Pain Connects

My dog died last week. He was just shy of his 13th birthday. He was not just my best friend. He was my constant companion.

Farley was next to me when I was a young newly-wed. He was with me throughout my pregnancy, and then with my newborn. He was with me when I got sick with what I now know is Sjogren’s Syndrome. He was with me every single day, when I woke up in the morning, tripped over the dog while making coffee, fed the dog, let the dog out, told the dog to stop barking, scolded him for waking up my now seven-year-old, snuggled with the dog while daughter ate breakfast, scolded daughter for leaving breakfast on the coffee table, scolded dog for eating said breakfast, walked the daughter out the door to school, then walked myself and the dog.

Whether I was feeling good and up in my office working, or feeling sick and laying on the couch, he was with me. And now he was gone.

I had never felt so alone. 

There was only one thing that truly helped me during this time. And I’m still kinda shocked that it helped as much as it did.

I posted about it on my personal Facebook page. I admitted how much pain was flowing through me. I shared things I didn’t know were swirling in my head.

My admission of pain was met with nothing but kindness. Nearly all who reached out had experienced the loss of a treasured pet. From messages of commiseration to messages of hope, from funny memories to spiritual comfort, the people who I’ve let into my life over the years gave me something I felt void of: Hope.

I share this story with you now for one reason: If you’re struggling with a medical diagnosis like lupus, don’t keep it all in. Your life has been forever changed. And in addition to the physical discomfort you’re experiencing, there’s a whole ‘nother mental component of chronic illness that, until you’re in the throes of it, you wouldn’t consider.

Like the death of my faithful companion, being diagnosed with an incurable chronic illness forever changes your routines. Life as you knew it ceases to exist. And you face a new reality that’s scary, painful, and debilitating.

I remember feeling so misunderstood when I first got sick. Then I found a community with Lupus Colorado. I also found a community of “spoonies” on social media. The connections were invaluable. But I’d forgotten just how much this community of understanding helped me through this tough time.

The pain of losing my best bud reminded me of just how many of us are in pain. And just how much our pain connects us, and how with connection, pain lessens.

I didn’t allow myself to grieve when I got sick. I made a significant effort to put on a show, shouting, Alls Well to anyone listening. I didn’t want people to see my weaknesses.

But that was six years ago. And since then, I’ve consistently learned that there’s strength in admitting your pain. You give others a chance to be of service, to help you get through a tough time. And most of all, you show others that it’s okay to share their pain, too.

To have a disease like lupus means living with pain. Don’t go it alone.

Denver! This Will Make You Rethink Your Plans for Saturday, Sept. 16

In my experience, people fall into two categories: 1) Every moment of every day is planned, planned, planned, or 2) Plans are the devil and commitment cannot be forced. Whatever category you fall into, after reading this post, you’re going to put the Lupus Colorado Community Walk (AKA, the chillest charity event ev-ah) on your calendar.

7 Reasons You’re Gonna Looove This Walk

  1. You’ll get your steps for the day. But you don’t even have to break a sweat if you don’t want to. The main walk is just half a mile with an alt route of ¼ mile, a deliberate choice. Grandma, the kids, and many of us with autoimmune disease are big fans of such low-key walks. Plus, not being totally out of breath and not competing with the fittest of the fit means it’s easier to chat. Being Outdoors + Moving Your Body + Gabbing with Someone You Love = A Win, Win, For Your Health!
  2. No dealing with your dog or others. I love dogs. I have a giant, sloppy kissing, bad breath having beast on my bed most nights. But crowds with packs of canines are a stressor I just can’t handle. I mean, I get it: Before I was self-employed, I felt so guilty leaving Farley alone. On my days off, I took him everywhere (despite his tendency to hate on 10 percent of the canine population, with no discernable reason as to why). It was stressful for us both. I’m guessing it’s stressful for some of you, too. Now you have an excuse! Saying “sorry buddy, you’re not invited to this one” while making boo-boo/kissy faces through the closing door may feel bad for the moment, but inevitably you’ll feel pretty darn good. I look forward to NOT having my mutt drag me around. And I look forward to NOT tripping over someone else’s buddy on a retractable leash.
  3. Shade all the way baby. Prospect Park in Wheat Ridge was chosen for one reason: It’s mostly shaded. If you were here for the eclipse, how grand was it to sit under a dimmed sun and enjoy being outside mid day without feeling scorched? This Colorado sun…am I right? Intense. September shade shall feel so good.
  4. Ample parking, day or night. I lied in #3. Prospect Park in Wheat Ridge was chosen for two reasons: Shade and it’s not a pain in the you-know-what to park.
  5. The timing is just right. This is a great event for those of us with kids. Scheduled from 4:00 p.m., with the walk starting at 5:30 and wrapping soon after, it totally fills up that awkward meltdown time (too late for naps; too early for bed). Plus there are food trucks, so dinner is done. My daughter and her buddy had a blast last year. She remembers it as “that time Mom let me get seconds of (free) cotton candy.” She’s already making plans for face painting. Last year she barely had to wait in line, which all you parents know is a small miracle. 
  6. It doesn’t even matter if you don’t know what lupus is. A part of me is glad you don’t! I didn’t really know what lupus was until my rheumatologist handed me a post-it note seven years ago with the handwritten words “systemic lupus erythematosus.” Sure, I’d heard of the word: House joked about it. And then there was the pale kid called Lupus on the hilarious but wildly inappropriate 70s masterpiece The Bad News Bears. So here’s what you need to know: Lupus can be really isolating. It’s a life-changing, life-long diagnosis. It’s a mind-*(&% that makes you question your own identity and sometimes, sanity. By showing up at the walk, you’ll be helping a lot of people who feel invisible, feel seen.
  7. You’re helping your neighbors. When you raise money for national organizations, you might not know where your hard-earned dollars are going. With this walk, they stay here. In Colorado. And even if you’ve never heard of lupus (see #6), you probably know someone with lupus. Many people never talk about it, for fear of reprisal at work, or the shame of being sick, or the fear of appearing weak. Autoimmune disease is on the rise. One in 13 people have autoimmune disorders like lupus. And if we’re able to figure out lupus, it’s systemic nature will give us tons of clues for pretty much any disease state out there, including cancer.

Come on out on Saturday, Sept. 16 and join the fun. I know you want to, you good-doing, fan-of-all-things-simple-and-fun, you!


The Clinical Trial Dilemma

by Guest Blogger Sandra Kanowitz

Yes, No, Maybe?

As patients with a chronic illness, we all might be invited at some time to join a clinical trial. Such an invitation can raise many questions, and requires some serious deliberation on our parts before making a commitment. Knowledge of the basic workings of clinical trials is a must to start with, but since trials come in a wide variety of styles, getting to know the particulars of a specific trial is crucial. There are lots of good reasons for joining a trial, and we must examine our own motive for doing so, and be realistic about our ability to carry through our commitment and obligations over time.

I recently finished participating in the Lupus Outcome Study sponsored by the University of California at San Francisco Rheumatology Department. It was designed to measure the impact of having lupus over a 20 year period on a patient’s physical, mental and social well-being. The trial consisted of a 45 minute telephone interview once yearly, answering many questions about symptoms, treatment, social interactions and mental health. I looked forward to my yearly interview (on the couch), reporting my current state of health. It was rewarding to know that my responses were part of a consortium of other patients’ responses about how lupus had affected them over a long time period. I felt proud of the principal investigator for taking on such a lengthy, monumental task, with concerns of lifestyle impact, not just medical management of lupus. I would imagine the results could be extrapolated to many other similar chronic illnesses as well. It felt good to provide information that may help others in the future.

With the focus on evidence-based medical management, research is the cornerstone for future treatment protocols of lupus and most other illnesses. Research must be disciplined, is demanding, and is very time consuming and expensive to conduct. The participants are critical team members, part of the scientific community trying to prove a hypothesis, answer a question, solve a serious problem. We must enter any commitment we make to a clinical trial with the utmost respect, good intentions, and follow the protocols judiciously. We cannot “fizzle out” and jeopardize the data. It is essential to know all that is expected before entering a trial, both the risks and benefits, costs, travel requirements, length of time involved, how results will be handled and published, etc. I would encourage anyone to participate in a clinical trial that might benefit you or others in a similar situation. Only you can decide if the terms of the trial are compatible with your lifestyle, time constraints and constitution.

For Most Lupus Patients, One Diagnosis May Not Cover it All

Lupus is a systemic disease, meaning it does not discriminate when looking for areas of your body to attack. But many people don’t know that people with lupus also suffer from a number of “overlap” diseases. In my case, a common “overlap” disease ended up being my primary diagnosis (meaning that I never quite met all the criteria for the lupus diagnosis; my symptoms and blood work over the last six years have revealed that I have primary Sjogren’s Syndrome rather than lupus).

Common Overlap DiseasesCarie Sherman

Sjogren’s Syndrome. It’s easy for me to start there because this is what I have. Sjogren’s makes your moisture-producing glands malfunction, causing dry eyes, dry mouth, and dry mucous membranes (yup, pretty much anyplace you need moisture is lacking, good times). The fun doesn’t stop here though, folks! Along with these fun symptoms comes joint/muscle pain, fevers, and fatigue. My taste buds have been impacted–the love of my life (FOOD) isn’t all that enjoyable as I can barely taste anything that isn’t super sweet. I have chronic sinus issues and lately I think it’s been affecting my hearing and my ability to stay hydrated. Like lupus, organ damage can also occur, which is why I’m monitored every three months. Learn more. 

Raynaud’s Disease. One-third of people with lupus get this, too. Raynaud’s affects the cardiovascular system, restricting the flow of blood to your feet and hands when you’re stressed or it’s cold. Typically, the tips of your fingers turn white, blue/purple, or red. I’ve heard it can be painful and cause tingling and numbness as well.

Scleroderma. Scleroderma causes the skin and body’s connective tissues (i.e., the tissues that connect, support, bind, and separate our other tissues and organs) to harden. Like lupus, it can range from mild to severe. For some, it only impacts the skin, but it can also impact your organs, blood vessels, and digestive system. 

Rheumatoid Arthritis (RA). Like lupus, RA causes the immune system to attack the body’s own tissues. In RA, the thin membrane that lines the joints, called the synovium, is attacked. It causes a build-up of fluid in the joints as well as inflammation throughout the body. Also like lupus, it’s systemic, which means it causes fatigue,fevers, and pain.

Antiphospholipid Syndrome (APS). Here’s another fun one. APS is a blood disorder. It causes blood clots. Many women discover they have APS only after experiencing miscarriages or stroke. I have antiphospholipid antibodies in my blood. Since I haven’t had any blood clots, my doctor has me take a baby aspirin every day to keep my blood thin. Those who have APS may require much stronger blood thinners, and those with APS who become pregnant must be heavily monitored.    

These are some of the most common diseases people with lupus ALSO have. Just for kicks and giggles, here are some more:

  • Autoimmune thyroid disease
  • Celiac disease
  • Myasthenia gravis
  • Polymyositis
  • Dermatomyositis
  • Vasculitis
  • Thrombocytopenia
  • Anemia
  • Mixed connective tissue disease
  • Peripheral neuropathy

And some other conditions a lot of people with lupus have:

  • Depression
  • Anxiety
  • Fibromyalgia

And some of the diseases a lupus patient might be incorrectly diagnosed with:

  • Rosacea/psoriasis and other skin diseases
  • Lyme disease
  • Fifth disease
  • Multiple sclerosis

So after six years of working closely with my rheumatologist, I’m only now starting to understand just how difficult it is to diagnose people with autoimmune disorders. In addition to so much overlap and misdiagnosis, no two lupus cases are the same–other than being chronic and often debilitating.

You can help Lupus Colorado support patients living with lupus on Saturday, September 16, 2017 from 4:00pm – 7:00pm at the 2017 Lupus Colorado Community Walk. Learn more!