- I’m doing great on the new medication, Cellcept. No stomach problems. Essentially I am still losing a good amount of protein (6.2 grams a day) but it is much improved from 17.8 grams a day (in January). For a relativity check the amount of protein dumped by a healthy kidney is about .3 grams a day. I’ve still got a ways to go – but a HUGE improvement in just over a month! And my kidney function is maintaining at a great rate. Even my bone marrow is making red blood cells on their own!
- I shaved my head last week. I didn’t watch, thankfully. My friend Stephanie said it was time and held my hand while it was being shaved. I have to say it isn’t my favorite non-hair style, but it sure is nice not to have hair all over the place. My hair is about ½” long and it looks like most of it is growing back – yay! Now I need to get my wig trimmed/styled. In the interim, I’m wearing scarves and hats or going head-naked.
- I’ve appealed the EDD’s decision to deny me disability insurance. I’m not holding my breath on this one. I’m discouraged though, as I’ve been contributing to this fund for over 20 years, and for the first time I need help, and I get denied. Interesting.
- I’m taking low dosages of prednisone for the joint/muscle pain which I’m hoping I can discontinue soon. I’ve been able to reduce my blood pressure medication – and my blood pressure is lower than normal! I’m taking the Cellcept and the only other medication I’m taking is Coumadin to keep my blood thin for the blood clot. We will be doing an ultra sound in June/July to check on the clot again and see if it has dissipated.
- Generally, I’m feeling good and have gained back most of my strength. Now it is time to figure out how to earn some income. If you have any job suggestions/ideas, send them my way. I’m available for part time, short term, and long-term work. Either graphic design, real estate or anything that requires intelligence, organization and a sense of humor. Honestly, I’m really open to most anything. I’m even open to relocating for a long-term job.
Wednesday, March 25, 2009
Just a Health Score
Health Score/March 23, 2009
Saturday, February 7, 2009
Just a Health Score
Health Score/February 6, 2009
- Test Results –My kidney biopsy occurred on Friday, January 30th. I just heard the results from my Doctor. He said I have Class 5 Lupus Nephritis, which has side effects of edema (fluid retention) and protein loss. The really good news is that the biopsy showed that there is little permanent damage at this point. So he believes that with the new medication (Cellcept) most of the damage will be reversed. YAY!!! I start the new medication this weekend, so keep your fingers crossed that my stomach can deal with it.
- BIG NEWS. I heard from my health insurance company this week and they are waiving the pre-existing clause, due to prior coverage and that I did not have a Lupus flair in the last 5 years. YAY/YIPPEE/WOOHOO. To be honest, I can’t believe it. I am a little sad not to do my health insurance blog rant – oh well…at least you guys are spared my profanity.
- Disability is still a problem (EDD). I will continue to fight the good fight – especially since it is about money.
- Cass has confirmed that it is time for a wig. I’ve got a monkey butt on the back of my head – which is not a good look for me. So we are wig shopping this weekend. Sadly, my neck/face is still a bit round from the prednisone – I was trying to wait until my face shape was back to normal before the wig try-ons – but the time has come.
- Generally, I’m feeling pretty good. Some days are better than others. I’ve moved back down to the cottage, (Mom & Dad have their home back) I’m driving and doing my own errands. Most of the time, I feel like myself, still a little weak but I’m getting stronger. My ankles are still a bit swollen, but they are manageable. I can only wear flip flops – thank goodness I have about 20 pairs. Hee hee.
Monday, January 26, 2009
The First Visit
Health Score/January 22, 2009
The First Visit from Lupus occurred in 1983. (Yes, I’m getting old.) I had recently been kicked out of high school, as I had been drinking beer at a friend’s house (and my “Christian” school found out). I luckily had been going to community college between my sophomore and junior years and had enough credits that I only had 2 classes that were mandatory that semester, so I had a lot of spare time.
With my free time, I went on a ski trip with a couple of teachers and friends. While on that trip I wasn’t feeling tip top. I was having a hard time getting out of bed and running out of energy quickly while on the slopes. Once home, I lost my appetite, started having severe joint/muscle pain and was generally exhausted. Over the following 2 months, my health rapidly deteriorated, to the point that I couldn’t roll over in bed. Mom took me to so many doctors we lost count. I do remember her dressing me in this green tracksuit with a white stripe down the side, it was my uniform for months.
Then the holidays arrived, it was Christmas Eve and at that point I was bedridden. Mom was trying to get me to drink some water, but once I swallowed, the water was rejected and would come back up. My Grandma lost it. I heard her voice raised downstairs and telling my parents that I was dying and they needed to take action. I was shocked; I hadn’t considered that I was near death. That was a revelation.
That night my parents took me to the emergency room at Encinitas Scripps Hospital. The ER doctor called in a specialist who wasn’t too thrilled to be called on Christmas Eve. He took one look at the rash that had recently developed across my cheeks/nose (called a butterfly rash) and diagnosed me as having Lupus. Many funny events happened through the course of that night, such as, the ER team forgot me in the restroom (and remember I couldn’t move on my own). I fell asleep against the call button next to the toilet. The ER was very busy that night and ran out of room. At one point, while we were waiting for the specialist, they wheeled me out to the hallway next to someone that had died in the ER that day. That was an interesting conversation.
I was checked into the hospital, my blood was withdrawn, and Lupus was confirmed. They started me on Prednisone and wow; I could walk, talk and eat within hours. And I did all that – it seemed a miracle! Of course, the doctors didn’t tell me about all the side effects of Prednisone – but I’ll chat about that in a later bog. For that moment, it was happy times.
The disease was arrested, but not for long. Over the following three years, I had three flairs and each time was progressively worse. The hospital stays were longer and the kidney involvement more extreme. But, after the third flair, the disease was arrested and I was on lower dosages of all medications.
Around that time, I went on a camping trip to Yosemite with my boyfriend and friends. We planned a 4-day trip, but we were having such a great time, everyone wanted to stay a couple of more days. The decision was mine, as I had not brought enough medication for a longer stay. I decided to take the risk. Honestly, I felt like this was the right thing to do from a spiritual standpoint.
About a month after returning from that trip, I had a doctor’s appointment. I had decided to stay off the meds and see what happened. My doctor was not happy with me, but my test results showed that I was in remission. I was lectured about what a risk I’d taken, but it just felt right.
From that Yosemite trip in 1986 until October 2008, I was in full, non-medication remission. YAY!
Now my goal is Remission2.
- Test Results – My kidney function is normal…yes, normal! My doctor & I are shocked but very happy. BUN = 18 (normal range 8-24). Creatinine is 1.1 (normal range .6-1.3). The reason we are so shocked is that we have delayed me taking in further Immunosuppressant medications, and I’m down to 10 mg of Prednisone per day. The Cytoxan I took was on December 1, 2008, and only lasts about a month – so I’m about 1-month without that type of medication.
- Although, I’m still losing lots of protein and have slightly swollen ankles – so my Doctor is perplexed. My Lupus activity tests are either slightly elevated or normal – which means there is not much Lupus activity. So we are moving ahead with a kidney biopsy ASAP – to try and figure out what the heck is going on. But we think this is all super great news! Personally I’m taking it as a sign of Remission2 – we shall see.
- I had the vena cava filter put into my vein under my left lung and heart last week. Simple procedure. The IV was harder to get done prior to the surgery than the filter being placed. I feel better having that in there to catch any possible “thrown” clots.
- Still haven’t heard from the medical insurance company.
- Still haven’t gotten through to EDD. I think I’m going to have to plan an in-person visit.
The First Visit from Lupus occurred in 1983. (Yes, I’m getting old.) I had recently been kicked out of high school, as I had been drinking beer at a friend’s house (and my “Christian” school found out). I luckily had been going to community college between my sophomore and junior years and had enough credits that I only had 2 classes that were mandatory that semester, so I had a lot of spare time.
With my free time, I went on a ski trip with a couple of teachers and friends. While on that trip I wasn’t feeling tip top. I was having a hard time getting out of bed and running out of energy quickly while on the slopes. Once home, I lost my appetite, started having severe joint/muscle pain and was generally exhausted. Over the following 2 months, my health rapidly deteriorated, to the point that I couldn’t roll over in bed. Mom took me to so many doctors we lost count. I do remember her dressing me in this green tracksuit with a white stripe down the side, it was my uniform for months.
Then the holidays arrived, it was Christmas Eve and at that point I was bedridden. Mom was trying to get me to drink some water, but once I swallowed, the water was rejected and would come back up. My Grandma lost it. I heard her voice raised downstairs and telling my parents that I was dying and they needed to take action. I was shocked; I hadn’t considered that I was near death. That was a revelation.
That night my parents took me to the emergency room at Encinitas Scripps Hospital. The ER doctor called in a specialist who wasn’t too thrilled to be called on Christmas Eve. He took one look at the rash that had recently developed across my cheeks/nose (called a butterfly rash) and diagnosed me as having Lupus. Many funny events happened through the course of that night, such as, the ER team forgot me in the restroom (and remember I couldn’t move on my own). I fell asleep against the call button next to the toilet. The ER was very busy that night and ran out of room. At one point, while we were waiting for the specialist, they wheeled me out to the hallway next to someone that had died in the ER that day. That was an interesting conversation.
I was checked into the hospital, my blood was withdrawn, and Lupus was confirmed. They started me on Prednisone and wow; I could walk, talk and eat within hours. And I did all that – it seemed a miracle! Of course, the doctors didn’t tell me about all the side effects of Prednisone – but I’ll chat about that in a later bog. For that moment, it was happy times.
The disease was arrested, but not for long. Over the following three years, I had three flairs and each time was progressively worse. The hospital stays were longer and the kidney involvement more extreme. But, after the third flair, the disease was arrested and I was on lower dosages of all medications.
Around that time, I went on a camping trip to Yosemite with my boyfriend and friends. We planned a 4-day trip, but we were having such a great time, everyone wanted to stay a couple of more days. The decision was mine, as I had not brought enough medication for a longer stay. I decided to take the risk. Honestly, I felt like this was the right thing to do from a spiritual standpoint.
About a month after returning from that trip, I had a doctor’s appointment. I had decided to stay off the meds and see what happened. My doctor was not happy with me, but my test results showed that I was in remission. I was lectured about what a risk I’d taken, but it just felt right.
From that Yosemite trip in 1986 until October 2008, I was in full, non-medication remission. YAY!
Now my goal is Remission2.
Thursday, January 8, 2009
Just a Health Score
Health Score/January 7, 2009
- Test Results –My BUN (what shape your kidneys are in) dropped another 20 points to 41. (Normal range is 10-25).
- I had five days of spiking fevers. We headed to the ER last Friday and they ran lots of tests. The good news is my heart & lungs are in really good shape (does anyone see the irony there?). They put me on some antibiotics and sent me home. The fevers finally stopped on Tuesday.
- The water retention is much better now that my kidneys are starting to function. I still have cankles, but they are much more manageable.
- The blood clot grew, doesn’t that sounds gross? Anyway, we are going to do an out-patient procedure and install a filter (he described it as a contraption that looks a bit like a fancy drink umbrella – it figures) into a vein below my lungs/heart – to capture any “thrown” clots. That way I don’t suddenly suffer a heart attack or stroke – which I think is a good thing. I was stressing on this one a bit – as is my family.
- Then we are going to do a kidney biopsy. Once they have some tissue they can determine exactly what is going on in there and what medications are best to arrest the disease.
- I’m a bit more optimistic about my medical insurance, as soon as I hear from them, I’m sure my insurance blog will occur.
- I’m having a great time coordinating with the EDD for Disability. I think I’ve been on hold now for a collective time of 3.5 hours and still haven’t gotten through to a live human. Hahaha.
Thursday, January 1, 2009
The Unwelcome Visitor
With the holidays so recently behind us, I have a scenario that may help you relate to how I’m feeling. See if you have ever felt this way.
Rewind back to December 1:
The holidays are fast approaching, you have a relative (lets go with Mother-in-Law) visiting that you aren’t necessarily looking forward to hosting. Firstly, she didn’t ask and just assumed she could stay in your home (versus getting a hotel room). Not to mention, she is staying longer than is acceptable etiquette, she smokes, and incessantly talks about people you’ve never met – but she seems to think you know.
You are bitter and angry. Not to mention the stress of going through your entire home to make it perfect, grocery shopping, cooking and keeping her entertained.
You didn’t finish cleaning the house – but you cleaned the guest room and put clean sheets on the bed, did most of the grocery shopping, and the dinner turned out pretty well (at least everything was warm at the same time). Your Mother-in-Law chatted on about all those people you don’t know – but it made the time pass quickly in the kitchen as you realize she isn’t a bad storyteller. She was even helpful and went to the grocery store a few times to get things you’d forgotten.
As you trundle off to bed, exhausted, you begin dreading the remaining days. What are you going to do with her?
You are standing in front of the coffee pot the next morning, willing for it to brew faster, she comes into the kitchen and asks if you’d like to go shopping and to lunch (her treat). You mumble with a crooked smile, “That would be great.”
Now you are dreading the next 4+ hours, but you put a good face on and off you go. While at lunch, you get to know her better as she relates stories about her life and you share some of yours. You stumble across similarities and find commonalities. When brushing your teeth before bed, you are thinking about the day and what a pleasant time you had.
By the time you hug her and she is driving away you realize you are going to miss her a bit. But you squash that thought, and do the happy dance as you walk to your front door singing, “she is gone, she is gone”!
A week later, one of your New Year’s resolutions is to travel to exotic places every Holiday Season (because travel is on your bucket list, of course). But if you were honest, you’d admit that you’ve hatched up this New Year’s resolution to ensure that your Mother-in-Law could never visit again.
I want to be fair to Lupus. The bad is easy to identify and is hard to deal with at times (don’t get me wrong). But there is a peaceful aspect to this journey; pleasant moments with this unwelcome visitor. You reflect, readjust, and realize life is short. The future opens up to all possibilities because if you can survive this - you can do anything. You make amends with those whom you’ve wronged. Get in touch with those that have drifted away. You let people know you love them. You live in the moment. Life becomes simple, clear and very sweet. It even starts to make sense and you see the connectedness between everything.
I know, strange but true. xoxoxo
Rewind back to December 1:
The holidays are fast approaching, you have a relative (lets go with Mother-in-Law) visiting that you aren’t necessarily looking forward to hosting. Firstly, she didn’t ask and just assumed she could stay in your home (versus getting a hotel room). Not to mention, she is staying longer than is acceptable etiquette, she smokes, and incessantly talks about people you’ve never met – but she seems to think you know.
You are bitter and angry. Not to mention the stress of going through your entire home to make it perfect, grocery shopping, cooking and keeping her entertained.
You didn’t finish cleaning the house – but you cleaned the guest room and put clean sheets on the bed, did most of the grocery shopping, and the dinner turned out pretty well (at least everything was warm at the same time). Your Mother-in-Law chatted on about all those people you don’t know – but it made the time pass quickly in the kitchen as you realize she isn’t a bad storyteller. She was even helpful and went to the grocery store a few times to get things you’d forgotten.
As you trundle off to bed, exhausted, you begin dreading the remaining days. What are you going to do with her?
You are standing in front of the coffee pot the next morning, willing for it to brew faster, she comes into the kitchen and asks if you’d like to go shopping and to lunch (her treat). You mumble with a crooked smile, “That would be great.”
Now you are dreading the next 4+ hours, but you put a good face on and off you go. While at lunch, you get to know her better as she relates stories about her life and you share some of yours. You stumble across similarities and find commonalities. When brushing your teeth before bed, you are thinking about the day and what a pleasant time you had.
By the time you hug her and she is driving away you realize you are going to miss her a bit. But you squash that thought, and do the happy dance as you walk to your front door singing, “she is gone, she is gone”!
A week later, one of your New Year’s resolutions is to travel to exotic places every Holiday Season (because travel is on your bucket list, of course). But if you were honest, you’d admit that you’ve hatched up this New Year’s resolution to ensure that your Mother-in-Law could never visit again.
Lupus is my Mother-in-Law!
I want to be fair to Lupus. The bad is easy to identify and is hard to deal with at times (don’t get me wrong). But there is a peaceful aspect to this journey; pleasant moments with this unwelcome visitor. You reflect, readjust, and realize life is short. The future opens up to all possibilities because if you can survive this - you can do anything. You make amends with those whom you’ve wronged. Get in touch with those that have drifted away. You let people know you love them. You live in the moment. Life becomes simple, clear and very sweet. It even starts to make sense and you see the connectedness between everything.
I know, strange but true. xoxoxo
How I See It
Health Score/December 30, 2008
Spirituality: I was raised in the Christian faith. My Dad is Catholic, my Mom Protestant. I was baptized Lutheran, nearly didn’t graduate from a Southern Baptist High School. I’ve attended numerous “Christian” churches, from Catholic to 4-square. I prefer churches that sing a lot and preach less. My overall philosophy is that we should respect one another’s faith and belief systems.
Love & Relationships: I believe this life is all about relationships, good and bad. I haven’t been very lucky in the romantic category but very blessed with many other types. I considered parenting, as I believe that must be the most amazing, selfless type of love we get to experience on this earth. I’m still hoping for both to come into my life, in some non-traditional way.
Life: The bottom line, we are not in control of much in this life, just our reaction to our lack of control… Ask my Dad to tell you the “could be good or could be bad” story when you see him. I think it relates a healthy way to deal with life and stress.
Politics: I was raised Republican. I moved to San Francisco for 11 years and tried to convert to being a Democrat. Neither fit. I believe in stronger local government vs. federal to meet the needs of the “local” people. I would like lower taxes but am too realistic (some say pessimistic) to think that is going to happen any time soon (if ever). I don’t appreciate any politician promising things they “know” they can’t deliver. I see red (literally) when people discriminate and define it as other than discrimination. I don’t enjoy political debate, as I never feel like I have all the facts to make an informed decision…and I’m all about being informed :-) And we won’t talk about our Health Care System here…that deserves it’s own future blog.
Hopefully something above made you smile and/or laugh for the New Years? Cheers to you all! Drink champagne for me – I command you all!!!
- Test Results – very good today – the biggest improvement thus far. My BUN (what shape your kidneys are in) was running between 95-120 and as of today is down to 61. The normal range is 10-25 just to give you some relativity. HAPPY NEWS for the HAPPY NEW YEAR!
- AND my new doctor halved my prednisone (steroid) dosage on 12/23. So now I’m only half as crazy! I’m not “constantly” chatting and almost getting a full nights rest. I can taste food again – just in time for Christmas – yay!
- I’ve got a bad acid stomach from all the meds – I have never had that or heartburn before – OUCH!
- The hair – well, because the meds are really working, it is really falling out fast now. Oh well, next shopping excursion the wig store. I am just hoping that we keep reducing the steroids so I don’t have to try on wigs with a moon face…keep your fingers crossed for me.
Spirituality: I was raised in the Christian faith. My Dad is Catholic, my Mom Protestant. I was baptized Lutheran, nearly didn’t graduate from a Southern Baptist High School. I’ve attended numerous “Christian” churches, from Catholic to 4-square. I prefer churches that sing a lot and preach less. My overall philosophy is that we should respect one another’s faith and belief systems.
Life: The bottom line, we are not in control of much in this life, just our reaction to our lack of control… Ask my Dad to tell you the “could be good or could be bad” story when you see him. I think it relates a healthy way to deal with life and stress.
Politics: I was raised Republican. I moved to San Francisco for 11 years and tried to convert to being a Democrat. Neither fit. I believe in stronger local government vs. federal to meet the needs of the “local” people. I would like lower taxes but am too realistic (some say pessimistic) to think that is going to happen any time soon (if ever). I don’t appreciate any politician promising things they “know” they can’t deliver. I see red (literally) when people discriminate and define it as other than discrimination. I don’t enjoy political debate, as I never feel like I have all the facts to make an informed decision…and I’m all about being informed :-) And we won’t talk about our Health Care System here…that deserves it’s own future blog.
Hopefully something above made you smile and/or laugh for the New Years? Cheers to you all! Drink champagne for me – I command you all!!!
Tuesday, December 23, 2008
What the Heck is Lupus?
MERRY CHRISTMAS EVERYONE!!!
Health Score/December 23, 2008
To give you a very simplistic picture…our immune systems (white blood cells) save us from infections, bacteria, viruses, etc. They are the good guys! For some reason (and they don’t know why – but have some theories) some of my white blood cells decide to form a large army and attack my own body…in my case my kidneys. They are AWOL, essentially.
What is the prognosis? Depends on organ involvement. But odds are generally really good. Lupus is classified as a chronic (never going-away) disease. But as most of you know, I had 22 years flair free – so that is my goal – “remission2.”
Most scientists agree that people that contract Lupus have a genetic predisposition due to Chromosome 1. But they believe environmental factors trigger the disease. There is no conclusive evidence at this point. They’ve been studying hormones, pesticides, stress, sun/vitamin D, etc. Bottom line, they really don’t know and even think that for each person it could be a different trigger-mix.
Side Note: An interesting new product on the market… Check it out – saw it on Oprah. www.23andme.com
So for those of you that want just a bit more information about Lupus, this section of the Lupus Foundation’s website gives you the highlights:
www.lupus.org
Go to the top left navigation bar (orange) “About Lupus”
Scroll to “Introduction to Lupus”
Scroll to “New to Lupus – Start Here”
Click on the information links
And for the research nerds like me, click away to your hearts content. There are many sites and lots of information about the entire 40+ families of autoimmune diseases…but honestly, unless you love that kind of stuff – skip it and instead eat lots of good food, have a nice glass of wine and/or champagne and enjoy the Season with your family & friends.
Peace & Love
xo
Health Score/December 23, 2008
- My blood results from yesterday? An improvement – the drugs are finally kicking in the body not just my brain. YAY!
- I switched kidney doctors yesterday. I feel much better. I found a doctor more cutting-edge and optimistic. Your relationship with your doctor is so important. He is itching to do a kidney biopsy – but we’ve got to make sure the blood clot in my left knee is dissolved before proceeding. Yippy.
- We are hoping that some new medications for lupus might be appropriate – less side effects. I would also be weaned off the steroids – which would be spectacular…they really are vile. So off to the pharmacy I go…hopefully insurance will deal with it or there will be lots of profanity.
- Generally, I’m feeling better, moving around in 2-hour increments, then back with my feet up. I’m getting bored, I think that is a good sign. I’ve been baking some Christmas cookies and trying to cook some dinners for the family. Feels good to move around!
To give you a very simplistic picture…our immune systems (white blood cells) save us from infections, bacteria, viruses, etc. They are the good guys! For some reason (and they don’t know why – but have some theories) some of my white blood cells decide to form a large army and attack my own body…in my case my kidneys. They are AWOL, essentially.
What is the prognosis? Depends on organ involvement. But odds are generally really good. Lupus is classified as a chronic (never going-away) disease. But as most of you know, I had 22 years flair free – so that is my goal – “remission2.”
Most scientists agree that people that contract Lupus have a genetic predisposition due to Chromosome 1. But they believe environmental factors trigger the disease. There is no conclusive evidence at this point. They’ve been studying hormones, pesticides, stress, sun/vitamin D, etc. Bottom line, they really don’t know and even think that for each person it could be a different trigger-mix.
Side Note: An interesting new product on the market… Check it out – saw it on Oprah. www.23andme.com
So for those of you that want just a bit more information about Lupus, this section of the Lupus Foundation’s website gives you the highlights:
www.lupus.org
Go to the top left navigation bar (orange) “About Lupus”
Scroll to “Introduction to Lupus”
Scroll to “New to Lupus – Start Here”
Click on the information links
And for the research nerds like me, click away to your hearts content. There are many sites and lots of information about the entire 40+ families of autoimmune diseases…but honestly, unless you love that kind of stuff – skip it and instead eat lots of good food, have a nice glass of wine and/or champagne and enjoy the Season with your family & friends.
Peace & Love
xo
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