Greetings all. Today is the first day in a week I haven’t had a debilitating migraine. So, I apologize for not posting. I considered writing while on my “natural migraine remedy” given that my entire week last week consisted of pain, followed by excessive laughter and eating, but was unsure it would be coherent. The migraines had been hitting everyday by about 9-9:30 am and hanging out all day. I’ll be glad when the evil party demons finally end their migraine march in my head. It can last anywhere from days to months. I use to be able to whip out the Imatrex from bags, bras, socks, a secret compartment in my underwear, whatever. I was ready to combat those little demon bastards and kick em out before I was laid out. Um, well, a lot of the time anyway. That was four or five years ago. I haven’t been able to get back into the doctor’s office yet to get ahead of this nonsense, so I’m stuck with my Washington approved “natural remedy” until tomorrow. Honestly, my “assets” can’t afford to be eating so much while being couch bound. These headaches can hang out for two or more days but I generally get a day or so off after a while and am functional. I took my boys on two decent little hikes Saturday before last and last Monday (5.5 miles Sat, mostly in lava tubes and 6.5 miles of super easy up and down hills to a little waterfall and back). But, nothing but pain and Purple Haze until today.
I finally got Imitrex Friday, but it didn’t help me any. A migraine was trying to hit today actually and finally the Imitrex helped. Why didn’t it help last week? It was my high estrogen week or my “cycle”. Estrogen and Lupus do NOT like each other so when my estrogen rises, it’s the Hatfields and McCoys showdown in my body for a solid week. Guess what? I lost my baby condo in ‘09 so if I don’t do ovulation strips here and there, I don’t always know if I’m hormonal or just being a bitch. It definitely makes me step back and analyze why I just snapped at my 14-year-old son. More often than not, it was justified. Then, bam! It all becomes clear as the Lupus monster and Ms. Evil Estrogen slam against each other in the mosh pit that is my body.
Today I really want to talk about something everyone with Lupus has to deal with, specialists. Duh duh duh! So, right now, I have my family practitioner, who apparently is leaving at the end of the month, that‘s two in one year. I also have a rheumatologist, digestive specialist, pain specialist, I’m working on getting a new neurologist, and I’ve been given the option of a dermatologist but turned it down. Many Lupies end up with a nephrologist and I’m expecting I’ll eventually be there. My kidneys seem to be dropping more and I can’t maintain normal potassium levels. I combat this by drinking a daily Pedialyte. The most difficult thing about specialists for me, is both their inability to understand Lupus and the fact that half the time I look crazy because I’m in crisis when I make an appointment and it’s often over before I get to said appointment. Oh boy is that fun! Nothing sounds better to a doctor than hearing, well, I needed you at the time, but now that I’m here, I don’t. Shrug.
My stomach wasn’t working for a couple months but by the time I finally got my stomach emptying test, things were back to normal so I looked crazy. I had to live on pureed food to prevent myself from vomiting, but of course, it took a couple months for me to get the appointments and complete all the tests so, my system stabilized before it was all done. What do I get from that? That look. Um, hello crazy hypochondriac lady, how can I get you out of my office as quickly as possible while also pretending to care?
People who specialize in a bodily system, understands the diseases associated with that system. Lupus is a disease that can attack all systems, but most doctors don’t understand much about lupus so when you have issues pertaining to their realm of expertise due to lupus attacking it, most specialists, in my experience, have no idea what to do. Lupus is a fickle, erratic disease that likes to wax and wane. Sometimes Lupus will attack my joints for a couple days, sometimes for a couple months. Getting help, when needed, can be exceedingly difficult and can feel impossible. Moreover, while I have prednisone for flare ups, I don’t have what I need to deal with crisis situations in my G.I. tract like temporary gastro paresis (because that doesn‘t exists apparently), IBS or IBS-C. See, I first have to prove it exists and I can’t always succeed at that when I can’t get the tests done in time to catch it. If I could, I’d have special “first aide kits” per each system Lupus has attacked regularly. That’s a lot of medications and/or natural remedies to be holding on to; but, that’s my life now.
I just found out my doctor is leaving. This man is in charge of putting in the referrals I need in order to get to specialists, hoping I can get there in time for them to see the symptoms, and making sure I’m getting what I need to sustain the best possible quality of life. And he’s leaving! That is the second doctor this year and it takes time to break in a new doctor. I have to prove I’m a person with a disease, not another pain in the ass to contend with.
To be honest, I shop for doctors. I will interview them on our first visit and move on if I feel the person and I are not compatible. My life is hard enough without having a crappy doctor I’ll end up fighting with so I can get what I need. Further, I am my biggest advocate and my give a f@#$ level regarding honesty and sub par doctors is nil so things can get “colorful” and rather entertaining for spectators, as I go “Full Brittany” (Thank you West Coast, what’s her name from Ridiculousness) because they do stupid things like question my diagnosis, which has been confirmed by more than one doctor. I’m not kidding, if I get angry at a doctor, I play with em. I mean, might as well make things fun if I’m stuck dealing with someone who doesn‘t want to deal with me. I’ll request completely ridiculous tests, and I’ll ask impossible questions like, “Is it my thyroid, because I don’t have a uterus?” or I’ll ask why they think they’re smarter than my previous doctors and specialist. That makes them squirm. If I’ve asked you for a uric acid test because my hands hurt, I’m the bear, you’re the bunny, and I’m batting you around for fun because you screwed up.
Well, I feel as though I may have gained an inch or two from last week. Perhaps it’s water…? It’s not. So, I figured out some easy “life hacks” to help me maintain weight while I’m down and to help me lose it when I’m not. Diets suck. They’re restrictive and stressful. Plus, unless I have 10 pounds to lose in two weeks to make weight for a fight, I never stick to them. Having Lupus, I’ve been turned down by more than one nutritionist because it’s so out of most people’s wheelhouse.
I threw an early birthday party for my mother when she was here and we had some of the veggie tray left. We placed it on the island in the kitchen and everything except the celery was gone quickly. Then, it dawned on me; putting out fresh fruits and veggies party style in a big tray that everyone can pick at and munch on is a great and easy way to make sure everyone’s eating enough produce every day. Kids want fast and accessible and frankly, so do I. That tray is like an invisible force field keeping the kids out of the fridge and pantry half the day and all I have to do is dump my perishable produce onto it once or twice a day. I mean, I cut up the cucumber, broccoli, and oranges but I’ve had at least 20 servings of fruits and veggies on that tray today and they are almost gone. This will also help to reduce the amount of produce that spoils so less money down the drain.
I don’t buy fruit juices or soda. I get carbonated water instead and mix it with macerated fruit or freshly juiced produce and Stevia. This cuts down on sugar intake and also, wasted produce. Instead of getting the boys a fun cereal, I get puffed brown rice cereal and guess what!?! They love it. A little Stevia and milk and they’re happy.
I finally got a Fitbit and I already love it. I log my food and it makes me behave because I don’t want to admit to eating anything naughty. My goal is set to 10,000 steps and even on bad days I can walk in place here and there or get on my treadmill to walk slowly while watching Game of Thrones (redirection on myself). I am super competitive, even with myself, and I view my goal as a challenge and CHALLENGE ACCEPTED!!!! If you get it, send me a request and we can “Lupiesize” together (you don’t have to have Lupus to join me).
So, does anyone else have any good suggestions regarding nutritional needs and weight management for people with Lupus or other disabilities or any fun specialist stories to share? I’d love to read them.
I finally got Imitrex Friday, but it didn’t help me any. A migraine was trying to hit today actually and finally the Imitrex helped. Why didn’t it help last week? It was my high estrogen week or my “cycle”. Estrogen and Lupus do NOT like each other so when my estrogen rises, it’s the Hatfields and McCoys showdown in my body for a solid week. Guess what? I lost my baby condo in ‘09 so if I don’t do ovulation strips here and there, I don’t always know if I’m hormonal or just being a bitch. It definitely makes me step back and analyze why I just snapped at my 14-year-old son. More often than not, it was justified. Then, bam! It all becomes clear as the Lupus monster and Ms. Evil Estrogen slam against each other in the mosh pit that is my body.
Today I really want to talk about something everyone with Lupus has to deal with, specialists. Duh duh duh! So, right now, I have my family practitioner, who apparently is leaving at the end of the month, that‘s two in one year. I also have a rheumatologist, digestive specialist, pain specialist, I’m working on getting a new neurologist, and I’ve been given the option of a dermatologist but turned it down. Many Lupies end up with a nephrologist and I’m expecting I’ll eventually be there. My kidneys seem to be dropping more and I can’t maintain normal potassium levels. I combat this by drinking a daily Pedialyte. The most difficult thing about specialists for me, is both their inability to understand Lupus and the fact that half the time I look crazy because I’m in crisis when I make an appointment and it’s often over before I get to said appointment. Oh boy is that fun! Nothing sounds better to a doctor than hearing, well, I needed you at the time, but now that I’m here, I don’t. Shrug.
My stomach wasn’t working for a couple months but by the time I finally got my stomach emptying test, things were back to normal so I looked crazy. I had to live on pureed food to prevent myself from vomiting, but of course, it took a couple months for me to get the appointments and complete all the tests so, my system stabilized before it was all done. What do I get from that? That look. Um, hello crazy hypochondriac lady, how can I get you out of my office as quickly as possible while also pretending to care?
People who specialize in a bodily system, understands the diseases associated with that system. Lupus is a disease that can attack all systems, but most doctors don’t understand much about lupus so when you have issues pertaining to their realm of expertise due to lupus attacking it, most specialists, in my experience, have no idea what to do. Lupus is a fickle, erratic disease that likes to wax and wane. Sometimes Lupus will attack my joints for a couple days, sometimes for a couple months. Getting help, when needed, can be exceedingly difficult and can feel impossible. Moreover, while I have prednisone for flare ups, I don’t have what I need to deal with crisis situations in my G.I. tract like temporary gastro paresis (because that doesn‘t exists apparently), IBS or IBS-C. See, I first have to prove it exists and I can’t always succeed at that when I can’t get the tests done in time to catch it. If I could, I’d have special “first aide kits” per each system Lupus has attacked regularly. That’s a lot of medications and/or natural remedies to be holding on to; but, that’s my life now.
I just found out my doctor is leaving. This man is in charge of putting in the referrals I need in order to get to specialists, hoping I can get there in time for them to see the symptoms, and making sure I’m getting what I need to sustain the best possible quality of life. And he’s leaving! That is the second doctor this year and it takes time to break in a new doctor. I have to prove I’m a person with a disease, not another pain in the ass to contend with.
To be honest, I shop for doctors. I will interview them on our first visit and move on if I feel the person and I are not compatible. My life is hard enough without having a crappy doctor I’ll end up fighting with so I can get what I need. Further, I am my biggest advocate and my give a f@#$ level regarding honesty and sub par doctors is nil so things can get “colorful” and rather entertaining for spectators, as I go “Full Brittany” (Thank you West Coast, what’s her name from Ridiculousness) because they do stupid things like question my diagnosis, which has been confirmed by more than one doctor. I’m not kidding, if I get angry at a doctor, I play with em. I mean, might as well make things fun if I’m stuck dealing with someone who doesn‘t want to deal with me. I’ll request completely ridiculous tests, and I’ll ask impossible questions like, “Is it my thyroid, because I don’t have a uterus?” or I’ll ask why they think they’re smarter than my previous doctors and specialist. That makes them squirm. If I’ve asked you for a uric acid test because my hands hurt, I’m the bear, you’re the bunny, and I’m batting you around for fun because you screwed up.
Well, I feel as though I may have gained an inch or two from last week. Perhaps it’s water…? It’s not. So, I figured out some easy “life hacks” to help me maintain weight while I’m down and to help me lose it when I’m not. Diets suck. They’re restrictive and stressful. Plus, unless I have 10 pounds to lose in two weeks to make weight for a fight, I never stick to them. Having Lupus, I’ve been turned down by more than one nutritionist because it’s so out of most people’s wheelhouse.
I threw an early birthday party for my mother when she was here and we had some of the veggie tray left. We placed it on the island in the kitchen and everything except the celery was gone quickly. Then, it dawned on me; putting out fresh fruits and veggies party style in a big tray that everyone can pick at and munch on is a great and easy way to make sure everyone’s eating enough produce every day. Kids want fast and accessible and frankly, so do I. That tray is like an invisible force field keeping the kids out of the fridge and pantry half the day and all I have to do is dump my perishable produce onto it once or twice a day. I mean, I cut up the cucumber, broccoli, and oranges but I’ve had at least 20 servings of fruits and veggies on that tray today and they are almost gone. This will also help to reduce the amount of produce that spoils so less money down the drain.
I don’t buy fruit juices or soda. I get carbonated water instead and mix it with macerated fruit or freshly juiced produce and Stevia. This cuts down on sugar intake and also, wasted produce. Instead of getting the boys a fun cereal, I get puffed brown rice cereal and guess what!?! They love it. A little Stevia and milk and they’re happy.
I finally got a Fitbit and I already love it. I log my food and it makes me behave because I don’t want to admit to eating anything naughty. My goal is set to 10,000 steps and even on bad days I can walk in place here and there or get on my treadmill to walk slowly while watching Game of Thrones (redirection on myself). I am super competitive, even with myself, and I view my goal as a challenge and CHALLENGE ACCEPTED!!!! If you get it, send me a request and we can “Lupiesize” together (you don’t have to have Lupus to join me).
So, does anyone else have any good suggestions regarding nutritional needs and weight management for people with Lupus or other disabilities or any fun specialist stories to share? I’d love to read them.
💖 ~Lana
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