I wanted to take a lil' bit of a different direction for this entry. I wanted to do some unplanned free writing.
Currently I am at my hometown's library sitting on a public computer. The man next to me has to be 70 something years old. I am laughing on the inside because he is using a pretty ginormous font to type with on this computer. He probably thinks I'm creepy because I keep looking over at him. I look at him. I kind of want to freeze him for a few minutes so I can take a better look at him. Take a good look at all of the lines and wrinkles on his face. I'd like to sit him down and ask him some questions. Every elderly person I meet I'd like to sit them down and ask them some questions. The person doesn't have to be elderly for me to want to have a convo with them, but the elderly have always really peeked my interest.
Well for one thing not everybody gets to reach such a ripe age. Their genetics and lifestyle have allowed them to survive. Why? Why has this man survived? What has he survived? I don't know his medical history. Maybe he survived cancer :D Maybe he has an invisible autoimmune disease. I don't think so though, he's moving around very good for his age, he's computer savvy, and he seems to be still making himself a productive member of society. Whatever he was typing up wasn't for pleasure, it was for some sort of business. I wonder what kind of life this man has lived. Was it a very stressful one? What was his childhood like? Does he have children? He is not wearing a wedding ring. Has he endured a divorce? I wonder what he looked like when he was younger. Was he a pretty good looking man? What was his moral system? Is he religious? What is his favorite meal? Obviously there are endless and endless questions that I could ask this man. He's lived on this earth for a very long time thus far. He's experienced so much.
One of the most interesting parts of working at a nursing home is taking a look at the wrinkled, aged, lived person in that nursing home bed and then looking at their framed pictures of them younger. It's really something! It doesn't take me or anyone else to bring to anyone's attention that time is indeed fleeting! Our existence really is far more tenuous than we sometimes realize. We should enjoy it. We should take care of ourselves. And we really should take the time to reflect our lives from time to time and to make sure we're living it right. In my case I was forced to slow down and forced to really appreciate all of da small stuffs. It's benefited me greatly. And to be slowly getting it all back. WOW THAT'S SO AWESOME. My whole life is changed. My whole direction. Let's all hug now in lou of this sentimental blog moment. lol. Listening to The Flaming Lips/In the Morning of the Magicians has aided me in attempting to provide this sentimental blog moment. A special thanks to The Flaming Lips. :) <3
Tuesday, August 9, 2011
Friday, August 5, 2011
My Current Treatment
So what is my current treatment?? Now I am no doctor, so I am speaking from experience, from what I have learned from my doctor, and from what I have read. I will be adding sources to all of this.
Well I was diagnosed with Celiac Disease after being gene tested. I am a carrier of the gene.
Now this is important!!! I originally came out negative for Celiac Disease. When getting tested for Celiac Disease they will look at your gliadin levels. Some labs have cut offs for what level of gliadin they will test for. Some cut off at 20. My gliadin level is currently a 5. This is *actually* very low. But I am still sick. I am very sensitive to gluten. My doctor is very sensitive to gluten as well. When he is a 5, he is very, very sick. Some people are very, very healthy when they are a 5. So the gene testing is much, much more reliable. There are other forms of testing for Celiac Disease, but the gene testing although expensive is the most reliable. If you carry the gene, you carry the gene. :p
So naturally I would be treated with a gluten free diet. Unfortunately I have struggled with many, many different allergies. I was allergy tested, but I have found allergy testing to be somewhat unreliable. I'll get into that later. Some of what I am allergic to caused outward and obvious reactions (rash on entire body, numbness and tingling around lips or throat). Others were not causing such obvious reactions. So it is hard to tell what I am allergic to exactly. Allergies cause an immunological reaction. If my immune system is going to get better I need to cut out what is weakening it. For me it is pretty obviously allergies. For instance after I have an allergic reaction I am very, very tired. It just weakens my whole system. The best way that I have found to recover from an allergic reaction is to take a Clariton (gluten free- at least it is at the moment), stay up for a while to be sure that I do not react anymore (obviously if the reaction is serious enough- affecting the airway and breathing one should definitely go to the emergency room), and then just sleep and sleep.
Because I do not know what I am allergic to exactly I have worked to simplify my diet. My doctor told me to just eat beef and rice. I eat white rice because it is higher in Omega 3's (I will get into that later) and grass fed beef because my body type will not allow me to eat corn and soy fed beef for some reason. When I eat non-grass fed beef I find blood in my stool and become INCREDIBLY fatigued after about 10 mins after eating the beef. So I was pretty happy when I discovered that I can digest grass fed beef. I purchase it from a local farm in mass quantity. It is a bit pricier. I was drinking bottled water, but I was having stomach aches and problems with different bottled waters. I went to a celiac forum and discovered that other people were having problems with this. My guesss is possible cross contamination in the factory. I never would have figured this out, but when you are just eating rice, beef, and drinking water it makes it much easier to find the culprit. So I bought a safe, metal water bottle and only drink water from the faucet.
So I eat grass fed beef and white rice that is labeled gluten free. The label gluten free is integral. I was eating Minute Rice from a regular grocery store, but I was not getting better. There was a recent study that shows although a food may be inherently gluten free, if it is not labeled gluten free than there is most likely cross contamination. I found this to very much be true. I also take supplements to compensate for all that I am missing from my diet. It is important to be monitored while taking supplements. You do not want to be overdosing on vitamins, that could be very, very bad. And I drink water only from my water bottle and the faucet water. I also use Dermassage dish washing liquid (as of now it is gluten free- there is a small chance of cross contamination apparently :/- I called the factory.) I use separate dishes from everyone else and keep them in a big plastic container to avoid cross contamination. Naturally I wash them with a separate rag as well. I also take an antibiotic for strept throat.
Every person is different, every celiac is different. As my doctor says, "Your body is smarter than I am." But in general eating beef and rice works for most people. The difference for me was that I NEED to eat the grass fed beef for some reason.
So yes, this means that I do not eat at any restaurants!!!
...yes, yes :p this does effect my social/dating life (believe me there will be a blog on this)...It also makes it nearly impossible to hide my illness. Which is not necessarily a bad thing. People care, they ask questions, they want to know. People feel "bad" eating in front of me. But honestly after a while eating out with other people (rather them eating and me hanging out) is really not a problem. You just get used to it, you don't crave the food any longer. I just hate that it makes others feel awkward. I mean a lot of society revolves around food. I really realize this now. But hey I definitely think good health is worth the sacrifice and that there are many other pleasures in life aside from food. And the rice and beef does not taste bad!
Well I was diagnosed with Celiac Disease after being gene tested. I am a carrier of the gene.
Now this is important!!! I originally came out negative for Celiac Disease. When getting tested for Celiac Disease they will look at your gliadin levels. Some labs have cut offs for what level of gliadin they will test for. Some cut off at 20. My gliadin level is currently a 5. This is *actually* very low. But I am still sick. I am very sensitive to gluten. My doctor is very sensitive to gluten as well. When he is a 5, he is very, very sick. Some people are very, very healthy when they are a 5. So the gene testing is much, much more reliable. There are other forms of testing for Celiac Disease, but the gene testing although expensive is the most reliable. If you carry the gene, you carry the gene. :p
So naturally I would be treated with a gluten free diet. Unfortunately I have struggled with many, many different allergies. I was allergy tested, but I have found allergy testing to be somewhat unreliable. I'll get into that later. Some of what I am allergic to caused outward and obvious reactions (rash on entire body, numbness and tingling around lips or throat). Others were not causing such obvious reactions. So it is hard to tell what I am allergic to exactly. Allergies cause an immunological reaction. If my immune system is going to get better I need to cut out what is weakening it. For me it is pretty obviously allergies. For instance after I have an allergic reaction I am very, very tired. It just weakens my whole system. The best way that I have found to recover from an allergic reaction is to take a Clariton (gluten free- at least it is at the moment), stay up for a while to be sure that I do not react anymore (obviously if the reaction is serious enough- affecting the airway and breathing one should definitely go to the emergency room), and then just sleep and sleep.
Because I do not know what I am allergic to exactly I have worked to simplify my diet. My doctor told me to just eat beef and rice. I eat white rice because it is higher in Omega 3's (I will get into that later) and grass fed beef because my body type will not allow me to eat corn and soy fed beef for some reason. When I eat non-grass fed beef I find blood in my stool and become INCREDIBLY fatigued after about 10 mins after eating the beef. So I was pretty happy when I discovered that I can digest grass fed beef. I purchase it from a local farm in mass quantity. It is a bit pricier. I was drinking bottled water, but I was having stomach aches and problems with different bottled waters. I went to a celiac forum and discovered that other people were having problems with this. My guesss is possible cross contamination in the factory. I never would have figured this out, but when you are just eating rice, beef, and drinking water it makes it much easier to find the culprit. So I bought a safe, metal water bottle and only drink water from the faucet.
So I eat grass fed beef and white rice that is labeled gluten free. The label gluten free is integral. I was eating Minute Rice from a regular grocery store, but I was not getting better. There was a recent study that shows although a food may be inherently gluten free, if it is not labeled gluten free than there is most likely cross contamination. I found this to very much be true. I also take supplements to compensate for all that I am missing from my diet. It is important to be monitored while taking supplements. You do not want to be overdosing on vitamins, that could be very, very bad. And I drink water only from my water bottle and the faucet water. I also use Dermassage dish washing liquid (as of now it is gluten free- there is a small chance of cross contamination apparently :/- I called the factory.) I use separate dishes from everyone else and keep them in a big plastic container to avoid cross contamination. Naturally I wash them with a separate rag as well. I also take an antibiotic for strept throat.
Every person is different, every celiac is different. As my doctor says, "Your body is smarter than I am." But in general eating beef and rice works for most people. The difference for me was that I NEED to eat the grass fed beef for some reason.
So yes, this means that I do not eat at any restaurants!!!
...yes, yes :p this does effect my social/dating life (believe me there will be a blog on this)...It also makes it nearly impossible to hide my illness. Which is not necessarily a bad thing. People care, they ask questions, they want to know. People feel "bad" eating in front of me. But honestly after a while eating out with other people (rather them eating and me hanging out) is really not a problem. You just get used to it, you don't crave the food any longer. I just hate that it makes others feel awkward. I mean a lot of society revolves around food. I really realize this now. But hey I definitely think good health is worth the sacrifice and that there are many other pleasures in life aside from food. And the rice and beef does not taste bad!
Wednesday, August 3, 2011
My Initial Diagnoses a.k.a. are you for realsies Doc??!!
Hmm…take these statements for instance.
“I have diabetes.”
“I am a cancer survivor.”
The first sentence is just three words. The second sentence is just five words, right? But it’s not hard to see that an entire novel could be written by each and every individual who can make such a statement.
“I have dermatomyocitis.”
So *actually* this is the short version…
“Oh wait I’m not even sure if the results of your muscle biopsy are in. Let me go see (some time passes, I don’t even make eye contact with my dad, I just kind of fiddle with my phone.) Yeah you have dermatomyocitis.” Hmm…I suppose this is a rather routine diagnoses for a rheumatologist. I wasn’t asked how I was feeling. I wasn’t asked much of anything.
I feel as though the doctor has already disconnected from the situation and from me. We had a fantastic repore my first visit. “You’re too young to be in this office. What are you doing here?!” He jokes. I respond, “I know! What’s up with this?” I laugh. We connect, a young guy himself. We began to disconnect when I insisted that my diet was making a difference in how I was feeling. “Davea, what you are eating is not affecting your immune system. Let me test your strength. You are still strong. I have patients sitting in my office who can’t even move their arms and legs.” Lets fast forward back to the response of me receiving my diagnoses,“I figured.”
This doctor, he’s a really nice guy. I then made him explain to me the anatomy behind the immune system.
At this point I honestly wasn’t surprised, I was more surprised my previous visit when he mentioned that I could possibly have dermatomyocitis, I had already obsessively researched it, matched up the peculiar nodules on my fingers with the pictures online, I was mostly mentally prepared for this diagnoses. I had already had my big break down, it was directly after my muscle biopsy surgery. My poor father had to witness it. It was basically a lot of sobbing. A lot of the world spinning. A flooding of memories, hopes and of dreams that I would never get the opportunity to achieve. A lot of anger, “This world’s not fair and even if I somehow got better there would still be others suffering. There’s always someone suffering. This world isn’t fair, if it’s not me, it’s someone else. I have never been and I will never be satisfied with this world.”
This is a true statement. I still feel this way, I’ve always felt this way. Even as an elementary school kid. But I can cope with it. I’ve accepted it. I’m happy, but not happy with the unfairness. Nonetheless I still remain a relatively cheery person. I had read Michael J. Fox’s biography as an emotional comfort when all of this began. He states, “Pediatric cancer patients. They have to learn the meaning of no at a young age.” So yeah, I was prepared for the worst, and when you’re prepared for the worst you’re always prepared for the better.
“The routine drugs for this diagnoses are methlotrexate (a chemo drug), and because this drug is teratogenic (can cross the plancenta) you will have to be put on birth control. Also corticosteroids (these drugs potentially have some pretty severe side effects). Also cancer is often associated with this diagnoses, we will have to do cancer screening on you.” I state, “I want to try out this gluten free diet and I want to be tested for allergies. I am going to wait on the drugs.” He just stares at me silently. I ask, “Have you ever had a patient do this before?” He flatly says, “No.” Our conversation was over and so were our routine visits. He would not send me to an allergy specialist. He wouldn’t send me to a GI specialist either.
After researching my new doctor I needed to get all of my old labs and patient visits printed off to bring to him, I read the patient notes from my rheumatologist. I read all of them from my first visit to my last visit. I am paraphrasing here, but it went something like, “This patient is a pleasure. Thank you for the opportunity to work with her.” He even put, “Patients states to be finding a gluten free diet effective.” To my last visit, “I spent an extensive period of time in the room with this patient explaining the anatomy behind her illness as requested.” Chapter closed. Next chapter. New doctor. Nice guy. Good lookin guy. haha. But he wouldn’t work with me. I wanted to search for a cure, not a temporary band-aid.
I feel as though the doctor has already disconnected from the situation and from me. We had a fantastic repore my first visit. “You’re too young to be in this office. What are you doing here?!” He jokes. I respond, “I know! What’s up with this?” I laugh. We connect, a young guy himself. We began to disconnect when I insisted that my diet was making a difference in how I was feeling. “Davea, what you are eating is not affecting your immune system. Let me test your strength. You are still strong. I have patients sitting in my office who can’t even move their arms and legs.” Lets fast forward back to the response of me receiving my diagnoses,“I figured.”
This doctor, he’s a really nice guy. I then made him explain to me the anatomy behind the immune system.
At this point I honestly wasn’t surprised, I was more surprised my previous visit when he mentioned that I could possibly have dermatomyocitis, I had already obsessively researched it, matched up the peculiar nodules on my fingers with the pictures online, I was mostly mentally prepared for this diagnoses. I had already had my big break down, it was directly after my muscle biopsy surgery. My poor father had to witness it. It was basically a lot of sobbing. A lot of the world spinning. A flooding of memories, hopes and of dreams that I would never get the opportunity to achieve. A lot of anger, “This world’s not fair and even if I somehow got better there would still be others suffering. There’s always someone suffering. This world isn’t fair, if it’s not me, it’s someone else. I have never been and I will never be satisfied with this world.”
This is a true statement. I still feel this way, I’ve always felt this way. Even as an elementary school kid. But I can cope with it. I’ve accepted it. I’m happy, but not happy with the unfairness. Nonetheless I still remain a relatively cheery person. I had read Michael J. Fox’s biography as an emotional comfort when all of this began. He states, “Pediatric cancer patients. They have to learn the meaning of no at a young age.” So yeah, I was prepared for the worst, and when you’re prepared for the worst you’re always prepared for the better.
“The routine drugs for this diagnoses are methlotrexate (a chemo drug), and because this drug is teratogenic (can cross the plancenta) you will have to be put on birth control. Also corticosteroids (these drugs potentially have some pretty severe side effects). Also cancer is often associated with this diagnoses, we will have to do cancer screening on you.” I state, “I want to try out this gluten free diet and I want to be tested for allergies. I am going to wait on the drugs.” He just stares at me silently. I ask, “Have you ever had a patient do this before?” He flatly says, “No.” Our conversation was over and so were our routine visits. He would not send me to an allergy specialist. He wouldn’t send me to a GI specialist either.
After researching my new doctor I needed to get all of my old labs and patient visits printed off to bring to him, I read the patient notes from my rheumatologist. I read all of them from my first visit to my last visit. I am paraphrasing here, but it went something like, “This patient is a pleasure. Thank you for the opportunity to work with her.” He even put, “Patients states to be finding a gluten free diet effective.” To my last visit, “I spent an extensive period of time in the room with this patient explaining the anatomy behind her illness as requested.” Chapter closed. Next chapter. New doctor. Nice guy. Good lookin guy. haha. But he wouldn’t work with me. I wanted to search for a cure, not a temporary band-aid.
Subscribe to:
Posts (Atom)