Well I spent 4-hours in the ER and didn't get the treatment I needed. I've lost 10lbs in 9 days due to some serious stress during the last week and a half. I've had gastro problems constantly for about 18-months, but the last couple days has been to the extreme. I got a referral to a specialist and when I called to schedule an appointment she was maxed out on patients my type of insurance, but I was told if I went to the ER where the doctor is on-call then there would be an exception to the policy. Besides the gastro problems I was seriously flaring due to undo stress.
After a long day at work I packed my bag, grabbed my school books and some snacks and I was ready to settle in for the night. The ER doc listened, but he didn't "listen". I've had 4 colonoscopies in the last 5-years, with two having pre-cancerous polyps. My dad's side of the family have mostly died due to colon cancer. After 4-hours he told me that I "probably" had a stomach virus......go figure.
I had a photo shoot at work this morning and I used the afternoon getting a new gastro referral. I'll be since on Tuesday, thank GOD! I have 14 speciality doctors and this is the first time I've had a problem like this, but you have to live and learn and not let it get to you.......
Down2earthlupie
Friday, June 26, 2009
Wednesday, June 24, 2009
Chemo Treatment Here I come!
Well I saw my nephrologist (kidney doctor) and I will have a kidney biospy after I go to ND and Vegas and then I will start chemo after I return from Germany and Prague. Over the next few months I will have to take chemo once a month for 8-10 hours for 6-months. Then the first time I must take a week off since my immune system will be shot and I can't be around people. So I will telecommute. I will be out on average 3-5 days after treatment and I will do my treatment after my overseas trips.
People take chemo for many reasons. In my case I have kidney involvement and I am the max dose of Cellcept, it's a medicine that heart, lung, and kidney transplant patients take. It has some mad side effects, I started losing my hair, weight and I'm going to the ER tomorrow night because I can't get in to a gastroenterologist and I've been having some serious bowel problems and I've had pre-cancerous polyps removed not once but twice.
Chemo treatment is extermely effective, but I will now have a higher risk for all types of cancer, I can't have children and I will have to take meds to counteract the Cellcept and chemo. http://www.arthritis-treatment-and-relief.com/cellcept-and-lupus-nephritis.html during chemo I will only have to take the chemo and no other meds. I'm on 14 at the present time. Thank God.
This disease has put a serious strain on my marriage. My husband and I been married for 13-years and been separated for 6 of those years. I honestly don't how much we can take, there has been a lot of ups and downs all based off my illness and deployments. We'll see......
Time for pain meds. Oh I had my first aqua therapy appointment today and she truly smoked me, but it's great for your joints. Good night........
People take chemo for many reasons. In my case I have kidney involvement and I am the max dose of Cellcept, it's a medicine that heart, lung, and kidney transplant patients take. It has some mad side effects, I started losing my hair, weight and I'm going to the ER tomorrow night because I can't get in to a gastroenterologist and I've been having some serious bowel problems and I've had pre-cancerous polyps removed not once but twice.
Chemo treatment is extermely effective, but I will now have a higher risk for all types of cancer, I can't have children and I will have to take meds to counteract the Cellcept and chemo. http://www.arthritis-treatment-and-relief.com/cellcept-and-lupus-nephritis.html during chemo I will only have to take the chemo and no other meds. I'm on 14 at the present time. Thank God.
This disease has put a serious strain on my marriage. My husband and I been married for 13-years and been separated for 6 of those years. I honestly don't how much we can take, there has been a lot of ups and downs all based off my illness and deployments. We'll see......
Time for pain meds. Oh I had my first aqua therapy appointment today and she truly smoked me, but it's great for your joints. Good night........
Tuesday, June 23, 2009
Toni's day with Al B. Sure!!!!!!!!!!!!!!!!!!!
Hello All,
The last few days have been busy, but fun! At my job we do a lot of voice overs and interviews with artist and actors when they drop a new album or release a new movie.
Does anybody remember Al B. Sure? He dropped "Killing me Softly" back in the late 80's. He's been producing for the last 23-years. Well his sister is in Afghanistan and he wants to support the troops. Being who I am I told him I could coordinate a trip to Iraq, Afghanistan and Kuwait. He wants me to go with him. I told him I would love to, but I don't have the money in the Army, go figure. He said he would pay for my trip. Hey mom I'm going overseas.
I'll post pictures later this week.....time for pain meds. I feel like that Dunkin Donuts guy, "I got to make the donuts". Good night.
Down2earthlupie
The last few days have been busy, but fun! At my job we do a lot of voice overs and interviews with artist and actors when they drop a new album or release a new movie.
Does anybody remember Al B. Sure? He dropped "Killing me Softly" back in the late 80's. He's been producing for the last 23-years. Well his sister is in Afghanistan and he wants to support the troops. Being who I am I told him I could coordinate a trip to Iraq, Afghanistan and Kuwait. He wants me to go with him. I told him I would love to, but I don't have the money in the Army, go figure. He said he would pay for my trip. Hey mom I'm going overseas.
I'll post pictures later this week.....time for pain meds. I feel like that Dunkin Donuts guy, "I got to make the donuts". Good night.
Down2earthlupie
Saturday, June 20, 2009
Lupus 101 - How Toni got diagnosed
Lupus 101 - There are four types of lupus, Systemic Lupus Erythematosus (SLE), Cutaneous or Discoid Lupus Erythematosus, Drug-induced Lupus Erythematosus and Neonatal Lupus. More than 1.5 million Americans have some form of lupus. I have SLE and a mild case of Cutaneous Lupus Erthematosus.
Systemic lupus is the most common form of lupus, and is what most people mean when they refer to "lupus." Systemic lupus can be mild or severe. Some of the more serious complications involving major organ systems are: Inflammation of the kidneys (lupus nephritis), an increase in blood pressure in the lungs (pulmonary hypertension), inflammation of the nervous system and brain, inflammation in the brain’s blood vessels, which can cause high fevers, seizures, behavioral changes, and hardening of the arteries (coronary artery disease).
The symptoms for lupus are the same for females and males and numerous. In fact, lupus is sometimes called "the great imitator" because its symptoms are often like the symptoms of rheumatoid arthritis, blood disorders, Fibromyalgia, diabetes, thyroid problems, Lyme disease, and a number of heart, lung, muscle, and bone diseases.
Bottom line I'm a walking time bomb. My disease started off with my hands and arms swelling, and then I got angioedma, swelling of the lips, eye sockets and the whites of my eyes. Then I walked around with 2/3 of my lung collapsed for 10 months until I had surgery. I still have a partially collapsed lung....go figure. Then my kidney went to hell and a hand basket. Now I'm on a medicine that cost $2,500 a month...thank God for Tricare insurance.
I have over 10 aliments, 14 surgeries since 1998 till now, 13 medications I take daily and 14 specialty doctors. Scheduling is hell for me when a last minute meeting gets thrown on my plate.Be happy to go to the dentist twice a year and seeing your PCM only when you need them. Many of us Lupies (what lupus patients call ourselves) see twice as many physician than I see, they are or have lost their hair (me too), are on chemo treatment and in a wheelchair.I just found out that I will go through another kidney biopsy which will result in a 6-month trial of chemo. I won't have to take any other lupus meds and I can get a guaranteed 7-8 hours of study time :) you got the look at the bright side.
Time for pain killers.......
Down2earthlupie
Systemic lupus is the most common form of lupus, and is what most people mean when they refer to "lupus." Systemic lupus can be mild or severe. Some of the more serious complications involving major organ systems are: Inflammation of the kidneys (lupus nephritis), an increase in blood pressure in the lungs (pulmonary hypertension), inflammation of the nervous system and brain, inflammation in the brain’s blood vessels, which can cause high fevers, seizures, behavioral changes, and hardening of the arteries (coronary artery disease).
The symptoms for lupus are the same for females and males and numerous. In fact, lupus is sometimes called "the great imitator" because its symptoms are often like the symptoms of rheumatoid arthritis, blood disorders, Fibromyalgia, diabetes, thyroid problems, Lyme disease, and a number of heart, lung, muscle, and bone diseases.
Bottom line I'm a walking time bomb. My disease started off with my hands and arms swelling, and then I got angioedma, swelling of the lips, eye sockets and the whites of my eyes. Then I walked around with 2/3 of my lung collapsed for 10 months until I had surgery. I still have a partially collapsed lung....go figure. Then my kidney went to hell and a hand basket. Now I'm on a medicine that cost $2,500 a month...thank God for Tricare insurance.
I have over 10 aliments, 14 surgeries since 1998 till now, 13 medications I take daily and 14 specialty doctors. Scheduling is hell for me when a last minute meeting gets thrown on my plate.Be happy to go to the dentist twice a year and seeing your PCM only when you need them. Many of us Lupies (what lupus patients call ourselves) see twice as many physician than I see, they are or have lost their hair (me too), are on chemo treatment and in a wheelchair.I just found out that I will go through another kidney biopsy which will result in a 6-month trial of chemo. I won't have to take any other lupus meds and I can get a guaranteed 7-8 hours of study time :) you got the look at the bright side.
Time for pain killers.......
Down2earthlupie
Tuesday, June 16, 2009
OMG! Don't judge a book by it's cover
I was feeling like crap last night....I had to take Demerol....thank God. I woke up feeling like a 85-year old grandma all bent over, every step hurt. Oh did I mention that I threw up 4 times yesterday, once on the way to work (I couldn't even get 2 miles from the house) twice at work and one more to top off my might. Got to love chemo drugs! At least my kidneys are functioning and I'm not on dialysis.
Today I feeling okay and so I wet to my first aqua aerobic class. My physical therapist recommended it. I thought I use to bodybuilding and run my own personal training business with my husband; it will be a bunch of overweight aging women. Boy oh boy was I wrong. I'm sitting on my coach and I can barely get up to go to the bathroom. I stopped 10-minutes before the end of class.
Food for thought don't judge a book by it's cover. I need more drugs......good night.
Down2earthlupie
Today I feeling okay and so I wet to my first aqua aerobic class. My physical therapist recommended it. I thought I use to bodybuilding and run my own personal training business with my husband; it will be a bunch of overweight aging women. Boy oh boy was I wrong. I'm sitting on my coach and I can barely get up to go to the bathroom. I stopped 10-minutes before the end of class.
Food for thought don't judge a book by it's cover. I need more drugs......good night.
Down2earthlupie
Monday, June 15, 2009
The day in a life
Hello all - I am sooooo passionate about two things in particular....lupus and fibromyaglia. I have both and I'm currently servicing my country for 17-years now as an active duty Army officer. I am becoming a true advocate as I learn more about my diseases.
I always get the question "how are you doing?" from friends, family and doctors. I always give that cocked-eye look and question them, what this morning, this after or right now. The one thing that they don't understand is that my diseases wax and whines basis on the time of day and the wind.
By blogging about my life I hope it will help others understand mine. This can give someone a feeling of what it's like to walk in my shoes.
Happy Blogging!
Down2earthlupie
I always get the question "how are you doing?" from friends, family and doctors. I always give that cocked-eye look and question them, what this morning, this after or right now. The one thing that they don't understand is that my diseases wax and whines basis on the time of day and the wind.
By blogging about my life I hope it will help others understand mine. This can give someone a feeling of what it's like to walk in my shoes.
Happy Blogging!
Down2earthlupie
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