English: Angry woman. (Photo credit: Wikipedia)

“I just want to be normal.”
“Why can’t I catch a break?”
“Why doesn’t anyone understand what I’m going through?”
“Why won’t my doctors listen?”
“When will I find a treatment that helps?”

At some point, most lupus patients wind up asking themselves these kinds of questions. Lupus is a fundamentally frustrating illness. From multiple wrong diagnosis, to side-effect-filled treatments, to the day-to-day fights with friends and family over your new boundaries and abilities, anger, frustration, loneliness and depression are very common.

There are countless ways of dealing with the stressful emotions that come from everyday life with an invisible illness. Just a few include meditation, journaling, exercise, support groups, creativity, and church or other social networks. Unfortunately, there are also more destructive ways to cope such as self-harming, isolation,  and medication/substance abuse. Some people seek to squash their feelings and “put on a strong face”, while others will vent their problems to anyone within earshot.

I never liked feeling angry. As a child, when I got angry enough I would lash out, tearing my hair, smashing toys and raising holy hell all over the place. I pulled out a tooth one time in a fit of anger, a clumps of hair another time. It took years for me to learn to dial that back and handle anger in other ways – and that was before I was diagnosed with lupus. Once I started dealing with doctors and endless blood tests and the paradox of looking healthy while being anything but, I had to learn all over again how to deal with anger.

Angry?

In my opinion, feeling angry is okay – it’s what you do with that feeling that makes all the difference.

How do you feel when you’re angry? Do flash and flare, snapping or screaming, and lashing out? Or do you get quiet, and feel a slow burn? Either way, chances are that you feel similar physical symptoms of anger: clenching your jaw, grinding your teeth, tense muscles, headaches, faster breathing, and increased heart rate. Your thoughts might race faster, you might start to sweat – your body is getting ready for a fight. If that energy can be channeled into a useful place, you can harness that energy to better fight your lupus.

Below are a few suggestions that I’ve come to use over the years to help me better use my anger as a motivating force instead of a stressful one:

• Find what you can control. Obviously, there are aspects of life that you can not change, no matter how you might wish and want to – forget those and focus on what you can do in the moment.
• Arm yourself. Knowledge is power. If you’re angry about a diagnosis, then research it online and find out more. If you’re angry about a medication’s side effects, study up on alternatives. Feeling helpless is a big contributor to feeling angry, so combat helplessness by arming yourself with information. Avoid information overload, by focusing on one small topic at a time. For example, instead of trying to read everything about lupus, focus on the symptom that bothers you most and ways to combat it. Pick just one suggestion to try for a week.
• Be your own advocate. This goes hand-in-hand with arming yourself. It’s easy to become passive and let your doctor call all the shots – even if you feel differently about their choices. Doctor’s are people too, meaning that they may have their own agendas, biases and flaws. If you don’t agree with your treatment, get alternate opinions. If your symptoms are still interfering with your life, speak up. This also goes for the home front. If you need to change the way your home life works for your health, then speak up to your loved ones. Mad at the lack of support in your neighborhood? Write a letter to your local government officials or hospital center, demanding action.
• Avoid wasting energy. Wasting your energy basically means doing anything with your anger that doesn’t serve a purpose. While you think venting might help you feel better, you might actually just be fueling a cycle that gets you angrier with no resolution. The same goes for screaming or punching walls. They’re actions that you might think help, but leave you right in the same spot. When you find yourself tempted to spend 20 minutes online venting and griping, instead use that time to research a more constructive course of action.
• Be “selfish”. Another source of anger is the feeling that nobody is considering your needs – and you might be right. If you feel walked over by demanding friends and family, channel that energy into action. Write a list of demands or a letter spelling out how you feel, how your illness has changed and how your needs are different. Ask yourself: what’s worse; losing a few friends who apparently don’t care about your health or losing your health for a few friends? Which of the two will last you longer? Whose life are you living anyway?
• Walk away when necessary. If you’ve hit a wall, then walk away. Don’t feed your anger by repeating the incident over and over again in your head. Acceptance is not the same as surrender or defeat. Remind yourself that circumstances can change the next hour, the next day or in the next year. The physical toll on your body is not worth whatever situation caused it. Get out if you can, collect your thoughts, save your energy and tackle the problem again when you’re ready.

Of course, this is all easier said than done, and if you have genuine anger issues, professional help should be considered. But, for the rest of us, it might be worthwhile, when you find yourself brooding over a crappy situation, to ask yourself what you could be doing about it, instead of spinning on a wheel and raising your blood pressure.

Do you find anger useful? What other ways of coping with anger do you have? Don’t forget to subscribe to get new posts by email!

*Hospital Prices No Longer a Secret – Huffington Post

*See how your hospital stacked up by downloading the CMS’ 2011 report here

Hydroxychloroquine under scrutiny for cardiac neonatal lupus prevention – OBGYN News.com

7 Apps for Lupies – Laptop Mag

Lupus Initiative Offers Free Education Materials – Yahoo!

And lastly, a news release sent to me by the wonderful people at Lupus Research Institute regarding where they currently stand on innovating lupus research and treatment:

Lupus Research Institute Tops $170 Million for Novel Research in Lupus Unsurpassed Support Produces Breakthrough Discoveries Changing Patients’ Lives

NEW YORK, NY – May 1.  The Lupus Research Institute (LRI) announces a new $170 million milestone — delivering unprecedented novel research funding and unprecedented research results — changing the lives of lupus patients.  A new analysis of completed LRI Novel Research grants demonstrates an 84 percent success rate as scientists prove cutting-edge hypotheses, publish results and win extended federal funding to advance original discoveries to clinical development.

“Over the last decade, the LRI produced many of the pivotal discoveries in lupus and autoimmunity,” said William Paul, MD, chair of the LRI Scientific Advisory Board. “The LRI’s approach effectively advances novel concepts to be furthered by subsequent large-scale funding from the National Institutes of Health (NIH), and to expand the possibilities for new drug development that can help patients.”

LRI-funded investigators are answering bold new questions and letting this science lead the way to how lupus is diagnosed, monitored and treated as well as how it will be cured with breakthroughs in:
•       Predicting flare. Two new lab tests to predict lupus flare. By detecting the earliest signs of an upsurge in disease activity the tests are designed to improve disease management and accelerate the testing of new drugs in clinical trials. Researchers: Mary K. Crow, MD and Emily Baechler Gillespie, PhD
•       Predicting heart risk. For the first time clinical research showed that a blood test for homocysteine identifies lupus patients most at risk for cardiovascular disease. Doctors now use the test to guide preventative treatment and reduce the chance of life-threatening cardiac events. Researcher:Joan Von Feldt, MD
•       Discovering how lupus attacks the brain. Researchers uncovered how the lupus immune system attacks the central nervous system (CNS), leading to current work on a new targeted treatment for neurological and psychological complications of lupus. Researcher: Betty Diamond, MD
•       Discovering how lupus harms the heart.  A chemically altered form of ‘good’ cholesterol was found to contribute to circulatory system damage in lupus. This discovery led to new ways to identify and treat patients at risk of heart disease. Researcher: Bevra Hahn, MD
•       Transforming kidney diagnosis. Researchers devised new non-invasive tests to diagnose and guide treatment of lupus kidney disease as alternatives to surgical kidney biopsies. Researchers: Chandra Mohan, MD, PhD;Chaim Putterman, MD; Joshua Thurman, MD
•       Discovering new genes. Genetic breakthroughs uncovered new culprits in lupus – the Toll-like receptors. Drugs that inhibit these proteins are soon to be tested in lupus patients. Researchers: Silvia Bolland, PhD and Ian R. Rifkin, MD, PhD
•       Smarter drug delivery. Using innovative nanotechnology to deliver drug doses directly to disease-causing cells promises to make existing lupus treatments safer and more effective. Researcher: Tarek Fahmy, PhD

Results like these take both private and public funding. Of every dollar contributed to the LRI, 95 cents goes directly to its research programs, and every one of these dollars has multiplied more than four-fold. Over the past 12 years, the LRI has awarded and funded 140 innovative research grants. That investment of $40 million has turned into more than $170 million as LRI researchers won unmatched levels of follow-on funding from the NIH and other sources to extend the development of their innovative work.

“This Lupus Awareness Month, we spotlight our scientists’ success because it is their talent, creativity and insight that is turning patients’ hope into reality,” said Margaret Dowd, President and CEO.  “This is a time to recognize and celebrate the power of scientific innovation as the clear path to transforming the outcomes for lupus and autoimmune disease.”

About Lupus
Lupus is a chronic, complex and prevalent autoimmune disease that affects more than 1.5-million Americans. In lupus, the immune system, which is designed to protect against infection, creates antibodies that attack the body’s own tissues and organs.

About the Lupus Research Institute
The Lupus Research Institute (LRI), the world’s leading private supporter of innovative research, pioneers discovery and champions scientific creativity to find solutions to lupus. The LRI’s advocacy arm is its National Patient Coalition, a powerful network of state and local lupus organizations united to prevent, treat and cure lupus by advocating for lupus on Capitol Hill.

Taking Vitamin D? It might not be enough. – Healio.com

New research says lupus drugs during pregnancy are okay – MedPageToday.com

And finally….May is Lupus Awareness Month! Visit the LFA’s website for activities in your area and free web icons and graphics to help spread lupus awareness.

Too much ‘alone time’? Joining a group can help motivate positive changes. (Photo credit: WarzauWynn)

When I was first diagnosed with lupus, my mother pressured me to join a support group. To her, it made perfect sense; since she couldn’t understand what was happening to me, I should seek out others who were going through the same thing. From them, I could avoid feeling alone, learn about lupus and better cope with this huge change in my life. I’m not a very social person by nature, but I agreed that a support group might help me find smart ways to make my lupus as livable as possible, so I tried a few different ones.

The experiences varied, but in the end I found that, for myself, support groups did not help me cope better with my lupus – in fact, I often left meetings or message boards feeling even more helpless, depressed and bitter about the world in general. I’ve been support-group- free for over 5 years now and I have to say that I don’t miss them. Obviously, this is only my experience, not a rule, but even Psychology Today finds a thin line between what can make a support group helpful or harmful (yes, I’m aware that the article is aimed at groups for mothers, but I think the idea can apply to any support group).

Is a Support Group Right For You?

Support groups exist for all ages. (Photo credit: Wikipedia)

A good support group can be extremely helpful – it gives a person a safe environment to express feelings that they might not have any other place to, connects them with others in the same situations, provides a place to exchange helpful information and resources and, most importantly, can prove that you are not alone. It can even be enjoyable, given the right mix of people and the particular structure of the group. But it’s important to keep a balanced perspective of what support groups are, what they can do and, ultimately, if they will be helpful to you as an individual.

If you’re considering joining a support group, here are a few questions to ask yourself:

• Why do I want (or think I should) join a group? Do I want to meet others like me? Am I getting no support from friends and family?
• What should I get from a group? Do I want ideas to try? Do I just want someone to vent to? Do I need help and resources? Do I want to go to events or do group projects?
• Do I like being around groups of people? (Obviously, if you’re an introvert then a group setting might not work best for you.)
• What would my ideal group look and act like? How would the atmosphere and environment feel?
• Would I prefer a peer-led group or a group led by a lupus authority – a more casual structure or something with a plan and a goal?

These questions can help give you an idea of what kind of groups might be most helpful for where you are in your personal health journey.

What are the options? (Online, In-Person, Peer-led, Structured, Self-Help)

There are tons of different types of groups and programs that offer support and information. Some are informal and relaxed – a group that gathers once a week at a cafe or diner to just catch up, for example. Peer-led support groups can also fall into this category. Some are full-fledged programs that are structured, such as the one I teach; the Stamford Model Chronic Disease Self-Management Program. This program is a 6-week interactive class that teaches those with any chronic illness pro-active ways to better care for themselves. Many of the participants I’ve taught have continued to keep in touch with each other after the end of the class, organizing their own meetings to motivate each other to continue what they’ve learned. A good place to check for more structured  types of programs and groups are national medical associations such as the Lupus Foundation of America or the National Arthritis Foundation – their local chapters might have meetings right in your area. Can’t find a meeting? You can always get the ball rolling and start your own using, reaching out to your area through local newspapers, word of mouth, church groups or online platforms such as Meetup.com or Google +.

For those who aren’t too keen on a group setting or really have nothing in their area, there’s always the internet. There are tons of message boards, online communities, blogs, videos, and groups. Whatever social media platform is your current favorite, there’s sure to be people on there already talking about whatever ails you, so don’t forget your good old-fashioned keyword searches for topics such as #lupus, or lupus groups to find others like you.

Another great place to start is over on my Lupus Resources page. And you can always connect with me personally via Twitter or Google +.

Red Flags

How can you tell if a support group is toxic? Here are a few suggestions from my experience:

• Drama
• If you feel worse or more depressed after time spent with the group
• If the group encourages or increases isolation from family and/or friends
• Quick, judgmental behavior instead of balanced consideration
• Open approval of anything instead of balanced consideration
• “Us vs Them” mentality
• One person or mini-group dominates sessions
• “Doom and gloom” mentality – There’s a difference between venting and wallowing. Wallowing does not help.
• If the group discourages you from making healthy changes (either openly or in more “well I don’t think that helps” kind of ways)

Are there any other red flags that you can add to the list? What have been your experiences with support groups? Have you subscribed to my blog to get new posts and other goodies by email?

Kidney disease in lupus not the same as lupus nephritis – Arthritis Research & Therapy

Are nanogels the future of lupus treatment? – R&D Magazine

Takeda Pharmaceutical Company (TKPYY) and Resolve Therapeutics throw their hats into the lupus-treatment ring – Yahoo!

Click to visit Ania’s Blog

One of the biggest hurdles to the treatment of chronic illnesses such as lupus, is the fact that the physical symptoms for lupus can also be the symptoms for arthritis, MS, fibromyalgia or a host of other diseases. So while today’s Awesome Person is not a lupus patient, she’s a sister in dealing with chronic ickyness.

Name: Ania Bula
Age: 25
Born: Saskatoon, Saskatchewan
Now Living: Ottawa, Ontario

1) Now I understand that you don’t have lupus, but that you have Crohn’s disease and arthritis. What symptoms led up to your diagnosis?
In the case of the arthritis, it was a sharp sudden pain in my back that made it impossible to walk. It only lasted a weekend, but ended up with me getting a CT scan that showed swelling in the SI joint. More interesting in terms of the arthritis was what it took to get the doctors to realize that I needed more aggressive treatment. It took a year of pain, that ended up with me being unable to walk.

With the Crohn’s: I lost 60 lbs in about 2 months, stopped being able to keep food down, severe abdominal pain and ended up with a fistula that had to be surgically operated on.

2) What have been the main day-to-day symptoms that you’ve experienced?
Pain and nausea are pretty frequent visitors, not to mention exhaustion. Some days, I can’t even smell food without having to lie down and hope that I won’t throw up.

3) I understand that you’re in the process of writing a book about your experiences being diagnosed and some of the various treatments you’ve tried – can you tell us more about it?
I went through an incredible process of trying to get treated. I went through a year of having to use a case to drag myself from place to place. I felt as though my leg was going to shatter beneath me. Despite the state I was in, doctors basically ignored me for a year until finally I had to give up and go back to my parents’ place. With the Crohn’s it has been a real process to try and get into remission. I recently had to quit my job because I couldn’t keep up the energy for it.

There are a unique set of challenges that you face when you have an invisible disability. There isn’t something obvious that you can point to to help explain some of the things you have to do for your health. People have a hard time understanding why you cannot go to as many of their events as you would like.

I am hoping for two things with this book:
The first is that I am hoping to give people without disabilities some insight into what their friends and family might be going through. Perhaps some clues into why some things happen. Along the same lines, I want to give people with those disabilities a clear idea that they are not alone. That, although the specifics might differ, that there are other people out there who know what it is like to have to face down exhaustion, pain, etc.

The second goal is to give a face to the victims of alternative treatment. When we talk about how they are “taking advantage” of sick people, we do so very academically, but there is always some sense of disdain for the people who get roped into these treatments. A feeling of, they should have known better. I want to show just how much severe pain can affect your ability to think. How desperation sometimes overrides skepticism and good judgement.

The actual book itself will be a retelling of my story and experiences, of what I went through, interspersed with observations and lessons that came out of the whole process.

4) As a lupus patient, I’ve had my fair share of weird “treatment” options – what were some of your most memorable ones?
I want to leave some surprises for the book, but I can mention 2 that stick out in my mind.
The first is the faith healer who was basically coping a feel in front of my mother, while praying fervently for me to be healed. I was almost in more pain from trying not to laugh.

The second is a friend who suggested that drinking green water would help me keep my Crohn’s symptoms under control. It looks and tastes like swamp water, and ended up with me spending the night in the washroom being sick as a dog.

5) Were there any positive experiences you can mention?
There were lots actually. It is easy to forget the good aspects of going through something like this. One of the most positive experiences was learning the strength I am capable of and also learning that there are legitimately good people in this world.

When I was in the hospital one of the first time’s going in, I had a very kind and knowledgeable nurse who pulled me aside and showed me exactly what was going on. She was the only one to give me an answer and it kept me going in later times.

Once, during a flare, I was throwing up at an intersection. When I woman pulled over, I thought she was going to yell at me (which sometimes happens) but instead she was actually just concerned and wanted to know if I needed help or if she should call an ambulance. I was very touched that she went out of her way to help me.

6) What do you see as the biggest problem for patients looking for treatments or alternatives to the sometimes harsh side effects of medication?
I think one of the biggest problems is lack of education and a fear of mainstream science.  We are constantly bombarded with horror stories about big pharma, and then in swoop in these con artists that use words like “natural” and trick people into believing them. The truth is that while yes, pharmaceutical companies are out to make a buck, they are also doing legitimate research. They have a lot of standards in place to make sure medicine you are getting is safe and effective. Regulations that don’t apply to alternative med providers, who in reality are much greedier than pharmaceutical companies could ever be.

Side effects can be terrible – I remember my own experiences with chemotherapy for example – but the medicine provided has been tested and shown to work. We need to rebuild trust in science and evidence, to help patients make the right decisions for their treatment. We also need people to become aware that something that has the key word “natural” or “traditional” is neither guaranteed  safe nor effective. Critical thinking in treatment is key.

We also need to help patients learn about self-advocacy. That was a difficult process for me to learn as well. If your side effects are really bad, you have a right to talk to your doctor and see about changing treatments or dosage. Doctors also have access to information on how to help mitigate side effects, but they don’t know to help you with that unless they know you have those symptoms. What your doctor doesn’t know about, he can’t help you with.

7) What last bit of advice do you have for other people with chronic illnesses?
Don’t be afraid to talk about it with others and don’t be afraid to do your own research. Become an expert about your condition, because ultimately you know yourself more than anyone else. If you know what sets off symptoms,  if you know which chemicals you react to well or badly, you can have a more active role in helping chose your treatment and care. If your doctor doesn’t listen to you, change doctors! Don’t put up with substandard care. If you can’t change doctors, come back at them with evidence. Bring in studies that support what you say. Also, if you find information about interesting clinical trials or research done, share it with your doctor. They might not have heard of it, or they might be able to get you more information about it.

As for talking about your chronic conditions, it can be difficult. We all have a reflex towards privacy, but sometimes that reflex can be damaging. Our family and friends don’t know and can’t know what we are going through unless we tell them. Sometimes a conversation can mean the difference between having to put up with frustrating behavior and understanding.

Note: Ania is running a crowdfunding campaign to help fund her book Young, Sick and Invisible: A Skeptic’s Journey With Chronic Illness. You can donate by visiting her funding page at Indiegogo.com. The last day to donate is March 19, so don’t delay! After the 19th, you can still donate through her blog.

Past Awesome People With Lupus:

Geoff Thomas – Photographer, Writer and Publisher

FREEK-A-RELLA – Roller derby gal extraordinaire

Happy new year (Photo credit: Amodiovalerio Verde)

It’s been a busy few weeks. My 31st birthday tripped by back on Feb. 15th, but even before then I was thinking, thinking and rethinking my current position in life and where I would like to be. Then I surprised myself (and certainly my mother) by spontaneously going on a 3 week jaunt with my dad to his birthplace in Puerto Rico as well as his current stomping grounds in Florida with no plans and a slow-healing stress fracture.

Birthdays have the same effect for me as New Year – and if you want to get technical, each birthday you celebrate is a New Year. It’s the start of your very own, personal new year of life. So, as I stuffed my face with mazamorra and corazones (yum) in the streets of Aguadilla (as well as Moca, the mountains of Aguada and as far as Ponce), I had plenty of time to think about how I want my 2013 to shape up.

In short, I want it to be awesome. And I want every one of us with lupus or any other auto-immune illness to quit settling for bare survival and commit to awesome as well.

I’m working on hammering together some specific ideas about where my life could use more awesome – and I want to hear what you think as well. Are you sick and tired of being sick and tired? Are you fed up with scraping through every day?

Lupus limits us enough as it is. But I don’t think it’s our biggest enemy.

Convention is the enemy. The little voice that tells you to stop dreaming, and start settling because you’re a broken human being and shouldn’t expect much. The voice that tells you to be afraid of everything. I know I’m sick of hearing it – what about you?

Society is not built to support you. One thing I have learned in my 12+ years with lupus (not to mention my now 30+ years with all my other health problems) is that all the conventional things that I was raised to expect… haven’t worked out. Sure I went to college…and barely made it out, memorably nearly fainting on my way to get my diploma because our graduation was outside under the sun (in our black robes no less) on a really hot day. Oh and my robe was 2 sizes too big because I was home getting a kidney biopsy instead of being at the college on time to pick one in the right size – my roommate had to get it for me. I worked a 9-to-5 desk job…right up until my kidneys took a nose dive and my lupus flared up so badly that I was on cytoxan for a 18 months and could barely walk. So yeah…me and those rules have not been best buddies. So think about it…is playing by “the rules” really working out well for you? Or is it actually harming you?

(Photo credit: marsmet551)

What do I think is the solution? Don’t play by those rules. Yeah, I know, it’s much easier said than done, but I think it’s worth exploring and I hope that you’ll decide to explore with me. After all, you have a fair idea of what will happen if you go about your routine tomorrow (excepting sudden zombie apocalypse, of course)….but what will happen if you decide to change the game and start living differently?

I’ve added a butt-load (which, if you measure by my butt, is quite a load) of new websites to my links page. More and more, people in general are wanting more meaningful experiences from their lives and are looking to create more than the cycle of rise, work, and sleep. While I think this a great movement in general, for those of us with health problems, breaking free is really something worth looking hard at. After all, we have higher hurdles and a tighter deadline. However, this can also translate into more motivation.

I’d love to hear from you readers. Comment below, drop me a line on Twitter or Google + (+Ro), or email me (I will totally leave your name out of it if you like) and tell me what’s on your mind.

Think about your symptoms and ask yourself a few of these questions:

• Which bothers you more: a sunny, cold winter day, or a sunny, warm summer day?
• Does cold air make breathing more difficult or make your joints hurt more?
• Do heavy, wet summer days make breathing difficult?
• Do your joints feel more tender during summer storms?

If you notice more daily symptoms during the winter, overly dry air might by a secret lupus trigger. Likewise, if, like me, heat and humidity knock you flat, then summer may be your time to exercise a little more caution.

Dry, winter air can trigger your muscles to contract and tighten for warmth – which could lead to achier muscles, and joints. Humid and hot air can make inflamed joints feel even more tender and sore. Summer heat can also cause more dehydration – the symptoms of which can easily get lost among a lupie’s other symptoms. Finally, as much as you might love snow and water, keep in mind that both reflect sunlight and UV rays – even on cloudy days. So watch that hidden sun exposure!

First, the good news:

Study in Spain shows good results for new cutaneous lupus patients

Study in China announces good findings for new alternative to cytoxan treatments

NIAMS giving away free 2013 health planners

Vitamin D may improve lupus symptoms

Now some not-so-good news:

Steroids and age may make lupus damage worse over time

Can a vaccine cause lupus?

I’ve jumped on the Twitter band wagon. If you have a Twitter handle, let me know so I can check you out. I’ll be over at @Rogue_Muse.