Today was a very great day here at Baylor! We started off the day in a group meeting with the other 5 people being tested this week. They talked about post-transplant care and finances and then they had a patient come in to talk about his experience. He had PSC just like me! He is in his 90's now and he kind of screwed up his medication so his disease is starting to return. It has been 17 years since his transplant. Seventeen years ago things were a lot less developed than they are now with transplants and the fact that he lasted that long with funky medicine makes me extremely happy!
Recovery, however, I am not looking forward to. The donor just gets to peace out after about week or so but I get to spend three wonderful months in Dallas. The first 12 hours after surgery I will need help breathing via an oral breathing tube. I will also have two tubes in my stomach until I can prove to them I can eat and take medicine by myself. I WILL SET A RECORD! They have no idea how long I've been taking humongous pills, so bring it! Those tubes are waaay not invited to the party.
I will also be restrained for a the first few hours so if you are one of the people planning to be there you should prepare to be a little weirded out. Most people stay a total of 7-10 days, the record is four. I'm going for four.
The reason I have to stay close after discharge is because they will spend the three months post-op trying to find a combination of drugs that will effectively keep my immune system from murdering my new liver. Once they have made sure it will not get evicted I can leave.
I also met one of 20 female transplant surgeons in the US. She is awesome. She told me the names of all the surgeons that could work on me and even though she said she was sorry that this was happening to me at such a young age I could tell she was excited to have someone so "easy" to work on. It was fairly evident in the way she said. "OOOH you're skinny!!! as she felt my abdomen. She also said "It's easier and safer to transplant fit patients. You should get six pack abs before I see you next time!" Well alrighty then. It's crazy person diet and work out time once we get back from this trip!
The day ended with them telling me I don't have to have blood drawn again because my doctor did it in November which was wonderful news because both crooks of both elbows are purple, swollen, and almost out of places for sticking. So way to go Dr. W for being on the ball!
Also, we made Christmas cookies and got ramen from the best Japanese place in Dallas, Tei-An which makes everything better all the time. :)
"It's no coincidence that four of the six letters in health are heal."
- Ed Northstrum
Wednesday, December 12, 2012
Tuesday, December 11, 2012
If it's so easy then you do it!
My first appointment today was at 7am to get a Glofil (kidney function) test. Or at least my appointment was at 7. The lab tech's first appointment was at 7:15. I always say how great Baylor is but the Nephrology lab is a horrible place filled with pain and rude people. Those lab technicians are the family members you never invite to dinner because they will tell you to your face how much of a failure you are while they hold a bottle of Jack Daniels with their pants undone.
After she finally showed up she forgot to fill out my paperwork and the doctor injected the medicine before she verified the basic health requirements such as, "Are you pregnant?" and "Have you had a kidney transplant?" Luckily both answers were no or she would have been in serious trouble. There were two chairs in the room with me but she told my Dad that only one person could stay in the room with me. She took blood like she was playing darts while drunk at a bar. The blood was drawn three times 15 minutes apart and in that short time span my first sample site was bruised. Then she bruised me again 15 minutes later. On the third time she dug around for five minutes, made my second site start bleeding again and when I winced she said, "Oh pssh, this is the easy part." NO. Peeing in that collection hat is the easy part. You stabbing me repeatedly in basically the same place 3 times hurts a lot, let me do it to you.
Okay I feel better now so lets move on because the rest of the day was amazing! I saw my Hepatologist, Dr. W, who told me that this transplant would not only cure my disease but fix the other problems the disease caused. My enlarged spleen will shrink dramatically and my esophageal varices and portal hypertension will go away and might be enough to let me have a child someday. The chance of my disease coming back over time is only 25% but I'll do everything I can to prevent that.
The last person I saw today was the social worker who told us that the initial surgery cost will be more than we expected (uninsured it would be almost $600,000! can you believe it?) but the long term medications will be more manageable than we thought so everything kind of evens out. Every day I spend here I get more and more nervous. The reality of the situation is scary. I have about a 60% chance of rejecting a new liver but they have an 80% chance of fixing it if it happens. Even with all of this I can't stop being hopeful because my life could be "normal" with no health problems. I don't know what it feels like to be normal so I'm excited about the thought.
I'd like to say thank you to everyone who is sharing this journey with me. I am very grateful to have you with me whether it's through Facebook, phone, or even just positive thoughts in my direction. I am especially grateful to my family and friends who have begun fundraising in my honor to help cover the financial and spiritual aspects of the surgery. Having a chance to live a healthy life is all I've ever wanted and I will live every day with hope and faith because of you who support me so wholeheartedly. Thank you.
"Encourage, lift, and strengthen one another. For the positive energy spread to one will be felt by us all." -Deborah Day
After she finally showed up she forgot to fill out my paperwork and the doctor injected the medicine before she verified the basic health requirements such as, "Are you pregnant?" and "Have you had a kidney transplant?" Luckily both answers were no or she would have been in serious trouble. There were two chairs in the room with me but she told my Dad that only one person could stay in the room with me. She took blood like she was playing darts while drunk at a bar. The blood was drawn three times 15 minutes apart and in that short time span my first sample site was bruised. Then she bruised me again 15 minutes later. On the third time she dug around for five minutes, made my second site start bleeding again and when I winced she said, "Oh pssh, this is the easy part." NO. Peeing in that collection hat is the easy part. You stabbing me repeatedly in basically the same place 3 times hurts a lot, let me do it to you.
Okay I feel better now so lets move on because the rest of the day was amazing! I saw my Hepatologist, Dr. W, who told me that this transplant would not only cure my disease but fix the other problems the disease caused. My enlarged spleen will shrink dramatically and my esophageal varices and portal hypertension will go away and might be enough to let me have a child someday. The chance of my disease coming back over time is only 25% but I'll do everything I can to prevent that.
The last person I saw today was the social worker who told us that the initial surgery cost will be more than we expected (uninsured it would be almost $600,000! can you believe it?) but the long term medications will be more manageable than we thought so everything kind of evens out. Every day I spend here I get more and more nervous. The reality of the situation is scary. I have about a 60% chance of rejecting a new liver but they have an 80% chance of fixing it if it happens. Even with all of this I can't stop being hopeful because my life could be "normal" with no health problems. I don't know what it feels like to be normal so I'm excited about the thought.
I'd like to say thank you to everyone who is sharing this journey with me. I am very grateful to have you with me whether it's through Facebook, phone, or even just positive thoughts in my direction. I am especially grateful to my family and friends who have begun fundraising in my honor to help cover the financial and spiritual aspects of the surgery. Having a chance to live a healthy life is all I've ever wanted and I will live every day with hope and faith because of you who support me so wholeheartedly. Thank you.
"Encourage, lift, and strengthen one another. For the positive energy spread to one will be felt by us all." -Deborah Day
Monday, December 10, 2012
Late to my own Funeral
Today was the first day of my week long liver transplant evaluation and the first step in determining my placement on the waiting list. Let's just say that it started out a little rocky. What should have been a three and a half hour drive from OKC to Dallas ended up taking six hours due a nice thick layer of ice and two unfortunately positioned semis. Why the three trailer long UPS truck didn't put chains on I'll never know.
Always one to be fashionably late, I showed up for my 8:30 appointment at 10:15. I cannot say enough how amazing Baylor Medical is. They accommodated us into the schedule and rushed me through an impromptu orientation before sending me off to the lab. A dozen vials of blood later I was off to my Tuberculosis test.
We then met with a nutritionist who said I was generally much better off than most of the patients she sees and my healthy diet probably contributed to my lack of horrible liver failure symptoms. She recommended I try to quit drinking Coke and do a little more cardio. She thought that my choice of vitamin supplements was perfect and was generally impressed with my self management.
Then, off to the EKG I went. That came back normal and so Day 1 was complete. The place we are staying is called Twice Blessed House and it's sponsored by the hospital. It's really nice and has a full kitchen/bath/laundry and I'm lucky to have my mom here to cook dinner for me!
I'll continue to update throughout the week so you can all share in this strange new experience with me. I'm learning a lot and maybe you will too! For instance: did you know, that after a transplant, the recipient has to stay in the area for two months? I am not at all excited about being away from my friends for so long. Looks like I'll be getting a Skype account!
"I am not afraid of storms, for I'm learning how to sail my ship"
-Louisa May Alcott
Thursday, November 29, 2012
Lucky
It's been a long time since I wrote here but I've had quite a lot on my plate. We recently discovered the actual cause of my liver disease is a combination of autoimmune disorder and something called Primary Sclerosing Cholangitis (PSC for short). It's an autoimmune disease of the bile ducts that causes bile to back up into my liver and poison it. There is no treatment to slow or stop the disease and it's also extremely rare because I'm special like that. Me and less than 100,000 people on earth out of 7 billion. Lucky. This post is about luck. Obviously that statement up there was sarcasm but there are ways in which I truly am lucky. This past week has shown me that.
Monday I had my first doctor's appointment at Baylor since my diagnosis. My liver doctor, Dr. W, told me that it would just be a waiting game, watching blood counts and doing MRI's, until I was bad enough to be transplanted. She asked me if I was having any symptoms that I wanted medication for, I did not, then she gave me a great suggestion about a vitamin supplement and sent me on my way. I was not expecting the phone call I received on Tuesday morning.
Dr. W and my team of other various doctors had gotten a chance to look at my MRI from Monday and saw that my tumors are still growing. They all agreed that the tumors will probably become cancerous before I qualify as "sick enough" to get a cadaveric transplant, which would immediately disqualify me from getting said transplant because I have over a dozen tumors and the limit is 3. The only option would be a live donor transplant and a quick one.
Cognitive overload.
Once my brain starting working again I managed to answer some questions about possible donors and time constraints, then Dr. W said someone would be in touch in 2-3 weeks and hung up. They called a day later. In a period of 24 hours I now have a transplant coordinator, transplant nurse, and transplant scheduler (apparently I was listed as urgent). There are no words to express the sheer overwhelming...overwhelmment that I was experiencing. My head was spinning until last night when it suddenly stopped.
As I lay under the Christmas tree with my husband holding me in his arms I realized that I am lucky. I found the person I am meant to spend my entire life with whether it is short or long. He is willing to give half of his liver to keep me alive giving him the possibility of making the phrase, "you complete me" a literal one. It was not a coincidence that we met. It was fate, it was God, it was the chaos theory, it was everything all at once aligning perfectly to make every single horrible thing in my life mean nothing in comparison.
That is luck and that is love. We will get through this together as we always have with a veritable army of people lifting us up and pushing us forward. We are lucky to have you.
The next step is waiting on some paperwork then I will have a week of testing at Baylor. Once my testing is finished they can begin testing donors which is another couple days worth of tests. Walter is a medical wonder and I'm sure he will pass but if anyone else would like to be tested let me know and I'll get you the information. I'm going ask around for some locations to host a blood drive because it's honestly all I can do to give something back to the world that is so generous to me. I hope you all have a great week and thank you for always being there for me.
"We make a living by what we get, but we make a life by what we give."- Winston Churchill
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Monday I had my first doctor's appointment at Baylor since my diagnosis. My liver doctor, Dr. W, told me that it would just be a waiting game, watching blood counts and doing MRI's, until I was bad enough to be transplanted. She asked me if I was having any symptoms that I wanted medication for, I did not, then she gave me a great suggestion about a vitamin supplement and sent me on my way. I was not expecting the phone call I received on Tuesday morning.
Dr. W and my team of other various doctors had gotten a chance to look at my MRI from Monday and saw that my tumors are still growing. They all agreed that the tumors will probably become cancerous before I qualify as "sick enough" to get a cadaveric transplant, which would immediately disqualify me from getting said transplant because I have over a dozen tumors and the limit is 3. The only option would be a live donor transplant and a quick one.
Cognitive overload.
Once my brain starting working again I managed to answer some questions about possible donors and time constraints, then Dr. W said someone would be in touch in 2-3 weeks and hung up. They called a day later. In a period of 24 hours I now have a transplant coordinator, transplant nurse, and transplant scheduler (apparently I was listed as urgent). There are no words to express the sheer overwhelming...overwhelmment that I was experiencing. My head was spinning until last night when it suddenly stopped.
As I lay under the Christmas tree with my husband holding me in his arms I realized that I am lucky. I found the person I am meant to spend my entire life with whether it is short or long. He is willing to give half of his liver to keep me alive giving him the possibility of making the phrase, "you complete me" a literal one. It was not a coincidence that we met. It was fate, it was God, it was the chaos theory, it was everything all at once aligning perfectly to make every single horrible thing in my life mean nothing in comparison.
That is luck and that is love. We will get through this together as we always have with a veritable army of people lifting us up and pushing us forward. We are lucky to have you.
The next step is waiting on some paperwork then I will have a week of testing at Baylor. Once my testing is finished they can begin testing donors which is another couple days worth of tests. Walter is a medical wonder and I'm sure he will pass but if anyone else would like to be tested let me know and I'll get you the information. I'm going ask around for some locations to host a blood drive because it's honestly all I can do to give something back to the world that is so generous to me. I hope you all have a great week and thank you for always being there for me.
"We make a living by what we get, but we make a life by what we give."- Winston Churchill
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Sunday, September 30, 2012
Sunday Infomercial
It's about time for another blog update but I almost forgot about it so this one will be a quickie!
Today I'm going to post my top three homemade cleaning recipes. They are cheaper, safer, and all around better than what you can buy at the store. I might have thrown some personal opinion into that last statement but here goes:
1. Laundry Detergent
1 part water
1 part CHEAP vodka
a few drops of scented oil (until the scent is noticeable)
We use either fresh linen or citrus scents. (The links contain two sites you can buy good oil from)
3. Dusting Spray
2 teaspoons olive oil
1/2 teaspoon lemon essential oil
1/4 cup white vinegar
1-3/4 cups water
Good for everything but glass or screens. The olive oil will leave streaks.
Happy Cleaning! :)
"I'm not going to vacuum until Sears makes one you can ride on." —Roseanne Barr
Today I'm going to post my top three homemade cleaning recipes. They are cheaper, safer, and all around better than what you can buy at the store. I might have thrown some personal opinion into that last statement but here goes:
1. Laundry Detergent
6 cups Borax
4 cups baking soda
4 cups washing soda
4 cups Fels-Naptha bar soap or Zote etc.
This works great for us! My husband works in the fuel tanks or airplanes and comes home smelling to high heaven. Odor is no longer a problem. It also works out to about .04 cents a load when your average household detergent will run at about .14 cents a load assuming you don't use fabric softener at all.
I use 1/4 cup white vinegar as a natural fabric softener. Naturally cheap as well $$!
2. Fabric Deodorizer
Easiest recipe out there!1 part water
1 part CHEAP vodka
a few drops of scented oil (until the scent is noticeable)
We use either fresh linen or citrus scents. (The links contain two sites you can buy good oil from)
3. Dusting Spray
2 teaspoons olive oil
1/2 teaspoon lemon essential oil
1/4 cup white vinegar
1-3/4 cups water
Good for everything but glass or screens. The olive oil will leave streaks.
Happy Cleaning! :)
"I'm not going to vacuum until Sears makes one you can ride on." —Roseanne Barr
Monday, September 17, 2012
Emotional Knowledge: Part 2
WARNING! GRAPHIC DETAILS TO FOLLOW. If you aren't interested about hearing the intricacies of my period then this is your cue to continue browsing the internet elsewhere. In this post I would like to expand the reproductive topic of the last post and explain how the Paragard has ruined my periods but the Diva Cup has saved my life.
I knew that getting the Paragard put in was going to hurt. I haven't had any kids so they had to do some stretching to get it in position. Luckily, I was heavily sedated so all I remember of that day is some quick sharp pain and some sporadic cramps. The next day was a different story. I must have lost half of my tooth enamel from clenching my teeth all day. The medicine was not helping and I actually thought that punching the demon they left in my uterus might be an improvement over the "cramps". The pain slowly died down over the next few weeks and I got to enjoy a week of peace before my period came. *insert horror flick music here* It was a nightmare. There was blood everywhere. I had no idea how to handle it and I ended up using a super tampon and a heavy flow pad in combination which I still managed to leak through. I remembered reading somewhere that the Paragard needed time to settle and that the pain and bleeding were supposed to improve over time. That was when the Demon-gard got his 6 month notice. If things didn't dramatically change I was going to cut it out myself.
Until that deadline I had to come up with a way to cope with the bleeding so I could actually function as a human during the now 8 full days of my period. I knew that I would have to bite the bullet and buy a menstrual cup which is basically a little egg shaped cup that you leave in you vagina for a few hours before emptying it and putting it in again. I was going to order this cup but I procrastinated and it wouldn't make it in time for my next period so I went to the Health Food Center and bought the Diva Cup because I had seen them there before. I had always swore to myself I would never use a cup because it would be gross and honestly it kind of is. You have to be very comfortable with your vagina because if you don't get it around your cervix it will leak. This is easy for me because I can reach mine with a finger but not all people can. They make different sizes for this exact reason. Another aspect of the cup that took some getting used to was the empty/reinsert situation. Feminine travel wipes are my new best friend because you have to make sure the rim is clean before you put it back in (it affects the suction if it's not clean).
That being said, I will still never ever use a tampon or pad again. This thing is great! My periods have improved steadily, I'm back to 5 days only one of which is super heavy, but the first month I used it I was emptying the cup every 2 hours which means I passed the "normal" amount of blood loss for an entire period in a single day. The cup can be left in for 10 hours and carries no risk of toxic shock syndrome which means that someone with a normal flow would have to empty the cup about twice a day. I have literally forgotten that I was even on my period a couple of times. It's a great choice for the environmentally conscious as the cup can last for years without replacing so there is only a tiny amount of waste involved. Also, there are no harsh chemicals going into your body (side note: most tampons and pads are bleached...not so good for sensitive areas). If you want more information just drop me a comment I'll be happy to answer any questions.
"If men could menstruate ... clearly, menstruation would become an enviable, boast-worthy, masculine event: Men would brag about how long and how much...." - Gloria Steinem
I knew that getting the Paragard put in was going to hurt. I haven't had any kids so they had to do some stretching to get it in position. Luckily, I was heavily sedated so all I remember of that day is some quick sharp pain and some sporadic cramps. The next day was a different story. I must have lost half of my tooth enamel from clenching my teeth all day. The medicine was not helping and I actually thought that punching the demon they left in my uterus might be an improvement over the "cramps". The pain slowly died down over the next few weeks and I got to enjoy a week of peace before my period came. *insert horror flick music here* It was a nightmare. There was blood everywhere. I had no idea how to handle it and I ended up using a super tampon and a heavy flow pad in combination which I still managed to leak through. I remembered reading somewhere that the Paragard needed time to settle and that the pain and bleeding were supposed to improve over time. That was when the Demon-gard got his 6 month notice. If things didn't dramatically change I was going to cut it out myself.
Until that deadline I had to come up with a way to cope with the bleeding so I could actually function as a human during the now 8 full days of my period. I knew that I would have to bite the bullet and buy a menstrual cup which is basically a little egg shaped cup that you leave in you vagina for a few hours before emptying it and putting it in again. I was going to order this cup but I procrastinated and it wouldn't make it in time for my next period so I went to the Health Food Center and bought the Diva Cup because I had seen them there before. I had always swore to myself I would never use a cup because it would be gross and honestly it kind of is. You have to be very comfortable with your vagina because if you don't get it around your cervix it will leak. This is easy for me because I can reach mine with a finger but not all people can. They make different sizes for this exact reason. Another aspect of the cup that took some getting used to was the empty/reinsert situation. Feminine travel wipes are my new best friend because you have to make sure the rim is clean before you put it back in (it affects the suction if it's not clean).
That being said, I will still never ever use a tampon or pad again. This thing is great! My periods have improved steadily, I'm back to 5 days only one of which is super heavy, but the first month I used it I was emptying the cup every 2 hours which means I passed the "normal" amount of blood loss for an entire period in a single day. The cup can be left in for 10 hours and carries no risk of toxic shock syndrome which means that someone with a normal flow would have to empty the cup about twice a day. I have literally forgotten that I was even on my period a couple of times. It's a great choice for the environmentally conscious as the cup can last for years without replacing so there is only a tiny amount of waste involved. Also, there are no harsh chemicals going into your body (side note: most tampons and pads are bleached...not so good for sensitive areas). If you want more information just drop me a comment I'll be happy to answer any questions.
"If men could menstruate ... clearly, menstruation would become an enviable, boast-worthy, masculine event: Men would brag about how long and how much...." - Gloria Steinem
Sunday, September 16, 2012
Emotional Knowledge Part 1
Tomorrow is/would have been the due date of our second baby. It's hard for me to think that it's been nine months already and almost a year since I found out about the first pregnancy and the possibility that I might have cancer. I feel like I've been through a lot of things over the past year but some part of me is still stuck in the past. It's a real struggle for me to be "normal" every day when part of my mind wants me to go into the dark and unfinished nursery, huddle in the corner, and cry myself to dehydration.
This sounds very dramatic but it's real and honest. Opening myself up and giving advice based on what I've learned is a big part of healing for me. That's why this post and the next will be about birth control and periods. MEN. Please don't leave yet because the birth control portion is important for you as well. You can go ahead and excuse yourself from Part 2 because that's where I'll write about all the stuff you don't want to read about.
Let me start by saying that I've always had liver disease. Liver tumors are not uncommon in people with cirrhosis. However, over three years or being on the birth control Nuva Ring I went from zero tumors to....well a lot. I recently read the doctor's report on the exploratory surgery I had in April. It said, "LIVER APPEARANCE: Innumerable tumors of unknown composition." Innumerable...as in too many to count via a camera looking directly at my liver. That's unsettling to say the least. A quick Google search will reveal that the Nuva Ring has a bad habit of causing mysterious liver tumors. It could be a coincidence but the fact remains that flooding your body with hormones is risky business. Birth control for women is not very safe but since it's seen as "necessary" the risks are ignored. The few types of birth control being researched for men are quick, easy, and virtually risk free. You can read about two of them here and here. The only hormone free birth control for women is Paragard, which I have, and it was/is extremely painful among other things. Sadly, this is the only option left to me in my state of health excluding condoms or my husband to having to go through a 20 year old vasectomy procedure that may or may not be reversible. Any conception would result in the loss of another child or risking my own life to try and carry to 3/4 term. In summary, MEN, please support research and development for male birth controls. They are receiving too little attention and are far too important to be ignored but will never succeed if you refuse them. Put your wife/girlfriend in my shoes.
If you're looking for a hormone free birth control and have good insurance I would recommend Paragard but otherwise it might not be worth the risk. If you are one of the people it never gets less painful for that's $700 down the drain. Birth control is an extremely sexist branch of medicine and it leaves women who already have health problems at high risk for things like cancer, increased blood loss and even death. Do me a favor and share this information with one other person this week. Most people don't even know that these options could exist and knowledge is the first step!
See you tomorrow for Part 2!
“Do not follow where the path may lead. Go instead where there is no path and leave a trail”
– Ralph Waldo Emerson
Friday, August 24, 2012
Friday FYI
I'm thinking about making Fridays the day I post random facts about random things. Hence the title, Friday FYI. We'll see how this goes. One of my best friends said I should post about this because she thought it was interesting and gross at the same time. They FYI of the week is about CELLULOSE.
Cellulose is used in just about everything, ice cream, flavored milk, baked goods etc. but most people don't know what it is let alone the fact that we eat it every day. Cellulose is an indigestible fiber which is not necessarily bad for you in itself. It does occur naturally in many vegetables but added cellulose is a little less pleasant sounding. Added cellulose is wood pulp and the FDA has set no maximum amount that can be added to food. So what does this mean, exactly? It goes like this: a food processing company takes whole grain from farmers then adds or "cuts" the good grain with cellulose which increases their product volume. Either way we end up eating more tree than grain which isn't exactly what I was wanting from my hamburger.
If you have ever taken fiber supplements the chances are it was cellulose and like I said before it's perfectly safe and natural so why did I bother writing this? Because the regulations on cellulose are so paper thin it's scary; meaning we can't tell as consumers how much we are getting in our food or where it comes from (maybe the reason your fiber bar tastes like cardboard is because it was cardboard). If you get too much cellulose in your system you run the risk of developing serious stomach issues. So here is a list of the worst offenders for you if you want to feel a little better about your fiber intake. Happy eating!
“Ask not what you can do for your country. Ask what’s for lunch.”
― Orson Welles
Cellulose is used in just about everything, ice cream, flavored milk, baked goods etc. but most people don't know what it is let alone the fact that we eat it every day. Cellulose is an indigestible fiber which is not necessarily bad for you in itself. It does occur naturally in many vegetables but added cellulose is a little less pleasant sounding. Added cellulose is wood pulp and the FDA has set no maximum amount that can be added to food. So what does this mean, exactly? It goes like this: a food processing company takes whole grain from farmers then adds or "cuts" the good grain with cellulose which increases their product volume. Either way we end up eating more tree than grain which isn't exactly what I was wanting from my hamburger.
If you have ever taken fiber supplements the chances are it was cellulose and like I said before it's perfectly safe and natural so why did I bother writing this? Because the regulations on cellulose are so paper thin it's scary; meaning we can't tell as consumers how much we are getting in our food or where it comes from (maybe the reason your fiber bar tastes like cardboard is because it was cardboard). If you get too much cellulose in your system you run the risk of developing serious stomach issues. So here is a list of the worst offenders for you if you want to feel a little better about your fiber intake. Happy eating!
“Ask not what you can do for your country. Ask what’s for lunch.”
― Orson Welles
Tuesday, August 21, 2012
Health Business
Yesterday, I traveled to Dallas for my 3 month exam so health is on my mind. I developed the need to learn about the problems affecting me before I make any decisions about the treatment or management or my diseases. This makes me a giant pain in the butt to any doctor because healthcare is a BUSINESS above all other things so when an individual doctor goes against a treatment protocol they will have to answer for it at some point. I greatly respect any doctor who is willing to do this but I digress.
BIG REVEAL: I am a crunchy person or a granola or a hippie, whatever you prefer. What I really wanted to talk about today is herbal remedies. I know this is a long post but please stick with it. I'd like to share my adventures in natural cures.
I found out about my liver disease about 8 years ago. I spent the next 6 years too young, too overwhelmed and too scared to do anything but blindly follow my doctors orders. Over the course of those 6 years my disease was out of control. It would get better it would get worse but I would always feel sick. I almost died from meningitis even though I was vaccinated against it. Then I almost died from the swine flu. These are not exaggerations but they were the most severe cases. Even so, I spent about 25% of each year sick with some kind of contagious illness because I had no immune system.
I was tired and angry. So I decided to get involved in my own treatment. I looked up the medications I was on and discovered that they had a bad habit of suppressing immune response. Lovely. That's exactly what I wanted. So I went to the doctor and told him that I didn't want to take that medicine and asked about other options. His reply: "You are so sick that it doesn't matter what we do to your immune system or what medicine I give you it's not going to help."
That is when I realized that this particular doctor did not want me to get better. He wanted me to get sick enough to need a transplant so he could be finished with me. From this point on I refused to take anything he prescribed me before thoroughly researching it and found that everything he tried to give me to "treat" my disease had side effects like: immunosuppression, liver cancer, brain cancer, leukemia, and various other horrible things.
I refused his "treatment" and went off on my own researching ways to boost the immune system and to heal the liver outside the confines of the health business. Now I take a cocktail of herbs and vitamins every day including things like Milk Thistle and Dandelion Root (for the liver) and a very large amount of Vitamin D (for the immune system).
That was two years ago and I haven't had to visit a doctor for anything contagious the entire time. Not even once. My liver is still bad, but it has stabilized. I actually feel good most of the time as opposed to exhausted and weak. To me, it is a miracle and I feel amazingly free.
I'd like to finish by giving you all some references that you can use to learn more about herbal medicine. I'd also like to say that most of the time a doctor tells you something they are right and you should listen to them but always use your brain. Read the labels on the medicine and decide for yourself if the side effects are worth what the treatment gives you. If something your doctor tells you sounds illogical it probably is and second opinions can change your life. Always remember that fully trusting another human with the only body you get is a big deal. A good doctor will never make you feel silly or bad for asking a question and will respect any decision you make about your healthcare. A great doctor will encourage you to make informed decisions just like a friend would.♥
Searchable database of herbs by ailment: herbalremediesdb.com
General information about herbal use: http://www.umm.edu/altmed/articles/herbal-medicine-000351.htm
Good start to leaning about Vitamin D (I Love VitD btw): http://articles.mercola.com/sites/articles/archive/2009/09/22/low-vitamin-d-increases-flu-death-risk-in-kids.aspx
Also, just because a herb is not approved by the FDA does not mean it isn't safe. If you are interested in a particular herb do some research because many herbs are being used in other countries by actual doctors with government support! Expand your views!
If you made it this far I would like to say that the tumors in my liver are the same size as before which is the best news I can get excluding them magically dissolving!
“Travel is fatal to prejudice, bigotry, and narrow-mindedness.” – Mark Twain
BIG REVEAL: I am a crunchy person or a granola or a hippie, whatever you prefer. What I really wanted to talk about today is herbal remedies. I know this is a long post but please stick with it. I'd like to share my adventures in natural cures.
I found out about my liver disease about 8 years ago. I spent the next 6 years too young, too overwhelmed and too scared to do anything but blindly follow my doctors orders. Over the course of those 6 years my disease was out of control. It would get better it would get worse but I would always feel sick. I almost died from meningitis even though I was vaccinated against it. Then I almost died from the swine flu. These are not exaggerations but they were the most severe cases. Even so, I spent about 25% of each year sick with some kind of contagious illness because I had no immune system.
I was tired and angry. So I decided to get involved in my own treatment. I looked up the medications I was on and discovered that they had a bad habit of suppressing immune response. Lovely. That's exactly what I wanted. So I went to the doctor and told him that I didn't want to take that medicine and asked about other options. His reply: "You are so sick that it doesn't matter what we do to your immune system or what medicine I give you it's not going to help."
That is when I realized that this particular doctor did not want me to get better. He wanted me to get sick enough to need a transplant so he could be finished with me. From this point on I refused to take anything he prescribed me before thoroughly researching it and found that everything he tried to give me to "treat" my disease had side effects like: immunosuppression, liver cancer, brain cancer, leukemia, and various other horrible things.
I refused his "treatment" and went off on my own researching ways to boost the immune system and to heal the liver outside the confines of the health business. Now I take a cocktail of herbs and vitamins every day including things like Milk Thistle and Dandelion Root (for the liver) and a very large amount of Vitamin D (for the immune system).
That was two years ago and I haven't had to visit a doctor for anything contagious the entire time. Not even once. My liver is still bad, but it has stabilized. I actually feel good most of the time as opposed to exhausted and weak. To me, it is a miracle and I feel amazingly free.
I'd like to finish by giving you all some references that you can use to learn more about herbal medicine. I'd also like to say that most of the time a doctor tells you something they are right and you should listen to them but always use your brain. Read the labels on the medicine and decide for yourself if the side effects are worth what the treatment gives you. If something your doctor tells you sounds illogical it probably is and second opinions can change your life. Always remember that fully trusting another human with the only body you get is a big deal. A good doctor will never make you feel silly or bad for asking a question and will respect any decision you make about your healthcare. A great doctor will encourage you to make informed decisions just like a friend would.♥
Searchable database of herbs by ailment: herbalremediesdb.com
General information about herbal use: http://www.umm.edu/altmed/articles/herbal-medicine-000351.htm
Good start to leaning about Vitamin D (I Love VitD btw): http://articles.mercola.com/sites/articles/archive/2009/09/22/low-vitamin-d-increases-flu-death-risk-in-kids.aspx
Also, just because a herb is not approved by the FDA does not mean it isn't safe. If you are interested in a particular herb do some research because many herbs are being used in other countries by actual doctors with government support! Expand your views!
If you made it this far I would like to say that the tumors in my liver are the same size as before which is the best news I can get excluding them magically dissolving!
“Travel is fatal to prejudice, bigotry, and narrow-mindedness.” – Mark Twain
Sunday, August 19, 2012
Introduction
I could easily start this introduction with a Westerner's definition of my blog's title, "Wabi-Sabi," but I woudn't do it justice. What I do know is that life is a journey. It is not easy. It is not perfect. It is not fair. Wabi-Sabi, to me, means finding a way to find joy and wholeness not in spite of these things but because of them.
My body is very sick. It has been for a long time now. I have found many ways to deal with my illnesses but I still find myself angry, hurt, and jealous at times. I rely on the "silver lining" of each moment to get though each day and I feel that I am becoming a stronger person every second. I also feel that strength is a characteristic which can be shared with the people around you.
That is the reason I have decided to openly share my journey with you. I want to find happiness within a vortex of challenges and loss. I want to find calm within a world of chaos. Most importantly, I want to make a difference. My life is important because it intersects with other lives but I want to reach farther and multiply those connections. Maybe I can teach you something or maybe you have something to teach me.
This is my story and I make no promises. I could post my latest hospital horror story as easily as I could post my favorite household cleaner recipe but I will try to label things appropriately so the squeamish can avoid the needles. I can guarantee this: I will try my very best to keep things interesting and if you have any special ideas or topics you would like me to write about please feel free to ask!
"Little by little, one travels far." - Tolkien
My body is very sick. It has been for a long time now. I have found many ways to deal with my illnesses but I still find myself angry, hurt, and jealous at times. I rely on the "silver lining" of each moment to get though each day and I feel that I am becoming a stronger person every second. I also feel that strength is a characteristic which can be shared with the people around you.
That is the reason I have decided to openly share my journey with you. I want to find happiness within a vortex of challenges and loss. I want to find calm within a world of chaos. Most importantly, I want to make a difference. My life is important because it intersects with other lives but I want to reach farther and multiply those connections. Maybe I can teach you something or maybe you have something to teach me.
This is my story and I make no promises. I could post my latest hospital horror story as easily as I could post my favorite household cleaner recipe but I will try to label things appropriately so the squeamish can avoid the needles. I can guarantee this: I will try my very best to keep things interesting and if you have any special ideas or topics you would like me to write about please feel free to ask!
"Little by little, one travels far." - Tolkien
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