My dreams have been really strange lately, or maybe I should say stranger then normal. Any woman who's had a baby knows that your dreams become bizarre when your pregnant. This is the first time in my life that my dreams are out of the ordinary without being pregnant. I thought maybe it was the extra stress or possibly the new medication but there are lessons to be learned with my dreams lately. My mind is talking to me and I need to listen.
The other night I had a dream that I was in a horrible flare. All of it at once, severe oral and genital ulcers, eyes hurting with blurry vision, a swollen red itchy rash all over my body and of course I couldn't breath. I woke up so relieved and grateful for the changes I've made in my life. I was proud of myself for the initiative I've taken in my quest for healing.
I normally love dreaming about my dad but last night was different. He was sick. I talked to him on the phone, he had just come home from the hospital and wasn't feeling well. The setting for my end of the phone conversation was my house, but my house was relocated to Oregon in the town where my dad is buried. The next day I called him again, he didn't answer but this time a woman did (typical). She told me he was really sick and couldn't talk or have visitors. I said I was going to visit him no matter what. I screamed and cursed her with every name in the book. I was fuming mad. I yelled at her about how I had to come see him because I wanted to get a picture with him before he died. I woke instantly and was completely heart broken.
My dad didn't die because he was sick, he was shot and killed when I was 15. He had been sick before with some kind of Colitis (inflammation of the large intestines) Possibly from Crohns disease or maybe even Behcet's. I'm not close to the Gorgita side of my family. I spent part of my summers in Oregon with my dad but we never talked about the families health history. (That's just not something you worry about as a kid.)
This dream meant a few things to me. One, I need to make a goal to learn more about the disease he had and the Gorgita families history. But more importantly was the lesson of selfishness. I wanted to see him to get a picture? What the hell is that all about? Why was I thinking about a picture, didn't I have a lot of other stuff to say and ask him? Or comfort him when he's dieing? This was a big eye opener for me this morning.
Friday, April 30, 2010
Thursday, April 29, 2010
Day 24. Integrative Medicine
Below is a link to a series of short interviews with people in the medical field that are pro-Integrative Medicine. Integrative Medicine is a combination of conventional Western medicine/medications and alternative/natural medicine. Integrative Medicine emphasis on many things like stress reduction through yoga, tia chi, meditation, prayer, acupuncture, massage therapy etc, and self care, personal spirituality, nutrition, exercise, a positive mind, biofeedback, herbal and conventional medications and being pro-active in your health care.
Integrative Medicine is about looking at the bigger picture not just the disease. The "Whole Person"; your mind, body and spirit. Neglecting certain areas of your life can cause disease and cause an existing disease to become worse. Different areas of your life require more attention in order to heal.
These interviews also touch on the importance of caregivers and physicians in assisting a person in achieving their goals. Maintaining positive energy is crucial. It's important to surround yourself with positive people...we feed off each others energy!
I know what you're thinking, "but Annie, you believe in God, you're not supposed to talk about energy and meditation" Let's just say I believe in Integrative Religion also...I'll post more about my God later.
These videos are inspirational for anyone who is suffering from a disease or illness or if you have a loved one with health problems.
Cut and paste this link into your web browser!
http://www.pbs.org/thenewmedicine/interview.html
Also, check out the documentary by Dana Reeve called;
"The New Medicine" (if you have netflix it's available as "Watch Instantly" also)
Today:
Finally started reading "Water for Elephants" by Sara Gruen, borrowed it from my mom. Thanks Mom...hopefully I won't loose it again. Yoga today. My breathing seems easier lately but I have a couple areas in my mouth where ulcers want to pop up. They're not full blown yet but they're fighting to be. I'm just hanging out "In the Waiting Line" (AndyBarwick.com) for my CT results.
Integrative Medicine is about looking at the bigger picture not just the disease. The "Whole Person"; your mind, body and spirit. Neglecting certain areas of your life can cause disease and cause an existing disease to become worse. Different areas of your life require more attention in order to heal.
These interviews also touch on the importance of caregivers and physicians in assisting a person in achieving their goals. Maintaining positive energy is crucial. It's important to surround yourself with positive people...we feed off each others energy!
I know what you're thinking, "but Annie, you believe in God, you're not supposed to talk about energy and meditation" Let's just say I believe in Integrative Religion also...I'll post more about my God later.
These videos are inspirational for anyone who is suffering from a disease or illness or if you have a loved one with health problems.
Cut and paste this link into your web browser!
http://www.pbs.org/thenewmedicine/interview.html
Also, check out the documentary by Dana Reeve called;
"The New Medicine" (if you have netflix it's available as "Watch Instantly" also)
Today:
Finally started reading "Water for Elephants" by Sara Gruen, borrowed it from my mom. Thanks Mom...hopefully I won't loose it again. Yoga today. My breathing seems easier lately but I have a couple areas in my mouth where ulcers want to pop up. They're not full blown yet but they're fighting to be. I'm just hanging out "In the Waiting Line" (AndyBarwick.com) for my CT results.
Wednesday, April 28, 2010
Day 23. The Doughnut Inner Tube
Today was my CT scan. I've had one before and this one wasn't much better.
You lay on a bed while you slide in and out of a huge taunting doughnut. The hum of the doughnut gets louder and louder, what if it spins off it's base? I started thinking about how it would take me with it, rolling down the hall, bouncing here and there like a tube ride that's gone seriously wrong. You can feel the wind from the thing inside the doughnut inner tube spinning around at the speed of light. It circled around my torso taking 2,400 images within a matter of seconds. The white walls. The IV catheter in my arm. The strangers behind the glass. The mechanical voice telling me when and how to breath. The thought of radiation exposure running through my mind over and over again. Constantly praying that I don't breath wrong otherwise we have to start all over again.
The images were a success, but no results yet.
The first set of images was the "High Resolution CT" this was to see if there are ulcers or scar tissue on my lungs (at least I think that's what it's for). The second was with the contrast dye. They inject it into your IV to see what's going on in your blood vessels. The contrast is no fun, it makes you veins burn, gives you a nasty taste in your mouth and makes you feel like you peed your pants. Of course they put a layer of protecting material over my breasts to reduce the exposure of radiation to my breast tissue, gracious of them.
No one explained to me at my CT scan in 2007 that they give off a fairly large amount of radiation. Although, even if they had I probably would've done it anyways since the words they were bouncing around were "blood clot". But this time I thought long and hard about whether or not I wanted to do it. Last week when my Pulmonologist suggested we do another one, his suggestion was followed by his after thought of "but it does expose you to radiation". For this reason I've tried for the last couple of days to talk myself out of going, it didn't work and I went anyways.
The tech that did my procedure was great, his name was Chuck and he told me some funny stories about his teenagers and brought me warm blankets. We talked about the radiation exposure and I told him my last CT was way back in 2007. He explained to me that radiation exposure is a "life dose" not something that eventually wears off. It sticks with you like glue, a really nasty glue. This leads me to a question....The concern with radiation exposure is that it can cause cancer right? Then why do we treat cancer patience with more radiation? I'm so confused. I think this will be my last CT Scan ever.
I have a little battle inside me (other then the civil war, Body vs Immune System). In my mind one side says "No, it's better not to know what's happening with your body" and then the other says "That's ridiculous! You have to know what's happening with your body"
You lay on a bed while you slide in and out of a huge taunting doughnut. The hum of the doughnut gets louder and louder, what if it spins off it's base? I started thinking about how it would take me with it, rolling down the hall, bouncing here and there like a tube ride that's gone seriously wrong. You can feel the wind from the thing inside the doughnut inner tube spinning around at the speed of light. It circled around my torso taking 2,400 images within a matter of seconds. The white walls. The IV catheter in my arm. The strangers behind the glass. The mechanical voice telling me when and how to breath. The thought of radiation exposure running through my mind over and over again. Constantly praying that I don't breath wrong otherwise we have to start all over again.
The images were a success, but no results yet.
The first set of images was the "High Resolution CT" this was to see if there are ulcers or scar tissue on my lungs (at least I think that's what it's for). The second was with the contrast dye. They inject it into your IV to see what's going on in your blood vessels. The contrast is no fun, it makes you veins burn, gives you a nasty taste in your mouth and makes you feel like you peed your pants. Of course they put a layer of protecting material over my breasts to reduce the exposure of radiation to my breast tissue, gracious of them.
No one explained to me at my CT scan in 2007 that they give off a fairly large amount of radiation. Although, even if they had I probably would've done it anyways since the words they were bouncing around were "blood clot". But this time I thought long and hard about whether or not I wanted to do it. Last week when my Pulmonologist suggested we do another one, his suggestion was followed by his after thought of "but it does expose you to radiation". For this reason I've tried for the last couple of days to talk myself out of going, it didn't work and I went anyways.
The tech that did my procedure was great, his name was Chuck and he told me some funny stories about his teenagers and brought me warm blankets. We talked about the radiation exposure and I told him my last CT was way back in 2007. He explained to me that radiation exposure is a "life dose" not something that eventually wears off. It sticks with you like glue, a really nasty glue. This leads me to a question....The concern with radiation exposure is that it can cause cancer right? Then why do we treat cancer patience with more radiation? I'm so confused. I think this will be my last CT Scan ever.
I have a little battle inside me (other then the civil war, Body vs Immune System). In my mind one side says "No, it's better not to know what's happening with your body" and then the other says "That's ridiculous! You have to know what's happening with your body"
Tuesday, April 27, 2010
Day 22. Changing my mind...again!
Start at Day 1. or you'll be lost in this strange bog of muck or blog of yuck, whatever.
I'm seriously thinking about changing my goal. This change depends on a couple things; what Dr Yazici says, he's the Rheumatologist that specializes in Behcet's Evaluation and Treatment at the Behcet's Clinic in New York at NYU (I leave on May 6th to have my first appointment with him in NY on the 7th), how my CT scan turns out next week and where my next PFT is at in a few months. I just feel like 180 days is a better number then 365. My Rheumie said I should take these meds for at least a year to have them work and for my body to respond to them, but he also said that the vasculitis in my lungs was progressing so I'm not really putting a lot of faith in his opinions these days. I don't HAVE to do anything I don't want to (that's typical Annie talking)
I haven't talked to David about this much. He is very pro-medication when it comes to the Imuran. It's kind of strange because he normally wants to take a more natural healing approach but apparently I'm difficult to deal with when I have a mouth full of ulcers and can't breath. At the same time we both want another baby sooner then later.
Lucy found her shadow with the help of her big sister this morning. It was pretty cute to watch. It reminded me of a book "Bear Shadow" by Frank Asch (one of my favorite children authors) He also wrote, "Milk and Cookies" and my Mom's favorite "Bread and Honey" check them out next time you're at the library with the kids.
I'm seriously thinking about changing my goal. This change depends on a couple things; what Dr Yazici says, he's the Rheumatologist that specializes in Behcet's Evaluation and Treatment at the Behcet's Clinic in New York at NYU (I leave on May 6th to have my first appointment with him in NY on the 7th), how my CT scan turns out next week and where my next PFT is at in a few months. I just feel like 180 days is a better number then 365. My Rheumie said I should take these meds for at least a year to have them work and for my body to respond to them, but he also said that the vasculitis in my lungs was progressing so I'm not really putting a lot of faith in his opinions these days. I don't HAVE to do anything I don't want to (that's typical Annie talking)
I haven't talked to David about this much. He is very pro-medication when it comes to the Imuran. It's kind of strange because he normally wants to take a more natural healing approach but apparently I'm difficult to deal with when I have a mouth full of ulcers and can't breath. At the same time we both want another baby sooner then later.
Lucy found her shadow with the help of her big sister this morning. It was pretty cute to watch. It reminded me of a book "Bear Shadow" by Frank Asch (one of my favorite children authors) He also wrote, "Milk and Cookies" and my Mom's favorite "Bread and Honey" check them out next time you're at the library with the kids.
Monday, April 26, 2010
Day 21. More Needles
Start at "Day 1. Drugs and Boobas"
Today I got my blood drawn again. This was a pre-CT scan blood draw, I'm guessing it's to see how my blood will react to the dye they'll be injecting into my veins. I have another blood draw at the end of the week for my bi weekly liver check. My elbow pits were just starting to look normal too. I don't mind the draws but I don't care for the bruises they leave. I was talking with the woman that took my blood and was joking with her about how I was starting to look a bit like a junky. She said it's nothing compared to some and it's really sad when they tie their own tourniquet and tell you where your best luck is going to be. Life could be worse.
I'm personally not a fan of synthetic hormones or hormone supplements and haven't been on birthcontrol in many years, but after a lot of thought and discussion we've decided to get on them again. I opted for the Depo-Provera shot every 12 weeks, this is a progesterone only contraceptive and it's 99.7% effective. The thought of getting pregnant while I'm on the Imuran really scares me, it can cause serious birth defects. Yes, I know. There are other contraceptive options but those can be annoying and uncomfortable so hormone injections are the way of life for us right now.
PS. Did you know they give you the Depo injection in your rump? I haven't had a shot in my butt since I was immunized as a child. As far as pain goes it was better then any shot I've ever had in my arm. I think I'll ask for my flu shots to be in my rump next time. Although, I'm not sure you can get flu shots when you're on immunosuppresants, another question for the doc.
Had lunch with my Mom after labs and injection, it was nice. I also went to the Monday Cardio/Conditioning Class this morning. It kicks my butt and I'm pretty sure the instructor smokes crack before she teaches the class, her energy is out of this world. I was able to keep moving for the entire 75 minutes this time, not quite as fast or as much as the other people in the class but I didn't quit before it was over so that's a plus.
Today I got my blood drawn again. This was a pre-CT scan blood draw, I'm guessing it's to see how my blood will react to the dye they'll be injecting into my veins. I have another blood draw at the end of the week for my bi weekly liver check. My elbow pits were just starting to look normal too. I don't mind the draws but I don't care for the bruises they leave. I was talking with the woman that took my blood and was joking with her about how I was starting to look a bit like a junky. She said it's nothing compared to some and it's really sad when they tie their own tourniquet and tell you where your best luck is going to be. Life could be worse.
I'm personally not a fan of synthetic hormones or hormone supplements and haven't been on birthcontrol in many years, but after a lot of thought and discussion we've decided to get on them again. I opted for the Depo-Provera shot every 12 weeks, this is a progesterone only contraceptive and it's 99.7% effective. The thought of getting pregnant while I'm on the Imuran really scares me, it can cause serious birth defects. Yes, I know. There are other contraceptive options but those can be annoying and uncomfortable so hormone injections are the way of life for us right now.
PS. Did you know they give you the Depo injection in your rump? I haven't had a shot in my butt since I was immunized as a child. As far as pain goes it was better then any shot I've ever had in my arm. I think I'll ask for my flu shots to be in my rump next time. Although, I'm not sure you can get flu shots when you're on immunosuppresants, another question for the doc.
Had lunch with my Mom after labs and injection, it was nice. I also went to the Monday Cardio/Conditioning Class this morning. It kicks my butt and I'm pretty sure the instructor smokes crack before she teaches the class, her energy is out of this world. I was able to keep moving for the entire 75 minutes this time, not quite as fast or as much as the other people in the class but I didn't quit before it was over so that's a plus.
Sunday, April 25, 2010
Day 20. Giving Thanks
Start at Day 1, everything will make much more sense if you do.
We sat around our dinner table tonight with good friends and I realized that our home is surrounded by some really incredible people, our neighbors. This Sunday's "Giving Thanks" is dedicated to them.
Thank you Kevin for your endless hours of help from spreading gravel, to landscaping our yard to helping with drywall in basement. You are an awesome friend. Thank you Sandy for letting Kevin spend so much time over here in the last two days and for your concern for me. Thank you for the emergency Lucy/Lily watch in the past. Thank you for the amazing bleeding heart and my unique sundu too. We are so lucky to have you as neighbors.
Thank you Jeff and Sandy for embracing our "get out of the house" visits and for feeding us when I had no motivation to cook (Sandy, your homemade chili was incredible). Jeff and Nicole, thank you for accompanying us and entertaining a crabby Lucy at Family Fun Night so I was able to dance with Lily while we were there. Thank you for being our friends and great neighbors.
Thank you Megan and Syah for your company this week. Your visits really mean a lot to me and Lucy.
Thank you Wayne and Lisa for always keeping a watch on our home and neighborhood. Thank you Lisa for the beautiful spring bouquet and the incredible assortment of starts from your yard last year when we were broke and I couldn't afford to buy any plants. Thank you for the bike you gave Lily. Thank you for accepting our cats into your yard and keeping them so loaded on catnip that they can't attack the birds in your bird feeders...they love you guys and so do we. Thanks for being perfect neighbors.
We sat around our dinner table tonight with good friends and I realized that our home is surrounded by some really incredible people, our neighbors. This Sunday's "Giving Thanks" is dedicated to them.
Thank you Kevin for your endless hours of help from spreading gravel, to landscaping our yard to helping with drywall in basement. You are an awesome friend. Thank you Sandy for letting Kevin spend so much time over here in the last two days and for your concern for me. Thank you for the emergency Lucy/Lily watch in the past. Thank you for the amazing bleeding heart and my unique sundu too. We are so lucky to have you as neighbors.
Thank you Jeff and Sandy for embracing our "get out of the house" visits and for feeding us when I had no motivation to cook (Sandy, your homemade chili was incredible). Jeff and Nicole, thank you for accompanying us and entertaining a crabby Lucy at Family Fun Night so I was able to dance with Lily while we were there. Thank you for being our friends and great neighbors.
Thank you Megan and Syah for your company this week. Your visits really mean a lot to me and Lucy.
Thank you Wayne and Lisa for always keeping a watch on our home and neighborhood. Thank you Lisa for the beautiful spring bouquet and the incredible assortment of starts from your yard last year when we were broke and I couldn't afford to buy any plants. Thank you for the bike you gave Lily. Thank you for accepting our cats into your yard and keeping them so loaded on catnip that they can't attack the birds in your bird feeders...they love you guys and so do we. Thanks for being perfect neighbors.
Saturday, April 24, 2010
Day 19. God's Horsing Around
My friend and I went for our Friday walk yesterday on a local multi-use trail. The trail we were on has a horse trail right next to it and yesterday we came across a beautiful black horse and rider. We pulled over for the babies to get an eye full and secretly for me also. I got to talking with the rider and I asked permission to approach her and she said absolutely.
She was either a young mare or an older filly. She'd only been broke since August and she was the sweetest horse I've ever met. The rider was a nice middle aged woman and after noticing how much I had taken to her horse she said "you must be a horse owner or just really like horses". I told her I've always loved horses and how impressive hers was.
The woman told us she had owned the horse since July and in a sense rescued her from the previous owners. They didn't want her due to the horse having a type of cancer that causes vasculitis (inflammation of the blood vessels). At this point I start laughing, I look back at my friend who is laughing and then at the horse who is nuzzling my belly and I say "well no wonder I like you so much". The woman looks a little confused so I tell her that I have a disease that causes vasculitis. Then we talk about the sores the horse gets around her genitals and mouth, and how she grinds up flax seed for her food because it has anti-inflammatory properties (I didn't know that). She also asked me how it was being pregnant with vasculitis. I give her the mini version; delivered three babies but only have two children, not sure if Pearl resulted in still born because of a fluke or should be contributed to my disease. I think she's contemplating breeding the horse, I hope I helped the decision making cause she would be a great mom (the horse).
After we said goodbye to the horse, my girlfriend started cracking up. She said only God would have a sense of humor like that. What are the chances that I've had this nagging desire to talk to people with the same issues and God sends me a horse. That's awesome.
She was either a young mare or an older filly. She'd only been broke since August and she was the sweetest horse I've ever met. The rider was a nice middle aged woman and after noticing how much I had taken to her horse she said "you must be a horse owner or just really like horses". I told her I've always loved horses and how impressive hers was.
The woman told us she had owned the horse since July and in a sense rescued her from the previous owners. They didn't want her due to the horse having a type of cancer that causes vasculitis (inflammation of the blood vessels). At this point I start laughing, I look back at my friend who is laughing and then at the horse who is nuzzling my belly and I say "well no wonder I like you so much". The woman looks a little confused so I tell her that I have a disease that causes vasculitis. Then we talk about the sores the horse gets around her genitals and mouth, and how she grinds up flax seed for her food because it has anti-inflammatory properties (I didn't know that). She also asked me how it was being pregnant with vasculitis. I give her the mini version; delivered three babies but only have two children, not sure if Pearl resulted in still born because of a fluke or should be contributed to my disease. I think she's contemplating breeding the horse, I hope I helped the decision making cause she would be a great mom (the horse).
After we said goodbye to the horse, my girlfriend started cracking up. She said only God would have a sense of humor like that. What are the chances that I've had this nagging desire to talk to people with the same issues and God sends me a horse. That's awesome.
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