It's been 10 days since i started my gluten-free diet. I can't speak for every person with Lupus, but I can speak for myself. There is no doubt in my mind that since starting the dreaded GF diet my joint pain has significantly decreased. I've strayed from the diet a couple times. I did pay the consequences both later that day, and the following day.
I've been doing some research, and there's a lot of studies that link auto-immune diseases with gluten sensitivity. I found one article that said 100% of Lupus patients suffer from food allergies. I'm not sure how true that is, but it is true for me. I have some pretty serious cheese allergies.
I've started running again. Well, more like jogging/walking...but I gotta start somewhere. :P
It seems like my life is finally starting to fall back into place. My circumstances haven't really changed, like I am still having health issues, school is still hanging over my head, etc. but my view of the whole thing has changed.
Everything in life is a process. It takes time to process what's going on with us, especially after we are diagnosed with a disease as scary as Lupus. There's still times that I wish I could press the pause button, and just stop life so that I can deal with stuff one thing at a time. But I'm slowly making my way back to my normal, optimistic self.
A lot has happened since my last post. I've been having some teeth issues to put it mildly. I've had two fillings, and one root canal. Well, technically speaking the first stage of a root canal. My dentist put me on antibiotics and scheduled an appointment with me later this month to finish taking out the rest of my lovely, yet very infected nerve.
Needless to say, I have a very jam-packed month full of doctor's visits of varying kinds. I have a second opinion appointment scheduled the 16th, and a dentist appointment scheduled the 17th for my root canal. With any luck, I won't have to re-visit the dentist for another root canal this month. Or any month for that matter. Though I must say, the pain BEFORE the root canal is by far more painful than the pain during and/or after the root canal.
I went for a strenuous hike with a good friend of mine. We hiked 2 1/2 beautiful miles straight up the side of a mountain. It felt....amazing.
Saturday, June 26, 2010
Monday, June 21, 2010
The Girl Behind the Smile--What I wish people knew about me...
It seems that since my diagnosis, whenever I tell a person that I have Lupus I hear the phrase "But you don't look sick". I can't help but wonder whether or not this is a good thing. Sometimes I'll take it for the compliment that they meant it to be, that I look like a normal 22 year old female. But the bottom line is, it means that I am not the same person I used to be. Trust me, I "act" like a healthy person to the best of my ability. I take on this role as if I will someday win an award for best portrayal of a healthy person. But the downside is that there is no trophy, there is no prize, and I just end up alone with my feelings and everything I have kept inside. I act like I don't care--but I do. I act like I am not scared--but I'm terrified. I act like I'm okay with my diagnosis--but I'm not.
I've always been told that I am outgoing, social, and funny. One person even went so far as to describe me as a "glowing person". I have the ability to walk into a party not knowing anyone, and then walking out with everyone knowing my name. But they don't know the real me. What they see is a very calculated illusion of the healthy girl I want to be. I hate the word "illusion". I hate the negative connotation it brings, but that's what it is.
The illusion started about two years ago when I first started to feel pain. The pain got worse, and keeping my sunny personality got much harder. The illusion blossomed to wearing a bit of foundation to cover up the pale face and dark circles under my eyes--clear-tell signs that I don't sleep well at night anymore.
Now I am finding that my simple illusions have become much more complex. The worse my Lupus gets, the harder it is to keep the healthy persona going. Now I have more difficult choices to make--hair up or down? How much hair is falling out today? Did that clump of hair that was on my pillow leave a noticeable bald spot on my head when it fell out? How cold is it going to be there? Can I get away with wearing gloves to keep my fingers warmer so they don't turn blue?
It seems that now when I meet a new person, before I can even begin to consider whether or not we can be friends I must decide if they can handle my life. Can they handle my energy highs and lows? The billions of things that I am now forced to obsess over on a daily basis? Normal healthy people obsess over TV shows, sports, shopping, movies. I enjoy all of these things as well, but I can't obsess like normal people can over these things. I don't have the time, nor the energy to do so. I have to live my life different than everyone around me. I have to think about just getting up out of bed. I need to think about my medication. It's like I'm living in my own little world, with different issues, priorities, and an entirely different language that only I can speak.
When I speak to another sick person, I feel a level of understanding and pure comfort, around the people who understand both me and the "acting" me. They know me both. They know that with me, you get the real and the fake, simply to survive. My closest friends understand that. They can dig through the illusions and the crap and find me somewhere deep inside.
I once read somewhere about the "secret society of the sick". I am proud, but not lucky, to be a member of this society.
Don't get me wrong. I love my life. I love my friends, and I especially love my family. But there are so many things that I hate.
I hate people seeing me when I am sick, especially when I look sick.
I hate that my beautiful hair is falling out one curly strand at a time.
I hate that I had to take incompletes for my classes because I got too sick to finish up the semester. It makes me feel like an invalid.
I hate that everyone thinks that at any time they talk to me is another opportunity to give unsolicited medical advice.
I hate that I see my doctor's more than what I see some of my friends.
I hate living up to expectations of what a healthy person should be.
I hate living up to expectations of what being sick is.
I hate people who judge, give me advice, or questioning stares of how I handle my diagnosis or my life.
I hate that this is affecting my parents as much as it's affecting me.
I hate seeing pain in my Mother's eyes when she watches me grimace when I stand.
I hate feeling like I am not strong enough, agile enough, or beautiful enough.
I hate that I can't seem to explain to my family, whom I love more than words can describe, how I feel on a regular basis.
Basically, I hate letting people see the effects of my disease. I don't care if they know that I am sick, I just don't want them to have to see it and/or deal with it.
Therefore, I don't let them. In a weird way, this puts me more in control. I get to pick who knows the real me. I decide who to let in. It isn't so much a pride thing for me, as much as I don't want a watered down life. I don't want people automatically giving me the simplest option because they don't think I can handle it. I am a fighter. I always have been, and always will be. But I want to be able to decide if I can handle it. I want you to like me and love me because you think I am a good person, not despite the lupus--but maybe because of it.
I live in two worlds--the world of the healthy and the land of the sick. I am understood in the land of the sick, but I don't have nearly as much fun as I do in the world of the healthy. In the land of the sick I worry, I rest, I take meds, I go to doctor's visits faithfully, and I live a life of pain. When I talk to another sick person, these things are on the surface. It is easy to become depressed, or to start focusing on the negatives.
In the world of the healthy, I am forced to overcome my sickness in order to survive. I play tennis, I run, I laugh, and I have fun. In the world of the healthy, on one of my good days, I can almost forget that I have Lupus. I can almost be a normal person again.
But then the next day happens. And I'm back in the land of the sick.
The bottom line is, I straddle these two worlds. It is not my choice, but it is because this is who I am. I will have my good days and my bad. Sometimes, there will be days when I am the funny, cute girl that is a "glowing person". Then a day later or a week later, I may be that really sick girl whose glowing personality is now a distant memory. I'll be that lump of agony lying on the couch, assuming I was even able to get out of bed that day. It's all about when you catch me.
I am doing my best. I want to live in one world, with one life--no acting. But sometimes I think the illusions are easier for you to live with, so I continue my acting.
There are so many things I wish people knew about me, but I won't say. Because they don't ask and when they do, they aren't truly listening. They just pay no attention to the girl behind the smile...
*Adapted from an online article
I've always been told that I am outgoing, social, and funny. One person even went so far as to describe me as a "glowing person". I have the ability to walk into a party not knowing anyone, and then walking out with everyone knowing my name. But they don't know the real me. What they see is a very calculated illusion of the healthy girl I want to be. I hate the word "illusion". I hate the negative connotation it brings, but that's what it is.
The illusion started about two years ago when I first started to feel pain. The pain got worse, and keeping my sunny personality got much harder. The illusion blossomed to wearing a bit of foundation to cover up the pale face and dark circles under my eyes--clear-tell signs that I don't sleep well at night anymore.
Now I am finding that my simple illusions have become much more complex. The worse my Lupus gets, the harder it is to keep the healthy persona going. Now I have more difficult choices to make--hair up or down? How much hair is falling out today? Did that clump of hair that was on my pillow leave a noticeable bald spot on my head when it fell out? How cold is it going to be there? Can I get away with wearing gloves to keep my fingers warmer so they don't turn blue?
It seems that now when I meet a new person, before I can even begin to consider whether or not we can be friends I must decide if they can handle my life. Can they handle my energy highs and lows? The billions of things that I am now forced to obsess over on a daily basis? Normal healthy people obsess over TV shows, sports, shopping, movies. I enjoy all of these things as well, but I can't obsess like normal people can over these things. I don't have the time, nor the energy to do so. I have to live my life different than everyone around me. I have to think about just getting up out of bed. I need to think about my medication. It's like I'm living in my own little world, with different issues, priorities, and an entirely different language that only I can speak.
When I speak to another sick person, I feel a level of understanding and pure comfort, around the people who understand both me and the "acting" me. They know me both. They know that with me, you get the real and the fake, simply to survive. My closest friends understand that. They can dig through the illusions and the crap and find me somewhere deep inside.
I once read somewhere about the "secret society of the sick". I am proud, but not lucky, to be a member of this society.
Don't get me wrong. I love my life. I love my friends, and I especially love my family. But there are so many things that I hate.
I hate people seeing me when I am sick, especially when I look sick.
I hate that my beautiful hair is falling out one curly strand at a time.
I hate that I had to take incompletes for my classes because I got too sick to finish up the semester. It makes me feel like an invalid.
I hate that everyone thinks that at any time they talk to me is another opportunity to give unsolicited medical advice.
I hate that I see my doctor's more than what I see some of my friends.
I hate living up to expectations of what a healthy person should be.
I hate living up to expectations of what being sick is.
I hate people who judge, give me advice, or questioning stares of how I handle my diagnosis or my life.
I hate that this is affecting my parents as much as it's affecting me.
I hate seeing pain in my Mother's eyes when she watches me grimace when I stand.
I hate feeling like I am not strong enough, agile enough, or beautiful enough.
I hate that I can't seem to explain to my family, whom I love more than words can describe, how I feel on a regular basis.
Basically, I hate letting people see the effects of my disease. I don't care if they know that I am sick, I just don't want them to have to see it and/or deal with it.
Therefore, I don't let them. In a weird way, this puts me more in control. I get to pick who knows the real me. I decide who to let in. It isn't so much a pride thing for me, as much as I don't want a watered down life. I don't want people automatically giving me the simplest option because they don't think I can handle it. I am a fighter. I always have been, and always will be. But I want to be able to decide if I can handle it. I want you to like me and love me because you think I am a good person, not despite the lupus--but maybe because of it.
I live in two worlds--the world of the healthy and the land of the sick. I am understood in the land of the sick, but I don't have nearly as much fun as I do in the world of the healthy. In the land of the sick I worry, I rest, I take meds, I go to doctor's visits faithfully, and I live a life of pain. When I talk to another sick person, these things are on the surface. It is easy to become depressed, or to start focusing on the negatives.
In the world of the healthy, I am forced to overcome my sickness in order to survive. I play tennis, I run, I laugh, and I have fun. In the world of the healthy, on one of my good days, I can almost forget that I have Lupus. I can almost be a normal person again.
But then the next day happens. And I'm back in the land of the sick.
The bottom line is, I straddle these two worlds. It is not my choice, but it is because this is who I am. I will have my good days and my bad. Sometimes, there will be days when I am the funny, cute girl that is a "glowing person". Then a day later or a week later, I may be that really sick girl whose glowing personality is now a distant memory. I'll be that lump of agony lying on the couch, assuming I was even able to get out of bed that day. It's all about when you catch me.
I am doing my best. I want to live in one world, with one life--no acting. But sometimes I think the illusions are easier for you to live with, so I continue my acting.
There are so many things I wish people knew about me, but I won't say. Because they don't ask and when they do, they aren't truly listening. They just pay no attention to the girl behind the smile...
*Adapted from an online article
Sunday, June 20, 2010
Hope at the end of the tunnel...
It never ceases to amaze me at the number of people with Lupus who are long-distance runners. There's a lady by the name of Kelly who is an ultra-runner. Two others who run half-marathons, one having ran multiple marathons. And then there's me. Who used to be able to run half-marathons, and has every intention of getting to that point again.
I went "running" today. I put it in quotation marks because it was more of speed-walking with a few spouts of jogging than an all-out run. While the GF diet is helping tremendously, the joint pain is still there when I push things. It might be because I haven't ran hardly at all the past few months since my diagnosis. Actually, since even before then. It's probably been since October that I have stretched my legs and ran as hard as I possibly could. That was when things started to go down-hill really fast for me.
I've played tennis a lot this summer, but I hold myself back. I guess part of me is afraid that I'll do something to hurt myself worse than what I already am. For the first time in my life I haven't left it all out on the court.
I have a second opinion appointment scheduled for mid-July. I can't help but hope that she says something different than the first doctor. That maybe she tells me I have some curable disease, and all I have to do is get a shot to fix it. Or take these medicines to fix it. Then I can wake up the next day feeling like a normal young adult.
There are some days that I lie in bed contemplating whether or not living to see tomorrow is actually worth enduring the pain of today. Today is the third morning in a row that I woke up in minimal pain. I actually woke up with a smile on my face. I can't even remember the last day that happened. It seems like I've been in constant pain since....well, I was going to say October, but it's been since before that. I honestly can't remember the first day I woke up in pain. Pain has started to become an expected part of my life.
I went "running" today. I put it in quotation marks because it was more of speed-walking with a few spouts of jogging than an all-out run. While the GF diet is helping tremendously, the joint pain is still there when I push things. It might be because I haven't ran hardly at all the past few months since my diagnosis. Actually, since even before then. It's probably been since October that I have stretched my legs and ran as hard as I possibly could. That was when things started to go down-hill really fast for me.
I've played tennis a lot this summer, but I hold myself back. I guess part of me is afraid that I'll do something to hurt myself worse than what I already am. For the first time in my life I haven't left it all out on the court.
I have a second opinion appointment scheduled for mid-July. I can't help but hope that she says something different than the first doctor. That maybe she tells me I have some curable disease, and all I have to do is get a shot to fix it. Or take these medicines to fix it. Then I can wake up the next day feeling like a normal young adult.
There are some days that I lie in bed contemplating whether or not living to see tomorrow is actually worth enduring the pain of today. Today is the third morning in a row that I woke up in minimal pain. I actually woke up with a smile on my face. I can't even remember the last day that happened. It seems like I've been in constant pain since....well, I was going to say October, but it's been since before that. I honestly can't remember the first day I woke up in pain. Pain has started to become an expected part of my life.
Saturday, June 19, 2010
Confusion at the Grocery Store, with no white knight....
So my trip to the grocery store took slightly longer than originally planned. I was planning on baking some bread tonight and going for a run...but after the 3 hour shopping trip I'm plum pooped.
I'm not going to lie. I'm rather bummed that no handsome, single knight in shining armor came to save me and show me where the sweet white rice flour was. For the record, I have yet to find that flour. Four stores, three hours, some personal visits with customer service, and a lot of research later I have officially decided to just go with the substitute for the flour. The only reason I still believe this exists, is because I found it in a Google search. I am however, fully convinced that it does not exist in any grocery store within a 45 minute radius of my house.
I tried GF spaghetti a couple days ago. It kind of reminded me of this awful stuff I ate once when I was in China a couple years ago. It was so bad that the memory still haunts me to this day. I think if I add some oil and salt to the water next time while I'm boiling the spaghetti, it'll help tremendously. At least that's what I keep telling myself. Spaghetti is a staple in my diet, and I'm not about to give it up.
For the record, my joint pain has all but disappeared. AND it's supposed to rain tonight. Usually when the weather changes I'm in a boat load of pain. Now that I know a GF diet helps, I can't help but wonder what it is in the gluten that makes joints inflame and hurt.
I'm not going to lie. I'm rather bummed that no handsome, single knight in shining armor came to save me and show me where the sweet white rice flour was. For the record, I have yet to find that flour. Four stores, three hours, some personal visits with customer service, and a lot of research later I have officially decided to just go with the substitute for the flour. The only reason I still believe this exists, is because I found it in a Google search. I am however, fully convinced that it does not exist in any grocery store within a 45 minute radius of my house.
I tried GF spaghetti a couple days ago. It kind of reminded me of this awful stuff I ate once when I was in China a couple years ago. It was so bad that the memory still haunts me to this day. I think if I add some oil and salt to the water next time while I'm boiling the spaghetti, it'll help tremendously. At least that's what I keep telling myself. Spaghetti is a staple in my diet, and I'm not about to give it up.
For the record, my joint pain has all but disappeared. AND it's supposed to rain tonight. Usually when the weather changes I'm in a boat load of pain. Now that I know a GF diet helps, I can't help but wonder what it is in the gluten that makes joints inflame and hurt.
Gluten-free Living
I have found a God-send. The lady is outstanding. Her recipes are oober yummy, easy to make, and did I mention they taste good?
The last time I tried a gluten-free diet, I felt like I was starving myself. I hadn't done a lot of research before trying it, and had absolutely NO idea there were GF alternatives to the bread and pasta that I love.
I felt like my running time had decreased, simply because I wasn't getting the carbs that my body is used to feeding off of when I run. But times have changed. Education is power.
This is my 3rd day of a gluten-free diet and I already feel the difference. I went from being in constant pain of about an 8.7 (on a scale of 1-10), to about a 1.5. I can handle this. My optimism is coming back, and I even woke up with a smile on my face this morning. :-)
But I highly recommend you check out this lady's blog. Even if you don't need to be on a GF diet, some of these recipes are mouth-watering. I made her GF peanut butter granola bars the other day, and my roomies have just about devoured it all. I think they enjoy her recipes just as much as I do.
I'm going to try out the GF bread recipe later today. You should see my grocery list. It's filled with brown rice flour, xanthan gum (whatever that is...), sweet rice flour. I had no idea half of these things existed. Grocery shopping may take a wee bit longer this time around. lol. I can see it now--me wandering up and down the aisles in pure confusion, some handsome, single man coming to my rescue. Aaahhh....twill be wonderful.
But here's the link to her blog. Check it out if you have time.
http://glutenfree.wordpress.com/
The last time I tried a gluten-free diet, I felt like I was starving myself. I hadn't done a lot of research before trying it, and had absolutely NO idea there were GF alternatives to the bread and pasta that I love.
I felt like my running time had decreased, simply because I wasn't getting the carbs that my body is used to feeding off of when I run. But times have changed. Education is power.
This is my 3rd day of a gluten-free diet and I already feel the difference. I went from being in constant pain of about an 8.7 (on a scale of 1-10), to about a 1.5. I can handle this. My optimism is coming back, and I even woke up with a smile on my face this morning. :-)
But I highly recommend you check out this lady's blog. Even if you don't need to be on a GF diet, some of these recipes are mouth-watering. I made her GF peanut butter granola bars the other day, and my roomies have just about devoured it all. I think they enjoy her recipes just as much as I do.
I'm going to try out the GF bread recipe later today. You should see my grocery list. It's filled with brown rice flour, xanthan gum (whatever that is...), sweet rice flour. I had no idea half of these things existed. Grocery shopping may take a wee bit longer this time around. lol. I can see it now--me wandering up and down the aisles in pure confusion, some handsome, single man coming to my rescue. Aaahhh....twill be wonderful.
But here's the link to her blog. Check it out if you have time.
http://glutenfree.wordpress.com/
Thursday, June 17, 2010
Yesterday I left work shortly after I started puking in the trash can behind the counter. My manager's hastily shoved me out the door before anyone was able to see their friendly cashier throwing up. Yay for food allergies!
The only thing I can think of is that there was some type of cross-contamination with my lunch. Something, somewhere, touched cheese and then touched my food. I must say, I've been working there for almost two years and this is the first time I've ever had any problems. Needless to say, I will be packing my own food from now on. I have no desire to deal with that ever again.
I'm still seriously considering the gluten-free diet again. Still doing research to figure out what I can and cannot eat. I feel like the last time I tried it out, I was hungry ALL the time. I felt like I was starving myself. I ate stuff, I just never felt full. Also, when I was running I felt sluggish. I don't like either one of those feelings. So if I do this again, I'm going to do it in the best and healthiest way possible. There has got to be filling foods out there that are gluten-free.
The only thing I can think of is that there was some type of cross-contamination with my lunch. Something, somewhere, touched cheese and then touched my food. I must say, I've been working there for almost two years and this is the first time I've ever had any problems. Needless to say, I will be packing my own food from now on. I have no desire to deal with that ever again.
I'm still seriously considering the gluten-free diet again. Still doing research to figure out what I can and cannot eat. I feel like the last time I tried it out, I was hungry ALL the time. I felt like I was starving myself. I ate stuff, I just never felt full. Also, when I was running I felt sluggish. I don't like either one of those feelings. So if I do this again, I'm going to do it in the best and healthiest way possible. There has got to be filling foods out there that are gluten-free.
Friday, June 11, 2010
Back to my roots....
Yesterday was an unbelievably rough day. I had my rheumatologist appointment. For some reason, whenever I go to that office, I walk out feeling down and depressed. It seems like everyone in there sits and complains about their condition. Many people will groan out loud, and will share their sob stories in the waiting room.
But my doctor has decided not to treat my Lupus as of right now. I can't help but feel like he's not planning on treating it until I am lying in a hospital bed with failed kidney's. I'd much rather start taking medication now, than to wait until it's too late to live a normal life. I don't feel like my doctor listens to me, nor really cares about me as a human being...let alone one of his patients.
Needless to say, I decided yesterday to fire my rheumatologist and hire another one. So I spent the better part of the day trying to get his office to fax over my records. I've BEEN trying to get them to fax over my records for the last 3 weeks. My appointment yesterday was the last straw.
I'm afraid that I lost what sanity I was clinging onto. I have a lot of apologies to make today, some to friends and some to my poor roommates who watched me stomp in and out of the house yesterday like some crazed women.
But I've learned that a good support system is what gets people through hard times.
I'm also tossing around the idea of going on a gluten-free diet again. It helped the joint pain tremendously, I'm just not sure if I have the will power to do it successfully. Thinking of a world without Oreo's, brownies, and bread makes me feel slightly depressed. But the benefits of living in such a world--waking up in little to no pain, being able to stand up without grimacing, being able to sleep all night long without being woken up due to pain sounds amazingly wonderful.
But my doctor has decided not to treat my Lupus as of right now. I can't help but feel like he's not planning on treating it until I am lying in a hospital bed with failed kidney's. I'd much rather start taking medication now, than to wait until it's too late to live a normal life. I don't feel like my doctor listens to me, nor really cares about me as a human being...let alone one of his patients.
Needless to say, I decided yesterday to fire my rheumatologist and hire another one. So I spent the better part of the day trying to get his office to fax over my records. I've BEEN trying to get them to fax over my records for the last 3 weeks. My appointment yesterday was the last straw.
I'm afraid that I lost what sanity I was clinging onto. I have a lot of apologies to make today, some to friends and some to my poor roommates who watched me stomp in and out of the house yesterday like some crazed women.
But I've learned that a good support system is what gets people through hard times.
I'm also tossing around the idea of going on a gluten-free diet again. It helped the joint pain tremendously, I'm just not sure if I have the will power to do it successfully. Thinking of a world without Oreo's, brownies, and bread makes me feel slightly depressed. But the benefits of living in such a world--waking up in little to no pain, being able to stand up without grimacing, being able to sleep all night long without being woken up due to pain sounds amazingly wonderful.
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