6 posts tagged “spotlighted blogger”

“Sleep has become a process.” Checking in with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori

Posted November 11th, 2013 by

Some of you probably remember seeing her on the PatientsLikeMe blog before. Lori is living with idiopathic pulmonary fibrosis, and when we first chatted with her last July, she shared her experiences with blogging, the difficulty in finding the right diagnosis and how connecting with others has positively impacted her life. For our “Are You Sleeping?” initiative, the PatientsLikeMe community is taking a closer look at how sleep impacts our health, but also how our health affects sleep. Check out what Lori has to say about it in our follow-up interview with her.

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Don’t forget to check out Lori’s blog too, called Reality Gasps. She balances stories of her daily struggles with dashes of humor that can make anyone laugh.

How have you been doing since the last time we talked? It looks like you said on your blog that you broke an ankle?!  

I did break my ankle and had to have surgery to put in a plate and 8 screws! I had refilled the bubbler on my concentrator and didn’t realize I hadn’t screwed it back on just right. As a result, I wasn’t getting enough oxygen and when I stood up, my sats dropped quickly.  I collapsed and must have twisted my ankle, dislocating it and breaking the tibia in the process.  Surgery was quite an adventure. Because of my IPF, I can’t go under sedation, so I had a spinal and was awake for the whole thing.  I have three weeks left in the cast, and then I’ll move to a boot. I’m basically chair-bound right now, so I am eager to get mobile again!

We’ve been talking a lot about sleep on PatientsLikeMe lately. What are your sleeping problems like? Have you been officially diagnosed with insomnia?

I don’t have an official diagnosis of insomnia, but it is definitely a side-effect of my medication. I am on prednisone, which can cause insomnia at higher doses. I was just getting over an infection when I broke my ankle, so I was on a higher than usual dose of prednisone.

In addition to periodically having troubling getting to sleep, I also have periods where I wake up several times during the night because my O2 sats drop. Everyone breathes more shallowly when they sleep, and if I am having a flare or an episode, this can be a particular problem for me at night. Since changes in weather can affect my breathing, I’ve been having more trouble during the past few weeks.

When I do wake up at night, I check my sats immediately. If they’re low, I do some deep breathing to bring them up and can usually drift back off to sleep. Though, I have unintentionally started my day at 4:30 or 5:00 in the morning more than a few times!

How do you think lack of sleep impacts life with IPF? Or is it the other way around for you, that IPF affects how well you sleep. Maybe both?

I think sleep and IPF are definitely intertwined for me. To make it easier to breathe, I sleep with my head elevated. I was never a “back” sleeper, so I’ve had to get used to a whole new position. It still doesn’t quite feel “natural” to me, and it becomes one more thing to obsess about on those nights when I just can’t fall asleep. And as I’ve mentioned, medication and O2 levels affect my sleep as well.

When I can’t sleep, I get sluggish, both mentally and physically. Mental fog is especially dangerous because I need to be aware of how my body feels at all times. If I am moving and my oxygen supply cuts out or is reduced, I collapse within seconds. That’s how I broke my ankle. More directly, I notice that I cough more and my chest generally feels tighter if I am fatigued. Plus, when I am tired, it’s hard to get up the energy to keep moving. And one thing I’ve learned is that remaining active is a key factor in fighting IPF.

You mentioned that you take Ambien sometimes, but that it might not work if you’re on other medications too. Can you tell us about that? 

I take a low dose of Ambien, which usually is just enough to let me drift off to sleep. But, when I am on higher doses of prednisone, Ambien often won’t cut it. My doctor gave me a dosage range of 5-10 mg so I could adjust for those situations. But I’ve found that when I take 10 mg, I wake up feeling really groggy and that feeling lasts for several hours. I also worry about taking too much sleeping medication because I don’t want to subdue my nighttime breathing too much. I’ve started using relaxation techniques in addition to the Ambien, and this seems to be helping.

I still long for those days, though, when my bedroom was quiet (no huff-chuffing machines) and I could flip onto my belly and just snuggle down for a lovely snooze! Like everything else with my disease, sleep has become a process.


“Retooling my attitude.” An interview with idiopathic pulmonary fibrosis patient & PatientsLikeMe member Lori

Posted July 7th, 2013 by

As part of our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Lori, an idiopathic pulmonary fibrosis (IPF) patient who started blogging about her journey back in October 2011. Her blog is called Reality Gasps and she balances stories of her daily struggles with dashes of humor that can make anyone smile. If Lori sounds familiar to some of you, it’s because she’s also part of the PatientsLikeMe community.  She recently took some time to talk with us about why she started blogging, the difficulty in finding a diagnosis and how connecting with others has positively impacted her life.

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What made you decide to start blogging about your experience? What’s been the community response?
When I was first diagnosed with IPF, I started researching online (like everyone else). The medical sites gave me an idea of what was happening to my body, but they said nothing about how to live with this disease – and when I really thought about it, that’s what I needed. So, I turned to blogs written by other patients and caregivers. They were (and remain) incredibly helpful. I started my own blog as a way to make sense of what was happening to me. I’ve been a writer all of my life and the blog is my way of “talking it through.” I also see the blog as a way to give back to the amazing PF community. I hope that by sharing my experiences and passing along information, I’ll be able to help others cope with all that PF entails.

The response to my blog has been more than I ever hoped for. It’s a great way for me to keep family and friends abreast of what’s happening to me without managing an email list. Plus, other bloggers have discovered me and through them, I have also found several excellent blogs. Through the comments section, other PFers are sharing some really helpful insights for the whole community. And I love that we can all share a laugh or two about the craziness of our daily routines. What I’m happiest about, though, is that several readers have told me they forward some of my posts to others who they think might benefit from the message. IPF may be the source of my struggle, but what I go through on a daily basis isn’t unique. Fear, uncertainty, anger, stress, joy, motivation – these are the issues I deal with in my blog and they are universal.

When did you first know that something wasn’t quite right? Do you remember what your first sign or symptom was?
I was diagnosed officially in September of 2011. About 2 years before that, I started noticing shortness of breath when I climbed a flight of stairs or walked quickly. I shrugged it off as being overweight and out of shape. The shortness of breath continued to increase and my doctor prescribed a Flovent inhaler, figuring this was some kind of asthma or reactive airway condition. The Flovent didn’t help, and about a year later I developed a dry cough. It wasn’t much to start with, but over the next several months it got worse. I sucked on cough drops all day every day, and frequently coughed until I vomited. By the summer of 2011, I was so short of breath when I walked that I’d have to sit down and gasp for a while.

We’ve spoken to others with rare lung disease that had a hard time finding an official diagnosis. Was that your experience too?
Getting someone to understand that my symptoms went way beyond mild asthma was a long and arduous process. Even I had a hard time thinking it was anything more that just poor fitness and extra weight. But the coughing had gotten so bad that it was affecting my quality of life – I worried constantly that a coughing fit would cause me to vomit in public. My allergist thought the cough was caused by medication and started switching things around. As an afterthought, he ordered an x-ray. That’s when everyone saw the infiltrates throughout both of my lungs.

I didn’t know what infiltrates were, but I knew they were bad, so I got online and started researching pulmonologists. I wanted an experienced diagnostician who would help figure this out. I was fortunate because I unknowingly chose a doctor who belongs to the only non-university based IPF research center in the country. He ran extensive tests on me and did an open-lung biopsy to confirm the diagnosis. I talked with him extensively about his experience and felt comfortable that not only was he extremely knowledgeable about IPF, but that he would be an active partner with me as I learned how to manage and live with the disease.

That’s my biggest piece of advice to anyone – do your research and find a doctor who understands the disease. You may have to travel a bit to find him/her, but your life is worth it.

You titled one of your recent blog posts, “Retooling My Attitude.” Can you tell us about that?
On the surface, “Retooling My Attitude” is an homage to my grabber. I’d been thinking about getting a grabber for a long time – to retrieve things off the top shelf or recover socks that some how wound up behind the dryer. After I got sick, when I realized that simple tasks like picking up my bedroom were getting more and more difficult, I saw the grabber as more than just a simple convenience. Suddenly, it was a tool that offered me a little bit of control in an out of control situation. My disease has given me a new perspective on many elements of my life, and that provides fodder for much of what I write about. It’s also shown me that a good laugh can brighten even the darkest day, and so I also try to inject as much humor into my posts as I can.

It looks like you have quite a following on your blog. How do you think connecting on a blog or through an online community like PatientsLikeMe can help others with IPF?
From the beginning, I’ve been impressed with how warm, strong and supportive the pulmonary fibrosis community is. With the help of online locations such as PatientsLikeMe, I have friends across the globe who are always available to offer insights about everything from potential side-effects with a new medication to ideas for dealing with painful muscle spasms. It’s also really comforting to be able to connect with people who understand exactly what I’m going through, like the guilt that comes along with being “the sick one” in a family. And it’s nice to know that I’m not the only one who manages to get my cannula caught in the oven door!


Keith & Sarah’s personal journey with rare lung disease. Part III, “Bonus round”

Posted June 22nd, 2013 by

Over the last few months, Keith and Sarah have been sharing their journey with us. In this final interview of our three-part series, they talk about how he got on a transplant list and their “phones at the dinner table” policy. If you missed our first two interviews with Keith and Sarah, you can find them here.

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What did you have to do to get on a transplant list? Did you have to meet certain criteria?
[Keith] The transplant assessment process is an intense and very time-consuming one. When you are contacted about being assessed for transplant, you are sent a large envelope listing out a weeks worth of testing, doctors visits, and appointments in Toronto at Toronto General Hospital. The hospital evaluates you on many things, and ultimately if you are deemed “healthy” enough (because you can actually be too sick, or too healthy) as a result of this testing, you are placed on the list. There were psychological assessments, nuclear cardiac testing, liver testing, kidney testing, pulmonary function testing, physical testing, blood tests (LOTS of blood tests) to name a few.

Can you talk about your “phones at the dinner table” policy and how it changed?
[Sarah] Phones allowed at the dinner table. Most families discourage this, as it is always nice to have the family come together at the end of the day and talk about their day. The one time when people are tuned to each other as opposed to their devices! Once Keith was placed on the list, we were waiting for that call to come which would signal the next phase of our life. This meant that our phones were even MORE attached to us, and yes, were placed on the dinner table until that call came.

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How are you doing post transplant?
[Keith] I feel fantastic! Being able to breathe with deep breaths every minute has been the most life changing experience for me. I am still sifting through a bit of a fog with some pain medications but as they are reduced, I find myself feeling more and more enthusiastic about what lies ahead. Each day is a gift, and I am enjoying my “bonus round.” The realities of transplant are such that we never know what tomorrow will bring, so I am living my life to the fullest every day that I am here.

What’s the one thing you both think every rare lung disease patient should know?
[Sarah & Keith] There is hope. With awareness we can educate people on the necessity to be organ donors, which can ultimately get rid of the list! The transplant program at Toronto General is exceptional and if you do what they tell you, take care of yourself and do your physio…there truly is hope for a better life with new lungs. The hospital’s goal is to help you through your disease in any way possible, and transplant is the last option, but if you need it, this is the place to be.

Sarah and Keith are part of our “Spotlighted Blogger” series, where we talk with people who are sharing their personal health experiences to help raise awareness and change healthcare for good. Sarah started blogging about her fiancé Keith’s journey with a rare lung disease back in July of 2012 on her blog Taking a Deep Breath.


Keith & Sarah’s personal journey with rare lung disease. Part II, “Lungies”

Posted May 22nd, 2013 by

In this second interview of our three-part series, Keith and Sarah talk about how their daily lives changed and the importance of connecting with others. If you missed our first interview with Keith and Sarah, you can find it here.

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What were the most noticeable changes you had to make in your daily life?
[Keith] My ability to enjoy time with family was impaired because I could no longer be active with my children or my wife. I could not work because when I tried to do the simplest task, I became out of breath. I could no longer carry a toolbox, go up a set of stairs, or do everyday tasks at home without becoming winded and requiring rest. I wanted to rest all the time and was never comfortable.

As a caregiver, what things could you do to help Keith the most?
[Sarah] Keith eventually got to the point where he needed me for many personal tasks as well as taking care of all of the home tasks. I showered him, and took over our business, and we hired a cleaning service every two weeks to try to keep the house in order. Keith really needed to know that I was there for him. I made lots of special food for him because he needed to gain weight in order to be active on the transplant list.

How did you connect with other transplant patients and why did that help?
[Sarah & Keith] From the beginning, we began to seek out others who had received lung transplants. We found one in our town and eventually met many others through our many visits to the hospital. The lung transplant “family” is a tight one and it really helped to have others to talk to who were waiting, as well as those who had received their transplants and could offer hope and advice. Facebook became a good way to find people through other friends from the hospital, and eventually we developed a close group of “lungies” that we keep in touch with.

Besides PatientsLikeMe, what would you suggest to others patients who are trying to connect with someone like them?[Sarah & Keith] Finding groups on Facebook that relate to organ donation / transplant and beginning conversations with others is a great way to find people. Starting your own Facebook group or blog to raise awareness about your situation is another excellent way to let people find you.

Sarah and Keith are part of our “Spotlighted Blogger” series, where we talk with people who are sharing their personal health experiences to help raise awareness and change healthcare for good. Sarah started blogging about her fiancé Keith’s journey with a rare lung disease back in July of 2012 on her blog Taking a Deep Breath.

 


Spotlighted Blogger: Parkinson’s Patient Steve Ploussard of “Attitude & Fitness Wins”

Posted December 13th, 2011 by

PatientsLikeMe Member and Parkinson's Blogger Steve Ploussard Doing His Best "Heisman Trophy" Pose

Last week we kicked off a new blog series featuring patient bloggers, and today, we’re pleased to present our second installment.  Please meet Steve Ploussard, a longtime PatientsLikeMe member who writes a blog about living with Parkinson’s disease (PD) called “Attitude & Fitness Wins.”  Steve decided that blogging was the perfect way to “come out” about his Parkinson’s diagnosis and become more at ease with it. Check out our interview with Steve below to learn how he developed his “fighting spirit,” what he’s doing to raise PD awareness and who inspires him the most.

1.  What’s it been like “going public” about Parkinson’s on your blog?

Going public (“My Coming-Out Party”) on my blog has been a very emotional experience for me.  When I clicked “Publish” after writing the post, I felt as if the weight of the world was off my shoulders.  I became relaxed when talking about having PD with my family and friends just knowing they had read my blog and finally knew I had the disease.  I believe one of the reasons my tremors have become less frequent and not as pronounced is that I’m more comfortable with whom I am, a 55- year-old man with Parkinson’s.

I had basically been trying to hide that I had PD for seven years. Just try keeping a secret (of the magnitude of having Parkinson’s) for seven years.  It wears on you and can consume you if you let it.  Going public has also allowed me to create awareness of what Parkinson’s disease really does to a human being and their family.  The perception most have is that the disease is life-threatening and some have similar thoughts as if I had cancer and was going to die from it.  I use the opportunity to educate that PD does not kill you.  It only makes it more difficult to live a normal life due to the symptoms.

2.  What role does PatientsLikeMe’s Parkinson’s Disease Rating Scale (PDRS) play in your disease management?

The PDRS is the only tool I am aware of that a patient can actually use to track the progression of PD.  I have taken the test (a series of multiple choice questions about everyday activity) at least once a quarter for the past four years, and it has helped me immensely, especially from an emotional standpoint.  When I first took the test back in November 2007, my score between 0 to 100 (100 being the worst or the furthest along with Parkinson’s) was 7.  Just before I started to answer this question today, I took the test and scored an 11.  My high was a 22 back in May 2011.

A Sample Section of PatientsLikeMe's Parkinson's Disease Rating Scale (PDRS)

Obviously, I have a very slow progression of the disease. That gives me confidence I can live a normal life for years to come.  The PDRS may not be an exact science, but it does give us a baseline in measuring PD.  Your score can be used in determining what your next step is in fighting the disease and/or increasing or decreasing your medication(s).  Over the years, every time I meet someone with Parkinson’s, I ask if they are aware of PatientsLikeMe.  If not, I direct them to the website and explain about the benefits of the site, emphasizing the use of the PDRS.

3.  What’s some of the best advice you’ve gotten from other PatientsLikeMe members?

The information and history on the PatientsLikeMe website of approximately 6,000 members [with PD] is phenomenal.  The wealth of knowledge you have at your fingertips is extremely powerful.  If you have PD and are not member, you are simply missing out.  Neurologists specializing in Parkinson’s, in my humble opinion, should have PatientsLikeMe and the forum as required reading in their daily practice.

The following is one example of an experience I had recently with PatientsLikeMe.  At 3:00 a.m. one morning, not able to sleep, I went online to the PatientsLikeMe website.  The following is an outtake I posted on the [Parkinson’s] forum within PatientsLikeMe:

Over the past 2 years I have tried to go on Carbidopa/Levodopa 3 times, the 3rd time being this past week, in hopes it would help control my increasing tremors.  And now for the 3rd time I am stopping due to the side effects.  For the 3rd night in a row I could not sleep due to the constant high anxiety/buzzing feeling along with uncontrollable gyrations of my head and arms.”

Within 24 hours, four members responded with their advice, which was basically to start with a lower dosage and increase very slowly, but to give the drug a chance.  J. Marley, Lexiegirl, Parkinson’s Pete and equus, thank you from the bottom of my heart.  I made the dosage change and gave the drug a chance and now Carbidopa-Levodopa [brand name Sinemet] is my friend.

4.  You talk a lot about your fighting spirit on your blog.  Where do you draw inspiration and strength?

Good question.  My #1 inspiration in fighting the disease is having the right attitude and conviction to win the battles and the war against PD. This is why I am so obsessed with proper fitness and working out every day.  I made the commitment back in September 2009 that, at the very minimum, I would go to the gym six days a week and do 60 minutes of cardio, 30 minutes of weights and 15 minutes of abdominal work.  I am currently in the best shape of my life, which is an extreme confidence booster that I can win the war and hold off this disease until we find a cure.

Outside my family, there are three men that I draw inspiration and strength from almost daily.  They are Coach Jim Valvano (“Jimmy V”), Michael J. Fox and Mohammed Ali.  This past week was the anniversary of Jimmy V’s memorable speech at the ESPY awards on ESPN, when he was still alive fighting cancer.  I have heard and played the speech so many times I can almost recite it by heart.  The main strength I draw on is what Coach Valvano asked us all to try and do each day.  We need to be deep in thought about something important to us every day.  Each day we need to laugh and enjoy life.  And lastly, each day we need to have emotions that move us to tears.  If we can have deep thought, laughter and cry in the same day, that’s a BIG DAY.  The tagline of the V Foundation, “Don’t Give Up, Don’t Ever Give Up” is the mission statement on my blog (www.AttitudeFitnessWins.com).

As we go through life, we all have our heroes we look up to for inspiration.  For me that has changed as I have gotten older and hopefully wiser.  When I was young, my heroes were sports stars like Mickey Mantle, Pete Maravich and Jack Nicklaus.  In my adult life family members have become my heroes and support as I fight PD and try and live a normal life.  My Dad, my Mom, my Uncle Jack, to name a few, have always inspired me to be the best I can be.

Boxing Legend Muhammed Ali, Whose Attitude Inspires Steve Ploussard on a Daily Basis

Since being diagnosed with Parkinson’s, my motivation to make an impact and help others living with PD comes from Michael J. Fox and Mohammed Ali, both of which have had Parkinson’s for many years.  Michael J. Fox is an incurable optimist that I have respected since reading his book, “Always Looking Up.”  His quest through his foundation in finding a cure for the disease in his lifetime is unsurpassed and is my Holy Grail.  And then there is The Greatest, Mohammed Ali.  My blog’s mantra, “Attitude & Fitness Wins,” says it all.  I draw strength and a confident attitude every time I see it.  His jubilation and his commitment to fitness and being a winner are attributes I want to portray in my life and hopefully pass on to others and have an impact on their lives as well.

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To find out more about PD, check out our follow-up blog post, “Life with Parkinson’s Disease: What We’ve Learned.”


Spotlighted Blogger: Bipolar Patient Andrea of “Lithium and Lamictal”

Posted December 8th, 2011 by

How do we know we’re truly living in a Health 2.0 age?  Recently, we’ve discovered that a number of PatientsLikeMe members have fascinating blogs chronicling what it’s like to live with their respective health conditions.  For example, we told you in August about the acclaimed gastroparesis blog “My Broken Stomach,” written by one of our members, Mollee Sullivan, and last month, we spotlighted diabetes patient Michael Burke’s blog “Life on the T List,” which shares his experiences before and after a kidney transplant.

Bipolar Blogger Andrea of "Lithium and Lamictal"

As a result of this growing trend, we’ve decided to begin a blog series featuring some of the other amazing bloggers that are part of the PatientsLikeMe community.  To start things off, we’d like to share our interview with Andrea, a three-star member who started a candid blog about life with bipolar I disorder earlier this year called “Lithium and Lamictal.”  (The title refers to the two treatments she’s found that work best for her.)  Tune in below to find out why she began blogging and what she hopes to achieve.

1.  Why did you decide to start blogging about bipolar disorder?

I decided to start blogging about bipolar disorder after 21 years of living with this health condition. I was diagnosed with manic depression (now referred to as bipolar disorder) in 1989, and the main reason I bought my first computer in 1997 was so that I could try to connect with other patients and research bipolar disorder using the World Wide Web. I just knew there had to be more information out there than what I had gotten from my psychiatrists and the few pamphlets and books I had read before everyday people began using the Internet for research.

I’m still trying to learn as much as I can about bipolar disorder and health and wellness. I have always been interested in finding information about how people are living day-to-day with the condition. When I decided to start my blog, I wanted to give readers a view into my life so that I could provide an example of someone who is trying to do her best to manage the condition. I hope that my blog will inspire others to take charge of their physical and mental health, and also to remain hopeful and positive.

2.  Your blog is called “Lithium and Lamictal.”  How long did it take to find this treatment combination, and what difference did that make in your life?

When I was first diagnosed with manic depression in 1989, I was given lithium as a monotherapy. It prevented mania, but I still got depressed and I just had to deal with it because psychiatrists wouldn’t prescribe antidepressants since I had a history of severe manias and psychotic breaks. I think it was 2001 when my then-psychiatrist recommended that I try Lamictal at a time when I had been stable for a while. I took it and I didn’t get depressed for a few years, but I did have some unpleasant side effects, so I discontinued it and eventually experienced a serious depression.

Last year, when I was going through another serious depression, my new psychiatrist suggested that I try Lamictal again. After several months, my depression lifted, and after reflecting on my experiences with the medication, I realized that while Lamictal wasn’t great at relieving my depression, it definitely seemed to prevent my depression. At this point, I plan to take it indefinitely. I am taking a lower dose than with my old psychiatrist, and I also take medication and supplements to counteract the side effects. So now I take lithium and Lamictal and feel healthier than ever. All things considered, they are the best medications I have tried with the fewest side effects. Together they prevent mania and depression, and I hope I’ve found a combination of medications that will work for me for years to come.

3.  What have you gotten out of being a member of PatientsLikeMe?

I really like tracking all of my health conditions and medications as well as exercise and sleep. It’s a good way of figuring out what is working and what isn’t. It’s also a reminder that I need to continue to take good care of myself, and it lets me know when I am slipping and need to get back on track. My psychiatrist likes it when I bring the charts to my appointments. She has also started asking me to bring my blog posts.  The [PatientLikeMe] forums are a good way to learn from other patients about what is working for them. I post my new blog posts in the forum in the hope that they might help or inspire people.

4.  Your username at PatientsLikeMe is Yoga Lover.  What role does yoga play in your self care?

I was taking yoga from a great yoga instructor when I chose my username. Yoga is excellent for increasing strength, flexibility, relaxation, learning about mindfulness, and more. Not every yoga instructor focuses on spirituality, but mine did. We had candles burning, dim lighting, a picture of B.K.S. Iyengar and houseplants in the studio. We also had short discussions before class that everyone was encouraged to participate in.

Later in the class, as we went through the poses, he would talk to us about things we should be focusing on. Something that helped me the most was when he explained that just as a stomach digests, a mind thinks. The thoughts aren’t that important. We can decide who we are and what we want to do regardless of our thoughts. We don’t need to be embarrassed about our thoughts or judgmental of them, we just need to observe them.  He recommended reading the book Light on Yoga Sutras of Patanjali, by B.K.S Iyengar, which I did. If you are interested in yoga, I would recommend it highly.

Because of financial considerations, I stopped attending that yoga class and joined my local YMCA. I take a spinning class three times a week and walk on the off days, as well as doing some swimming and strength training. I’m not going to a yoga class currently, but I still focus on things I learned in yoga about breathing, meditation, relaxation and mindfulness.