of myself and my day. During the school year, I HAVE to nap for several hours. Getting up at 6:30AM and going to bed at 12:30 AM just isn't something I can power through anymore. I still get all the stuff done (you know I do!!), but I'm taking self-shame out of it when I need a down day. I'm working out 5 days a week now. It has been over a year since I was able to exercise. Hell, last year I honestly couldn't go grocery shopping! But unlike my old "more is more", I work out for 30 minutes. Now that I have a massive load of iron in me (for the time being) my doctor said I'll stop gaining weight (it had slowed my metabolism). Unfortunately, that hasn't meant that I naturally started losing weight (unfair!) so I am following the 21 Day fix diet, which I am a big fan of since I think it is extremely well balanced. So that's where I am at. Some days I can do "all the things!" and some days I need to sleep (a lot). I'm able to stay home, which considering my body's reality, is a godsend. I am focused on doing what I need to do for myself in the day, so that I can be 100% on and available for my kids when they are home (and staying up until midnight because I have a high schooler now)...
OH, and I forgot to mention, during this same exact time period we discovered Baby has a rare chest wall deformity. And she need to fly to Denver EVERY SIX WEEKS for treatment from a specialist at the children's hospital out there. So, yeah, the last year was the absolute worst (and the most expensive). Thankfully, we are both done with "active" treatment and doing better.
Tuesday, September 20, 2016
The Catch Up
For the longest time, I thought I was just about to sit down and get back to blogging. Facebook, in large part took its place. I had resisted for so long, but it became impossible to stay in touch with family and friends without it. Then I started posting my photos and funny kid quotes over there instead... it felt redundant to blog them as well. Anyway, all this time I've been hoping to come back and share the longer stories. But the longer time went on, the longer those stories would be... and who has the time?? Plus, as you'll soon learn, I was sleeping...
Long story short, for five years I've been sick. I didn't know it. Not until about 2 years or so ago when I started feeling very tired... getting constant migraines (literally CONSTANT)... and a host of bizarre maladies. I had intense sugar cravings (weird but true) and I was gaining weight no matter what I did. They tested me for MS, but I didn't have it and my family doctor looked through her crystal ball and said "You are in perimenopause, it sucks." (But I wasn't...). A year later, last fall, I just pretty much succumbed. I could not wake up. Like honestly... could not stay awake. It was crazy. I would be making dinner, and want to lie down on the kitchen floor, so desperately I'd be crying... just a level of exhaustion I had never ever experienced. I would get the kids to school and then fall asleep for 5 hours and have to force myself to get up to pick them up. Every day. My blood pressure had gone up 30 points, my heart rate was through the roof. I was dizzy, had brain fog so badly I couldn't get my words out. It was terrifying. My doctor said "Hmm, maybe a mono like virus." After another month I couldn't drive, I couldn't focus and I had constant heavy chest pain. "I cried and told my doctor something is not right. She said "Your blood work is normal, it is just a long virus." Mr F was traveling for work a week each month, and I have never endured as much stress and trying to raise our girls during that time. I thought I was surely dying, and while Baby was young enough to take it in stride, Kid was extremely aware of what was going on. I would attend a school function and people were shocked at how I looked, like a zombie with no coloring. I couldn't stand up straight or walk faster than a 90 year old woman. I'd sit there in a coat and scarf and gloves (inside) shivering and barely awake. IT WAS INTENSE!! I thought I must have end stage cancer. I would cry myself to sleep, because I couldn't take the stress and I couldn't keep living like that. Like, I honestly knew, a body cannot go on living like this. It was traumatizing. It went on like that for months, in and out of the ER. As it turns out, I have an unusual blood disorder and my body doesn't hold iron but I'm not anemic, in the sense that my hemoglobin doesn't change, so until I got to a phenomenal oncologist-hematologist I kept getting misdiagnosed. Turns out without iron your organs have to work REALLY hard. It was killing me. Even after a year of infusions, and surgery, I'm still dealing with this as a life long issue. I'm better... SO MUCH better. And I'm being monitored constantly so that I don't bottom out again. But that's a lot of where I've been. For five years I was just basically hemorrhaging more iron than I could replace each month until I got down to zero iron stores in my bone marrow. Now, for reasons my hematologist doesn't really understand, despite surgically stopping my periods, I cannot maintain normal iron levels. But I'll live. I just have a bit of a harder time. I have to readjust my expectations of myself and my day. During the school year, I HAVE to nap for several hours. Getting up at 6:30AM and going to bed at 12:30 AM just isn't something I can power through anymore. I still get all the stuff done (you know I do!!), but I'm taking self shame out of it when I need a down day. I'm working out 5 days a week now. It has been over a year since I was able to exercise. Hell, last year I honestly couldn't go grocery shopping! But unlike my old more is more, I work out for 30 minutes. Now that I have a massive load of iron in me (for now) my doctor said I'll stop gaining weight (it had slowed my metabolism). Unfortunately, that hasn't meant that I naturally started losing weight (unfair!) so I am following the 21 Day fix diet, which I am a big fan of since I think it is extremely well balanced. So that's where I am at. Some days I can do "all the things!" and some days I need to sleep (a lot). I'm able to stay home, which considering my body's reality, is a god send. I am focused on doing what I need to do for myself in the day, so that I can be 100% on and available for my kids when they are home... and staying up until midnight because I have a high schooler now... :(
OH, and I forgot to mention, during this same exact time period we discovered Baby has a rare chest wall deformity. And she need to fly to Denver EVERY SIX WEEKS for treatment from a specialist at the children's hospital out there. So, yeah, the last year was the absolute worst (and the most expensive). Thankfully, we are both done with "active" treatment and doing better.
Long story short, for five years I've been sick. I didn't know it. Not until about 2 years or so ago when I started feeling very tired... getting constant migraines (literally CONSTANT)... and a host of bizarre maladies. I had intense sugar cravings (weird but true) and I was gaining weight no matter what I did. They tested me for MS, but I didn't have it and my family doctor looked through her crystal ball and said "You are in perimenopause, it sucks." (But I wasn't...). A year later, last fall, I just pretty much succumbed. I could not wake up. Like honestly... could not stay awake. It was crazy. I would be making dinner, and want to lie down on the kitchen floor, so desperately I'd be crying... just a level of exhaustion I had never ever experienced. I would get the kids to school and then fall asleep for 5 hours and have to force myself to get up to pick them up. Every day. My blood pressure had gone up 30 points, my heart rate was through the roof. I was dizzy, had brain fog so badly I couldn't get my words out. It was terrifying. My doctor said "Hmm, maybe a mono like virus." After another month I couldn't drive, I couldn't focus and I had constant heavy chest pain. "I cried and told my doctor something is not right. She said "Your blood work is normal, it is just a long virus." Mr F was traveling for work a week each month, and I have never endured as much stress and trying to raise our girls during that time. I thought I was surely dying, and while Baby was young enough to take it in stride, Kid was extremely aware of what was going on. I would attend a school function and people were shocked at how I looked, like a zombie with no coloring. I couldn't stand up straight or walk faster than a 90 year old woman. I'd sit there in a coat and scarf and gloves (inside) shivering and barely awake. IT WAS INTENSE!! I thought I must have end stage cancer. I would cry myself to sleep, because I couldn't take the stress and I couldn't keep living like that. Like, I honestly knew, a body cannot go on living like this. It was traumatizing. It went on like that for months, in and out of the ER. As it turns out, I have an unusual blood disorder and my body doesn't hold iron but I'm not anemic, in the sense that my hemoglobin doesn't change, so until I got to a phenomenal oncologist-hematologist I kept getting misdiagnosed. Turns out without iron your organs have to work REALLY hard. It was killing me. Even after a year of infusions, and surgery, I'm still dealing with this as a life long issue. I'm better... SO MUCH better. And I'm being monitored constantly so that I don't bottom out again. But that's a lot of where I've been. For five years I was just basically hemorrhaging more iron than I could replace each month until I got down to zero iron stores in my bone marrow. Now, for reasons my hematologist doesn't really understand, despite surgically stopping my periods, I cannot maintain normal iron levels. But I'll live. I just have a bit of a harder time. I have to readjust my expectations of myself and my day. During the school year, I HAVE to nap for several hours. Getting up at 6:30AM and going to bed at 12:30 AM just isn't something I can power through anymore. I still get all the stuff done (you know I do!!), but I'm taking self shame out of it when I need a down day. I'm working out 5 days a week now. It has been over a year since I was able to exercise. Hell, last year I honestly couldn't go grocery shopping! But unlike my old more is more, I work out for 30 minutes. Now that I have a massive load of iron in me (for now) my doctor said I'll stop gaining weight (it had slowed my metabolism). Unfortunately, that hasn't meant that I naturally started losing weight (unfair!) so I am following the 21 Day fix diet, which I am a big fan of since I think it is extremely well balanced. So that's where I am at. Some days I can do "all the things!" and some days I need to sleep (a lot). I'm able to stay home, which considering my body's reality, is a god send. I am focused on doing what I need to do for myself in the day, so that I can be 100% on and available for my kids when they are home... and staying up until midnight because I have a high schooler now... :(
OH, and I forgot to mention, during this same exact time period we discovered Baby has a rare chest wall deformity. And she need to fly to Denver EVERY SIX WEEKS for treatment from a specialist at the children's hospital out there. So, yeah, the last year was the absolute worst (and the most expensive). Thankfully, we are both done with "active" treatment and doing better.
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