Lupus patient, Kathy, provides an online support network for people diagnosed with Mixed Connective Tissue Disease (MCTD) and Lupus.
Visit her site to get more details here:
MCTD & Lupus Links
And here is Kathy's story:
PROFILES IN LUPUS: Kathy Walters Pays It Forward
In the October of 2002, at the age of 44, Kathy Walters received a wake up call that would set her on an unexpected journey.She was diagnosed with systemic lupus.Kathy describes herself now as a homemaker, wife, mom, and grandmother. Before her health decline, Kathy was a small business owner in Modesto, California.
Full of energy and talent, Kathy has that enviable talent of being able to create without use of pattern. Confidence, and the vision to see what is not there now serves her well as she has been making a new life that can work around the lupus.
Before the lupus took center stage in Kathy's life, she had found a way to make her passion for creating beautiful things into a livelihood. In the 1980's, Kathy was the owner of The Country Peddlers Gift Shoppe.
Her online business, Mother Earth Gifts, was formed in 1999 as the fatigue from the as yet undiagnosed lupus took its toll on Kathy's ability to continue working with the machinery used for her wood crafts.And the lupus has robbed Kathy even of this online business.
Her world has been tipped askew.
Lupus has made Kathy adapt in ways she had never planned.
In the process of letting go, Kathy has created a safe harbor for those with lupus by creating the online community:
www.LupusMCTD.com
She calls her efforts "Paying it forward… giving back to lupus patients and their families."
This is her story
The first suspicions that something was seriously wrong with Kathy's health occurred in April of 1975. Kathy was only 16 years old.She had convulsions which were described as having "unknown origins". Kathy was started on anti-seizure medications, Dilantin and Phenobarbital.
During this disease onset, Kathy also suffered with high fevers and frequent bouts of pneumonia. She missed so much school that she did not graduate.
Kathy felt "ashamed and embarrassed" about this health problem. So when she met her future husband, Dave, she did not initially share with him her private struggles.
Dave soon learned quickly about Kathy's health problems when Kathy had a grand mal seizure a month after they were married. As usual with seizures, Kathy was "out of it" for the next four hours. When she came around, Dave was there. Kathy told him about the seizures and states:
"…he had tears in his eyes and said, 'It was OK to tell me you had them [the seizures]. I love you for you and if that means I'd have to love your seizures, then I love them because it's a part of you."
Kathy and Dave have been married now for 30 years. And they became parents to a son and daughter.
Dave was very supportive of Kathy as her health gradually declined. She began suffering with the migraines and irritable bowel syndrome (IBS).
I had asked Kathy to talk about what it was like coping with IBS. This is a challenge for a number of us with lupus, but a condition that we so rarely discuss.
Kathy shared that her condition was so bad that she would need to pull over to the side of the road when traveling. Dave was sensitive and protective of Kathy. He would shield her so she would have privacy, provide tissues, and make sure she was okay. Dave was able to understand how embarrassing this was for Kathy. They learned to plan trips closer to home and to map out longer trips to make sure they could locate restrooms along the way.
The well known lupus fatigue hit Kathy when her children entered their middle school years. Dave became Kathy's "voice" in advocating for her with doctors. Dave also helped Kathy by teaching the children to help out around the home, keep things quiet when she was seriously ill, and to protect their mother from stress that exacerbates lupus symptoms.
Kathy shared that her children quickly learned to adapt to Kathy's worsening condition.
By Junior High, her children were able to recognize when Kathy was having a bad day and to adjust their after school plans accordingly. Her daughter would tell her friends "I'll talk to you later." Then both children would help by bringing Kathy 7UP, crackers, medication and a wet washcloth for herface. Kathy's daughter volunteered to hold Kathy's hair when the pain caused Kathy to vomit. Her son would close the curtains to the windows to keep the rooms comfortably dark.
(People with severe migraines suffer intense pain from loud noise and light.)
Kathy reports that :If I am sick, they [family] respond and do everything they can to help me to this day. But if I 'look and act normal' then we all live a normal live day at home."
On the Path to a Lupus Diagnosis:
Kathy first realized that her health problems were serious in 1985.Kathy's beloved sister, Sheryl, died of Polymyositis. This is a condition frequently associated with Mixed Connective Tissue Disorder.Polymyositis often overlaps autoimmune conditions such as lupus.
In her grief, Kathy turned to medical books to try to understand what had happened to her sister. Kathy's fatigue increased significantly during this time.Kathy's migraines became unbearable and she had to make frequent trips to the Emergency Room. Her health problems were considered to be the result of "stress" or "hormone related".
Kathy kept hearing the word "lupus" pop up.
Lab results showed nothing significant until 2002.
Kathy received a confirmed lupus diagnosis in October of that year due to her ANA lab results taken in conjunction with the other symptoms she had presented with over the years. Her neurologist and Primary Care Physician (PCP) finally agreed that she had been right all along.And that is a long time to suffer through the humiliation of not being taken seriously by medical professionals.
So upon receiving the confirmed diagnosis, Kathy states:
"I was happy. I know this must sound strange to some, but I was so happy I called everyone. I was tired of trying to show and prove to Doctors what I had been living like; I just needed proof to them so I could get treatment to feel better."
And thus explains Kathy's deep empathy for those waiting for a confirmed diagnosis, and those with Mixed Connective Tissue Disease who may never receive a confirmed diagnosis.
But, having lupus is not easy.And Kathy has shared that she misses the energetic woman she used to be. Kathy misses the ability to be able to help others by being physically present. Her illness has left her barely able to tend to her own household.
Kathy also misses the social contact of running her own business.
The computer has been Kathy's life preserver as she has made her way in learning to cope with lupus.Kathy has started creating her original designs on the computer. She has taken the patterns that she loved so much and is putting them together into a CD to share with others. She also has been making "Do It Yourself" sewing packets that come complete with the pattern and all the materials needed to make Kathy's favorite Raggedy Ann dolls.
More importantly, Kathy discovered that the computer is a lifeline for the chronically ill.Kathy describes her transition into using the computer as:
" Letting go, I learned to use the computer to create a new way of still using my talents and be able to continue making money at what I love to do. It's not the finished product, but I create from start to finish patterns, photographs for a CD with instructions for others to be able to create dolls. Letting go has just allowed me to expand my talents in other areas... the computer."
And Kathy found a lupus support network online.
Kathy had been participating on AOL's Lupus Message Board. Kathy saw some needs that were not being met, though, and eventually came up with a better design that would meet the needs of others like herself.
Kathy's website features an information library that is easy to access. She also has a design that allows readers to change fonts and size for easier reading. Kathy has access to a wealth of information that is easily available to participants on her website.
Her goal is to get that information out there to the public.
A typical day for Kathy starts with checking online to respond to e-mails and questions. She makes it her number one priority to try to respond to everyone before the end of the day by checking online again at night before she turns off her computer.
During the day, Kathy likes to get creative with the website. Recently she has added live chats, and a filmloop that shows photos of actual symptom manifestations.
I asked Kathy if there is anything she would like to add to the website…
what is the next step.
She jokingly responded live video chat. She has been tinkering with the idea though…
and if it is possible, Kathy is certainly up to the task.
Kathy's hope for LupusMCTD.com is:
"I would LOVE to be able to get each visitor to either make a post, if not, at least sign the guestbook, so we have a general geographical idea where they are from. I created maps to track visitor & member's IP Addresses on a map powered by Google. With that and our Face of Lupus Film Loops, we become more than a screen name, we are human and we are real. "
I asked Kathy has she ever had the "WHY ME?" question that so many of us face in time of crisis. Here is Kathy's response:
"I have thought of this one many times when I think, 'Why me?'Then I think, 'Why not me?'
If it were not for this all happening, I wouldn't of met the wonderful people I have met via Internet, I wouldn't of created the website to be able to help others.I lost 2 of my sisters and without them and now my parents are gone, I have Dave and the kids in my life.
That's it.
But I can say it with tears in my eyes and a happy heart,I have true caring friends who understand what my physical health problems were, still are, and will continue to be.
That is why I think I have it for.
Otherwise, I honestly don't know where I'd be during the day.
I try to think about it, I no longer physically have my family members here, I always used to spend time at my parents and at my sisters doing for them. (decorating, baking, things family members do).
And now with the invention of computer technology, I can be a help and friend to others like a family, as we all share one thing in common. Something not even some family members understand what you are going through. "
And so Kathy "Pays it forward".
Through years of challenges and loss (most recently her sister in June 2005), Kathy continues to be who Kathy always has been…
an innovative, caring, woman with a "can do" spirit that resists the bonds of lupus.
Kathy TodayVISIT KATHY'S WEBSITE (don't forget to sign the guestbook!)
at:
www.LupusMCTD.com
by: Loretta Kelly, B.S.Ed., M.S.W.
2006, please do not copy
Wednesday, January 31, 2007
Monday, January 29, 2007
#114- IN THE NEWS: Research Updates
BBC reports that researchers have found a protein made by white blood cells that can slow down the immune response:
BBC NEWS Health Immune system 'brakes' found
The protein is called carabin.
Here is an easy to read article about how carabin works when battling a cold:
LiveScience.com - Cold Case: How Sniffles are Stifled
Reports are saying that carabin works like immune suppressing medications such as cyclosporin.
Currently this research is focused on helping organ transplant recipients.
But, there may be potential benefits for people with autoimmune disease.
********************************************************************
Intravenous Immune Globulin (IVIG) treatment may see some advances due to recent research reported in Science Daily:
ScienceDaily: Discovery May Lead To Novel Treatments For Autoimmune And Chronic Inflammatory Diseases
IVIG is given to patients as an infusion. Currently, patients must spend three to four hours with the IV for three days in a row. Patients usually must go to a hospital setting for this treatment.
Researchers are looking into making this treatment available via an injection done at the doctor's office.
Intravenous Immune Globulin treatment is not widely used at this time in lupus treatment. It is very expensive. IVIG is a plasma (blood) product that is made by paid donations from about 20,000 donors. The antibodies from each donor are taken out and mixed together.
That adds up to about $3,000 per infusion.
Ideally, researchers need to find a method to create this treatment synthetically so that more people may benefit.
In the meantime, there is anecdotal (case by case reports) of using this treatment for severe cases of systemic lupus.
Loretta Kelly, B.S.Ed., M.S.W.
2007, Please do not copy without author's permission
NOTE: Please review the comments section. Gail reports that you can have an in home nurse (recommended via your physician) in order to receive IVIG treatment at home.
RESOURCES
Systemic Lupus Erythematosus - New Treatments, January 2, 2007
IVIg Benifits
THANK YOU:
Karyl
Karyl's Glimpses of Eternity-- Lupus and Life
Gail
Gail's MySpace Blog
BBC NEWS Health Immune system 'brakes' found
The protein is called carabin.
Here is an easy to read article about how carabin works when battling a cold:
LiveScience.com - Cold Case: How Sniffles are Stifled
Reports are saying that carabin works like immune suppressing medications such as cyclosporin.
Currently this research is focused on helping organ transplant recipients.
But, there may be potential benefits for people with autoimmune disease.
********************************************************************
Intravenous Immune Globulin (IVIG) treatment may see some advances due to recent research reported in Science Daily:
ScienceDaily: Discovery May Lead To Novel Treatments For Autoimmune And Chronic Inflammatory Diseases
IVIG is given to patients as an infusion. Currently, patients must spend three to four hours with the IV for three days in a row. Patients usually must go to a hospital setting for this treatment.
Researchers are looking into making this treatment available via an injection done at the doctor's office.
Intravenous Immune Globulin treatment is not widely used at this time in lupus treatment. It is very expensive. IVIG is a plasma (blood) product that is made by paid donations from about 20,000 donors. The antibodies from each donor are taken out and mixed together.
That adds up to about $3,000 per infusion.
Ideally, researchers need to find a method to create this treatment synthetically so that more people may benefit.
In the meantime, there is anecdotal (case by case reports) of using this treatment for severe cases of systemic lupus.
Loretta Kelly, B.S.Ed., M.S.W.
2007, Please do not copy without author's permission
NOTE: Please review the comments section. Gail reports that you can have an in home nurse (recommended via your physician) in order to receive IVIG treatment at home.
RESOURCES
Systemic Lupus Erythematosus - New Treatments, January 2, 2007
IVIg Benifits
THANK YOU:
Karyl
Karyl's Glimpses of Eternity-- Lupus and Life
Gail
Gail's MySpace Blog
Tuesday, January 23, 2007
#113 - Brother Can You Spare a Spoon? (link)
I got a nice little surprise today.
Found out that one of my first blogging pals, P. Little, wrote an article about looking at lupus from a healthy person's perspective:
BROTHER CAN YOU SPARE A SPOON?
Enjoy!
Loretta Kelly, B.S.Ed., M.S.W.
2007, Please do not copy without author's permission
:) Thanks!
Found out that one of my first blogging pals, P. Little, wrote an article about looking at lupus from a healthy person's perspective:
BROTHER CAN YOU SPARE A SPOON?
Enjoy!
Loretta Kelly, B.S.Ed., M.S.W.
2007, Please do not copy without author's permission
:) Thanks!
Monday, January 22, 2007
#112 - WALK WITH US: Update
I received this e-mail update from:
Lupus Research.org
With full information about 2007 Lupus Walks.
You can read the full text at my other sites:
Life Beyond Lupus (AOL)
blog.myspace.com/lifebeyondlupus (MySpace)
Lupus Research.org
With full information about 2007 Lupus Walks.
You can read the full text at my other sites:
Life Beyond Lupus (AOL)
blog.myspace.com/lifebeyondlupus (MySpace)
Sunday, January 21, 2007
#111 - Lupus and Anxiety
Having Lupus often means you are not able to predict from day to day...
let alone hour to hour what is in store for you.
The uncertainty of living with any chronic health condition and the numerous experiences of unpleasant medical procedures and even more unpleasant interactions with some people in the medical community can add up to one big case of anxiety.
Here is an OUTSTANDING blog entry from ANXIETY/PANIC ATTACKS about taking the first steps in controlling anxiety:
DO YOU KNOW WHO YOU REALLY ARE?
Please feel free to offer your tips on coping with anxiety...
and don't forget to ask me questions via comment or messaging.
POSTSCRIPT ADDED:
I just heard from reader, Tina, that you must be on this blog owner's friends list to read the material.
I have sent the blogger a request to open this entry up so folks can benefit.
Hopefully, we'll get this cleared up.
In the meantime, here is link to their anxiety treatment center:
Anxiety Centre
let alone hour to hour what is in store for you.
The uncertainty of living with any chronic health condition and the numerous experiences of unpleasant medical procedures and even more unpleasant interactions with some people in the medical community can add up to one big case of anxiety.
Here is an OUTSTANDING blog entry from ANXIETY/PANIC ATTACKS about taking the first steps in controlling anxiety:
DO YOU KNOW WHO YOU REALLY ARE?
Please feel free to offer your tips on coping with anxiety...
and don't forget to ask me questions via comment or messaging.
POSTSCRIPT ADDED:
I just heard from reader, Tina, that you must be on this blog owner's friends list to read the material.
I have sent the blogger a request to open this entry up so folks can benefit.
Hopefully, we'll get this cleared up.
In the meantime, here is link to their anxiety treatment center:
Anxiety Centre
Thursday, January 18, 2007
#110 - Lupus Chat Information from Michele
Before MySpace, I spent (and continue to spend) time on AOL interacting with others with lupus.
I just wanted to introduce my new lupus friends to some great resources for socializing online with other people who know just what you are going through.
All of this delightful entry is totally creditted to Michele who volunteers her time and talent .
Thank you, Michele, for helping all of us with lupus to find a safe place to visit and care for each other!
Michele places all kinds of fun graphics and fonts in her newsletter, unfortunately, they don't show up here. You can contact Michele to sign up for her newsletters.
******************************************
Hello, buenos dias, kia ora, bonjour, salaam, konnichi wa, havari, guten tag, osiyo, tervist! I guess you can see that I have been to my first English as a Second Language Teacher's Course. That may be as far as I get considering the huge amount of work it seems to involve. How do you even begin to teach someone this language of ours? I will talk more about this later but right now I have to tell you about this week's game before I lose the folks that only read the first paragraph.
You know all those silly sayings that your mother and grandmother always recited to make a point when you did something wrong and you thought they sounded so lame? How about when your grandpa would come up with a real dilly? Well, you should have listened because now they are coming back to haunt you. We will be giving you a common "old saying" and you will have to fill in the blank. For example.
Why buy the cow when you can get the milk for ___________.
OK , I won't even tell you the answer for that one because it was such an easy one. You get the idea, right? I WILL tell you though that I just picked that one out randomly from the paper, it was NOT one that I heard from my mother, lol. It is time for a good laugh and I can assure you that laughter is not only common it is a given in these chats.
I DO hope that we will see you in the Lupus Chat room on Thursday night at 7 pm EST.
Yes, that is tomorrow for those of you that lose the day of the week like I do, see you there!
Now that I have business taken care of I can talk a little more about this language of ours. After 16 years of school I have but a tiny grasp of the English language but still don't understand those little pronunciation questions that we all ponder from day to day.
This handout that we got only makes it that much more confusing.......
SOME REASONS TO BE GRATEFUL IF YOU GREW UP SPEAKING ENGLISH
1) The bandage was wound around the wound.
2) The farm was used to produce produce.
3) The dump was so full that it had to refuse more refuse.
4) We must polish the Polish furniture.
5) He could lead if he would get the lead out.
6) The soldier decided to desert his dessert in the desert.
7) Since there is no time like the present, he thought it was time to present the present.
At the Army base, a bass was painted on the head of a bass drum.
9) When shot at, the dove dove into the bushes.
10) I did not object to the object.
11) The insurance was invalid for the invalid.
12) There was a row among the oarsmen about how to row.
13) They were too close to the door to close it.
14) The buck does funny things when the does are present. 15) A seamstress and a sewer fell down into a sewer line.
16) To help with planting, the farmer taught his sow to sow.
17) The wind was too strong to wind the sail.
18) After a number of Novocain injections, my jaw got number.
19) Upon seeing the tear in the painting I shed a tear.
20) I had to subject the subject to a series of tests.
21) How can I intimate this to my most intimate friend?
22) I spent last evening evening out a pile of dirt.
Screwy pronunciations can mess up your mind!
For example, if you have a rough cough, climbing can be tough when going through the bough on a tree!
There is neither egg in eggplant, nor ham in hamburger; neither apple nor pine in pineapple. English muffins weren't invented in England.
WE TAKE ENGLISH FOR GRANTED.
But if we explore its paradoxes, we find that quicksand can work slowly, boxing rings are square and a guinea pig is neither from Guinea nor is it a pig. And why is it that writers write but fingers don't fing, grocers don't groce and hammers don't ham?
Doesn't it seem crazy that you can make amends but not one amend?
If you have a bunch of odds and ends and get rid of all but one of them, what do you call it?
If teachers taught, why didn't preachers praught?
If a vegetarian eats vegetables, what does a humanitarian eat?
Sometimes I think all the folks who grew up speaking English should be committed to an asylum for the verbally insane.
In what language do people recite at a play and play at a recital? Ship by truck and send cargo by ship? Have noses that run and Feet that smell? How can a slim chance and a fat chance be the same, while a wise man and a wiseguy are opposites?
You have to marvel at the unique lunacy of a language in which your house can burn up as it burns down, in which you fill in a form by filling it out and in which an alarm goes off by going on.
http://sayings.wordpress.com/tag/idioms-sayings-and-slang/
I never quite thought about our language that way, I just took all these idiosyncrasies for granted. I might just have to reconsider and give a couple of hours a month to teaching. It does seem they are going to need all the help they can get!
..........
........
We have something exciting coming up on January 31st through the Lupus Foundation.
Dr Mark Gourley will be speaking and answering questions in a chat about environmental factors in lupus. If you have questions that you would like to submit, there is a link at www.lupus.org where you can do just that. At the least we can be together to hear what he has to say and to learn what we can do to continue the fight. Mark your calendars, January 31st, it starts at 3 EST. More info hopefully next week.
..............
Since no one sent in any nutritious goodies this week to share, I thought , I would put something that Jeanine sent me that would fit in the column and also "sort of" ties in with the rest of my newsletter.
For readers who watch what they eat, here's the final word on nutritionand health.
Facts
1. Japanese people eat very little fat and suffer fewer heart attacksthan the Australians, British or Americans.
2. Mexicans eat a lot of fat and suffer fewer heart attacks than theAustralians, British or Americans.
3. Africans drink very little red wine and suffer fewer heart attacksthan the Australians, British or Americans.
4. Italians drink large amounts of red wine and suffer fewer heartattacks than the Australians, British or Americans.
5. Germans drink a lot of beer and eat lots of sausages and fats andsuffer fewer heart attacks than the Australians, British or Americans.
Conclusion: Eat and drink what you like.
Speaking English is apparentlywhat kills you.
Jeanine
.......... ........
Remember this is your newsletter. If you have anything you would like to share with the group I would love to see it. I can't promise I will be able to put everything into the newsletter but I will promise you that I will try.
One of our lupies (blues2pumpkin), Mary, is working on a local radio show. She is doing three jobs for urradio now, promoing, palace, special events and she does them all night from 7 til 1. I know some of our music buffs would love to tune in http://www.urradio.com/ She just wanted to let ya know! You can reach her directly at blues_urradio@yahoo.com (there is an underscore between the blues and the urradio)
That is it for now. Goodbye, shalom, yawo, giga-waabamin, au revoir, adios, sayonara, zai jian, Usale Kahle Here is the chat schedule......
OUR LUPUS CHAT SCHEDULE
SundayLupus Discussion Chat
8:00 PM EST
7:00 PM CST
6:00 PM MST
5:00 PM PST
SLE HLTH MartyRoom: AOL Lupus Chat Room
MondayLupus & Your Life Discussion Chat
(Two hour chat)
8:00 PM EST
7:00 PM CST
6:00 PM MST
5:00 PM PST
SLE HLTH RdwolfRoom: AOL Lupus Chat Room
TuesdayLet's Get Together Lupus Chat
10:00 PM EST
9:00 PM CST
8:00 PM MST
7:00 PM PST
SLEHealth Scooby
Room: AOL Lupus Chat Room
WednesdayLate Night Lupus Chat
11:00 PM EST
10:00 PM CST
9:00 PM MST
8:00 PM PST
SLE HLTH MartyRoom: AOL Lupus Chat Room
ThursdayLupus Fun Night Chat
7:00 PM EST
6:00 PM CST
5:00 PM MST
4:00 PM PST
HST HLTH ANNEY AND HST HLTH MICHELE
Room: AOL Lupus Chat Room
Tags: lupus chat, lupus online support, lupus social
I just wanted to introduce my new lupus friends to some great resources for socializing online with other people who know just what you are going through.
All of this delightful entry is totally creditted to Michele who volunteers her time and talent .
Thank you, Michele, for helping all of us with lupus to find a safe place to visit and care for each other!
Michele places all kinds of fun graphics and fonts in her newsletter, unfortunately, they don't show up here. You can contact Michele to sign up for her newsletters.
******************************************
Hello, buenos dias, kia ora, bonjour, salaam, konnichi wa, havari, guten tag, osiyo, tervist! I guess you can see that I have been to my first English as a Second Language Teacher's Course. That may be as far as I get considering the huge amount of work it seems to involve. How do you even begin to teach someone this language of ours? I will talk more about this later but right now I have to tell you about this week's game before I lose the folks that only read the first paragraph.
You know all those silly sayings that your mother and grandmother always recited to make a point when you did something wrong and you thought they sounded so lame? How about when your grandpa would come up with a real dilly? Well, you should have listened because now they are coming back to haunt you. We will be giving you a common "old saying" and you will have to fill in the blank. For example.
Why buy the cow when you can get the milk for ___________.
OK , I won't even tell you the answer for that one because it was such an easy one. You get the idea, right? I WILL tell you though that I just picked that one out randomly from the paper, it was NOT one that I heard from my mother, lol. It is time for a good laugh and I can assure you that laughter is not only common it is a given in these chats.
I DO hope that we will see you in the Lupus Chat room on Thursday night at 7 pm EST.
Yes, that is tomorrow for those of you that lose the day of the week like I do, see you there!
Now that I have business taken care of I can talk a little more about this language of ours. After 16 years of school I have but a tiny grasp of the English language but still don't understand those little pronunciation questions that we all ponder from day to day.
This handout that we got only makes it that much more confusing.......
SOME REASONS TO BE GRATEFUL IF YOU GREW UP SPEAKING ENGLISH
1) The bandage was wound around the wound.
2) The farm was used to produce produce.
3) The dump was so full that it had to refuse more refuse.
4) We must polish the Polish furniture.
5) He could lead if he would get the lead out.
6) The soldier decided to desert his dessert in the desert.
7) Since there is no time like the present, he thought it was time to present the present.
At the Army base, a bass was painted on the head of a bass drum.
9) When shot at, the dove dove into the bushes.
10) I did not object to the object.
11) The insurance was invalid for the invalid.
12) There was a row among the oarsmen about how to row.
13) They were too close to the door to close it.
14) The buck does funny things when the does are present. 15) A seamstress and a sewer fell down into a sewer line.
16) To help with planting, the farmer taught his sow to sow.
17) The wind was too strong to wind the sail.
18) After a number of Novocain injections, my jaw got number.
19) Upon seeing the tear in the painting I shed a tear.
20) I had to subject the subject to a series of tests.
21) How can I intimate this to my most intimate friend?
22) I spent last evening evening out a pile of dirt.
Screwy pronunciations can mess up your mind!
For example, if you have a rough cough, climbing can be tough when going through the bough on a tree!
There is neither egg in eggplant, nor ham in hamburger; neither apple nor pine in pineapple. English muffins weren't invented in England.
WE TAKE ENGLISH FOR GRANTED.
But if we explore its paradoxes, we find that quicksand can work slowly, boxing rings are square and a guinea pig is neither from Guinea nor is it a pig. And why is it that writers write but fingers don't fing, grocers don't groce and hammers don't ham?
Doesn't it seem crazy that you can make amends but not one amend?
If you have a bunch of odds and ends and get rid of all but one of them, what do you call it?
If teachers taught, why didn't preachers praught?
If a vegetarian eats vegetables, what does a humanitarian eat?
Sometimes I think all the folks who grew up speaking English should be committed to an asylum for the verbally insane.
In what language do people recite at a play and play at a recital? Ship by truck and send cargo by ship? Have noses that run and Feet that smell? How can a slim chance and a fat chance be the same, while a wise man and a wiseguy are opposites?
You have to marvel at the unique lunacy of a language in which your house can burn up as it burns down, in which you fill in a form by filling it out and in which an alarm goes off by going on.
http://sayings.wordpress.com/tag/idioms-sayings-and-slang/
I never quite thought about our language that way, I just took all these idiosyncrasies for granted. I might just have to reconsider and give a couple of hours a month to teaching. It does seem they are going to need all the help they can get!
..........
........
We have something exciting coming up on January 31st through the Lupus Foundation.
Dr Mark Gourley will be speaking and answering questions in a chat about environmental factors in lupus. If you have questions that you would like to submit, there is a link at www.lupus.org where you can do just that. At the least we can be together to hear what he has to say and to learn what we can do to continue the fight. Mark your calendars, January 31st, it starts at 3 EST. More info hopefully next week.
..............
Since no one sent in any nutritious goodies this week to share, I thought , I would put something that Jeanine sent me that would fit in the column and also "sort of" ties in with the rest of my newsletter.
For readers who watch what they eat, here's the final word on nutritionand health.
Facts
1. Japanese people eat very little fat and suffer fewer heart attacksthan the Australians, British or Americans.
2. Mexicans eat a lot of fat and suffer fewer heart attacks than theAustralians, British or Americans.
3. Africans drink very little red wine and suffer fewer heart attacksthan the Australians, British or Americans.
4. Italians drink large amounts of red wine and suffer fewer heartattacks than the Australians, British or Americans.
5. Germans drink a lot of beer and eat lots of sausages and fats andsuffer fewer heart attacks than the Australians, British or Americans.
Conclusion: Eat and drink what you like.
Speaking English is apparentlywhat kills you.
Jeanine
.......... ........
Remember this is your newsletter. If you have anything you would like to share with the group I would love to see it. I can't promise I will be able to put everything into the newsletter but I will promise you that I will try.
One of our lupies (blues2pumpkin), Mary, is working on a local radio show. She is doing three jobs for urradio now, promoing, palace, special events and she does them all night from 7 til 1. I know some of our music buffs would love to tune in http://www.urradio.com/ She just wanted to let ya know! You can reach her directly at blues_urradio@yahoo.com (there is an underscore between the blues and the urradio)
That is it for now. Goodbye, shalom, yawo, giga-waabamin, au revoir, adios, sayonara, zai jian, Usale Kahle Here is the chat schedule......
OUR LUPUS CHAT SCHEDULE
SundayLupus Discussion Chat
8:00 PM EST
7:00 PM CST
6:00 PM MST
5:00 PM PST
SLE HLTH MartyRoom: AOL Lupus Chat Room
MondayLupus & Your Life Discussion Chat
(Two hour chat)
8:00 PM EST
7:00 PM CST
6:00 PM MST
5:00 PM PST
SLE HLTH RdwolfRoom: AOL Lupus Chat Room
TuesdayLet's Get Together Lupus Chat
10:00 PM EST
9:00 PM CST
8:00 PM MST
7:00 PM PST
SLEHealth Scooby
Room: AOL Lupus Chat Room
WednesdayLate Night Lupus Chat
11:00 PM EST
10:00 PM CST
9:00 PM MST
8:00 PM PST
SLE HLTH MartyRoom: AOL Lupus Chat Room
ThursdayLupus Fun Night Chat
7:00 PM EST
6:00 PM CST
5:00 PM MST
4:00 PM PST
HST HLTH ANNEY AND HST HLTH MICHELE
Room: AOL Lupus Chat Room
Tags: lupus chat, lupus online support, lupus social
Saturday, January 06, 2007
#109 - The Social Worker is Getting a Social Worker
Here is my thought about being a clinical social worker:
Nothing except the Grace of God makes the difference regarding which side of the desk you are sitting at during a counseling session.
In order to separate the professionals from the folks coming in for help...
labels are given:
patients...
which morphed into clients...
and I recall during some of my time in graduate school that there was talk of using the term consumers.
I think that type of terminology is pretty darn silly.
You are grieving and you need help through it...
so you become a client?
You have been horribly abused and are seeking help with the healing...
does that really make you a patient?
And that consumer nonsense...
please let's not go there.
So when I would sense that someone was feeling a huge canyon between us during a counseling session...
I would remind them that we are just all people.
That I was there for that person to help them along the journey...
that I didn't have all the answers and actually, if counseling went well...
they would discover that many answers were already waiting within themselves.
I liked to think of myself as a partner on the journey to awareness.
On good days on the job, I might actually be present when someone obtained a breath of enlightenment...
or I could witness the lightening of a heavy burden...
or see a smile that had long been gone.
All the bad things that happen to people, no one is immune from such things. And people need to remember that when they go for counseling.
Now I will take the rose colored glasses off.
Because when it came to be my turn to have someone help me...
I kicked, screamed, and ranted rather rudely at a poor nurse on the phone line who was trying to link me up with a social worker for case management.
This happened about three years ago.
I was six months into being diagnosed with systemic lupus, depressed beyond the beyonds...
thinking that any day now I would walk out of this nightmare and go back to work and my "old" life.
I had convinced myself that I had lupus the way someone might have the flu.
I was still in a "Get Well Soon" mentality, and I resented anyone even alluding to my reality which is that I have a serious health challenge...
and that I desperately needed help.
When I got the call from my insurance company's nurse...
I blew up.
In the past year I had been through an MS scare, a Lyphoma scare, an oh it's "only" fibromyalgia to, " um... gee lady, you got lupus."
Those of you with lupus know the roller coaster ride.
A kerjillion tests that invade your person, being poked prodded and usually dismissed by a handful of specialists, watching family and friends grow frustrated with you because you are not "yourself" any more...
and watching everything that you held dear start slipping away...
you career, your social life, your ability to maintain your home, your ability as a parent, spouse, friend, sister, daughter...
whooosh...
vanishing.
So you build yourself up like a boxer in the world's biggest, longest battle...
and fight, fight, fight day in and day out with yourself and anybody near you...
just to try to be "normal" again.
And then some wise guy from an insurance company (that undoubtedly has given you a share of grief over the ever-increasing bills)...
well, now they want to pry into that carefully built armor and try to start telling you what to do?!!!
ARGHHHHH!
So I "ARGGGGH'd" at the nurse, told her, " I AM A SOCIAL WORKER... I DON'T NEED ONE DAMMIT!" and hung up on her.
Three years later...
Lo and behold I get "the call" again from a nurse representing my insurance company.
I am in a better space now...
not what I would call a good space...
but, ready to say, "Okie-dokie this social worker needs a social worker."
What changed?
Hmmm...
three years of witnessing my husband take on the lion's share of household responsibilities while I continued to pretend that I would be better any day now?
Three years of watching my child from age 4 through 7 learn how to adjust to a mommy who is usually bed ridden, on the couch or just plain "out of it"?
Or should I mention the guilt that comes with all of this?
Huge solid lumps of guilt washed down with humble pie and large gulps of pride swallowing.
Yeah...
that about sums it up.
So I tell the phone nurse, "Yes, I need a case manager, a social worker...uh... please."
And then the phone interview begins.
(You know, nothing is ever easy is it?)
Thirty minutes of question after question...
and all of these questions are reminders of what I do not like to contemplate...
Here's a sample:
"Do you have your living will prepared?"
(oh...um... this thing is going to kill me isn't it?)
"Do you know the signs of a heart attack?"
(er... oh, yes... now I remember that lecture from the rheumatologist... how did it go?)
So phone nurse grilled me on the heart thing...
and turned up the volume on me because I have frequent bouts of chest and jaw pain.
Ya!Ya!Ya!
(Once again, if you have lupus AND fibromyalgia... it's really, really hard to know which pain is a heart attack thingy. I happen to have costochondriasis... which is the chronic inflammation of the cartilage that holds your rib cage together... oh, and TMJ... and thoracic outlet syndrome... which frequently cuts off the circulation to my left arm...
SO EXCUSE ME IF I DON'T CALL THE EMERGENCY ROOM EVERY TIME I HURT!!!!)
Back to our regular programming.
Phone nurse gives up on me...
mumbles you better get back to your cardiologist and commences with grilling me about strokes.
(I hesitate to tell her that this phone interview is giving me a stroke. I know my lupus pals who actually have had a stroke... or many strokes... would know I am being overly dramatic... and I would not want to trivialize the reality of lupus.)
I tick off the list of stroke symptoms...
and the phone nurse corrects me because I missed a few.
Before I can interject that the lupus effects my cognitive (thinking) skills,
(in particular, my memory, word recall... also known as aphasia... and making STUPID LISTS!)
phone nurse lectures me about cognitive problems and lupus.
(Duh. No kidding, lady.)
Phone nurse asks me what cognitive deficits I have with lupus...
I tell her attention span, and we leave it at that.
So what about depression, she asks.
YES I AM DEPRESSED!!!
Phone nurse is getting annoyed with me now...
can you blame her
and asks...
What are you doing about that?
(hmmm... trying avoid talking to people like you who like to remind me that I know the number of the bus that is going to hit me and send me to Heaven's gate... you know a bus called L-U-P-U-S?)
I tell her I am doing what needs to be done to cope with the depression.
More questions... do you find it hard to enjoy things, favorite activities...
"No," I politely tell her... trying to make nice-nice for being grouchy.
(But, I am thinking... I know how to have fun... lupus keeps getting in the way...ARRRGH!)
I think I am starting to scare her now, which is a really good thing because I want this phone conversation to end.
I get some more lectures about the doctors I should of, could of, would of seen if they were doing their jobs correctly...
and she reminds me to be a good girl and take my pills four times a day...
all 16 of them
(and that's on a good day)
I wrap the whole thing up before she reminds me of something else that makes me feel miserable and she agrees to assign a social worker to me.
"Well, thank you!" I chirp.
(See? See how happy I am? Happy! Happy! Joy! Joy! Now go away scary Nurse lady.)
" Anything else?" she asks me.
"Nope," I respond....
but, there is one thing I DID want to say...
I didn't say it to her, but I will say it here:
Nothing except the Grace of God, Ms. Nurse, makes the difference between which end of the phone line we are on today.
Now could someone please get me a cookie?
Loretta Kelly, B.S.Ed., M.S.W.
copyright 2007
Nothing except the Grace of God makes the difference regarding which side of the desk you are sitting at during a counseling session.
In order to separate the professionals from the folks coming in for help...
labels are given:
patients...
which morphed into clients...
and I recall during some of my time in graduate school that there was talk of using the term consumers.
I think that type of terminology is pretty darn silly.
You are grieving and you need help through it...
so you become a client?
You have been horribly abused and are seeking help with the healing...
does that really make you a patient?
And that consumer nonsense...
please let's not go there.
So when I would sense that someone was feeling a huge canyon between us during a counseling session...
I would remind them that we are just all people.
That I was there for that person to help them along the journey...
that I didn't have all the answers and actually, if counseling went well...
they would discover that many answers were already waiting within themselves.
I liked to think of myself as a partner on the journey to awareness.
On good days on the job, I might actually be present when someone obtained a breath of enlightenment...
or I could witness the lightening of a heavy burden...
or see a smile that had long been gone.
All the bad things that happen to people, no one is immune from such things. And people need to remember that when they go for counseling.
Save for the Grace of God there is no difference between you and me.
And evebn with the Grace of God...
most of us get wallopped by life some time or another.
Now I will take the rose colored glasses off.
Because when it came to be my turn to have someone help me...
I kicked, screamed, and ranted rather rudely at a poor nurse on the phone line who was trying to link me up with a social worker for case management.
This happened about three years ago.
I was six months into being diagnosed with systemic lupus, depressed beyond the beyonds...
thinking that any day now I would walk out of this nightmare and go back to work and my "old" life.
I had convinced myself that I had lupus the way someone might have the flu.
I was still in a "Get Well Soon" mentality, and I resented anyone even alluding to my reality which is that I have a serious health challenge...
and that I desperately needed help.
When I got the call from my insurance company's nurse...
I blew up.
In the past year I had been through an MS scare, a Lyphoma scare, an oh it's "only" fibromyalgia to, " um... gee lady, you got lupus."
Those of you with lupus know the roller coaster ride.
A kerjillion tests that invade your person, being poked prodded and usually dismissed by a handful of specialists, watching family and friends grow frustrated with you because you are not "yourself" any more...
and watching everything that you held dear start slipping away...
you career, your social life, your ability to maintain your home, your ability as a parent, spouse, friend, sister, daughter...
whooosh...
vanishing.
So you build yourself up like a boxer in the world's biggest, longest battle...
and fight, fight, fight day in and day out with yourself and anybody near you...
just to try to be "normal" again.
And then some wise guy from an insurance company (that undoubtedly has given you a share of grief over the ever-increasing bills)...
well, now they want to pry into that carefully built armor and try to start telling you what to do?!!!
ARGHHHHH!
So I "ARGGGGH'd" at the nurse, told her, " I AM A SOCIAL WORKER... I DON'T NEED ONE DAMMIT!" and hung up on her.
Three years later...
Lo and behold I get "the call" again from a nurse representing my insurance company.
I am in a better space now...
not what I would call a good space...
but, ready to say, "Okie-dokie this social worker needs a social worker."
What changed?
Hmmm...
three years of witnessing my husband take on the lion's share of household responsibilities while I continued to pretend that I would be better any day now?
Three years of watching my child from age 4 through 7 learn how to adjust to a mommy who is usually bed ridden, on the couch or just plain "out of it"?
Or should I mention the guilt that comes with all of this?
Huge solid lumps of guilt washed down with humble pie and large gulps of pride swallowing.
Yeah...
that about sums it up.
So I tell the phone nurse, "Yes, I need a case manager, a social worker...uh... please."
And then the phone interview begins.
(You know, nothing is ever easy is it?)
Thirty minutes of question after question...
and all of these questions are reminders of what I do not like to contemplate...
Here's a sample:
"Do you have your living will prepared?"
(oh...um... this thing is going to kill me isn't it?)
"Do you know the signs of a heart attack?"
(er... oh, yes... now I remember that lecture from the rheumatologist... how did it go?)
So phone nurse grilled me on the heart thing...
and turned up the volume on me because I have frequent bouts of chest and jaw pain.
Ya!Ya!Ya!
(Once again, if you have lupus AND fibromyalgia... it's really, really hard to know which pain is a heart attack thingy. I happen to have costochondriasis... which is the chronic inflammation of the cartilage that holds your rib cage together... oh, and TMJ... and thoracic outlet syndrome... which frequently cuts off the circulation to my left arm...
SO EXCUSE ME IF I DON'T CALL THE EMERGENCY ROOM EVERY TIME I HURT!!!!)
Back to our regular programming.
Phone nurse gives up on me...
mumbles you better get back to your cardiologist and commences with grilling me about strokes.
(I hesitate to tell her that this phone interview is giving me a stroke. I know my lupus pals who actually have had a stroke... or many strokes... would know I am being overly dramatic... and I would not want to trivialize the reality of lupus.)
I tick off the list of stroke symptoms...
and the phone nurse corrects me because I missed a few.
Before I can interject that the lupus effects my cognitive (thinking) skills,
(in particular, my memory, word recall... also known as aphasia... and making STUPID LISTS!)
phone nurse lectures me about cognitive problems and lupus.
(Duh. No kidding, lady.)
Then I get the kidney lecture. Do you have any idea how many people with lupus wind up on dialysis?
And the blood draws because you're on chemotherapy lecture...
I am growing fidgety and inattentive by this time.Phone nurse asks me what cognitive deficits I have with lupus...
I tell her attention span, and we leave it at that.
So what about depression, she asks.
YES I AM DEPRESSED!!!
Phone nurse is getting annoyed with me now...
can you blame her
and asks...
What are you doing about that?
(hmmm... trying avoid talking to people like you who like to remind me that I know the number of the bus that is going to hit me and send me to Heaven's gate... you know a bus called L-U-P-U-S?)
I tell her I am doing what needs to be done to cope with the depression.
More questions... do you find it hard to enjoy things, favorite activities...
"No," I politely tell her... trying to make nice-nice for being grouchy.
(But, I am thinking... I know how to have fun... lupus keeps getting in the way...ARRRGH!)
I think I am starting to scare her now, which is a really good thing because I want this phone conversation to end.
I get some more lectures about the doctors I should of, could of, would of seen if they were doing their jobs correctly...
and she reminds me to be a good girl and take my pills four times a day...
all 16 of them
(and that's on a good day)
I wrap the whole thing up before she reminds me of something else that makes me feel miserable and she agrees to assign a social worker to me.
"Well, thank you!" I chirp.
(See? See how happy I am? Happy! Happy! Joy! Joy! Now go away scary Nurse lady.)
" Anything else?" she asks me.
"Nope," I respond....
but, there is one thing I DID want to say...
I didn't say it to her, but I will say it here:
Nothing except the Grace of God, Ms. Nurse, makes the difference between which end of the phone line we are on today.
Now could someone please get me a cookie?
Loretta Kelly, B.S.Ed., M.S.W.
copyright 2007
Wednesday, January 03, 2007
#108 - More About Rituxan and Lupus
First of all, I apologize for the delay in this follow-up post.
I wanted to add a bit more information about off label use of Rituxan in treating systemic lupus.
First of all, let's talk about "off label".
This is a very important term to consider when reviewing the recent findings regarding lupus and Rituxan.
Off label use means prescribing a medication that has not been FDA (Food and Drug Administration) approved, yet, for a certain condition.
Rituxan is used for Non-Hodgkins Lymphoma.
Those of you who read this blog regularly know that my eldest sister has been battling with lymphoma this past year. The Rituxan treatment has put her into remission and saved her life.
Rituxan has also recently been approved by the FDA for treatment of rheumatoid arthritis in conjunction with Methotrexate.
Off label uses include:
Chronic lymphocytic leukemia (a type of cancer of the blood and lymph system)
Waldenstrom's macroglobulinemia (a certain type of cancer of the blood)
Immune or idiopathic thrombocytopenic purpura (ITP) (a blood disease)
When a medication is found to be beneficial in the treatment of certain medical conditions, there are occasions when that medication may be used "off label" for similar medical conditions.
In regards to systemic lupus...
Rituxan has been used to treat certain cases of lupus that have been non-responsive to other treatments AND the condition is life threatening.
Rituxan is in clinical trials (research) for more expanded use in the treatment of lupus.
Quite frankly, I got caught up in the excitement of this research, twice attempting to sign up as a test subject and twice being turned down.
There has been buzz via the internet of Rituxan as being the "miracle drug" for systemic lupus.
And people like me who are so desperate to garner full remission...
well, we become suckers for such kudos.
I became so excited with the idea of full remission from this miracle drug that I threw away years of training in interpretting research. I cast aside my clinical knowledge regarding introducing new medications as curealls of difficult to treat diseases and flew happily down that long river called...
da-Nile.
Rituxan IS a miracle drug for some people with lupus.
But, it is NOT a cure-all for everyone with lupus.
And MedScape had released very serious information on December 19th.
Two people had unexpectedly developed progressive multifocal leukoencephalopathy and subsequently died.
TRANSLATION: Rituxan (also known as Rituximab) is NOT a miracle drug. The off label use of any medication can have serious consequences... and we all must be cautious about diving completely and unquestioning into a mode of treatment.
Let me give you a little inside scoop about drug research and systemic lupus.
Those of us with lupus are not on the top of the list for research in pharmaceutical companies.
Our numbers are few compared to many diseases. (TRANSLATION: Will the company profit by investing in research and development?)
Our current status is incurable.
Our symptoms vary widely.
Lupus attacks anything and everything in our bodies, so our disease is pretty naughty and unpredictable. That makes for bad research candidates. Our disease does not progress in a predictable manner like other diseases.
Researchers need to have patients that have a disease with some predictable progression. They are obligated to make sure that their testing does no further harm to patients.
When you think lupus... it is almost the Russian roulette of disease research.
You and I live with this darn thing and we know that it is really hard to know what lupus is going to do to us from one day to the next.
How are researchers supposed to do their job when they can not confidently predict that their research will not harm test subjects?
The reality right now for those of us with lupus, is that we are benfitting from research that was intended for other diseases.
Such is the case with Rituxan.
Rituxan was developed for the treatment of cancer.
Now people with rheumatoid arthritis are able to benefit.
And only SOME of us with lupus will probably benefit in the long-term from Rituxan research.
This is no one's fault.
This is our reality.
We are living with an unpredictable, potentially life threatening disease that is as inconsistant as a feather in a wind storm.
And that unpredictability for many of us is one of the most difficult things to live with in our challenges with lupus.
How do you plan your future, heck how do you plan doing your chores today... when you don't know from one moment to the next how lupus is going to go after you?
So we cling fast to new treatments that promise full remission.
We are only human after all.
And many will benefit.
Rituaxan has been a lifesaver for a number of people with systemic lupus.
I think that what we all need to take away with us from the recent fatalities from Rituxan intervention is that we need to stay alert.
We have to educate ourselves.
And for those of us with lupus who are unable to do so, we need caregivers and a support network that will advocate for us.
And lest we forget, two precious people died this past year while undergoing treatment with Rituxan.
To their families and friends, I personally express my condolences.
For more information visit the following websites:
Progressive Multifocal Leukoencephalopathy Information Page: National Institute of Neurological Disorders and Stroke (NINDS)
MedlinePlus Drug Information: Rituximab (Systemic)
Rituxan Approved for Rheumatoid Arthritis - The Facts of Rituxan
Methotrexate - Dosage - Side Effects - Drug Interactions - Warnings
RITUXIMAB - INJECTION (Rituxan) side effects, medical uses, and drug interactions.
I wanted to add a bit more information about off label use of Rituxan in treating systemic lupus.
First of all, let's talk about "off label".
This is a very important term to consider when reviewing the recent findings regarding lupus and Rituxan.
Off label use means prescribing a medication that has not been FDA (Food and Drug Administration) approved, yet, for a certain condition.
Rituxan is used for Non-Hodgkins Lymphoma.
Those of you who read this blog regularly know that my eldest sister has been battling with lymphoma this past year. The Rituxan treatment has put her into remission and saved her life.
Rituxan has also recently been approved by the FDA for treatment of rheumatoid arthritis in conjunction with Methotrexate.
Off label uses include:
Chronic lymphocytic leukemia (a type of cancer of the blood and lymph system)
Waldenstrom's macroglobulinemia (a certain type of cancer of the blood)
Immune or idiopathic thrombocytopenic purpura (ITP) (a blood disease)
When a medication is found to be beneficial in the treatment of certain medical conditions, there are occasions when that medication may be used "off label" for similar medical conditions.
In regards to systemic lupus...
Rituxan has been used to treat certain cases of lupus that have been non-responsive to other treatments AND the condition is life threatening.
Rituxan is in clinical trials (research) for more expanded use in the treatment of lupus.
Quite frankly, I got caught up in the excitement of this research, twice attempting to sign up as a test subject and twice being turned down.
There has been buzz via the internet of Rituxan as being the "miracle drug" for systemic lupus.
And people like me who are so desperate to garner full remission...
well, we become suckers for such kudos.
I became so excited with the idea of full remission from this miracle drug that I threw away years of training in interpretting research. I cast aside my clinical knowledge regarding introducing new medications as curealls of difficult to treat diseases and flew happily down that long river called...
da-Nile.
Rituxan IS a miracle drug for some people with lupus.
But, it is NOT a cure-all for everyone with lupus.
And MedScape had released very serious information on December 19th.
Two people had unexpectedly developed progressive multifocal leukoencephalopathy and subsequently died.
TRANSLATION: Rituxan (also known as Rituximab) is NOT a miracle drug. The off label use of any medication can have serious consequences... and we all must be cautious about diving completely and unquestioning into a mode of treatment.
Let me give you a little inside scoop about drug research and systemic lupus.
Those of us with lupus are not on the top of the list for research in pharmaceutical companies.
Our numbers are few compared to many diseases. (TRANSLATION: Will the company profit by investing in research and development?)
Our current status is incurable.
Our symptoms vary widely.
Lupus attacks anything and everything in our bodies, so our disease is pretty naughty and unpredictable. That makes for bad research candidates. Our disease does not progress in a predictable manner like other diseases.
Researchers need to have patients that have a disease with some predictable progression. They are obligated to make sure that their testing does no further harm to patients.
When you think lupus... it is almost the Russian roulette of disease research.
You and I live with this darn thing and we know that it is really hard to know what lupus is going to do to us from one day to the next.
How are researchers supposed to do their job when they can not confidently predict that their research will not harm test subjects?
The reality right now for those of us with lupus, is that we are benfitting from research that was intended for other diseases.
Such is the case with Rituxan.
Rituxan was developed for the treatment of cancer.
Now people with rheumatoid arthritis are able to benefit.
And only SOME of us with lupus will probably benefit in the long-term from Rituxan research.
This is no one's fault.
This is our reality.
We are living with an unpredictable, potentially life threatening disease that is as inconsistant as a feather in a wind storm.
And that unpredictability for many of us is one of the most difficult things to live with in our challenges with lupus.
How do you plan your future, heck how do you plan doing your chores today... when you don't know from one moment to the next how lupus is going to go after you?
So we cling fast to new treatments that promise full remission.
We are only human after all.
And many will benefit.
Rituaxan has been a lifesaver for a number of people with systemic lupus.
I think that what we all need to take away with us from the recent fatalities from Rituxan intervention is that we need to stay alert.
We have to educate ourselves.
And for those of us with lupus who are unable to do so, we need caregivers and a support network that will advocate for us.
And lest we forget, two precious people died this past year while undergoing treatment with Rituxan.
To their families and friends, I personally express my condolences.
For more information visit the following websites:
Progressive Multifocal Leukoencephalopathy Information Page: National Institute of Neurological Disorders and Stroke (NINDS)
MedlinePlus Drug Information: Rituximab (Systemic)
Rituxan Approved for Rheumatoid Arthritis - The Facts of Rituxan
Methotrexate - Dosage - Side Effects - Drug Interactions - Warnings
RITUXIMAB - INJECTION (Rituxan) side effects, medical uses, and drug interactions.
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