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.
Friday, April 23, 2010
Day 18. Dr Russian
Today I meet a new Pulmonary doctor (Dr Russian).I just hope I don't have to spell Behcet's for him. I looked him up and it looks like he spent sometime at the NIH (National Institute of Health) so I guess that's a good. He contracts for Group Health but is a doctor out of the Western Washington Medical Group. I like the idea of contracted doctors when my health insurance and medical offices are ran by the same institution.
I got the results from last weeks blood draw. My white blood cells (WBC) are "slightly low" (3.8) but everything else is good. I'm confused though, I'm not sure if this means my liver is happy or a little sad. The results said the low WBC could be caused from the meds.
Dr appointment....
For some reason my appointment was posted as a "sleep evaluation" so Dr Russian was totally clueless when we got there. He hadn't looked at my file and had no idea we were there because of my "progressing" pulmonary disease (which is being caused by my Behcet's disease) . I was irritated that someone had dropped the ball and he was a bit taken back by the confusion. It was a bad way to start the appointment, but it ended well.
He said multiple times; "I'm not comfortable talking about this in great detail until I look at all the information". He said my echocardiogram from last week looked normal (and agrees with the UW that no pulmonary hypertension is present) and he ordered a high resolution CT scan for next week. He seemed excited that I'm going to NYU and eager to find out what Dr Yazici has to say.
He couldn't tell me why my diffusion capacity is abnormal and how it correlates to Behcet's.
He couldn't tell me if it's possible for my lungs to get better or if the damage is permanent.
He couldn't tell me what is happening to my lungs at all, except that I have a low diffusion capacity.
So we're still left with unanswered questions.
I told him I was really upset my Rheumie (Nyugen) and my other Pulmonary Doc (Green) had both called and told me my last PFT showed progression and I needed to start on immunosuppressant drugs right away. He briefly looked at my PFT's for the last 4 years and he disagrees with them.
He says my diffusion capacity is abnormally low but he doesn't see a severe decline with the last PFT to suggest a "progression" or "shrinking". However he does agree that I should continue on the Imuran therapy. The concern is to keep my lungs from becoming worse and since this is an unusual symptom of a rare disease it's better to play it safe. He knows Dr Green and will discuss my case with him and he'll be contacting the consulting doctor I saw at the UW also.
Overall I liked him. My Mom asked me if I liked him because he told me something I wanted to hear or because I actually like him. That's a hard question, I don't know if I'll ever really like any doctor, they're just so unfamiliar and distant. He want's me to follow up with him after I get back from NY and I will. We'll see what he has to say after he's done some homework and is a little more prepared.
...and he said to continue with the vigorous exercise!
I got the results from last weeks blood draw. My white blood cells (WBC) are "slightly low" (3.8) but everything else is good. I'm confused though, I'm not sure if this means my liver is happy or a little sad. The results said the low WBC could be caused from the meds.
Dr appointment....
For some reason my appointment was posted as a "sleep evaluation" so Dr Russian was totally clueless when we got there. He hadn't looked at my file and had no idea we were there because of my "progressing" pulmonary disease (which is being caused by my Behcet's disease) . I was irritated that someone had dropped the ball and he was a bit taken back by the confusion. It was a bad way to start the appointment, but it ended well.
He said multiple times; "I'm not comfortable talking about this in great detail until I look at all the information". He said my echocardiogram from last week looked normal (and agrees with the UW that no pulmonary hypertension is present) and he ordered a high resolution CT scan for next week. He seemed excited that I'm going to NYU and eager to find out what Dr Yazici has to say.
He couldn't tell me why my diffusion capacity is abnormal and how it correlates to Behcet's.
He couldn't tell me if it's possible for my lungs to get better or if the damage is permanent.
He couldn't tell me what is happening to my lungs at all, except that I have a low diffusion capacity.
So we're still left with unanswered questions.
I told him I was really upset my Rheumie (Nyugen) and my other Pulmonary Doc (Green) had both called and told me my last PFT showed progression and I needed to start on immunosuppressant drugs right away. He briefly looked at my PFT's for the last 4 years and he disagrees with them.
He says my diffusion capacity is abnormally low but he doesn't see a severe decline with the last PFT to suggest a "progression" or "shrinking". However he does agree that I should continue on the Imuran therapy. The concern is to keep my lungs from becoming worse and since this is an unusual symptom of a rare disease it's better to play it safe. He knows Dr Green and will discuss my case with him and he'll be contacting the consulting doctor I saw at the UW also.
Overall I liked him. My Mom asked me if I liked him because he told me something I wanted to hear or because I actually like him. That's a hard question, I don't know if I'll ever really like any doctor, they're just so unfamiliar and distant. He want's me to follow up with him after I get back from NY and I will. We'll see what he has to say after he's done some homework and is a little more prepared.
...and he said to continue with the vigorous exercise!
Wednesday, April 21, 2010
Day 17. Lung Transplant
Just want to clear up a small misconception. If my lungs continue to shrink, fail, be stupid whatever (which they won't) I would never be a candidate for a lung transplant. I appreciate the offers though and you all make me look at the human race in a whole new light when you offer me one of your vital organs. But it's just not really an option. My body is rejecting the lungs I have already so there would be no reason to give me new ones just for my body to destroy again.
It's kind of funny though, I've always been a giver or over-gifter. The other day I was telling my friend he shouldn't worry about his kidneys because I have one that I don't need. Unfortunately, I have to retract my offer. It's starting to look like I'm going to need all my organs these days, even a piddly kidney. I know you understand though. Besides after all these awesome chemicals I'm dumping into my body you probably wouldn't want it anyways.
So...if my lungs fail, I'll die. It's sad but simple, no transplants.
It's kind of funny though, I've always been a giver or over-gifter. The other day I was telling my friend he shouldn't worry about his kidneys because I have one that I don't need. Unfortunately, I have to retract my offer. It's starting to look like I'm going to need all my organs these days, even a piddly kidney. I know you understand though. Besides after all these awesome chemicals I'm dumping into my body you probably wouldn't want it anyways.
So...if my lungs fail, I'll die. It's sad but simple, no transplants.
Day 16. Sleep
Go back to Day 1 or you will be lost
Sleep seems to be slipping farther and farther from my grip. Breathing is more difficult when I lay down which induces panic mode. The combination of my mind and panic makes it hard to fall asleep. Sometimes I take a xanax before I go to bed, that seems to help me relax enough to fall asleep. I don't really like to do that though because I'm afraid my breathing will become too shallow once I finally do fall asleep. I spend half the day trying to consciously get a deep breath but I can't do that when I'm asleep, so how am I getting that extra oxygen that I need? Maybe that's why I'm not staying asleep. I seem to be waking up every couple hours. I have the most amazing bed and bedroom too, it's like a little cave and perfect for sleeping.
David, Lily and I were supposed to spend 4 hours volunteering in Union Slough this Saturday morning for slough restoration, I canceled it. I feel bad about it but I'm running myself too thin and spending 4 hours in the cold muddy slough is not going to help me feel better. Besides, I have to cook for 75 people for a wedding Saturday night. PTA volunteering, Family Fun Night at school, dance class, birthday party, personal exercise, shuffling David's swing schedule, Dr appointment, catering, I'm totally spent. Don't have much more to say today, just tired and need sleep.
PS. Thank you Christine for living so close to Target and letting me stop for an emergency "poop and run" this morning. A nice friend lets you stop by unannounced, a true friend lets you stop by so you can have explosive diarrhea in their bathroom and then leave. love you!
Sleep seems to be slipping farther and farther from my grip. Breathing is more difficult when I lay down which induces panic mode. The combination of my mind and panic makes it hard to fall asleep. Sometimes I take a xanax before I go to bed, that seems to help me relax enough to fall asleep. I don't really like to do that though because I'm afraid my breathing will become too shallow once I finally do fall asleep. I spend half the day trying to consciously get a deep breath but I can't do that when I'm asleep, so how am I getting that extra oxygen that I need? Maybe that's why I'm not staying asleep. I seem to be waking up every couple hours. I have the most amazing bed and bedroom too, it's like a little cave and perfect for sleeping.
David, Lily and I were supposed to spend 4 hours volunteering in Union Slough this Saturday morning for slough restoration, I canceled it. I feel bad about it but I'm running myself too thin and spending 4 hours in the cold muddy slough is not going to help me feel better. Besides, I have to cook for 75 people for a wedding Saturday night. PTA volunteering, Family Fun Night at school, dance class, birthday party, personal exercise, shuffling David's swing schedule, Dr appointment, catering, I'm totally spent. Don't have much more to say today, just tired and need sleep.
PS. Thank you Christine for living so close to Target and letting me stop for an emergency "poop and run" this morning. A nice friend lets you stop by unannounced, a true friend lets you stop by so you can have explosive diarrhea in their bathroom and then leave. love you!
Tuesday, April 20, 2010
Day 15. Andy Barwick
Start at "Day 1. Drugs and Boobas" or you're going to be very confused.
Got an email response from Andy Barwick today. I stumbled across his website www.andybarwick.com last week when I was on the ABDA's (American Behcet's Disease Association) Facebook. He has an aggressive form of Behcet's and posted some information about the National Institute of Health on ABDA's Facebook. They are accepting patients for Behcet's Protocol. He is a patient there and is undergoing an experimental form of treatment.
I have been in correspondence with 3 other people with Behcet's, besides Andy. They all have the Behcet's symptoms, genital and oral ulcers, aching joints, uveitis, rash, fatigue etc. These things are horrible and painful. My pulmonary symptom is painless but potentially fatal. I haven't continued much discussion with the 3 people I talked to before because I don't want to scare them and I can't relate to them. This is wrong of me, I'm being a coward. Andy is much sicker then I am and he responded to me with a fighting hope. It's all the same nasty disease just in a different fashion. He has given his body over to the NIH in order to help me and others like me. This makes him my new Hero. Thank you Andy!
Today:
Got my films in the mail. Went rollerblading this morning but I'm feeling like I might get sick if I don't take it easy for a couple days so no more exercising till Yoga on Thursday. Haven't heard from my dr's office so I'm guessing that my liver is happy. I'm looking forward to my Pulmonary apt on Friday. Per Andy's advice I will be talking with a therapist on a regular basis too.
Got an email response from Andy Barwick today. I stumbled across his website www.andybarwick.com last week when I was on the ABDA's (American Behcet's Disease Association) Facebook. He has an aggressive form of Behcet's and posted some information about the National Institute of Health on ABDA's Facebook. They are accepting patients for Behcet's Protocol. He is a patient there and is undergoing an experimental form of treatment.
I have been in correspondence with 3 other people with Behcet's, besides Andy. They all have the Behcet's symptoms, genital and oral ulcers, aching joints, uveitis, rash, fatigue etc. These things are horrible and painful. My pulmonary symptom is painless but potentially fatal. I haven't continued much discussion with the 3 people I talked to before because I don't want to scare them and I can't relate to them. This is wrong of me, I'm being a coward. Andy is much sicker then I am and he responded to me with a fighting hope. It's all the same nasty disease just in a different fashion. He has given his body over to the NIH in order to help me and others like me. This makes him my new Hero. Thank you Andy!
Today:
Got my films in the mail. Went rollerblading this morning but I'm feeling like I might get sick if I don't take it easy for a couple days so no more exercising till Yoga on Thursday. Haven't heard from my dr's office so I'm guessing that my liver is happy. I'm looking forward to my Pulmonary apt on Friday. Per Andy's advice I will be talking with a therapist on a regular basis too.
Monday, April 19, 2010
Day 14. Medical Records
Start at the beginning...Day 1. Drugs and Boobas
So I took the advice of many others who have this disease and requested my medical records to keep at home. Since I'm still shopping around for a Pulmonary doctor it's a good idea to have my stuff on hand. I requested all my records from Pulmonary, Cardiology and Rheumatology. I have to say it's kind of a hefty bundle. I needed to show my ID to pick them up last week and of course the woman on the phone told me it was somewhere it wasn't so I ended up all over hell trying to find them. Once I finally did find them, they didn't have the films. I didn't have time for all the bullshit so I left.
Then I got home and sorted through all of it. They didn't send me the results of any of my PFT's so I had to call and have them sent (since there was no way in hell I was wasting my gas to drive back over and pick them up). I received the second package in the mail on Saturday and it was still missing some PFT results. I called again and they are resending them again, for the third time. Why do I always feel like I'm saying "again"? Third times the charm, but I still haven't got my films (x-rays, CT scans and echocardios).
I have it all organized in a binder and ready for the new doctor on Friday and New York next month. Anyone who knows me is laughing because I'm ultra organized, unfortunately it's medical records I'm obsessing over today. Wishing it was something else like maybe receivables from my catering accounts.
Today:
Feeling good today. Had my blood drawn two days ago and I'm praying that my liver is happy with the new meds. The last of my canker sores are healing up and hopefully that will be the end of them for a long long time. I want to say the "R" word but I don't want to jinx myself. Trying to stay positive but sappy songs and movies still hit me hard. We went to church yesterday and prayed with some wonderful people. I'm lucky to have such a great husband and friend that wouldn't take "no" for an answer. Did a cardio/muscle conditioning class today. Still don't seem to have a problem breathing with exertion or exercise. I'm not sure why. I can be doing nothing and have to take a deep breath every 5 minutes, except I'm only able to get a deep breath about 1 out of 5 tries.
So I took the advice of many others who have this disease and requested my medical records to keep at home. Since I'm still shopping around for a Pulmonary doctor it's a good idea to have my stuff on hand. I requested all my records from Pulmonary, Cardiology and Rheumatology. I have to say it's kind of a hefty bundle. I needed to show my ID to pick them up last week and of course the woman on the phone told me it was somewhere it wasn't so I ended up all over hell trying to find them. Once I finally did find them, they didn't have the films. I didn't have time for all the bullshit so I left.
Then I got home and sorted through all of it. They didn't send me the results of any of my PFT's so I had to call and have them sent (since there was no way in hell I was wasting my gas to drive back over and pick them up). I received the second package in the mail on Saturday and it was still missing some PFT results. I called again and they are resending them again, for the third time. Why do I always feel like I'm saying "again"? Third times the charm, but I still haven't got my films (x-rays, CT scans and echocardios).
I have it all organized in a binder and ready for the new doctor on Friday and New York next month. Anyone who knows me is laughing because I'm ultra organized, unfortunately it's medical records I'm obsessing over today. Wishing it was something else like maybe receivables from my catering accounts.
Today:
Feeling good today. Had my blood drawn two days ago and I'm praying that my liver is happy with the new meds. The last of my canker sores are healing up and hopefully that will be the end of them for a long long time. I want to say the "R" word but I don't want to jinx myself. Trying to stay positive but sappy songs and movies still hit me hard. We went to church yesterday and prayed with some wonderful people. I'm lucky to have such a great husband and friend that wouldn't take "no" for an answer. Did a cardio/muscle conditioning class today. Still don't seem to have a problem breathing with exertion or exercise. I'm not sure why. I can be doing nothing and have to take a deep breath every 5 minutes, except I'm only able to get a deep breath about 1 out of 5 tries.
Sunday, April 18, 2010
Day 13. Giving Thanks!
Start at Day 1 if you're new to this blog...otherwise you won't know what's going on!
It's Sunday and time to give thanks again!
I had an overall good week. I'm thankful for my God humbling me so I would realize that I'm not Super Woman and that Prozac is not the enemy.
Thank you David for reminding me that just because I'm taking Prozac doesn't mean my feelings won't exist, it just means I will have some help dealing with them minus the stress. Thank you for telling me that you would marry me all over again when I told you that I was sorry I was sick. Also, I'm sorry I started crying in the restaurant and thank you for being as strong as you are when I'm as weak as I am. I love you David
I'm thankful for Lucy going pee pee on the potty. Lucy, you are only 21 months old and a smart as a whip. You got a harmonica from Daddy this week and you don't want to do anything but play it and dance at the same time, you are so cute. I'm thankful that you love music just like your Daddy. I'm thankful that you want to cuddle with me now and don't need to always nurse at the same time, you don't just use me for booba juice anymore! I love you Lucy
I'm thankful for Lily my beautiful and talented 8 year old. Thank you Lily for being patient with me when I'm not patient with you. And for brushing your hair and teeth everyday without a fight. Thank you for being careful with Lucy and getting her up with you in the morning for some sister playtime. I love you Lily
I'm thankful that my heart and brain are healthy.
I'm thankful for my friends: Thank you Chris for having us over for the UFC fight, it was nice to hang out with your gang even though the fight was a flop. Thank you Christine for being my yoga partner and my friend. Thank you Traci for being my walking partner and the laughter you brought me on Friday. Thank you Dawn for distracting me by talking to me about your silly kids while we were watching our kids at dance class together. I know you could tell I was crying behind my sunglasses and I really appreciate that you ignored it. Lol...that sounds crazy but I'm really thankful for normality right now. Thank you to my great friends that came over last night to spend time here with us. Thank you Jake, Dave needed the man-date to the movies!
This week I'm especially thankful for God blessing two special couples in my life with pregnancy. Both couples have been trying for a long time with surgeries, hormones and months of waiting to get pregnant. Thank you God for giving them babies. I love babies and I love being Auntie Annie!!!
It's Sunday and time to give thanks again!
I had an overall good week. I'm thankful for my God humbling me so I would realize that I'm not Super Woman and that Prozac is not the enemy.
Thank you David for reminding me that just because I'm taking Prozac doesn't mean my feelings won't exist, it just means I will have some help dealing with them minus the stress. Thank you for telling me that you would marry me all over again when I told you that I was sorry I was sick. Also, I'm sorry I started crying in the restaurant and thank you for being as strong as you are when I'm as weak as I am. I love you David
I'm thankful for Lucy going pee pee on the potty. Lucy, you are only 21 months old and a smart as a whip. You got a harmonica from Daddy this week and you don't want to do anything but play it and dance at the same time, you are so cute. I'm thankful that you love music just like your Daddy. I'm thankful that you want to cuddle with me now and don't need to always nurse at the same time, you don't just use me for booba juice anymore! I love you Lucy
I'm thankful for Lily my beautiful and talented 8 year old. Thank you Lily for being patient with me when I'm not patient with you. And for brushing your hair and teeth everyday without a fight. Thank you for being careful with Lucy and getting her up with you in the morning for some sister playtime. I love you Lily
I'm thankful that my heart and brain are healthy.
I'm thankful for my friends: Thank you Chris for having us over for the UFC fight, it was nice to hang out with your gang even though the fight was a flop. Thank you Christine for being my yoga partner and my friend. Thank you Traci for being my walking partner and the laughter you brought me on Friday. Thank you Dawn for distracting me by talking to me about your silly kids while we were watching our kids at dance class together. I know you could tell I was crying behind my sunglasses and I really appreciate that you ignored it. Lol...that sounds crazy but I'm really thankful for normality right now. Thank you to my great friends that came over last night to spend time here with us. Thank you Jake, Dave needed the man-date to the movies!
This week I'm especially thankful for God blessing two special couples in my life with pregnancy. Both couples have been trying for a long time with surgeries, hormones and months of waiting to get pregnant. Thank you God for giving them babies. I love babies and I love being Auntie Annie!!!
Saturday, April 17, 2010
Day 12. History Lesson #4
You may want to start at Day 1 Drugs and Boobas if you are new to this blog.
History Lesson #4
October 2007:
After the flu, the brain tumor and the herpes came the explosion of canker sores (oral ulcers). I've always thought they started right before I became pregnant with my second daughter Lucy, but now the more I think about it it seems they may have started when I actually became pregnant. They were horrible, I've never had them as bad as that flare before. I had to sleep with my mouth open with a towel under my head because it was too painful to swallow my saliva or shut my mouth. My tongue swelled up and my mouth was riddled with open ulcers. This happened when I didn't have health insurance so I went to a community health clinic and saw a Nurse Practitioner. She was young and had no idea what was going on but suspected that it was virus. The ulcers continued throughout my pregnancy. About 4 months into my pregnancy (I had insurance again) I went to Oral Medicine at the University of Washington. This is where I heard the term "autoimmune" in reference to my condition for the first time. After explaining my other issues to the doctor I was told I should see a Rheumatologist. (I love the UW)
I was in remission for about 8 months (Aug '09-March '10). 5 of those months I was pregnant with my third daughter, Pearl (another post). Remission TEMPORARILY ended about a month ago. The good thing is that I know I'm capable of going into remission.
I don't have serious joint issues like many others with Behcet's. I have aching in my big toes on occasion and back ache from time to time.
Last spring (2009) I got a rash on my arms, it resembled the rash I used to get on my legs. It was on the inside of both my forearms it itched and was red and swollen. It lasted for about 2 weeks. I probably had canker sores at the same time since I hadn't gone into remission yet.
History Lesson #4
October 2007:
After the flu, the brain tumor and the herpes came the explosion of canker sores (oral ulcers). I've always thought they started right before I became pregnant with my second daughter Lucy, but now the more I think about it it seems they may have started when I actually became pregnant. They were horrible, I've never had them as bad as that flare before. I had to sleep with my mouth open with a towel under my head because it was too painful to swallow my saliva or shut my mouth. My tongue swelled up and my mouth was riddled with open ulcers. This happened when I didn't have health insurance so I went to a community health clinic and saw a Nurse Practitioner. She was young and had no idea what was going on but suspected that it was virus. The ulcers continued throughout my pregnancy. About 4 months into my pregnancy (I had insurance again) I went to Oral Medicine at the University of Washington. This is where I heard the term "autoimmune" in reference to my condition for the first time. After explaining my other issues to the doctor I was told I should see a Rheumatologist. (I love the UW)
I was in remission for about 8 months (Aug '09-March '10). 5 of those months I was pregnant with my third daughter, Pearl (another post). Remission TEMPORARILY ended about a month ago. The good thing is that I know I'm capable of going into remission.
I don't have serious joint issues like many others with Behcet's. I have aching in my big toes on occasion and back ache from time to time.
Last spring (2009) I got a rash on my arms, it resembled the rash I used to get on my legs. It was on the inside of both my forearms it itched and was red and swollen. It lasted for about 2 weeks. I probably had canker sores at the same time since I hadn't gone into remission yet.
Friday, April 16, 2010
Day 11. History Lesson #3
New to this blog? You should start at Day 1...
History Lesson #3:
2006, 26 years old
I remember the first time I realized there was a bigger problem. I was standing in the door of my co-worker's office and said "Dang Jess, I'm really having a hard time breathing" She said it was probably from all the stress we were experiencing. The company I was working for had just landed a multi million dollar job and I was under a lot of pressure, but I didn't feel stressed to the point of not being able to breath. I shook it off and ignored it as best as possible.
2007, 27 years old
In 2007 I got the flu (influenza type A). I ended up in the emergency room, I told them I had been having breathing problems prior to getting sick and they did a CT scan on my lungs (which came back normal). At the time I was on birth control so their concern was that I might have a blood clot in my lungs. Shortly after I recovered from the flu I got a nasty sinus infection. This wasn't too surprising since the flu can make for a lot of drainage. The doc gave me antibiotics and ordered a chest x-rays and my first PFT (pulmonary function test). Like my CT scan the chest x-rays came back normal. The PFT did not. The antibiotics worked for my infection but sometime into taking them I got a huge canker sore in my gum line...the biggest one I've ever had, still to this day it takes the cake for the canker sores of all canker sores. This wasn't a real shock to me since I had had them sporadically my entire life. However, the size was very impressive.
2007-2010
Then I lost my health insurance...
Then I got health insurance but was pregnant (you don't always have accurate tests when you're pregnant nor will they do any good tests like imagery)
Then I lost my health insurance again...
Then I got health insurance again but I was pregnant...yes, again
Then I lost my health insurance again...
See a pattern? No worries...i have health insurance now, again.
Since the first one (2007) I've had 4 PFTs, once a year (when I have health insurance), they have all been normal with the exception of the "diffusing capacity", which was "significantly abnormal" at "56% of predicted with a good quality study." In lame man's terms; my lungs don't process the gases being drawn in which results in the wrong amount of gases coming out which results in being SCREWED. This has continued to be the problem over the last few years and is now worse. According to the chart notes from my last Rheumie appointment, it's 12% worse then last year (hence my Rheumies "shrinking lungs" description)...but I think there has been a mistake cause that's just plain crazy.
Today:
I'm in panic mode. I can't stand this anticipation. I want to crawl into a hole. Probably been doing too much research. Looks like people with Behcet's with Pulmonary problems have a high mortality rate, this would explain why I can't seem to find anyone that is experiencing the same thing as me. PS. I'm back on the Prozac, I'm just not that tough. I can't be falling apart watching Lily at dance class or constantly smelling Lucy's hair because I think it's the last chance I'll have. Feeling like a train wreck with a lot of casualties.
Later Today:
My day got better. Shortly after I wrote my previous post an old friend called and wanted to go on a walk. She hadn't read my blog but just felt she should give me a call. I love it when things like that happen. I needed the 10 mile walk and our 1 year olds played in sun while we visited. It was perfect.
History Lesson #3:
2006, 26 years old
I remember the first time I realized there was a bigger problem. I was standing in the door of my co-worker's office and said "Dang Jess, I'm really having a hard time breathing" She said it was probably from all the stress we were experiencing. The company I was working for had just landed a multi million dollar job and I was under a lot of pressure, but I didn't feel stressed to the point of not being able to breath. I shook it off and ignored it as best as possible.
2007, 27 years old
In 2007 I got the flu (influenza type A). I ended up in the emergency room, I told them I had been having breathing problems prior to getting sick and they did a CT scan on my lungs (which came back normal). At the time I was on birth control so their concern was that I might have a blood clot in my lungs. Shortly after I recovered from the flu I got a nasty sinus infection. This wasn't too surprising since the flu can make for a lot of drainage. The doc gave me antibiotics and ordered a chest x-rays and my first PFT (pulmonary function test). Like my CT scan the chest x-rays came back normal. The PFT did not. The antibiotics worked for my infection but sometime into taking them I got a huge canker sore in my gum line...the biggest one I've ever had, still to this day it takes the cake for the canker sores of all canker sores. This wasn't a real shock to me since I had had them sporadically my entire life. However, the size was very impressive.
2007-2010
Then I lost my health insurance...
Then I got health insurance but was pregnant (you don't always have accurate tests when you're pregnant nor will they do any good tests like imagery)
Then I lost my health insurance again...
Then I got health insurance again but I was pregnant...yes, again
Then I lost my health insurance again...
See a pattern? No worries...i have health insurance now, again.
Since the first one (2007) I've had 4 PFTs, once a year (when I have health insurance), they have all been normal with the exception of the "diffusing capacity", which was "significantly abnormal" at "56% of predicted with a good quality study." In lame man's terms; my lungs don't process the gases being drawn in which results in the wrong amount of gases coming out which results in being SCREWED. This has continued to be the problem over the last few years and is now worse. According to the chart notes from my last Rheumie appointment, it's 12% worse then last year (hence my Rheumies "shrinking lungs" description)...but I think there has been a mistake cause that's just plain crazy.
Today:
I'm in panic mode. I can't stand this anticipation. I want to crawl into a hole. Probably been doing too much research. Looks like people with Behcet's with Pulmonary problems have a high mortality rate, this would explain why I can't seem to find anyone that is experiencing the same thing as me. PS. I'm back on the Prozac, I'm just not that tough. I can't be falling apart watching Lily at dance class or constantly smelling Lucy's hair because I think it's the last chance I'll have. Feeling like a train wreck with a lot of casualties.
Later Today:
My day got better. Shortly after I wrote my previous post an old friend called and wanted to go on a walk. She hadn't read my blog but just felt she should give me a call. I love it when things like that happen. I needed the 10 mile walk and our 1 year olds played in sun while we visited. It was perfect.
Thursday, April 15, 2010
Day 10. History Lesson #2
If you are new to this blog please start at "Day 1 Drugs and Boobas"
By the way, after the eye doctor told me nothing was wrong, I thought I had a brain tumor causing my eye pain. No joke, I was totally freaked out thinking it was tumor pushing on my eyeball....it was creepy...but it all made sense later.
Then there was Herpes (I promised to be an open book):
When I was 23 years old I was getting ready for a 4 day white water rafting trip on the Dechutes River in Oregon. I had just completed guide training and this was going to be my first real guiding experience. I had never been on the Dechutes river or guided for 4 days straight. The day before I left for Oregon I started having discomfort and unusual sores on my flower (use your imagination). Naturally I freaked out and ran to the doctor, she examined me and tested me for Herpes Simplex 2, a sexually transmitted disease. I tested negative but she chalked it up to a "false negative" (I have tested negative since then also). She prescribed me an anti-viral (Acyclovir) medication that I took for many years until I realized the sores weren't caused from genital herpes but were actually a symptom of Behcet's Disease. My genital ulcers are mild, nothing like other Behcet's sufferers.
Genital ulcers (not contagious) are one of the most common symptoms of Behcet's Disease and is often misdiagnosed as Herpes Simplex 2.
Come back tomorrow for Lesson #3!
Today has been great:
Started my Yoga regiment today. Every Thursday I'll be going to Yoga at my local gym. This was actually harder on my lungs then the cardio and weight training I did yesterday. I've tried yoga before and knew it would be a good way to focus on my breathing. So far so good...if a part of your body is unhealthy it needs exercise right?
By the way, after the eye doctor told me nothing was wrong, I thought I had a brain tumor causing my eye pain. No joke, I was totally freaked out thinking it was tumor pushing on my eyeball....it was creepy...but it all made sense later.
Then there was Herpes (I promised to be an open book):
When I was 23 years old I was getting ready for a 4 day white water rafting trip on the Dechutes River in Oregon. I had just completed guide training and this was going to be my first real guiding experience. I had never been on the Dechutes river or guided for 4 days straight. The day before I left for Oregon I started having discomfort and unusual sores on my flower (use your imagination). Naturally I freaked out and ran to the doctor, she examined me and tested me for Herpes Simplex 2, a sexually transmitted disease. I tested negative but she chalked it up to a "false negative" (I have tested negative since then also). She prescribed me an anti-viral (Acyclovir) medication that I took for many years until I realized the sores weren't caused from genital herpes but were actually a symptom of Behcet's Disease. My genital ulcers are mild, nothing like other Behcet's sufferers.
Genital ulcers (not contagious) are one of the most common symptoms of Behcet's Disease and is often misdiagnosed as Herpes Simplex 2.
Come back tomorrow for Lesson #3!
Today has been great:
Started my Yoga regiment today. Every Thursday I'll be going to Yoga at my local gym. This was actually harder on my lungs then the cardio and weight training I did yesterday. I've tried yoga before and knew it would be a good way to focus on my breathing. So far so good...if a part of your body is unhealthy it needs exercise right?
Wednesday, April 14, 2010
Day 9. History Lesson #1
New to this blog? You should start at Day 1 Drugs and Boobas so you are filled in...Enjoy!
I figured I should share the history of my symptoms with you. There are certain physical symptoms that I currently have or have had in the past. Many different things happen to our bodies for different reasons. I'm not sure if these things have happened to me because of my Bechet's or not, but it was these symptoms that have resulted in my Behcet's diagnosis.
In the beginning:
I have always had canker sores. When I was little I would get one or sometimes two at a time, but in my opinion it was probably more often then normal children. I can remember my Mother telling me to eat yogurt and we would always buy the milk with Acidophilus because she thought it would help the canker sores (it didn't). This is also where the "swish with warm salt water" started, which I now know was karma at it's best. I love you Mom!
During the same time period I had a hive like rash on my legs, it itched like mad and was red. It would come and go without reason. It started when I was a small child, maybe 4 or 5, I'm not sure exactly when it went away but I haven't had that rash in probably 15 years.
When I was a teenager I started getting pain in my eye, especially the right one. It was a constant pain and was accompanied with blurred vision. My mom took me to the eye doctor thinking that I had eye strain from reading (not sure where she got that from, she knew reading was the last thing I was doing). The Optometrist (not Opthomologist, big difference) told me I had "floaters" and it was normal and that the pain probably was just strain. I've continued to have eye pain/blurred vision throughout my life. It comes and goes. As of my last visit to the Opthomologist I didn't have any damage from inflammation to my eyes...Thank God!
That's enough for today, don't forget to do your homework and I'll see you tomorrow for History Lesson #2.
I figured I should share the history of my symptoms with you. There are certain physical symptoms that I currently have or have had in the past. Many different things happen to our bodies for different reasons. I'm not sure if these things have happened to me because of my Bechet's or not, but it was these symptoms that have resulted in my Behcet's diagnosis.
In the beginning:
I have always had canker sores. When I was little I would get one or sometimes two at a time, but in my opinion it was probably more often then normal children. I can remember my Mother telling me to eat yogurt and we would always buy the milk with Acidophilus because she thought it would help the canker sores (it didn't). This is also where the "swish with warm salt water" started, which I now know was karma at it's best. I love you Mom!
During the same time period I had a hive like rash on my legs, it itched like mad and was red. It would come and go without reason. It started when I was a small child, maybe 4 or 5, I'm not sure exactly when it went away but I haven't had that rash in probably 15 years.
When I was a teenager I started getting pain in my eye, especially the right one. It was a constant pain and was accompanied with blurred vision. My mom took me to the eye doctor thinking that I had eye strain from reading (not sure where she got that from, she knew reading was the last thing I was doing). The Optometrist (not Opthomologist, big difference) told me I had "floaters" and it was normal and that the pain probably was just strain. I've continued to have eye pain/blurred vision throughout my life. It comes and goes. As of my last visit to the Opthomologist I didn't have any damage from inflammation to my eyes...Thank God!
That's enough for today, don't forget to do your homework and I'll see you tomorrow for History Lesson #2.
Tuesday, April 13, 2010
Day 8. Blood and Guts
Welcome! You may want to start at "Day 1. Drugs and Boobas" otherwise you might be lost.
I don't really have a problem with getting my blood drawn. In fact I'd rather have a needle in my vein then in the tissue of my bicep (flu shots hurt like hell!). They took my blood today to test for whatever it is they need to test for in order to see if my body will be able to metabolize the Imuran. They were going to do this at the same time as my first "liver-check" blood draw which isn't until the end of this week but insurance companies are a pain in my ass (long boring story) so i have to do it today which means I'm having two blood draws this week...lame
I also had an Echo Cardiogram today. This was my second Echo Cardiogram and although they are painless for the most part, they're really weird. I've decided I don't like watching my heart pump on a screen with a stranger manipulating my chest with a gooey cold mechanism while laying on a bed made for someone half my size in a position that makes every part of your body fall asleep simultaneously. On the up side, it was warm in the room and I got a nice older lady this time. She had a pretty string of pearls for her eye glasses to hang on, you know, so she doesn't loose them...what the heck is that called? Eye glass string thing? Anyways..
The reason for the second Echo Cardiogram was to establish if Pulmonary Hypertension (high blood pressure in my lungs) is present. They do this by measuring the blood flow through my heart into my lungs and vice versa (or something like that) The UW's Pulmonary Hyp Dept already ruled out Pulmonary Hypertension back in 2008 when I saw them, we are double checking just for the sake of chance. I told the woman the important number from the last time it was done, "33" (which was average but a tiny bit high) she told me she didn't think we were going to get up to "33" today (which is good if you don't want to have hypertension but bad if you'd rather have that then shrinking lungs). She couldn't tell me the exact number because it's against the rules. RULES ARE MADE FOR BREAKING!!!
I see the Pulmonalogist next Friday so stay tuned in for what he says. He's a new Dr, I'm still shopping around for one I like...maybe he'll just send me to the UW like the last one did. Maybe I should just go back down there, they're super nice and smart, but I'm worried that Group Health won't pay for as much of my treatment since it's "out of coverage". They have given me a referral but that doesn't mean they'll pay for everything. It's such stress trying to deal with all the insurance bull crap.
I don't really have a problem with getting my blood drawn. In fact I'd rather have a needle in my vein then in the tissue of my bicep (flu shots hurt like hell!). They took my blood today to test for whatever it is they need to test for in order to see if my body will be able to metabolize the Imuran. They were going to do this at the same time as my first "liver-check" blood draw which isn't until the end of this week but insurance companies are a pain in my ass (long boring story) so i have to do it today which means I'm having two blood draws this week...lame
I also had an Echo Cardiogram today. This was my second Echo Cardiogram and although they are painless for the most part, they're really weird. I've decided I don't like watching my heart pump on a screen with a stranger manipulating my chest with a gooey cold mechanism while laying on a bed made for someone half my size in a position that makes every part of your body fall asleep simultaneously. On the up side, it was warm in the room and I got a nice older lady this time. She had a pretty string of pearls for her eye glasses to hang on, you know, so she doesn't loose them...what the heck is that called? Eye glass string thing? Anyways..
The reason for the second Echo Cardiogram was to establish if Pulmonary Hypertension (high blood pressure in my lungs) is present. They do this by measuring the blood flow through my heart into my lungs and vice versa (or something like that) The UW's Pulmonary Hyp Dept already ruled out Pulmonary Hypertension back in 2008 when I saw them, we are double checking just for the sake of chance. I told the woman the important number from the last time it was done, "33" (which was average but a tiny bit high) she told me she didn't think we were going to get up to "33" today (which is good if you don't want to have hypertension but bad if you'd rather have that then shrinking lungs). She couldn't tell me the exact number because it's against the rules. RULES ARE MADE FOR BREAKING!!!
I see the Pulmonalogist next Friday so stay tuned in for what he says. He's a new Dr, I'm still shopping around for one I like...maybe he'll just send me to the UW like the last one did. Maybe I should just go back down there, they're super nice and smart, but I'm worried that Group Health won't pay for as much of my treatment since it's "out of coverage". They have given me a referral but that doesn't mean they'll pay for everything. It's such stress trying to deal with all the insurance bull crap.
Monday, April 12, 2010
Day 7. Why am I blogging?
Hi! If you're new to this cool blog you may want to start at the beginning "Day 1. Drugs and Boobas".
Day 7. Why am I blogging?
At first I wasn't really sure why I started my blog. I thought I would do it because someone told me I should. I figured they saw some potential in me and since I love to write, it made sense to do it. But as I started doing more research about my Behcet's Disease I realized that having a rare disease is the loneliest feeling I've ever encountered (and I was an only child so I know a little about being lonely). To top it off I have a rare symptom of a rare disease which has made it even more difficult. (I'll blog about my rare symptom after I know more about it)
I just want to talk to another person with Behcet's that has shrinking lungs..is that too much to ask for?
Jess commented on my post yesterday and she is absolutely right. Someday this blog is going to help someone else and hopefully it will eliminate the sad and lonely feeling that accompanies this horrible disease. To that person I say...Dear Person, You aren't alone, please keep reading I have a lot to say, I hope this helps you, I hope that I write everything you want and need to hear. PS. Start blogging now so that you can help someone too!
The other reason I'm blogging is because (as my husband has pointed out) it's "therapeutic" and apparently I'm "a good writer"....I love you David.
There is also that small bit of wanting to educate the world about this disease.
Check out this website for more information on Behcet's Disease...watch the video, it's very interesting...and if you're looking for a charity, this is a great one!
www.behcets.com
Day 7. Why am I blogging?
At first I wasn't really sure why I started my blog. I thought I would do it because someone told me I should. I figured they saw some potential in me and since I love to write, it made sense to do it. But as I started doing more research about my Behcet's Disease I realized that having a rare disease is the loneliest feeling I've ever encountered (and I was an only child so I know a little about being lonely). To top it off I have a rare symptom of a rare disease which has made it even more difficult. (I'll blog about my rare symptom after I know more about it)
I just want to talk to another person with Behcet's that has shrinking lungs..is that too much to ask for?
Jess commented on my post yesterday and she is absolutely right. Someday this blog is going to help someone else and hopefully it will eliminate the sad and lonely feeling that accompanies this horrible disease. To that person I say...Dear Person, You aren't alone, please keep reading I have a lot to say, I hope this helps you, I hope that I write everything you want and need to hear. PS. Start blogging now so that you can help someone too!
The other reason I'm blogging is because (as my husband has pointed out) it's "therapeutic" and apparently I'm "a good writer"....I love you David.
There is also that small bit of wanting to educate the world about this disease.
Check out this website for more information on Behcet's Disease...watch the video, it's very interesting...and if you're looking for a charity, this is a great one!
www.behcets.com
Sunday, April 11, 2010
Day 6. Giving Thanks!
New to this blog? You may want to start at the beginning...Day 1
I spend a lot of time talking about my Behcet's Disease on this blog and I'm sure reading about it can be a bit miserable. So I decided that Sunday is a good day to reflect on my week and give thanks to the people and things in my life that made my week wonderful! Here it goes...
~Thank you Dr Nyugen (my home based Rheumatologist) for having a sense of humor on Monday. He told me that my pregnancy test came back positive (he was kidding)....I almost pooped my pants in the middle of the doctors office. And for getting my referral into the UW (so I don't have to go through the review process. This is awesome cause now I don't have to pray they accept my case).
~Thank you Dr Roehl for giving me the referral to the doctor in New York and for fighting for me...Dear Group Health, please pay for my Dr Yazici apt next month. Sincerely, Annie
~Thank you Rod T for staying up late with me Saturday night when I couldn't sleep and for talking about my disease with some really incredible people.
~Thank you my two new Behcets friends (Shari and Lynda) for sharing your stories with me.
~Thank you Christine for the reminders this week that God loves me and listening with an open mind about my abstract views.
~Thank you Tami for not being satisfied with just knowing that I was crying while chatting with you on FB and calling me so you could actually hear me....you're funny
~Thank you Mom for watching Lucy this weekend so Dave and I could spend some much needed time together...I got to sleep in till 10:40am!!!
~Thank you big sister Gina for giving me something so incredible to look forward to.
~Special THANK YOU to everyone who is following me and reads my blogs. It means a lot to me, and I'm grateful you take the time to be informed. Thanks for caring about me and my cause.
~Thank you Lily (my 8 yr old daughter) for accepting the answer I gave you to your question; "are you going to die?" My answer; "well, we're all going to die...but I don't think I'm going to die today"
I spend a lot of time talking about my Behcet's Disease on this blog and I'm sure reading about it can be a bit miserable. So I decided that Sunday is a good day to reflect on my week and give thanks to the people and things in my life that made my week wonderful! Here it goes...
~Thank you Dr Nyugen (my home based Rheumatologist) for having a sense of humor on Monday. He told me that my pregnancy test came back positive (he was kidding)....I almost pooped my pants in the middle of the doctors office. And for getting my referral into the UW (so I don't have to go through the review process. This is awesome cause now I don't have to pray they accept my case).
~Thank you Dr Roehl for giving me the referral to the doctor in New York and for fighting for me...Dear Group Health, please pay for my Dr Yazici apt next month. Sincerely, Annie
~Thank you Rod T for staying up late with me Saturday night when I couldn't sleep and for talking about my disease with some really incredible people.
~Thank you my two new Behcets friends (Shari and Lynda) for sharing your stories with me.
~Thank you Christine for the reminders this week that God loves me and listening with an open mind about my abstract views.
~Thank you Tami for not being satisfied with just knowing that I was crying while chatting with you on FB and calling me so you could actually hear me....you're funny
~Thank you Mom for watching Lucy this weekend so Dave and I could spend some much needed time together...I got to sleep in till 10:40am!!!
~Thank you big sister Gina for giving me something so incredible to look forward to.
~Special THANK YOU to everyone who is following me and reads my blogs. It means a lot to me, and I'm grateful you take the time to be informed. Thanks for caring about me and my cause.
~Thank you Lily (my 8 yr old daughter) for accepting the answer I gave you to your question; "are you going to die?" My answer; "well, we're all going to die...but I don't think I'm going to die today"
Saturday, April 10, 2010
Day 5. Prozac for a minute.
~Welcome to my blog, you can get filled in by starting at the beginning, "Day 1 Drugs and Boobas." Don't deprive yourself of good humor!
Day 5. Prozac for a minute
I started taking Prozac 4 days ago and today I will not be taking one. I'm not going to self-medicate or prescription-medicate for my depression/anxiety.
If I start refusing to get out of bed again Dave knows who to call, you. If I don't get angry...well, shit won't get done (I clean when I'm mad) and my random crying fits will eventually fade away. I'm supposed to be angry, sad, confused and scared. These are all normal feelings. Why would I try and mask them, it's a process and I need to work through it (sorry everyone, it was worth a try...I guess we're back to Nutcase Annie).
Exercise, diet, God and love; these are the things that are going to regulate and balance my emotional brain chemistry on a daily basis. Although, I have to admit that I am keeping an open mind about the xanax prescription they gave me. If I start to have a major break down and everything else fails I might take one.
Wish me luck!
Day 5. Prozac for a minute
I started taking Prozac 4 days ago and today I will not be taking one. I'm not going to self-medicate or prescription-medicate for my depression/anxiety.
If I start refusing to get out of bed again Dave knows who to call, you. If I don't get angry...well, shit won't get done (I clean when I'm mad) and my random crying fits will eventually fade away. I'm supposed to be angry, sad, confused and scared. These are all normal feelings. Why would I try and mask them, it's a process and I need to work through it (sorry everyone, it was worth a try...I guess we're back to Nutcase Annie).
Exercise, diet, God and love; these are the things that are going to regulate and balance my emotional brain chemistry on a daily basis. Although, I have to admit that I am keeping an open mind about the xanax prescription they gave me. If I start to have a major break down and everything else fails I might take one.
Wish me luck!
Friday, April 9, 2010
Day 4. Countdown
(If you're new to this blog you may want to read day 1 and 2)
361 days left.
I committed to a year of Imuran therapy as a treatment for my Behcet's disease. My Rheumatologist told me it would take a year to see if my body is responding to the medication...Bad news; I'm taking these drugs for the next year. Good news; he thinks I'm going to live a year...hell yeah!!!
There are a couple of factors that could change this goal.
1. If I have a certain gene that will not allow my body to metabolize the medication therefore causing it to build up in my system. We'll find out after my first bi-weekly blood draw.
2. If my liver starts to show signs of damage.
3. If Dr. Yazici disagrees with my current treatment. I see him at the Behcet's clinic in New York next month.
4. If we don't start to see some improvement. I'm still not sure if improvement means my lungs will start to get bigger or they just won't get any smaller, frankly my idea of improvement would be either of those. Lack of improvement may result in increasing my dosage (that would be a major bummer and would really piss me off).
My ultimate goal is to temporarily stop these meds in a year (361 days to be exact) and become pregnant. If this medication proves to be a success I will need to take it for the rest of my life (besides while pregnant and nursing) This is the countdown to live baby (another blog) number 3.
SYMPTOM UPDATE:
My canker soars are horrible and incredibly painful. As soon as I think they are getting better they get worse. Since they are also a product of my overactive immune system I find myself using their progress as a way to judge my lungs' progress. I shouldn't do that, it's a real downer.
BEHCET'S FRIENDS:
Something to look forward to; a friend of mine may have found a gentlemen with the same rare disease and rare symptom! Thank you God!!!
361 days left.
I committed to a year of Imuran therapy as a treatment for my Behcet's disease. My Rheumatologist told me it would take a year to see if my body is responding to the medication...Bad news; I'm taking these drugs for the next year. Good news; he thinks I'm going to live a year...hell yeah!!!
There are a couple of factors that could change this goal.
1. If I have a certain gene that will not allow my body to metabolize the medication therefore causing it to build up in my system. We'll find out after my first bi-weekly blood draw.
2. If my liver starts to show signs of damage.
3. If Dr. Yazici disagrees with my current treatment. I see him at the Behcet's clinic in New York next month.
4. If we don't start to see some improvement. I'm still not sure if improvement means my lungs will start to get bigger or they just won't get any smaller, frankly my idea of improvement would be either of those. Lack of improvement may result in increasing my dosage (that would be a major bummer and would really piss me off).
My ultimate goal is to temporarily stop these meds in a year (361 days to be exact) and become pregnant. If this medication proves to be a success I will need to take it for the rest of my life (besides while pregnant and nursing) This is the countdown to live baby (another blog) number 3.
SYMPTOM UPDATE:
My canker soars are horrible and incredibly painful. As soon as I think they are getting better they get worse. Since they are also a product of my overactive immune system I find myself using their progress as a way to judge my lungs' progress. I shouldn't do that, it's a real downer.
BEHCET'S FRIENDS:
Something to look forward to; a friend of mine may have found a gentlemen with the same rare disease and rare symptom! Thank you God!!!
Thursday, April 8, 2010
Day 3. Giving up everything for an A+
(If this is your first visit to my blog you may want to read Day 1 for a little insight)
I woke up this morning feeling like a million bucks. I felt so good that I cleaned the house, I even mopped the floors and scrubbed the tub and toilet (my extended pity party made for a really nasty bathroom).
My sister in law asked me today how I was doing and if I was "giving up everything". When she asked me this I was eating my lunch, a head of raw broccoli and a cooked skinless/boneless chicken breast. My breakfast was a banana, a piece of whole wheat bread with a tablespoon of peanut butter, washed down with a large glass of water and a handful of pills.
The answer to your question my sweet sister is yes, I have given up everything. What exactly is "everything"? Alcohol, Tobacco, Bad Fats and Sugars, etc... pretty much everything wonderful. Why? I must eat for my blood type (A +). Since I'm not sure exactly how to do this yet I've decided to start with flushing out the toxic waste and removing the cause of the waste from my body.
I'm not totally crazy. I still have one vice, coffee (1 cup per day).
BOOBA UPDATE:
Lucy has become strangely obsessed with a certain piece of art in the house; the plaster mold of my pregnant bust (yes, it includes my breasts) . It's painted gold and is proudly displayed in our living room. Lucy points to it and exclaims "booba booba Mama booba!" and then tries to rip my shirt off my chest. She takes her Daddy by the hand and guides him over to it, points and says "Dada booba Mama" She is also starting to nurse her own baby dolls (which is really cute to watch). She only asked for booba a few times yesterday and once so far this morning. You might think nursing a 20 month old is strange...you're wrong (nursing a 4 year old is strange.) It was wonderful and I'm grateful we were able to nurse for as long as we did.
DRUG UPDATE:
So far I'm not having any side effects from the Imuran, except maybe this new burst of energy (the sunshine helps too). Don't get too excited, Imuran can be a surprise killer. I'm not currently experiencing the "common side effects" (nausea and vomiting) but some of the other possible side effects don't happen until later; leukemia, lymphoma, skin cancer etc,. I'm not worried, I'm not going to get any of those. I do have some diarrhea from the Colchicine, but I can live with that.
I woke up this morning feeling like a million bucks. I felt so good that I cleaned the house, I even mopped the floors and scrubbed the tub and toilet (my extended pity party made for a really nasty bathroom).
My sister in law asked me today how I was doing and if I was "giving up everything". When she asked me this I was eating my lunch, a head of raw broccoli and a cooked skinless/boneless chicken breast. My breakfast was a banana, a piece of whole wheat bread with a tablespoon of peanut butter, washed down with a large glass of water and a handful of pills.
The answer to your question my sweet sister is yes, I have given up everything. What exactly is "everything"? Alcohol, Tobacco, Bad Fats and Sugars, etc... pretty much everything wonderful. Why? I must eat for my blood type (A +). Since I'm not sure exactly how to do this yet I've decided to start with flushing out the toxic waste and removing the cause of the waste from my body.
I'm not totally crazy. I still have one vice, coffee (1 cup per day).
BOOBA UPDATE:
Lucy has become strangely obsessed with a certain piece of art in the house; the plaster mold of my pregnant bust (yes, it includes my breasts) . It's painted gold and is proudly displayed in our living room. Lucy points to it and exclaims "booba booba Mama booba!" and then tries to rip my shirt off my chest. She takes her Daddy by the hand and guides him over to it, points and says "Dada booba Mama" She is also starting to nurse her own baby dolls (which is really cute to watch). She only asked for booba a few times yesterday and once so far this morning. You might think nursing a 20 month old is strange...you're wrong (nursing a 4 year old is strange.) It was wonderful and I'm grateful we were able to nurse for as long as we did.
DRUG UPDATE:
So far I'm not having any side effects from the Imuran, except maybe this new burst of energy (the sunshine helps too). Don't get too excited, Imuran can be a surprise killer. I'm not currently experiencing the "common side effects" (nausea and vomiting) but some of the other possible side effects don't happen until later; leukemia, lymphoma, skin cancer etc,. I'm not worried, I'm not going to get any of those. I do have some diarrhea from the Colchicine, but I can live with that.
Wednesday, April 7, 2010
Day 2. I can fix you with vitamins...
Natural medicine is important but B12 and Fish Oil isn't going to heal me this time. If it wasn't for modern medicine I would already be hanging with the Harpist. My bout with Giardia when I was four would have killed me or possibly child birth with my first daughter, Lily.
Who knows? Maybe I should just say "no thank you Mr. Pharmacy Man, I'm going to rely on vitamins."
Friends and family have suggested different things. Taking garlic for extra antibodies (extra antibodies? Isn't that part of the problem?), I should smear vitamin E oil on the open soars in my mouth because it has healing properties (it didn't work) My all time favorite remedy for the bothersome canker soars that invade my mouth...swish with warm salt water (just kill me now!!!), Then there was, 1000mcg's of Vit B12 dissolved under my tongue (it didn't work either and it was weird), I should take Vit C and Zinc to promote a good healthy immune system (except my immune system is already in overdrive). These things didn't work, I tried many different things for many years and slowly my lungs have got worse. Shit, I wasted a bunch of time and ended up going from 100% lung function to 59%, maybe without all the vitamins it would be worse.
Since I'm on immunosuppressants now, I'm more susceptible to getting sick. Does that mean I should take Airborne so I don't get sick? Probably not.
My new vitamin is Imuran. It's a medication given to people who have had an organ transplant so they won't reject the new organ. But in the case of an auto immune disease like my Behcet's it's given to slow the progression of the immune system attacking your bodies own tissue. So are my lungs going to continue to deteriorate but just at a slower rate? I don't want little lungs...I want big and superior lungs.
Who knows? Maybe I should just say "no thank you Mr. Pharmacy Man, I'm going to rely on vitamins."
Friends and family have suggested different things. Taking garlic for extra antibodies (extra antibodies? Isn't that part of the problem?), I should smear vitamin E oil on the open soars in my mouth because it has healing properties (it didn't work) My all time favorite remedy for the bothersome canker soars that invade my mouth...swish with warm salt water (just kill me now!!!), Then there was, 1000mcg's of Vit B12 dissolved under my tongue (it didn't work either and it was weird), I should take Vit C and Zinc to promote a good healthy immune system (except my immune system is already in overdrive). These things didn't work, I tried many different things for many years and slowly my lungs have got worse. Shit, I wasted a bunch of time and ended up going from 100% lung function to 59%, maybe without all the vitamins it would be worse.
Since I'm on immunosuppressants now, I'm more susceptible to getting sick. Does that mean I should take Airborne so I don't get sick? Probably not.
My new vitamin is Imuran. It's a medication given to people who have had an organ transplant so they won't reject the new organ. But in the case of an auto immune disease like my Behcet's it's given to slow the progression of the immune system attacking your bodies own tissue. So are my lungs going to continue to deteriorate but just at a slower rate? I don't want little lungs...I want big and superior lungs.
Tuesday, April 6, 2010
Day 1. Drugs & Boobas
We'll call it "Day 1", although I'm not sure there will be a "Day 2" or "Day 3", not necessarily because I'm going anywhere but the title just seems to suit the post. This is "Day 1" without Booba for Lucy; my 20 month old, who I think was determined to nurse until the very last minute (her second birthday). This was cut short due to my "Day 1" of taking a drug called Imuran. This is one of six prescriptions I am taking now...I went from 0 medications to 6 in 24 hours. I've become absorbed into the world of doctors and their "practicing medicine" shenanigans.
In an effort to relieve stress, which causes nasty symptoms of my potentially fatal disease, I've decided to blog. This wasn't entirely my idea and I like to give credit where it's due...
At my last PFT (Pulmonary Function Test) I exclaimed "FUCK" after seeing that my beautiful, 29 year old shrinking lungs are becoming worse. Mr. Pulmonary Tech Dave told me that "FUCK" wasn't a positive response and that I should start blogging. So here I am.
In an effort to relieve stress, which causes nasty symptoms of my potentially fatal disease, I've decided to blog. This wasn't entirely my idea and I like to give credit where it's due...
At my last PFT (Pulmonary Function Test) I exclaimed "FUCK" after seeing that my beautiful, 29 year old shrinking lungs are becoming worse. Mr. Pulmonary Tech Dave told me that "FUCK" wasn't a positive response and that I should start blogging. So here I am.
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