One Patient's Positive Perspectives

Posts tagged ‘lupus nephritis’

Meet Toni Grimes, an amazing Arizona lupus warrior

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Toni Grimes, Lupus Patient

It is my special pleasure to introduce you to a beautiful woman with a matching soul, Toni Grimes.  She is, in my opinion, the foremost lupus advocate and warrior in Arizona.  If you could meet her personally, after just a few minutes of pleasant and positive conversation, you would quickly begin to understand what an amazing person she is!

May 3, 2014 Scottsdale, AZ

5-3-14 Scottsdale, AZ

After many wonderful opportunities to meet and talk with Toni, and observing her tireless leadership in local Lupus Foundation of America (LFA) activities here in Arizona, I am impressed. She is creative, energetic and makes things “happen.”   Toni’s volunteer work was absolutely critical to the success of our local Walk to End Lupus Now last year, and is the walk chair again for our upcoming walk in Scottsdale, Arizona on May 3, 2014.

The reporter that recently interviewed Toni for a local newspaper, wrote about the impact lupus has had on Toni’s life, and a bit about how Toni fights back against the negative aspects of lupus.   Toni served for 17 years in the military until suddenly being diagnosed with systemic lupus.  She retired after a collapsed lung and lupus nephritis sidelined her from service in Afghanistan.  She now works as a local Lupus Foundation of America support group facilitator, and is an active advocate for female veterans and a personal trainer for people with disabilities.

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Read more about Toni

I heartily recommend Shelby Slade’s article about Toni.  Shelby is a student at the Walter Cronkite School of Journalism and Mass Communication, and is now an intern at the Mesa Tribune in Arizona. She should be congratulated for her great job of research and conveying Toni Grimes’ encouraging story.

Please click here to read the Mesa Tribune article about Toni.

I think you may want to share Toni’s story with your own circle of contacts in the lupus community…

Lupus Fact & Blog of the Day No. 13 – Flow on Lupus and Fatigue

Lupus Awareness Blog No. 13 – Miz Flow’s Life of a Thirty-Something with Lupus

Miz FlowThe Lupus blogger in today’s spotlight is Flo, a self-described “30-something year old female with Lupus!”  Her blog www.flowonlupus.com chronicles her lupus journey that started when she was just a young teen, shortly after becoming class president and 8th grade valedictorian. That summer, her parents bought her a bike, and she recalls riding “throughout the city every single day of that summer.”  By November, she was paralyzed with fatigue, sometimes having to crawl from her bed to other rooms.

Eventually Flo was diagnosed with Lupus Nephritis, and started dialysis.  Along the way, she has experienced many extremely severe lupus manifestations and surgeries.  She reflects, “Little did I know what else was in store for me.”

She recently graduated from college,  followed by a long-awaited kidney transplant.  She tells her readers, “I am so excited about what the future holds” and what “just life in general has in store!”  She hopes to apply her recent Human Resources degree to a recruiting job her not-t00-distant future career.

Miz Flow

“Miz Flow” as she dubs her blogging persona, is an amazing lupus patient who has succeeded in battling the many challenging faces of lupus, and has remained positive and hopeful.  Flow started her blog in 2007 when she was in her mid-twenties, and it is an excellent resource for young lupus patients and their families.

You will like the candor and sincerity of her honest blogging, as well as the refreshing diversity of topics and interests of her posts that focus outside the lupus in her life.

Lupus Truth No. 13 – Fatigue impacts employment

Limits with Lupus...

Waiting on Fog to Clear

Coping with Lupus: As many as 80 percent of people with lupus experience fatigue. For some, fatigue can be debilitating, even to the point of forcing them to stop working.

It is ironic that this is the lupus fact for today!  I am sitting at home, waiting on the mental shakiness of a severe morning CNS flare to pass, so that I can try to telecommute for the afternoon.

Earlier, I woke up in a near state of stupor, and infused with diffuse joint pain and aching from head to foot.  I am so tired that I think could work up a sweat just lifting my fingers to type.  Shall we call this bone-tired fatigue?

Along with today’s whopping lupus flare is the invisible scrambled state of my mind.  My cognition is in spurts and starts — putting two thoughts together is incredibly slow and difficult.  Typing this blog post is requiring unusual mental effort, while in-between typing each sentence my fatigue is making me fall asleep.  Wow, am I exhausted!

Eating a lean lunch of mixed fruit, ham/cheese rolls ups, Triscut crackers and tea did not seem to clear my mind or revive my body.

In a bit, I am going to try to use my indoor cycle trainer in first gear peddling very slowly for a few minutes, to see if I can get my body and brain to re-connect.  The way my balance and coördination are impaired now, even this will be difficult.

4445-POPFlyer_Shirt_Yellow_webI have some analytical writing work to do this afternoon that is still way too difficult in the current the state of my wobbly brain and impaired focus.  I have prayed and asked for God’s help to meet my obligations and responsibilities, and to make the hidden metabolic miracle of quieting this flare to take place.

To learn more about this lupus fact, please read my post from  May 13, 2012.

Plan to POP — Put on Purple — for Lupus May 17th

Remember to dry-clean your purple duds to get ready to “POP” — Put on Purple — for Lupus on this Friday, May 17th!

Lupus and the Name Inside the Book

The name inside the music book

I opened my choir book to look inside the front cover of the Christmas music the choir director had just passed out.  This year, my church choir will be re-performing a cantata we last sang several years ago.  This year, the music was not reassigned to the same musicians and was given to different singers.  Peeking inside the front cover of mine brought a wistful tear to my eye, and a flood of memories about the last person who used it.

The book had the name “Gaynel” written in pencil in the upper right hand corner of the title page of the music.  Gaynel had lupus, too, and I have mentioned her here once before.  She was almost old enough to be my mom, or at least my aunt.  Gaynel was a charter member of our church, and was loved fondly by everyone who knew her.  She and her late husband were very close friends with my in-laws who all originally came from New York.  My husband and I have known and loved her and her extended family for over 25 years.

Gaynel’s story is unfortunate while also one of faith, hope and courage.

Lupus Nephritis

In the last years of her life, Gaynel was a widow and battling kidney failure due to lupus nephritis, while undergoing home peritoneal dialysis.  Everywhere she went, she carried a rolling oxygen tank with her.  When she finally became so ill that she left the transplant list, we all sorrowed with her.  It became clear to her doctors that she was too weak to make it through a second transplant surgery, after her lupus nephritis destroyed the transplanted kidney she had received several years earlier.

I remember Gaynel before she had kidney failure.  She was a dynamic, cheerful spiritual leader in our church.  She and her late husband directed a large children’s bible club ministry in our church that involved countless children over more than twenty years, including my son and daughter.  She was also the church treasurer, a role she continued until right before her death two years ago.  The one other ministry that she was extremely determined to continue until the end, was her love of singing in the church choir.  For several of her last few years, one of the choir members helped her to her seat at the end of the alto section of the choir, with oxygen tank in tow.

Preparing for Christmas music

So, this season as we prepare our Christmas Cantata, I have the bittersweet memory-invoking honor of holding the choir book that was last used by Gaynel.  She was a hero to me, and an inspiration to everyone who watched her last years of suffering.  She faced them with cheerfulness and unwavering joy of faith.  Although she was the victim of lupus, she was neither bitter nor blaming, and accepted her fatal situation with poise and grace.

She often acted as if her lupus didn’t even exist, and never was the one to bring it up in conversation.

Her life touched so many, including mine

Two years have now gone by since her passing, and she is still mentioned from the pulpit and on the lips of all who knew her as a stalwart example of faith through trial.  She set a benchmark and example that I fear I cannot begin to meet, except as the grace of God might help me become a little more like Him.

Gaynel was a Christian, both in faith and in practice – facing her lupus and death, she had unwavering faith and strength of heart.  She was very much “Christlike,” the real meaning of the word “Christian.”

Gaynel’s life touched so many, and now, in the quiet small way her book now is held in my hands, she is still touching mine.  May I sing to God’s glory with a heart of faith as she did.

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To learn more about lupus nephritis, read “Kidney Disease,” an article on the Lupus Foundation of America‘s web site.

Living with Lupus: Fact #23 – Lupus nephritis and my friend

Living with Lupus: As many as 40 percent of all people with lupus, and as many as two-thirds of all children with lupus, will develop kidney complications that require treatment.  I have known several lupus patients with kidney involvement, but only one person’s story stands out above all the others as both a wonderful and horrible example.  My friend was courageous and undaunted in her battle with lupus, while her medical treatment plan was fatally flawed.

My friend had lupus nephritis

Several years ago, a wonderful woman in my church was suffering with end stage renal disease.  For years, she and her husband taught bible classes to our children and hundreds of others in the church.  She lost her husband to a pituitary tumor, and in the years that followed, her Lupus went on to destroy her remaining kidney function.  Many people prayed for her and helped her any way they could, and she kept her cell phone close, even during church services waiting for the call that a kidney had been found for a transplant.

lupus nephritis

During all her battle with lupus nephritis, her treatment never involved a rheumatologist to our knowledge.  Many times, several of us who knew her, including a couple of doctors that attended our church, encouraged her to strongly to seek out a rheumatologist to treat her lupus,   She kept telling us that her nephrologist planned to send her to one eventually, telling her, “we will treat the lupus once we get your kidneys under control.”  We encouraged her to push for a referral, or to even go see my rheumatologist, but she was passive and unwilling to push her nephrologist for a different approach.  She wouldn’t question him!

We all tried to explain to her that if lupus was what was causing her kidney failure, and they would probably never get her kidneys under control without controlling her lupus.  From what she told us about her medications and treatment plans, it was clear that her doctor never addressed her lupus!  Meanwhile, she continued to attend church services, prepare financial statements as the church treasurer, and even sang in the church choir.

kidney transplant

One day, she finally received the call and a successful kidney transplant surgery was done! For awhile, she was so much better.  But, she still did not see a rheumatologist.  Although the anti-rejection drugs she was receiving were doing a great job of preventing the organ rejection, they were not controlling her underlying lupus.   Although we continued to urge her to seek out a rheumatologist, she never did.

Eventually, she began to have problems with lupus attacking her transplanted kidney!  But, still, no rheumatologist. She was losing her transplanted kidney, not from rejection, but from lupus. 

About this time, I attended an LFA patient/doctor conference held in Alaska.  When I saw one of the physicians’ continuing medical education sessions was going to be taught by one of the world’s leading nephrologists, I decided to sit in with the doctors and listen.  I sat in the back of the conference room, thinking about my friend as I listened to discussions of the standard treatment protocols for lupus nephritis.  I realized from what my friend had told me about her medications, none of the standard treatments were tried on her.  I became more frustrated as the session progressed.

The most profound information I took away from the session what that almost without a single exception, emphatically, a lupus patient should never lose a transplanted kidney.  I spoke with the speaker after the session, and asked about the likelihood of losing a transplanted kidney.  The response?  “Once the physicians realize a patient has lupus nephritis, they know what to do to prevent loss of the transplanted kidney.  It is unheard of to lose a transplanted kidney to lupus.  That should never happen!”

But, this was not the case for our friend.  No one ever treated her lupus.  It seemed clear to me then that she might have been an unfortunate of victim of ignorance and unintended malpractice.  She never was referred to a rheumatologist, let alone ever receiving the prevailing standard of care for her lupus nephritis that I had learned about at the conference.

peritoneal dialysis

Eventually, our friend completely lost all kidney function, and began peritoneal dialysis while awaiting a second kidney transplant.  She got weaker and weaker, her skin became paper-thin covered with deep purple splotches, her hair  became sparse and fine, and her heart and lungs became weak.  She eventually became so ill, the sad day came when she received the word that she was permanently removed from the transplant waiting list.  She was never going to get another kidney.

A handful of us felt so helpless, as our many attempts over the years to convince her to be proactive about her treatment failed.  We were frustrated as we had to accept that she just didn’t have it within her to question her doctor or seek a second opinion.  Ultimately, that was her choice, and we had to respect it.  But, eventually it was too late. It was not too long after she was removed from the transplant list until we lost our dear friend.

Lupus took her kidneys, but not her joy

She was a close friend to many people near me in my life, my mother-in-law, many of my best friends and all the children whose lives she had touched over the years, including my own kids.  Through all her struggles, this amazing woman’s personal faith in God and unquenchable joy seemed to overcome all the emotional challenges of her long battle with illness and organ failure.

Remarkably, she never displayed any bitterness about her lupus and kidney failure, never considered blaming her doctors, and she patiently endured the unsuccessful treatments she received.  Through all her lupus battle, she inspired and encouraged everyone who knew her.  She never ever complained about how she felt, and kept a cheerful, sunny disposition to the end.  Our dear friend had lupus, and it took her life, but it never took away her great joy.

Even now, many years later, her name is mentioned as an inspiration and an icon of nobility and courage in the face of fatal illness.  She will not quickly be forgotten.

Lupus Awareness Month 2012 Fact #1 – Unpredictable Lupus!

Put on purple!

This month is a very special month in the lupus community, and a great month to pull out all of your purple clothes, jewelry, shoes, handbags, scarfs, hair bands, socks, nail polish, eyeshadow, lipstick, gel pens and notebooks. It would be a great month to decorate a house , office, apartment or car with purple spring decor items!  I am even looking for purple candy for the candy dish on my desk at work.   I plan to share and wear my purple everywhere, everyday in May!

Band Together for Lupus Awareness

The whole month of May is Lupus Awareness Month, May 10th will be World Lupus Day, and May 18th will be the day to POP for lupus awareness. The Lupus Foundation of America (LFA) campaign to encourage everyone to POP, or Put On Purple, on May 18th will help promote lupus awareness.  The LFA is also encouraging everyone in the lupus community to “Band together for Lupus Awareness.”

Many community billboards, web sites and other displays all over our country will be showing their purple colors in displays such as special building and fountain lighting colors joining with the LFA’s POP efforts to publicize lupus.

Here, we will be sharing a different Lupus fact each day, and talking about many Lupus Awareness activities and opportunities all month-long.

LUPUS FACT OF THE DAY No. 1

Lupus is an unpredictable and complex autoimmune disease that causes inflammation and can damage any organ in the body with life-threatening consequences. Signs and symptoms of lupus attack on various body symptoms are important to find and seek treatment for while they are active. From time to time lupus can attack nearly any system of a patient’s body.

Unpredictable Lupus!

My rheumatologist has said “the only predictable thing about lupus is that it is unpredictable.”  Sometimes for weeks, months or even years on end, lupus is quiet and has seemingly little effect on my health.  Then, without warning, lupus can flare quickly and cause profound changes in my health and quality of life.  Medications may need to be adjusted, lifestyle and work schedules changed, responsibilities and commitments rethought to respond to moderate and severe lupus flares.

One night a lupus patient may go to bed feeling great, yet in their next waking moment the following morning, they may face a  severe morning flare of arthritis, CNS confusion and cognitive impairment and overwhelming fatigue and malaise.  The next morning, a patient may wake up feeling wonderful, and other days may be somewhere between the extremes.  A lupus patient and their doctor need to be ready to respond to the changing face of the disease, to manage lupus and reduce the disruptive and harmful impacts it can have on a patient’s life.

Unpredictable ...

The complexity of lupus makes it difficult to diagnose and difficult to treat.  It is sometimes difficult to distinguish from autoimmune and other illnesses that attack a single body system, and some of these such as multiple sclerosis have similar symptoms, but require very different treatment and medications than lupus.  Some of the powerful drugs that are used to treat lupus, such as cancer chemotherapy drugs, transplant anti-rejection medications and various forms of steroids have significant side effects and risks.  There is no one standard treatment for lupus, because there is no standard set of symptoms common to all lupus patients.  Each patient is unique, and from time to time each patient’s lupus changes and requires different treatment approaches.

Lupus Causes Inflammation

Lupus causes inflammation in connective tissue by attacking the cells and causing premature cell death, or apoptosis.   A healthy body normally has to dispose of a certain amount of cellular debris from the components of cells that die in the normal course of the body’s tissue renewal, as old cells die and new ones are created that replace them in our living tissues.  However, with lupus, the number of cells that are dying is much greater, and the amount of cellular debris is greatly increased, causing a strain on the body’s systems that must filter and dispose of the spare cell parts.  The extra materials can accumulate in the affected tissues, causing inflammation.  The body also has to work harder to try to repair the damaged tissues and this affects the function and condition of the organs and other tissue where lupus damage has occurred.

... Lupus

Lupus Can Damage Any Body Organ

Lupus can attack nearly any organ.  My lupus has attacked my lungs, liver, central nervous system, peripheral nervous system, digestive system/colon, joints, tendons, skin, mouth & nasal mucous membranes.  There is hardly a system that cannot be a target of lupus.  A lupus patient needs to be aware and alert to changes that might signal a new and different set of symptoms.  It is critical to keep medical appointments that include regular lab work.  Sometimes the blood and other tests give the first signs of changes in lupus and may signal a new area of lupus activity of impending flare, even before visible symptoms can be detected.

Lupus Organ Damage Can Be Life-Threatening

Unchecked, lupus attacking the kidneys, liver, brain, heart, intestinal tract or vascular system can become life-threatening when one of these vital organs fails.  Lupus in one of the major causes of kidney failure, and nearly 50% of all lupus patients have some form of kidney involvement.  I have personally known other patients who lost their lupus battle because of its unabated attack on one or more of these organs.

It’s Best to Identify Lupus Symptoms When They Are Active

Although we can tell our doctors about our lupus symptoms after they have cleared up, it is harder for a doctor to respond to a report of symptoms he has not observed.  Lab tests done during a time of lupus symptom flare are more likely to give results that indicate the causes and severity of the lupus activity.  This helps your physician to have better first hand knowledge of your lupus.  If  a patient is still in the “wait and see” period of their doctor trying to find out if they do have lupus, it is even more critical doctors see the symptoms for themselves.

What can you do to help spread the word about unpredictable Lupus?

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