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.

lori2

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.

Lori

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!