What Is Working and What Is Not

Today I wanted to talk about some emerging challenges with my self-care routine and the steps I am taking to address these new issues.

Sleep Apnea

What's not working: I have been using a nasal pillow mask for several years now. During that time, I've been dealing with a lot of nasal discomfort, with the most troublesome symptom being increased nasal stuffiness. My primary care doctor recommended I use a prescription nasal steroid spray to combat this problem. Unfortunately, my endocrinologist thinks the nasal steroid is mimicking the symptoms of a hormonal problem and has asked me to stop using spray.

What is working: I decided it was time to go back to the drawing board and check out different CPAP mask configurations to see if switching to a different type of mask could solve the problems I was having a nasal stuffiness. After doing some research I decided to give the Sleepweaver soft fabric nasal CPAP mask a try. The new mask allows the air from my CPAP machine to surround my nose rather than be blown up inside of it. This seems to be making a difference, as the problems I've been having with nasal stuffiness seem to be resolving.

The bottom line: If you are a CPAP user like me, it pays to keep on top of new developments in CPAP technology. Every year, I find new and innovative products that are helping me minimize or eliminate many of the small annoyances that come with being a regular CPAP user.

Dysautonomia

What's not working: I've been trying to implement the recommendation from my doctor at the Mayo Clinic to include more electrolyte beverages into my daily routine. Electrolytes help me better maintain my fluid balance, which is a problem when you live with postural orthostatic tachycardia syndrome (POTS) like me. Unfortunately, most electrolyte drinks contain sugar. Since I'm diabetic, I generally avoid sugary drinks because they present a signification challenge to my blood sugar management.

What is working: I've been searching for several months now, looking for an electrolyte drink that is sugar-free. I recently discovered Ultima Replenisher, a balanced electrolyte drink that is sugar-free and recommended by the Dana-Farber Cancer Institute for their patients. I purchased the lemonade flavor a few weeks ago and really liked the taste. I'll be ordering the orange flavor from Amazon.com in the next week to give that a try.

The bottom line: What can I say? Persistence often pays off.

Type 2 Diabetes

What's not working: Unfortunately for me, my blood sugar levels appear to be on the rise once again. I can honestly say I have not made any significant changes to my diabetes self-care routine, so my best guess is that the rise in my blood sugar has something to do with my Hepatitis C viral load. I've noticed in the past that when my viral load increases I have more difficulty controlling my diabetes.

I just had blood drawn a week ago. I will be getting those test results soon and I anticipate that they will confirm my suspicion.

What is working: In the meantime, I've needed to get more diligent with my diabetes self-care. I am double checking to make sure that my meals are balanced between carbohydrates, protein and fat. I am also making sure I include more high fiber carbohydrate choices, like whole grain bread and pasta, beans, whole fruit and starchy vegetables, and fewer simple carbohydrates choices, like products made with refined white flour and sugar.

I've also discussed my concerns with my endocrinologist and she has suggested increasing my dosage of Victoza.

The bottom line: This isn't the first time this has happened. And each time it happens, it gets me thinking that it might be time to start thinking about treating my Hepatitis C. So when I see my hepatologist for a follow-up appointment at the end of June I'll be talking with him about hepatitis C treatments once again.

As you can see from this discussion, managing my chronic illnesses is an ongoing process with an ever-changing target that requires me to be resourceful, flexible, persistent and engaged. It's a lot of work, but it's a very necessary part of my life. After all, no one is in a better position to take care of me than I am. Too bad it's not a job that doesn't pay better.

The bottom line is I know I'm doing a good job when I continue to be able to live my best life despite all my health challenges.

Bits and Pieces: Pink is Important & My Genes Can Predict the Future

Image by ***Images*** via Flickr
Two things were on my mind yesterday...

Pink is Not the Same as Blue

I got a delivery yesterday of my CPAP supplies, which included the new ResMed Swift LX for Her mask. Using a CPAP can't really be described as fun, but I do make an effort to research all the latest therapy improvements to at least make it as comfortable as possible. So I was tickled when I opened the packaging and found that the back strap and the strap guards for my new mask were made from hot pink fabric.

Which got me thinking that pink really is important.

As far as I know, ResMed is the first company to make CPAP masks specifically proportioned for women. They also include literature with the mask that features women talking about sleep apnea. This woman-centered presentation makes me feel supported knowing that ResMed understands that the sleep apnea experience for women is similar, but not the same, as it is for men.

Success or Failure: Is It Written in My Genes?

Yesterday I met with my liver doctor for a routine follow-up on my chronic Hepatitis C (HCV) infection.

My doctor updated me on the exciting things coming soon to the world of HCV treatment. First up in a few months' time are the HCV protease inhibitors, antiviral drugs that specifically target HCV. Not far behind are the HCV polymerase and NS5A inhibitors, two more classes of antivirals. I followed up my doctor's appointment with a visit to the HCV Advocate website and my head was literally spinning after reading the names of all the 34 antiviral drugs currently in clinical trials for HCV.

Finally, the antiviral therapy I've patiently been waiting for, for 16 long years now, is almost within my grasp!

Unfortunately, in the near future, these antivirals will still need to be administered with the standard HCV treatment of interferon and ribavirin because HCV can quickly mutate, as fast as 3 weeks, and become resistant to a single antiviral medication.

But I learned something new today: there is a simple blood test I can take to determine if I will respond to the interferon component of the treatment protocol. The test looks at the IL28B gene. A variation to it's structure can predict whether interferon will succeed or fail at clearing my HCV infection.

That's pretty heady stuff.

Since there is no urgent reason to immediately pursue this, I plan to get the test a few weeks before my next appointment in June 2011 so I can get the results in-person from my doctor.

Related articles

• CPAP Treatment for Sleep Apnea Fights Fatigue (webmd.com)
• Sleep apnea device eases fatigue in three weeks (reuters.com)
• New Hepatitis C Drugs in the Works (webmd.com)

Rain, Rain Go Away ... From My CPAP Hose!

There are estimates floating around the Internet that up to 80% of people diagnosed with fibromyalgia have sleep apnea.

My Sleep Apnea Story

About a year and a half into my workup and treatment for fibromyalgia, I was sent for a sleep study. I actually had to spend two nights in the sleep lab, on two separate occasions, because I only slept two hours the first night, which was not long enough to complete the split night protocol of sleep without, then with, a CPAP machine and mask.

After two night of being monitored and a grand total of about 6 hours of sleep between the two sessions, I came away diagnosed with sleep apnea and other sleep disorders. (And by the way, I really don't snore that much and my sleep studies confirmed this.)

Getting Used to CPAP Therapy

I've talked before about living with sleep apnea in my posts The Elephant in My Bedroom and My Routine: Trying to Get a Good Night's Sleep. Needless to say, it takes a great deal of effort on my part to make sleep apnea therapy using a CPAP machine and mask comfortable and manageable. As I mentioned before, I use a whole host of tricks and tips to increase my compliance with nightly therapy.

For the most part, I can be compliant with therapy, but it's not always easy...

Rainout in My Hose and Mask

Today I want to talk about rainout, a complication of using a CPAP machine, especially in colder weather.

I have a CPAP machine with a heated humidifier. The heated humidifier increases the humidity of the air being sucked into the machine and delivered to my nose via a 6 foot tube and a mask. Without the humidifier, my nose gets really dry, irritated, stuffy and swollen on the inside. Contrary to the name, a heated humidifier doesn't make the air coming through the machine any warmer; the humidifier chamber heats distilled water inside it to release water molecules into the air.

When the air in the bedroom gets colder, like in the winter, the cold room air cause the water vapor in the air leaving the machine to condense along the tubing and mask. The result: I wake up several times a night with a puddle in my mask and water droplets up my nose. Nothing is quite as shocking and disruptive to my sleep as breathing in water!

So when a cold snap hit Southern California a few weeks ago, I had no choice but to turn my heated humidifier off. That resulted in no rainout, but lots of nasal discomfort. Unhappy with this fix, I started with an Internet search for a solution that could help with rainout.

A New Machine Solves the Problem

So it turns out that CPAP technology is evolving and now there is a machine with an integrated heated hose that virtually eliminates this problem.

The bad news for me is that my health insurance won't pay for a new and improved CPAP machine until May 2013 (that is every five years.) You see, health insurance won't pay for CPAP machine rentals. Once they pay out the equivalent of the purchase price, I own the machine. I guess it saves them money on their end, but it really doesn't help me take advantage of technology advances and machines with better compliance features.

A Universal Heated Hose

My search lead me to SleepZone in Australia, the country that is home to the inventor of the PAP machine, a precursor to the CPAP. SleepZone sells a universal heated hose that can work with my machine. Only problem is that this medical device is not FDA approved and not available for sale in the USA. (Which made me wonder, since they didn't get it FDA approved, did that open the door for American CPAP manufacturers to steal the idea and include it into newer generation machines?)

I could buy it from SleepZone in Australia, but would need to save up about $140 to do so. And since hoses don't last forever, I would need to find $280 a year in our budget to pay for this hose solution.

CPAP MacGyvering

Next I called my CPAP supply company and told them about my problem. They offered to sell me a CPAP hose cover, which I already have. Then they suggested I place an old fashioned hot water bottle, filled with hot water, in front of the CPAP air intake opening to try and heat up the incoming air. They also suggested I take my hose off the hose caddy and place as much of it as I could under the bed covers with me to keep it warm.

I tried their suggestions and they seem to work, but it's not a perfect solution. It appears I've gotten rid of rainout in colder weather, but replaced it with anxiety about rolling over onto my hose in bed, damaging it or cutting off my air supply and suffocating myself, then either waking up gasping for air or pulling my mask off in my sleep.

A Better Way?

All this research and problem-solving has me asking, 'Isn't there a way insurance can work with me to make my CPAP therapy more comfortable and easy to use? Why can't I rent a machine and swap it out when a better, more patient-friendly one becomes available?'

I know that a lot of people have problems getting used to CPAP therapy. I have heard stories of people giving up when faced with how uncomfortable it can be. I make a huge effort to try and stick with it and I am proud to say that I am about 99% compliant.

That said, I resent that my insurance company limits their assistance in helping me achieve comfortable CPAP therapy. After all, if I am compliant, I am saving them money on health care for sleep apnea complications like:

• high blood pressure
• heart failure
• coronary artery disease
• stroke
• sleep deprivation and fatigue, which increase the risk of accidents

In the meantime, I'm really going to try and save up the money to purchase the SleepZone universal heated hose. After all, this solution is cheaper than buying a new machine out-of-pocket.

The Elephant in My Bedroom

Image by >>>WonderMike<<< via Flickr

It seems like there are so many conditions associated with fibromyalgia, but there is only one that turns me into an elephant with a 6 foot long trunk each night. I'm talking about sleep apnea and my nightly bedtime companion (besides my hubby of course): my CPAP machine. My CPAP mask, the ResMed Mirage Swift LT for Her, sort of looks like the mask WonderMike is wearing in the picture above, which connects via a 6 foot hose to my Respironics REMstar Auto M series CPAP machine. (However I, unlike WonderMike, will not be modeling it for you.)

I've been thinking about my whole sleep apnea situation more because of the pollen explosion that has gripped the nation this Spring, including right here in Los Angeles. I saw my family medicine doctor yesterday, who explained that the alternating cold-warm-cold-warm weather cycle seems to be making all the trees, plants, flowers and grasses release even more pollen than usual. This whole pollen thing got me asking for allergy medications, medications I don't usually use on a regular basis. But over the past few days my ears have been all stuffed up, which in turn makes me feel nauseous and dizzy, like I have vertigo. I can deal with the stuffy nose I often get from my CPAP, but the stuffed up ears is where I draw the line.

Yeah, using a CPAP has a whole bundle of nose, congestion and other problems. All that air getting blown up my nose all night can dry me out or get me all stuffed up, depending on the weather and the season. Using a prescription nasal spray can help with this, but I just don't like adding another medication to the mix on a regular basis. Fortunately for me, I discovered this gem of a website that provides a comprehensive list of tricks that helped me learn to adapt and make CPAP therapy work for me without additional medications: The alt.support.sleep-disorder Website CPAP Hints & Tips. Rather than repeat all that good information here, I'll let you head over to their website to take it all in.

The real bummer with all of this is that, with near 100% compliance, I still can't seem to get a good night's sleep, probably because sleep apnea isn't the only sleep disorder fibromyalgia has given me. I've talked a bit about my delayed phase sleep disorder here and even mentioned my inability to get deep, stage 4 sleep. I continue to have an overall inability to get good, restorative sleep every night. That said, it is also to the point where I can not sleep without my CPAP, despite it's awkward, elephant-like appearance and constant maintenance. I know this because my sleep is made worse on the night's I am unable to use it due to the occasional cold or sinus infection.

That said, I'm off to bed, elephant trunk and all. I feel like I should be trying to learn how to trumpet like an elephant to say goodnight to you too. Oh well, here's to sweet dreams of grasslands, blue sky, strong breezes and the warmth and safety of the herd.

Linky Love: What Are Other People Saying About Xyrem?

Image by melanie_hughes via Flickr

After spending several years trying to treat my pain, I have come to believe that I should be aiming at the target of sleep. My current thought process is 'if could just get some deep, restorative sleep I might feel a significant difference in my fibromyalgia and fatigue symptoms.' Unfortunately, as I have chronicled here on OMA&P!, even with religious use of my CPAP machine to treat my sleep apnea, other sleep disorders like delayed phase disorder and a lack stage 4 deep sleep every night thwart my best effort.

My revelations impress upon me the fact that fibromyalgia is truly a brain disorder that affects both pain regulation and sleep. I think the medical specialty of neurology is better suited to treat fibromylagia than rheumatology. Current, I see a neurologist who seems to have a lot of ideas about what we can try. I found her after I felt like my rheumatologist had no more treatment options to offer and I decided to stop wasting my time seeing him.

After receiving a comment from Jolene at Graceful Agony: Living your best life despite chronic pain who happened to write a blog post this week also about Xyrem, I decided to check out what other people are saying about Xyrem.

Xyrem: Some Questions and Misperceptions

This is an article from the Talk About Sleep website, which I frequent for information about CPAP tricks and tips. Apparently persons with narcolepsy use Xyrem to help treat this condition. It seems that some people are having good results with Xyrem for this condition, but fibromyalgia is not narcolepsy.

Xyrem Sounds Promising

There seems to be a lot of chatter over the the Daily Strength Fibromyalgia Support Groups about Xyrem being a promising new treatment for fibromyalgia. Interspersed are some accounts about side-effects and negative experiences as well. The main point being made is that fibromyalgia disrupts sleep patterns and person with fibromyalgia typically do not get enough deep sleep, which worsens pain and fatigue.

I also stumble across some older articles at ProHealth.com and the National Fibromyalgia Association websites, but nothing within the past year or so. There are some recent message board comments at ProHealth about Xyrem--to check it out click here.

I don't know that I am going to be trying Xyrem any time soon. My little trip around the Internet today has raised the issue that my medical insurance may not pay for this medication since it is not currently FDA approved to treat fbromyalgia. Right now, my neurologist is not convinced this is a good option for me. When I last saw her at the beginning of February, she planned to call my sleep specialist and discuss this and his other recommendations for me. I guess I'll find out what she decides at my next appointment in a month or so.

On a more happy note....

Today's post is brought to you by Happyneuron.com. Did you know that something as simple and easy as playing games can help the cognitive problems experienced by persons living with fibromyalgia? So why not have some fun beating fibro-fog by playing brain fitness games at Happyneuron. Their scientifically developed games stimulate your attention, language and memory skills. Try their games for free by clicking brain fitness and sign up for a risk-free 7 day trial membership.

Related articles by Zemanta

• Former date rape drug reincarnated as answer to unmet medical needs (scienceblogs.com)
• Xyrem: How Does This Make Sense? (ohmyachesandpains.info)
• Sleepless nights 'shrink your brain' (telegraph.co.uk)
• An end to the cumbesome CPAP? Provent is a prescription... (whuffie.tumblr.com)

My Routine: Trying to Get a Good Night's Sleep

Image via Wikipedia

To die, to sleep;
To sleep: perchance to dream:
ay, there's the rub...

~from Hamlet by William Shakespeare


I used to love to sleep, put my head on my pillow each night, drift off to dreamland and enjoy a restful slumber. I loved sleeping in on the weekends. I had no problems going to sleep and getting a good 8 hours in every night. Insomnia was a rare occurrence. Dreams were my refuge from the world...

Not any more.

Chronic illness changed my life in so many ways, and one surprise was the development of not just one, but multiple sleep disorders! Now I have problems falling asleep, staying asleep and being a light sleeper. I have gone from needing 8 hours of sleep to 9 to 10 hours a night. I was finally sent for a sleep stu

Image by babblingdweeb via Flickr

dy in 2006 and was diagnosed with sleep apnea and problems getting enough deep, stage 4, sleep. I also have something called delayed phase sleep disorder, where my body clock is set incorrectly for time zone I am living in: check out the widget in my blog sidebar to the right and you can see what I mean.

I treat the sleep apnea by using a CPAP machine. The CPAP fixed the sleep apnea, but the other sleep problems persisted. When I was diagnosed with dysautonomia and started treating it with a beta blocker in 2007, my pounding heart stopped waking me up in the middle of the night. But I still had problems so I was prescribed a medication to help me get more deep sleep.

My current sleep doctor

Image via Wikipedia

has suggested a few other medications to try too. He also recommended trying gradually going to bed 30 minutes early each night over a period of time to get back into a schedule that fits the Pacific Time Zone. He also mentioned that some people just stay up 24+ hours and reset their clock by not going to sleep one day and waiting for the next night to go to be at a more appropriate time.

So guess what I did Thursday?

You'll find the answer in my next post...

Related articles by Zemanta

• How I Solved My Problem Sleeping (lockergnome.com)
• Obstructive Sleep Apnea Linked To Type 2 Diabetes (battlediabetes.com)
• Can't Fall Asleep? Try These Tips (fitsugar.com)

My Routine: Am I allocating my time optimally to be able to do a variety of activities?

The final question posed in my post Can Routine Help Me Manage My Fibromyalgia? is Am I allocating my time optimally to perform health maintenance, do home chores, have a family/social life, and engage in satisfying hobbies?

The answer to this question is, "Probably not."

First, I have a confession to make: home chores get short shrift in my routine. Chores are the hardest thing on me physically: I've tried to make chores more fibro-friendly with limited success. Some of the items on my "Not To Do" list include things like lifting, bending, reaching, standing for more than a few minutes and repetitive movements, which is what household chores require. I wish I had the money to hire someone to help me with home chores, as this is really what I need to get these done. It's funny how my hubby and friends disappear when it's time to tackle the household chores ... and I can't say I blame them!

Since I feel bad almost all the time, I want to do things that are fun. So I like to devote most of my time to my hobbies and social life. I find that it really helps my mood and outlook on life if I schedule something fun to do every day. Plus, distraction is the number one tool I use to combat my pain and fatigue, and what better way to distract myself than doing something fun.

Health maintenance is definitely already a part of my daily routine, from checking my blood sugar, injecting Byetta (exenatide) before meals, taking my other medications, cleaning and using my CPAP machine and countless other little things I do (and I can't seem to remember right now!) A lot of my focus is on my health, which is why last year I established the goal of readjusting my focus from treating my chronic health problems to living my best life despite them.

Obviously, if I was allocating my time optimally I would not need to challenge myself to create a routine during the month of July, now would I.