Have You Met Kesha?

Kesha is Lupus Colorado’s office manager. In June, she celebrated her 10 year “lupie-versary.”  

Like so many people with lupus, her journey to diagnosis wasn’t easy. And it seriously impacted her life.

When Kesha was just 12 credits shy of her degree, she started feeling sick. In fact, she was sick for about five months. Her doctors misdiagnosed her, unsure of what was wrong. It took a trip to the emergency room on June 28, 2007, to know the severity of what Kesha was facing.

Her body was shutting down. She spent 32 days in the hospital undergoing test after test and ingesting large doses of prednisone. On the 16th day of her stay, she was diagnosed with systemic lupus erythematosus.

Two months after her diagnosis, Kesha’s kidneys started to fail. That’s when she was also diagnosed with lupus nephritis. Kesha had to put her dreams of finishing college on hold indefinitely. She had to move back to Colorado to be near family.

Selfishly, we’re glad that Kesha is back in Colorado. And we’re thrilled that she’s able to help others with this terrible disease. As office manager, she’s the person people in Colorado speak with first about how their own disease in impacting their lives. Kesha helps people find the resources they need, including connecting them with Lupus Colorado’s emergency assistance fund. This fund helps with financial burdens, such as high utility bills, medication co-pays, and unexpected hospitalizations.

Kesha’s ability to help others with lupus helps to keep her own trials in perspective.

“As the Office Manager for Lupus Colorado, being able to help someone daily gives me hope and keeps me going and able to maintain lupus with peace of mind,” she said.

Thanks for all you do, Kesha!

City and County of Denver Launches Temporary Rental and Utility Assistance Program

Are you struggling with paying your rent, facing eviction or another housing crisis? The City and County of Denver has launched a new pilot program to assist residents who may be facing a housing crisis. Through the new Temporary Rental and Utility Assistance program (TRUA), the City is offering resources to help mitigate displacement, help residents avoid eviction, and provide time to help connect residents to alternative housing for longer-term stability. 

Details regarding the program and how to apply can be found on the City and County of Denver website or Click Here to download the PDF.  

Just Around the Corner

By Guest Blogger Sandra Kanowitz

Yes, they are coming-the holidays.  I always greet this time of year with a mixture of delight and dread. I love the fall season, with the cooler temperatures and glorious color. I have put my garden to bed and now have more time available. My nesting instincts have kicked in along with a more robust appetite, unfortunate for my waistline and half of the clothes in my closet. I am already fretting about who will do Thanksgiving, and will it fall on my shoulders. I love the holidays, but find myself increasingly unable to meet the many demands they present. Giving up old traditions, like setting the perfect table, having the house decorated and spotless, and greeting everyone with a smile and serenity is so hard for me. So I must make a game plan to survive the merriment and chaos that will soon ensue. Please borrow some of these ideas to bring more joy and less angst to your holiday season:

  • Start now planning your activities. Make a categorized task list, such as house preparation/decoration, meal prep, gift giving, social events, and family activities. List a task a day in logical order on your calendar so the work is spread out and more manageable.
  • Consider and discuss with others ways you can simplify, scale back, change-up, and rethink how you do the holidays. Less can be just as beautiful, more elegant, less cluttered, and relief from the sensory overload an “over the top” holiday can present.
  • Set the mood with lighting (fireplace, candles), music, seasonal scents and colors, and fewer decorations for which you must search, unbox, set up, dust, and later put away.
  • Use technology to your advantage. Order groceries online (check out King Soopers’ Clicklist service) or have them delivered (Amazon Prime, Whole Foods, Door-to-Door)*. Shop online for gifts and party supplies. Have packages picked up by ordering online at USPS.com, UPS.com)*. Put your to-do list and set reminders on your smart phone. Put household lights on timers. Send holiday e-cards, many of which are free online.
  • Take turns with someone shopping and sharing large quantity items from warehouse stores.
  • Try new conveniences like partially prepared meals from local businesses or delivered meal kits (Hello Fresh, Blue Apron, Sun Basket)*. Order in from restaurants that deliver. Eat all those goodies you have stashed away in your freezer instead of cooking.
  • Give to the less fortunate and donate items, volunteer at a food bank, hospital or soup kitchen. This will keep your mind off your own aches and pains, and alter your perspective of “unlucky”.
  • Nurture yourself by eating well, resting when needed, getting a massage, treating yourself in whatever way helps relieve stress.
  • Just say “no” if demands get out of control. You can politely decline requests by saying “Oh, I wish I could, but my health puts limitations on my energy and activities.”

First and foremost, focus on the true meaning of the holiday and less on the commercial aspects. Lastly, savor the beauty, love, traditions, music, camaraderie and joy of the season, and revel in the time you spend with family and friends.  

Observations on #MeToo and My Fibromyalgia

Stress tends to trigger the aches and pains in my body that my rheumatologist believes are due to fibromyalgia (rather than Sjogren’s Syndrome, as my labs of late have been normal). And as I wrote about just last week, mCarie Shermany beloved dog died at the end of September. It’s the most traumatic thing I’ve gone through in a long time. But I’ve been doing my best to check in with my body: Do I need to rest? Eat something? Drink water? Sleep? Cry (again and again and again)?

The funny thing is, my body has been feeling good. Even my stomach, that always seems to hurt for some reason or another, has been okay. I actually joked with my therapist last week that apparently daily grief-driven crying jags do my body good.

But I noticed something this week. Like so many, I’ve spent the week seeing #MeToo in my social media newsfeeds. And last night, I finally sat down and watched a good friend tell her (devastating) #MeToo story about being raped by a friend. In middle school.

Like so many, I have my own #MeToo story. Stories, more accurately. Watching my friend tell her story, and knowing how so many of my closest friends have had horrible experiences ranging from rape to molestation to physical and emotional abuse to aggressive sexual assault…then thinking of my own daughter and what might be in her future…

Well, within minutes, my body seized up. To the point that the physical pain brought me to tears. Given I just had my labs done the week before, I can only conclude one thing: fibro flare.

What’s Fibromyalgia?

From the Mayo Clinic:

“Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.

Women are more likely than men to have fibromyalgia. There’s no cure. And it’s a chronic condition.

A Connection?

 I developed physically earlier than many of my peers. My body may have looked like a woman’s, but I was still a child. So I hid it. I wore baggy clothes. I stopped standing up straight. I hated the attention I received because of my body.

It’s fair to say that I started hating my body around the 5th grade. Many of my friends did, too.

Now, I’ve said it before and I’ll say it again: I’m an evidence based medicine woman. And there is evidence that points to a correlation between chronic pain disorders and trauma. But how sad is it that the sexualization of young woman has become such a part of our collective story, that I never once considered my experiences as trauma. In my mind, it was all part of the experience of being a woman.

Now I’m a woman with an autoimmune disorder, IBS, and fibromyalgia. I’ve struggled with anxiety, depression, and eating disorders. Much of the work I have done in therapy has centered on my body never being good enough.

I can’t discount the instantaneous pain I felt last night watching my friend tell her #MeToo story. I can’t discount the fact my overly sensitive body has been able to handle the significant grief of losing my best buddy–yet instantly reacted to the reminder of what nearly every woman in our society has gone through.

From here on out, you can bet your bottom dollar that I’m going to pay better attention to when my pain flares. And I’m curious if anyone else has experienced something similar.