Thursday, March 29, 2012

Finding Focus

I don't really believe in coincidences. I think things happen as they are supposed to. I just posted a couple of days ago about my struggle with quieting my mind on my quest to meditate. During lunch today, I was busy creating my Meditation Nook board on Pinterest. A few minutes ago, I finally got around to reading my daily Joyce Meyers devotional. What was it about? Yep.

The devotional included a quote from Eugene Peterson's The Message: "Summing it all up, friends, I'd say you'll do best by filling your minds and meditating on things true, noble, reputable, authentic, compelling, gracious—the best, not the worst; the beautiful, not the ugly; things to praise, not things to curse."

Maybe, for now (for me) focusing on the positive is the key to quieting my mind. Rather than trying to turn my thoughts into white noise, I will pick one thing/person I'm thankful for in the moment and try to focus on how grateful I am to have that thing/person in my life. It's got to be a heck of a lot better than repeating "one" or "om" over an over, which is what I tried to do last night.

In other news, as you can see, there's a new look around here. I got bored with my old template and went on a renovation mission last night. Now, all of the blogs are accessible from A Curated Life. I'm also adding a Style page and resuming and redefining the Rubbish Free blog. Food, fashion, home decoration, health and everyday lessons. Sheesh, I've got a lot to do...but I'm loving every moment.   

Tuesday, March 27, 2012

War Paint

It sounds like a small thing (and one I should be thankful for since it's keeping me properly oxygenated) but I hate using my oxygen tank. On days when I feel good, it is the one reminder that things are nowhere near normal. Total mental drain.

Getting used to sleeping with an oxygen cannula in my nose hasn't been easy. I'm constantly wrapped in the 50 foot cord and it falls off or moves and pokes me in the eye when I move in my sleep. Even more annoying than that, however, is the sleep line like dent it leaves in my right cheekbone. When I was 20, I'd wake up with sleep lines on my face and they would be gone by the time I was out of the shower in the morning. Today, this line was there when I woke up and now (about 6 hours later) it is still there. Persistent little bugger.

I can't get rid of it so I kinda feel like highlighting it with gold body glitter a la Padma Lakshmi or painting it with war paint. This is, after all, the battle for my life/health. I feel a photo shoot coming.

Monday, March 26, 2012


I have been trying to meditate more since the beginning of the year. When I can do it, it helps to center me and reminds me not to spend hours of my time dwelling on (read: obsessing over) things I cannot change. Since my diagnosis, however, when I’ve tried to meditate—even for a very short time (1-5 minutes), I’ve found that I can’t get quiet. My thoughts are racing and I am thinking about everything from work meetings to my grocery list. I’ve tried reciting mantras, counting, listening to my breathing, etc. Nothing seems to work. I concluded that my mind is in a loud phase right now because of everything that is going on in my life. I ended the week washing away the stress of the day with prayer and a hot shower instead of sitting in lotus pose fighting to stop my mind from racing.

Then, last night, I saw an episode of Oprah’s Next Chapter. The topic was Fairfield, Iowa and the meditation culture that has thrived there. The focus of the show was the benefits of transcendental meditation. By the end of the show, I was ready to try meditation again. Hubby (who doesn’t currently meditate) is on board too. We are going to going to create a small meditation area (we always love a project in our house) in our bedroom or in the rarely used guest room and really set aside time every day to sit in silence and let the day wash off.

I will say that there is all sorts of information on the web and on television about the benefits of transcendental meditation. But, as beneficial as it is supposed to be, there isn’t much on the web about how to do it—at least not for free. For me and my budget, I am going to start by looking for books at the library and for videos on YouTube and see how it goes. Until I am comfortable that I have learned the process, I am going to focus on quieting my mind and sitting in silence.

Any tips on how to take meditation to the next level or stories of how it helped you? Leave a note in the comments section.

Thursday, March 22, 2012

Perfect Timing

I was doing my weekly blog tour when I came across a quote that couldn't have been more timely. I thought I'd share.

Your journey has molded you for your greater good, and it was exactly what it needed to be. Don't think that you've lost time. It took each and every situation you have encountered to bring you to the now. And now is right on time. --Asha Tyson

I see this somewhere on a wall in my house (maybe in the meditation space I'm designing) in the near future.

Tuesday, March 20, 2012

Looking for Signs

Last year, I started the year by doing a daily declaration through a audio series called “I Declare” by Joel Osteen. This year, I am doing a similar series by him called “I Am.” I ordered it late and it came in February but with everything going on at the end of February (that was when I was admitted to the hospital and diagnosed with PAH), I didn’t start listening to the daily declarations until a week ago. This past week, I had to leave town for a business trip. On the way to the airport, I listened to that day’s declaration. It was all about not being afraid to ask God for a sign. I never pray for signs. I pray for specific needs, have faith I was heard and try to leave it at that. That night, however, I thought, “why not pray for a sign?” Is it out of fear? Is it because I am managing my expectations and placing limits on my prayers in the process? I didn't figure that out fully but I did pray that night for a sign that there is healing in my future and went to sleep.

The next day, I was in seminars all morning. At lunch, I sat with some colleagues that I’d never met. The topic of children came up and everyone started sharing stories about their experiences with sons and daughters. The woman sitting next to me just had her second. When it got to me, I was asked if I had kids. Normally, I would say “not yet" with a smile that indicated there were children in my near future. This time, I just said “no.” As we left lunch, my response bothered me. Why did I just say “no?” Was it a sign of waning faith? Had I given up hope of having children? As I was questioning myself and feeling pitiful, I got a text from a person I went to church with when I was in high school. Many years and another state later, we do not keep in touch. My sister still goes to the church and my recent diagnosis came up in conversation a week ago. When asked, my sister gave the woman my phone number. The text said “my church will be in prayer for your miracle tonight.” It was perfect timing. I needed the encouragement after the lunch conversation.

The seminar after lunch was about using adversity to grow. I can’t begin to do the story I’m going to share justice but I have to share it. The speaker started by talking about adversity in the workplace. Then, he shifted to application of the principles in everyday life. He talked about a woman he knows that was dynamic and healthy. One day, she was holding a cup and it fell from her hand. Not feeling right, she went to the doctor and was told she had multiple sclerosis. The doctors essentially told her to spend time with her family and doing things she loved because before long, she would have very little quality of life. She could have given up but instead she asked who said it had to be that way. Many years later, she hasn't had a symptom. In fact, she teaches a fitness boot camp among many other things. She is just as dynamic and amazing as she was before the diagnosis. As it turns out, this resilient woman is his wife. The story and the realness of her miracle really hit home with me. Later that night, I called my family to share the story of my day and of my prayer for signs and caused a ripple effect of positivity.

For some, all this could read as coincidence. For me, all of this amounted to the sign that I needed to build my faith on a stronger foundation. I will admit that I feel pretty crappy today. I am short of breath when walking average distances and truly having one of those days where I am forced to acknowledge my illness because I feel sick. I could choose to focus on how I feel and say the sign I was given was a sign that I will never get better. I could drown in negativity and ignore the positive moments from the day. Happiness and optimism are choices. I choose to see the positive signs I got today as answered prayer. As for the way I feel physically, I regard it as the creeping in of doubt that could detract from the good place I am in mentally if I chose to let it. Those days may come but not today. If I am to get through (and past) this illness (despite the odds and the lack of a cure), I have to choose to look for and stay focused on the good possibilities. It makes for a better life and I'm all about that these days.

Monday, March 12, 2012

Sponge Time

Despite the title, this isn't a post about a certain yellow sponge living in a pineapple under the sea. It is about my brain soaking up all there is to know about PAH. I feel like I am arming myself for war. Inevitably, there will be new information and surprises along the way but if I learn all I can, I will know the right questions to ask and the right signs to look for when evaluating my post medicine improvements between doctor visits. I'm absorbing as much as my brain will tolerate without freaking out (i.e. sponge time).

This weekend I learned that I also need to look up all of my medications so I know what new needs I have. Prime example is my new relationship with blood thinners. I am vegan and I eat a pretty healthy diet (more fresh greens and grains than processed soy chicken and veggie burgers--though I do love a good veggie burger). Little did I know that all those leafy greens and green juice that I drink could be doing me in. Apparently, leafy greens have properties that help with clotting thereby reducing the positive effect of the blood thinners. Cranberries have a negative impact as well. So much for my spinach salad with cranberry vinaigrette.

Then, there is the issue of pain. I have occasional joint pain related to lupus for which I've always taken ibuprofen. I knew going in that it was an NSAID that also causes blood thinning. I wasn't prepared for how much I would miss the ibuprofen and its anti-inflammatory properties. It is amazing how much a minor knee and ankle pain worsens when you let it sit instead of taking two ibuprofen and moving on with your day.

In short, I haven't even started my PAH prescription yet and I am already reeling from the impact medication can have on a life that was pretty free a few weeks ago when I was just taking a couple of standard medications for Lupus, eating greens and using ibuprofen.

All said, I am not complaining. I am just learning out loud and sharing the lesson. In other news, there has been a happy streak in my life recently and it came at just the right time.

Monday, March 5, 2012

Just when life seems to be coasting along...

Inevitably, along life's journey, you are going to come across things that derail your train from the tracks. This blog started with such an event and things seemed to have turned around for the better over the last 3 years. If trials come as a way to help you grow to your full potential on Earth, I guess it's time for a growth spurt. By now, I'm sure you are saying "Get to the point."

I'd first remind you that patience is a virtue (one that I am still grappling with for sure) but I will get to the point. I was diagnosed with pulmonary hypertension last week. I've been meaning to blog about it but couldn't find the words. For those of you who this or any of my other blogs, you know I was diagnosed with Lupus SLE in 2005. Since then, there have been many ups and downs but I got a good handle on my health with the assistance of a wonderful doctor and the right meds in 2008. I've been in remission for a while now and my health was seemingly better than ever thanks to a combination of the loving and supportive family/friends, the right foods, the right meds and a new job (i.e., significantly less stress). I had an appointment scheduled for Monday to talk to my rheumatologist about the necessary steps for planning for a high risk pregnancy but honestly, in remission, I felt strong. I didn't think it would be too high risk. Then on Wednesday night, everything changed.

I was sitting in the living room and noticed a little heartburn and some heart flutters. I'd eaten already and my heart has been beating faster than normal for several years now. I'd attributed my high pulse rate to my lack of regular exercise (ok, barely any exercise). I blamed the heartburn on dinner and eventually made my way upstairs. By the time I fell asleep around 1:00 am, the heartburn was gone and my heartbeat felt normal. I will say I was extremely conscious of all thing heart related because I lost a high school/college classmate (same age) the week before to a heart attack. Since it was heart disease awareness month, I'd seen numerous articles and TV segments on heart attacks having different symptoms in women. At 3:00 am I woke up with a sharp pain in my chest, radiating pain in my left shoulder and on my left side. I jumped up quickly and woke up Hubby. We were both in a full scale panic so my rapid heartbeat and light headedness could have been from that but I was determined to be safe rather than sorry. I decided to go to the ER. By the time I got there, my left side and shoulder were still hurting but the dizziness and rapid heartbeat had gone away.

They took me back to the ER admittance area and gave me a nitroglycerin patch. Then, they began running tests. The EKG was first. The doctor on call literally patted me on the head and said "Awww. It will be ok." after telling me that my EKG was "abnormal." That "Bedside Manner for Pediatricians 101" moment started what would be a series of eye rolls and comments to my husband about wishing I'd just stayed home. I know he meant well but I am not one for coddling. Just tell me what's going on without all of the fake affection. That said, if he had any indication of what my diagnosis would be based on the EKG alone, I see why he was having such a "you poor thing" moment.

After the EKG, I had a series of seemingly unending tests. CAT Scan, Radioactive Isotope Breathing Test, Echocardiogram, Ultrasounds of my legs and neck to see if I had blood clots, Chest X-Ray and they took no less than 20 tubes of blood (and blew out several veins in the process). After all of that, they admitted me to the hospital. I've never been admitted before. It's a scary thing when someone tells you that you are too sick to leave. I actually had the pulmonologist on duty tell me that I had pulmonary hypertension and my heart could give out at any minute so I should plan on staying in the hospital for the long term. Clearly, I am typing this now from outside the hospital so that didn't happen.

After not sleeping for 2 nights in the hospital (and catching a cold from the woman I was sharing a room with), I checked myself out. I spoke with the specialist who I would be seeing on Monday and she said I could see her as an outpatient. She did explain that my disease is rare and it sparks a response in doctors who don't specialize in the area that is often over the top. That gave me a little sympathy for the doctor who told me my heart would give out if I walked out of the hospital. In any event, I walked out. I did follow doctor's orders and take a portable oxygen tank with me. I also got an oxygen hookup in my house and filled a prescription for injectable blood thinners that Hubby had to inject in my stomach (not as painful as it sounds minus the burning--of course getting a shot at this point for me is common and pretty close to painless).

I also got a pep talk from a wonderful nurse (the heart failure nurse to be exact--scary title right?) before leaving the hospital. She told me not to look on the internet because most of the studies online are outdated and new developments are happening all the time. She also told me that it's not about where I start but where I end up when I start treatment. I didn't have the heart to tell her I'd been on the internet on my phone from the moment I heard "pulmonary hypertension." That ended with me shutting down my phone and setting it at the edge of the bed like it was the bestower of the disease. After talking to her stayed away from articles that had the terms "fatal" and "low survival rate" in the first paragraph. I did read about new studies, potential new treatments and descriptions of the disease and related complications. Can you say daunting?

Monday, I had a pre-op appointment and was comforted by the doctor (not because she kissed my forehead, which she did) but because she was honest with me and broke down the treatment options in plain English. She talked to me like a real human being. She wasn't overly optimistic but she was indeed optimistic because of my lack of symptoms. I didn't look at the internet that night. I had a good dinner with Hubby and prayed for a successful procedure.

Tuesday, I had a right heart catherization. Afterwards, my doctor told me that my numbers weren't quite as good as she'd expected based on the lack of symptoms but that we were still in an early enough stage to treat me with pills (as opposed to a pic line or an IV). I had to sign a consent form and join a group to get the medication I'll need (Tracleer) because it can cause liver damage and birth defects. So much for the plans to talk to my rheumatologist about getting pregnant. Now, each month, I will have a liver function test and a pregnancy test to remind me of the void where my baby should be. I know that choice of words is better suited for a soap opera or a bad television drama so excuse my lapse into the super dramatic. I also know that there are many options for women who can't carry a baby and I haven't ruled any of that out yet despite the diagnosis. That said, I am still working through the gut punch of it all. In the work out phase, I'm allowed a few phrases that seem to need their own sad, dark theme music.

So here we are. Life is still moving forward but I've picked up extra baggage and for the moment, it's in the form of a small oxygen tank on wheels. I keep saying I will take this all one day at a time (as if there is another option) and not drown in the what ifs. I haven't started the medication yet and today, I have had moments (walking into the office from the parking garage) where I felt short of breath. I think part of that is Lupus, which is mildly active during certain times of the month (sorry if that's too much information but it's true) but part of it now has another name. Leave it to me to get something rare and incurable with no family history of the disease and no history of smoking. By the way, did you know there is a Rare Disease Day? It's on Leap Day, which coincidentally was the day after my full diagnosis--gotta love that irony. Let's raise awareness for the rare disease crew every 4 years. Anyway, I digress.

And that ends the lament. Overall, I am strong and I am breathing, which is apparently something I can say when people ask how I'm doing without an ounce of sarcasm. More importantly, I see this is as an opportunity for mental and spiritual growth. I worked on having faith last year and banishing worry and doubt from my life. They are the great detractors from a positive focus/outlook. I thought I was pretty solid on that front despite the fact that it was never really tested (last year was pretty great in general--all I worried/had doubts about was getting a permanent position at my current job). I did stress about it for a while but then I gave it God and just did my best in each interview. I was eventually offered the job and decided (rather swiftly) that I'd successfully run the faith race and earned my unshakable rank. Now, I am standing in front of a much bigger hurdle (make that a pole vault) and here I am all out of shape and unprepared to run or jump. Guess it's time to get in shape. I should tell you that despite the current science, I plan to clear that jump against any odds that exist. Enough metaphors (and don't ask why this couch potato is using all this track and field jargon...for some reason--maybe that I have to start doing mild exercise when I start the new meds--anyway, it just seemed to fit).

It's time to put all that new me stuff to the test and then keep growing. My New Year blog entry and my 6 goals hit home in a whole new way now. I'll be blogging about the journey here (peaks and valleys) as usual. I hope you'll join me along the way and if you have PH, I'd love to hear your story. If you read my other blogs, I'll still be cooking and writing about my life with Lupus (for some reason, that sounds like a TV show where Lupus is my long lost Eastern European cousin a la Perfect Strangers). Hubby and I are still continuing our new business venture and there's lots of excitement there these days. I'll be keeping up with that blog too. Ultimately, life moves with or without you. I'd rather be moving and that's where I am today.