I have been using the Respironics Full Face Quattro Mask since I started CPAP. I believe I made a good choice for a fist mask thanks to the help of the sleep lab letting me try on many masks during my study. This mask has not been perfect, but many of the lessons I learned can apply to all masks and all types. These are the tips that helped me with 90% of my mask troubles. If you are struggling try these some of these simple fixes that could make things better.

1.) How clean is your mask? Do you clean it every day? Mine gets slippery and won’t even hold even my wimpy 9cm of pressure if it isn’t 100% free of facial oils. Also even if you mask is 100% clean, wash your face before you go to bed. This helped me with my seal, but I have heard some others claiming that using a moisturizing cream helped them. I think these people have abnormally dry skin, so try at each end of the spectrum. I know my Father-In-Law swears by using Bart’s Bees Wax on his nasal pillows. Try each of these depends on your skin type and preference, but give them a try.

2.) When you first adjust your mask, if you have CPAP equipped with a “Ramp” feature do not use this feature when adjusting your mask. Put you mask on, start the machine at “Full Prescribed Pressure.” If you adjust it for the smallest pressure, it will just blow out when it reaches the maximum.

3.) Being a normal man I never read the instructions, but every mask has a prescribed order for tightening the straps; use it! After struggling, reading the directions helped me a ton! It sounds so simple, but some “pointy-head” put them together in that order for a reason.

4.) Are you having trouble getting used to the fit and feel of your mask, or your prescribed pressure? You need to make friends with your mask and CAPA! IT IS your friend, not your enemy; it will lead you to better health, if you learn to work together!

To make friends with your mask, talk to it. No, I’m, just kidding. Start by getting used to it by wearing it around the house during your normal waking hours. Watch TV, read, knit or do some activity while wearing your mask. You will NEVER get comfortable enough to sleep with your CPAP and mask it can’t be comfortable with it during the daytime. I know I can’t wear my mask with glasses, so I can’t see the TV, but I can still cruse the internet with my iPhone at close range. Make friends with your equipment! (Unless you have small children like I do, then it is a good way to have them stop coming into your room at all hours of the night, as they are more scared of you than the monsters under their beds!)

It hasn’t been easy, but I have made it to week three. I have learned a lot about sleep apnea and have been thru a lot of experiences that I still cannot explain. I am sleeping thru the night and my seven day average for hours of sleep is now up to an exact nine hours and my thirty day average is at an exact eight hours. Only three weeks ago I was only sleeping four to six hours; what a change! My energy is up, my mood is up, I shoveled snow for only the second time since I started CPAP and only the second time in three years. My life is being restored in the night! I have become sleep addicted, spending most of my day thinking about sleeping. I get into bed as quickly as possible and stay sleeping as long as I can.

I have had some noteworthy mask difficulties. I have had to really clamp it down the past few nights and so tight it has left marks on my face for a few hours in the morning. My mask was leaking in the same place every night and blowing air right into my eye. I believe it to be a seal failure because there is a slight deformity in the seal when I examined it. Almost like it melted, stretched and then cooled. I might have used water that was to hot when I washed it, but it was below the temp I thought it would melt at.

My DME supplier said that “You need to expect leaks to happen, just go back to sleep,” “No, I expect this to be 100%.” This is medical equipment and being the cost is so high I don’t think it is beyond asking for superior results. What if I paid my bill to them in the same manner, you know, deduct 25% for leaks in my wallet. When they called about the balance I could just say, “You need to expect that sometimes people won’t pay their bills, just go back to your paperwork.” This is the same rep that gave my wife an auto-PAP for a titration study and didn’t bracket the pressure settings around her current prescription.

I want to try the Respironics Comfort Gel Full-Face Mask, but I confess it might end up as a Christmas gift because of tight finances. At over $150 even from discount internet suppliers these masks are a little too costly for just trying on a whim. I have heard great things about the Gel Masks fit and I am now desperate to try one. At my sleep study she had me try on a few, but they made my face feel like it was as long as a horse. Given the tradeoff between feeling big and not leaking, leaving unsightly lines or pressure sores on your face, I’d take the horse mask if it is comfortable.

I called the sleep lab to see about setting up a mask fit appointment, but was told the person who normally does the appointments left and has no expected return date. It sounds like they were fired, furloughed, or had a health or family issue. The person I spoke with said they would speak with their boss to see if someone was available to do an appointment and then return my call. That was several days ago and I have not heard a response. I hope this does not signal the end of their mask fit program, as it is a valuable service. At the end of the appointment they basically give you a loner mask to try out of their inventory. At a cost of several hundred dollars apiece, it is a rather expensive chore to test masks. Being that you cannot sell discarded masks on the used market, there is no way to recover the cost of a bad choice. Even using your insurance that only covers masks every six months or once per year, means you will be stuck with your failures for the same amount of time.

Personal Changes

I need a life! For the past three years all of my activities have been sedentary, to protect and save my body for the future, but now I have all this energy and limited places to spend it. I can put the effort into the house and as it is winter it is a good place to start, but by no means is it the end. I need more. Things have been changing: as I have gotten stronger I have begun to reclaim the household chores I once pushed over onto our teen age son Tyler; snow shoveling, grass cutting, grocery carrying and such a like. I haven’t been reading as much as I had been, haven’t been blogging or writing in my Personal Log as much as I had been. This has all been a great blessing and is not being met with complaint by me, but only observation.

I have had one major setback in one of my areas of personal change; I have relapsed to using tobacco. I have had precious few breaks from this habit since age thirteen, but I am gaining ground. I have been taking Zyban and I have made two attempts to quit in the past few weeks. The most successful was 5 days, but a life and death issue within my extended family threw me off the wagon and out of personal balance. I will make a fresh effort this weekend.
I have been checking by blood pressure and sugar very regularly and have watched it rise and fall with my tobacco use. I believe that I was trying to stimulate my metabolism with nicotine and coffee so fight the effects of sleep apnea. My hope is that because I am getting proper rest I can now back away from the stimulants. I have begun to cut my normal morning coffee with decaf. Starting first with a ratio of five to one and progressing to a full fifty-fifty. I don’t know how far I will progress, as I have noticed my consumption reach new heights in an effort to boost my caffeine intake. I think I will hold here until I see my volume decrease.

Improving Health?

I think I might be looking at my insulin resistance going away! Yesterday I was craving sugar bad, all day! After I had eaten a full dinner, two PayDay bars and thirty whoppers (the small malted milk balls not Burger King) I was still hunting for more sweets. I was a little apprehensive to check my blood sugar before bed, as it should have been thru the roof. Less than two hours after a full meal and with all that quick sugar, I thought it would be an out of sight reading, but it was only 106. I was not expecting it to be below 200, but what is this? No wonder I was craving sugar, I wonder how low it was before I consumed all that stuff? How accurate is this type of observation, as it is not a very scientific in method. Watching changes in me has become another sedentary hobby I will have to break. I think the observation is valid, but the conclusions in questionable. Yet, if I keep it general by saying my sugar was lower than I expected, the observation can remain valid.

As my RA symptoms have been resolving I have noticed that not all of my pain is gone. The ugly truth is that I still have the pain from damage done by the RA: I still have shoulder trouble from blowing out my shoulders lifting weights, still have a trigger finger and still have some nerve pain in my feet; it would be disingenuous of me to say otherwise. Yet, the inflammation and swelling is gone from it familiar places, the fatigue is nonexistent and there is zero morning stiffness. That is at least progress especially when accounting that I have not taken a Humira injection in 3 weeks.

I now face the challenge of explaining all of this to my Physicians in a way that is coherent and factual. I actually want to scream “God showed me how to get better!” but I haven’t even posted that on this Blog yet. Maybe that is my next step, to tell the whole story and what a story it is too! The story that stretches from my writing of “The Longest Day” until today, but I feel it is missing a dramatic climax. Telling the tale of “The Third Day” could be the ending I am looking for, but I don’t feel I can exclude the recovery process though it stretches before still. I might have to leave that out of the story, as those pages are not written in the days of the book of my life yet and I need not consider them as they will arrive in due time and Lord willing be less dramatic.

ManLoosed@Home

Traveling with CAPA

There is a lot of things that go into making our CPAP function. We might have mastered this art at home, but on the road can be a little more difficult. As I said in the second installment of CPAP tips; one of the things you need to obtain is a letter from your prescribing physician stated that this is necessary medical equipment. This becomes important when traveling especially internationally and passing thru customs. For me, I would will be packing your CPAP in checked baggage, but for those who desire to “breeze” thru the airport without stopping at the luggage carousel, there is a steep learning curve! Below is a basic checklist for whatever you carry choice might be.

CPAP Travel Checklist:

 
-Travel letter from you prescribing Dr. certifying your need for CPAP treatment.

-A plastic bag large enough to fit your CPAP in. (See TSA link below)

-Make sure you have the right power adapter for your destination, especially internationally.

- Bring an extension cord, just in case an outlet is not close enough to your bed.(Very hard if you’re traveling internationally, to get the right one!)

-Check to make sure that all your CPAP equipment and accessories are packed.

-Make arrangements to get distilled water at your destination. (More on this below.)

Hotels and CPAP:

I have heard of cases in which the lamps and alarm clocks in hotel rooms are hard wired to the wall and there was no outlet by the bed. Outlets were supplied for laptops and cell phone chargers, but these are sometimes a great distance away, be prepared with an extension cord or be prepared to ask for one at the front desk.

Do hotels have distilled water available? I wanted to give you a good report that hotels are so concerned their service and our comfort that they would, but alas, service truly is dead. After calling a few hotels today to see if they had distilled water for their guests, EVERY phone call was negative. One lady seemed not to know what distilled water was, asking me, “Are you sure you don’t mean bottled water?” What a disappointment this is! I am not a business traveler, so I have never need to iron clothing while in a hotel; on vacation I don’t care if my shorts have a few creases in them. I understand no supplying waster for a CPAP, but so many people need a clothes iron I was sure they would have it! To be fair these were average hotels, not 5 start locations, which I suspect might go to the store for you if you needed distilled water.

In the TSA’s Own Words:

TSA’s Page on CPAP

TSA on Medical Liquids (Our Distilled Water)

It might be worth is to print this page, so you can give it to them in the event you carry on your CAPA. If the people at the security screening even know what a CPAP is I will be surprised, let alone to know THEIR OWN handling procedures. Do I expect this of them? Frankly yes, not only do I have OSA, but I am also on immune-suppressive therapy for RA; this makes me vulnerable to germs! With how many people pass thru security checkpoints in a day, I might as well attach the CPAP to the hose and drag the whole assembly thru the restroom floor!

CPAP and the Airlines:

Because a CPAP is considered necessary medical equipment, it supersedes any airline directive to allow only one carry on. Unless I am starved for space in my checked baggage I won’t be carrying my CPAP on the plane with me, as I said before. If it was an international flight lasting for >8 hours, I would consider carrying it on, but not wearing it. I would rather snore at everyone on the plane! Just looking at the amount of regulation and hoops for O2 is enough to make me buggy! Looking at the list of approved oxygen concentrators, it seems as if the flight attendants might not allow you to use it anyway. Here is what one airline has about “Medical Equipment” and specifically O2 concentrators.

United: Worst Explination! No Specific CPAP Statement.
Southwest One CPAP: SW On CPAP
Continental: On CPAP and Vents
Delta: Look under “Assisted Devices”
JetBlue: Best Policy So Far!

It seems that I must notify the airline two days in advance if I want to use it, not if I just carry it on. There is a loop hole there, but the thought of getting to the plane door only to be told I MUST check my CPAP in that flimsy bag, is horrifying! Print these policies out, so you have a chance to fight back if they try to break or ignore their own rules.

Summary:

I would check it. When I travel it usually isn’t just for an overnight, but an extended stay on a vacation. Normally I am traveling with my family and we have a ton of luggage anyway, so a little extra for my CPAP is worth it. If you still want to take your CPAP as a carry-on you are entitled to! Just make sure you are prepared. Even if it was OK on your flight to your destination, it doesn’t mean it will be just as OK going the other way! Prepare to be challenged, be ready to give an answer and hopefully you won’t have to teach the TSA and the Airlines about their own policies. Have a nice trip and sleep well on it!

In the November 2009 issue of ENT Today (vol 4; number 11), there was an interesting article titled “Evaluation and Management of Patients After Unsuccessful Sleep Apnea Surgery.”

What I found particulary informative was the picture that came with the article which I have reproduced below. It is basically a list of all the companies who make oral appliances specifically for patients with obstructive sleep apnea. How nice!

Regardless of the company, they all have the same basic feature of having both an upper and lower occlusal guard which can be adjusted in order to bring the lower jaw forward to prevent obstruction due to tongue collapse. Though our office does not offer any of these devices, oral surgeons do. There are also OTC oral appliances one can obtain (which of course do not work as well).

CPAP Tips #2: The Best Advice I Got!

The Best Advice- Starting off Right

The best advice I have ever gotten is to get a copy of your “Sleep Test” results AND a copy of your prescription for yourself and if you are a traveler a letter stating that this is  a prescription and medically necessary device. The test results from ANY medical test are your property! They are your results and your prescription and you by law have access to your medical records! You most likely will not understand all of the results, especially the raw data, but I will point you in the right direction for some help with this in a minute.

Results: Can Tell You More

A copy of your test results can tell you a lot more than just pass or fail! (Going into my sleep study it was my sincere hope to failed with grace!) This can tell you the average number of events you had every hour, the length and types of events, your lowest O2 readings during the night and what type of sleep they observed you to have. There are two parts of the sleep study you might need; the first is a summery page, written by the sleep Physician and the second is a graph of the whole sleep study and titration (if you had a split study.)

Useful information is not always communicated by your physician, but still can be very important. On my sleep study summery page there was a note, which my physicians never discussed with me: “No supine (on back) or REM sleep was observed during the test or titration. Titration pressure might not be adequate.” An important detail, as the most sever events occur on your back in REM sleep, don’t you think! That led me to request a data capable machine from the DME supplier so I could monitor if my AHI number increased to a place that I might need re-titrated. I can also use this one piece of information to convince my insurance company to pay for a titration study or home titration study sooner than they want to. I’ll just show them that note!

For help understanding this information I recommend seeking help from the American Sleep Apnea Association on their FORUM page. There is a section specifically for understanding your sleep study. Reading thru the information on others studies can help you understand yours. Feel free to ask any questions that remain, as their moderators are very knowable and ready to help you. These are great people who I can brag on enough for their role in educating me. (You can also find me there from time to time, but under a different name.)

Here is a link: ASAA FORUM

 Rx’s: Suppliers Need Them!

 A copy of your prescription is also vital! While your “sleep specialist” or GP might send your Rx to DME supplier of your or their choice; you can use this piece of paper (Rx) to SAVE MONEY! I have found that you local home medical companies cannot beat the prices that you can find from reputable suppliers on the internet. So if you are paying for this equipment out of pocket, this is a way to save major cash! Even on the internet a xPAP machine is still a prescription item, so you need your script! Some internet suppliers don’t require “proof” of a script for a mask, but some do.

This in a time saving piece of paper, as the other way for a supplier to obtain your Rx is to call the Physician’s Office and asks them to send them a copy of it. This can take a great deal of time, depending on how organized you Dr. Office is or is not. By having the script in hand, you can simply email them a photocopy. Most will keep your script on file and you will not need to send them a copy every time you place an order.

If your Doctor is to specific or not specific enough on the Rx, both could lead to later problems. The Sleep Lab I went to made a recommendation to the Dr. based on what mask I chose for the titration portion of the sleep study; if specified a specific mask. If your Dr. puts the specific mask on your prescription, all the suppliers must supply you with  that exact mask and can’t not change it; which can be good or bad. If a week after you start using this mask at home and begin to have difficulties, you need to get the physician to write a new script for the next exact mask you want to try. All this can be avoided if you ask the prescriber to write “a mask of their choice” when writing the Rx. There might be times that a DME supplied refused to give you a specific mask you request. Don’t be fooled they can order anything they want from any company, but at times just don’t want to. As with fixed $$ for machines, some don’t want to carry the more expensive masks because it cuts into their money. In this case get your prescriber to be specific and force their hand. The “interface” or mask is the most important thing that is “of your choosing”, so get it done right and don’t stop until you are satisfied! Most internet suppliers will also bill your insurance if they are not excluded, so don’t be afraid to go off and try new mask types. Just know your insurance might not cover another mask for 6-12 months.

My DME supplier has a  mask return program. If I am not satisfied with the mask in the first 30 days I can return it and choose another. This is excellent as masks are normally $150 and up. Some internet suppliers have similar programs that go out to 90 days, but usually you sign up and pay for this service. You must ask your DME supplier if they have a program such as this, they might not tell you up front and it is a pity to find out after that time has expired!

It is also important to know your titrated pressure as you might need this from time to time. Being admitted to a hospital on an emergency basis is one such time that is critical to know this information. Being that you have been admitted for something serious, you could make your situation worse by having apneas events while trying to recover. They can find this information, but usually it will be kept at you GP’s Office which isn’t open 24hrs a day.

( A note about outpatient surgeries: There are special procedures that need to be followed for outpatient surgery if you suffer from sleep apnea. The anesthesia used in “outpatient surgeries” can cause sleep apnea to become life threateningly. Even for a day surgery this might win you a tube down the throat or even an extra night in the hospital to monitor your breathing.)

Links to a Internet CPAP Suppliers:

CPAP Supply USA
CPAP Wholesale
CPAP Plus/Direct
(*These are only examples, I do not endorse one over the other, or guarantee your satisfaction with any of them.)

Dr. Letter: Medically Rx’d and Necessary Device

I will cover this later in the travel section, but this is an invaluable letter to have if you are business or international traveler. To get off to a great start, get a letter on the Dr. stationary and make plenty of copies. This letter is also useful to give to your electric company. Why your electric company? I’m glad you asked!

In the event that you have your electricity disconnected for non-payment or an outage occurs in your area, because you have “Durable Medical Equipment” as a medical necessity, your electric can not be turned off and must be at the top of the list to be restored in the event of a power failure. Before you need it, communicate with your electric company and give them the letter from your Dr. In the event that they lose your payment or there is a natural disaster, your lights will be first back on!

ManLoosed@Home

Not all CPAP machines are created equal! BUT Medicare and most insurance companies only have one billing code for them and pay a fixed amount to the equipment supplier for that code, not the specific machine. This means that DME (durable medical equipment) supplier can make more money by giving you the cheapest machine they can find and collecting the standard reimbursement from your insurance company. It is up to you to find what is the best machine for the money that you insurance will pay out! Some machines can be very expensive , but it might be worth a little out of pocket expense for the right equipment for you.

Some insurance companies, sleep labs or your sleep doctor sometimes contract and set the brands and quality levels of machines that the DME will supply to their patients. My insurance company, for instance, has specified the brand of machine they are to deliver, but not the exact model. My wife and I, who got our CPAPs only 30 days apart and with the same insurance, recieved 2 different machines. I negotiated with the DME supplier for a data capable machine because I am a technical guy and am interested in a machine that was able to measure my nightly AHI (Apnea Hypopnea Index).

My insurance company bought the humidifier, but, by contract, leases the CPAP from the DME. If I ever change insurance companies I can keep the humidifier but must return the CPAP unit. Some other insurance carries do a lease to purchase arrangement; this begins as a lease, but after they verify you have been using the machine (called a compliance check) they will purchase it for you.

Compliance checks are done via a smart card that slips into your CPAP, some transmit data over the internet or via a modem. On some CPAP machines only the hours of usage and number of sessions (CPAP use >4hrs) are recorded. On fully data capable machines enough information is recorded that your DME supplier, Sleep Doctor or even yourself can monitor your treatment by examining the data recorded on the card. For about $200 you can purchase the software and card reader to do this, but only if you have gotten the right machine.

If you are doing this all out of pocket and not insurance is involved, you can save a great deal of money by dealing with reputable dealers on the internet. These are dealers that offer warranties, have a return policy (especially on masks) and have great customer service. Because these are prescription items, especially CPAP machines, most will call you prescribing Physician and request a copy of your Rx. The best way streamline this I will talk about next time!

There are many sleep apnea dangers that most people don’t know exist. While some people may think of it as common snoring, sleep apnea is something that needs to be taken very seriously. In fact, if left untreated, the sleeping disorder can cause death via congestive heart failure. Sleep apnea, (apnea literally meaning without breath) is something that affects men, women, adults and children. It is characterized by a minimum of 10 second intervals between breaths, which result in either a neurological arousal or a blood oxygen desaturation of at least three or four percent. No group of people is immune from the disastrous consequences of the disorder, which makes it extremely scary. Since it’s something at occurs when you sleep, many people who sleep alone don’t know that they suffer from it until it’s too late.

Some of the sleep apnea dangers that can act as symptoms include loud snoring (with periods of breathlessness immediately followed by gasps for air), morning headaches and esophageal reflux. Because of the lack of sleep that many sleep apnea patients suffer from, there are often side effects that can be just as troubling as the disorder itself. For example, many people who have sleep apnea also experience depression, irritability and anxiety. These three things can combine to really mess with a persons head. Imagine feeling depressed and angry all of the time, not knowing that something like sleep apnea is causing your troubles. Many times the side effects can get treated with pharmaceutical drugs, but these do nothing to combat the apnea itself. – Sleep Apnea Symptoms –
What is sleep apnea
What is sleep apnea

Apparently OSA is adrift. They are attempting to handle the “disaffected field” (which is to say, the whole field), by calling people in or visiting them in their homes. But instead of questioning the field, they are finding that they are the ones being questioned.

Most public Scientologists by now are familiar with the abuses, the Policy and Tech violations. They have read the St. Petersburg Times articles, and have read this blog and others. So when OSA shows up, they find themselves being asked about these things.  And they have no answers.

Public: “This whole Ideal Org thing is out exchange. LRH said not to ask for donations, yet that is all they are doing nowadays.”

OSA: “Well, um…you’re right, sure, that’s wrong…”

Public: “We have friends that have been forced to disconnect from their children. That’s wrong.”

OSA: “Well…you’re right, that shouldn’t happen…”

Public: “I’ve read about these staff beatings – is that true?”

OSA: “Well, um, we can’t confirm or deny it…”

Really OSA, this is your “handling” these days? The trouble is, these OSA people know its the truth. They can’t fight it any more. They are not going to confirm it, but they can’t deny it.

Meanwhile, several people have mentioned the exodus from Clearwater that is now in full swing. A real estate agent there who handles most of the properties owned by Scientologists, now has 78 former Scientologist homes up for sale.

What’s the opposite of “Mecca”? Maybe “Diaspora.”

I think I’ve got it all down; I hope. It seems that learning to sleep with a mask on is easy when compared to the things the body needs to relearn. After having been sleep deprived and oxygen starved for years, there might have to be some retraining. I started sleeping thru the night for the most part, but there was still one thing waking me up; the need to “GO”. Yes I said, “GO.” When I first started to learn about the symptoms of sleep apnea the one that seemed like it had an obvious reason was “GO-ing several time during the night.”

I figured it was because I was wakening so many times during the night that the “super-hold-it” response during sleep was not being activated. I never thought I had hurt my body this badly by not getting my sleep apnea treated. Here is what the American Sleep Apnea Association says about “GO”-ing:

Nocturia, or nocturnal urination, is sometimes a symptom of sleep apnea. In fact, nocturia among younger individuals–who are less likely to have other medical causes of nocturia–is a strong indicator of sleep apnea. While the precise relationship has not been thoroughly studied, it appears that the most likely reason patients with untreated sleep apnea have more frequent urination at night is related to the increased pressure in the right side of the heart. This increased pressure is usually the result of low oxygen levels in the bloodstream caused by the apnea events: when oxygen levels fall, the heart works harder to get oxygen to the brain.

An increased pressure in the heart is a sign that there is too much liquid in the body: when the heart receives the stimulus of the increased pressure, higher levels of a hormone called atrial natriuretic peptide (ANP) are secreted. ANP is a diuretic that is associated with the increased need to urinate.

When sleep apnea is effectively treated, nighttime urination is also reduced. Studies have shown that ANP levels in patients with untreated sleep apnea are increased and levels reduced in patients using CPAP effectively. Remember, not all causes of frequent urination are related to untreated sleep apnea; prostrate problems, for example, may cause increased need for urination. Discuss any concerns you may have with your doctor.

To much pressure on the right side of my heart?! Good grief, that’s a little more serious than just not sleeping well! That blows my idea of just being “to awake to hold it” right out the window! I wonder if this also wasn’t the reason for my excessive sweating. How badly could this have screwed up my body?

It has taken me a full 2 weeks on CPAP for this to go away! After the first 7 days my body learned I wasn’t going to die in the night, but it took another 7 days for my heart to learn I wasn’t drowning and I could stop trying to “GO” my way to better sleep.

I have been sleeping thru the night! No waking up to GO! Just sleep from 10:30PM-5:45AM, yahoo.

Kevin Sinclair, Minister to Youth

Back in the comfort of my apartment nestled nicely between the Medical Center and the Third Ward, I am trying to allow my memory to drift back over the course of this week, so that I might recall the soft spaces in my soul in need of kneading and coaxing so that yet even more understanding might surface. Today, a ragged band of weary missionaries, healers, builders, strugglers, saints, sinners, believers, doubters, and spiritual-paupers poured off Continental flight 590 from Peru. In the haze of this cool, sacred Houston morning, we were met by the smiling faces of friends, family, and mystical mixture of the two. Overjoyed to be greeted by one of my youth, Johnny, Susan, and I piled into the Moore’s van with Bill and Rachel. As we shared stories, I could see our breath dancing in the soft blow of the air conditioning, like the wisps and whispers of the memory and remembrances we were attempting to convey. We carried on the only kind of conversation humans are capable of after a red-eye flight and a week of immersion into another world.

What stories can we tell? What words can exhaust the experiences we share on this (or any) mission trip, journey, adventure, battle, struggle, retreat, etc etc etc…?

The difference, it seems, is infinite.

Experience is a powerful tool, and at times it makes all the difference between clarity and confusion. How many times have you heard someone finish a story with, once the story is met with faint chuckles, “Oh, well, I guess you had to be there…”? Yet, are those not the stories that bind groups of people together who, in fact, were there? Our experiences draw us together in a way that is very much human AND divine. I love the story of the Incarnation and how this idea becomes the fusion of flesh and Word, blood and spirit. God weaves us together into a patchwork of journeys–some victorious, some devastating–that allow us to make sense of our experiences together as friends and fellow-pilgrims on this road we call life. Such a journey was shared this week.

The heavenly sound of children playing, the crow of the roosters, busy echoes of the OSA House, the piercingly loud door-bell, the putter and cough of the exhaust pipes as our bus climbs the hills of Collique, and laughter and conversations shared by the team over Peanut Butter & Jelly Sandwiches prepared by the loving hands of Charis Smith and company…these are the fragments of experience I brought back to Houston with me.

Nonetheless, these experiences are not enough. We must return not as weekend warriors who have done our good deed for the year, but as the Prophets and Preachers who proclaim into the darkness, “Behold, God is making all things new…” while still clutching onto the words of Saint Andrew at the feeding of the hungry multitudes, “…but, what is this among so many?” Marco told us today that we saw over 1,500 people in the clinic, and after the first day I spoke with Vince in the optometry office about how things were progressing, and he informed me that we had passed out 78 pairs of glasses. With a mixture of sincerity and levity, I said, “Wow, that is 78 people who before coming here could not see…Jesus didn’t even heal that many blind people in the Gospels!” After my somewhat flippant response I was immediately reminded of a verse that has plagued me for years:

“Truly, truly, I say to you, he who believes in me will also do the works that I do; and greater works than these will he do…” (John 14:12)

For the longest time, I thought this verse meant greater in quality (Resurrection, Miraculous Healings, etc), and as one who does not have much of a taste for the pageantry of Benny Hinn, I put these red letters aside for another day. Now, here I stand, a stranger in a strange land, nose itchy and throat hoarse from the dust of the waterless earth of Collique, this text emerged in my soul once again. When Christ left, he did not leave us to do what we could with what we have–Christ gives us himself. He gives us himself in the form of the Holy Spirit…he gives us himself in the form of Community…he gives us himself in the creativity of the God-searchers and Christ-followers who first established hospitals, orphanages, monasteries, social programs, homeless shelters, and so many more things We do when We are at Our best…he gives us himself the skillfulness and discipline of doctors and carpenters and the giftedness and compassion of teachers…he gives us everything we need to be all he calls us to be. Every eye exam Susan Young gave, and every pair of glasses Vince and Anna Beth meticulously organized before the whole team arrived, was one person…a whole, entire human being…given the gift of sight so that they like the blind man might declare, “All I know is I was blind…but now…I see.” Every pill passed out by Patti is a stepping stone on the journey to wellness for a people who otherwise have nothing. Every nail driven deep into softened lumber by Johnny is a building block of not just a home, but space for a family to discover dignity. Every craft Melissa helped the children make becomes a gift joyfully given to a friend, parent, or one of us by the children…for “it is in giving that we truly receive,” and these children–these dear, sweet, wounded, yet vibrant and bubbly children–who have quite literally nothing are the ones who had to teach us who have so much wealth, power, influence, treasure, and stuff.

So, here I sit in my comfortable apartment nestled in my soft chairs, watch my television, and wrap myself in comfort…and I can’t help but realize that “they” are where Christ is and are who Christ is in our world. But, “they” are not just in Collique. They live in Eagle Pass, Guatemala, China, Mexico, and Houston. They are sleeping on the steps of South Main. They are huddled in shelters trying to make their way home. They walk the halls of our offices and schools, devoid of love and human contact. They are in every city, every town, every village, every hamlet, in every valley, and every mountain on this big, blue planet of ours. So, even with all the good we do as the Church, there is so much left to do. Maybe we pray the words of our Lord, “The harvest is plentiful, but the workers are few! Ask the Lord of the harvest to send out workers into the fields.” (Luke 10:2)

I leave you with the words of Dr. Luis Campos, one of the many people throughout history who have turned a listening ear to God and a discerning heart to the winds of the Spirit:

“…Give them Hope! Hope in Him who is the Maker of the Universe but, ‘…had no place in this World to lay His Head.’ He knows all about poverty…[for] ‘Earth has no sorrow that Heaven cannot heal.’”

In the name of the God who Dreams the Dreams we are called to live out loud, Amen.

Grace & Peace,

Kevin

Please be praying for the OSA mission trip in Peru.  Updates are at smbc.org.  Just click on the “Peru Update” button.

Here is an excerpt from a recent update from Jill Hatcher:

“I decided to act as if this is my last trip so that I could savor every moment. All the sights on the bus. The sound of the bags clicking on the hotel tiles. The sound of the hotel door buzzer. The sounds of horns honking. You know the three short peeps to say hello. The one long horn which means to get out of the way.”

smbc.org

111809

           After the first 3 days I would have said “Awesome.” The last 2 days I was thinking that it wasn’t going well, but after some reflection and seeing what my real stats were I’m back to saying it is going “very well.” The machine stats say that my average night of sleep with the machine on is 7h 45min; I know that only 6.5-7hrs of that is sleep, but the sleep seems to be redemptive sleep so I am not concerned.

                I have heard that for a time you fight “the instinct to survive,” as your mind has learned that sleeping is a brush with death and it refuses to “go gently into that goodnight.” I think that is why it takes an hour or better to get to sleep. I am not dragging into bed ready to pass out any longer; it is more gentile now, like a nudge that tells me I am tired. I reminds me of the Dylan Thomas a poem,  

“Do not go gentle into that good night.
Rage, rage against the dying of the light.”

As if this isn’t the very feeling from deep within me. Set at odds against these words is the promise of the scriptures:

Pr 3:24                   

When thou liest down, thou shalt not be afraid: yea, thou shalt lie down, and thy sleep shall be sweet.

And again,

Jer 31:26             

Upon this I awaked, and beheld; and my sleep was sweet unto me.

                The next day this is what I find, “my sleep was sweet unto me.” How long oho heart will you not remember the lessons of the last night? How long will you choose to remember the nine years before, of the war in the night? Be comforted and take rest oho heart, fear not, for the Lord had removed your terror in the night, he has brought life in the hours that death once reigned and he shall turn back the clock, He shall not hold back the sun as in times past, but he shall return unto you the years that the locusts and cankerworm have eaten, and you shall delight yourself in the abundance of peace.

                At righting this I am in tears. Yesterday, as I read testimonials of successful CPAP treatments it was the same. How did something so simple and quiet sap my strength, throw me into depression and threaten my life.

Surely it is the “little foxes that spoil the vine.” (Song 2:15)

                I want to yell, but will they think I am crazy if I scream, “I’m alive!!!” That is what I feel, but I have no one to share it with. I want to write about it, but who is there to read it? Can I tell this story well? Can I tell this story with all my heart? Should I take an aside to tell this story? Or is this the big story? I am alive…

Heart Minute: Sleep Apnea and Arrhythmias

            Nine years ago my newly-wed wife April were just getting comfortable in married life. We had not been spending the night together before we were married, so there were a few surprises. The first observation was I was a bad snorer, but the second would become more important; I would stop breathing at night. I had never heard of sleep apnea before, but my wife, an RN was fully versed in what it was. Breathing sussation is common for people with sleep apnea, but it was news to me.

            We were newly-weds, our family was growing from 3-4 and didn’t have good insurance, so money was tight.  After discussing the options, the testing and treatments we discovered that after insurance our cost would still be over a $1000, plus a monthly charge for equipment. How could I take money from the household just to get a good night’s sleep? This seemed outrageous and absurd! April was insistent that if I needed it, it would happen. We were newlyweds and the thought of introducing such an unsightly piece of equipment into our bedroom was out of the question.

            I learned to sleep on my side, and for the next nine years this worked well for us. I was hopelessly addicted to sleeping in a stone cold room with no covers because I was sweating the bed so frequently. Two years ago I developed Rheumatoid Arthritis and this condition would change everything. I began to have shoulder pain and in order to sleep I was taking pain killers. I started waking up on my back a lot, having snored myself awake and most mornings feeling like someone had scrubbed my throat with something the size of a chimney sweeping brush. With all this you would think I would be begging for change and a good night’s sleep, but ironically it would not be me who would take the first step.

Hard Lessons

                April began having difficulty with sleep apnea; typical daytime sleepiness, bad snoring at night and during the night I would hear her stop breathing (because I was awake). She went to the Dr. Office to make some life changes; one of the things he ordered was a sleep study for her. She went and found that she had sever sleep apnea; with over 50 events per hour. Yet, there was one more thing that was going to push me toward a sleep study of my own.

                The same week my wife’s CPAP arrived, my Rheumatologist who was treating me for RA, put me on yet another new medication in attempt to get control of this disease. I experienced every side effect listed; including the most horrific, insomnia. I went for nearly five days with sleeping only two to three hours a night after only taking the medication for two days. My insides turned to goop; personality changes, moodiness and nervousness are only a few side effects from a very long list. I only took the medication for two days and I could not sleep for five. 

            A week after being off the medication the insomnia had passed, but still was not sleeping well. I just was not able to catch my sleep up. It began to get worse: I was waking up multiple times during the night drenched in sweat worse than it had ever been, my heart pounding out of my chest and feeling as if I had just run a mile and jumped into bed with no memory. I was trying to sleep, but I was being scared to death at what was happening. I wondered if I would wake up the next morning and if I would ever be right again.

               After several weeks of not being able to ketch up on sleep, I made an appointment with my family doctor and requested that he send me to a sleep study; after taking some history he agreed. I went home to do some research of my own on the topic and it soon became obvious to me that I had been dealing with sleep apnea for quite some time. The insomnia was what threw me past the point of no return without intervention and revealed just how poorly I had been sleeping.

I discovered that many of my unexplained health difficulties, which we assumed were part of RA could actually be caused by untreated apnea. I had dealt with unexplained heart arrhythmia, a deadly sign of sleep apnea! I also learned that some studies have found that 50% of people with RA also have sleep apnea; why wasn’t I warned of this by my RD and Family Dr?

            After several weeks I was only marginally better, I wasn’t having the horrible symptoms of sever night sweats, but I was so tired during the day that I was rapidly becoming dysfunctional. Even after getting back to a normal sleep cycle, I was still becoming extremely tired during the day. I was barely living; my emotions were all over the place. In the weeks ahead I fell asleep driving twice and started limiting my driving, I stopped doing homeschool with the kids as I was falling asleep at 10AM and the house was rapidly becoming a disaster. My life was grinding to a halt. I can fully understand why sleep deprivation is a primary method of interrogation, it shatters every aspect of your soul; mind, will and emotions. 

Sleeping Away from Home

            It took 4 weeks for my appointment at the sleep lab to come. I had been warned by April and Tom, my father in law, that a sleep study was actually an anti-sleep study. My experience was not quite what I was expecting; I slept as well, if not better than I had been doing at home. They did a split study night during the test; a procedure that is enacted when it becomes obvious that apnea is present and they go ahead with titration of the CPAP machine. It would still take another week for the “official results” to be given to my family Dr. When they were in, the result was as expected; moderate sleep apnea. (I am going to get re-titrated soon, as no REM was observed and I was only titrated on my side.) If that was only moderate I hate to see severe! Granted, mine was exacerbated by sleep deprivation and from insomnia, but what would happen next I didn’t expect.

Getting Results

            The day that my GP called with the results I called the DME office requesting that they move my appointment to the desperate pile. They made a same day appointment with me, but it still wasn’t fast enough, so I showed up 45 minutes early. I was successful in negotiating for a RemStar M Pro, which was data capable, so I could see if my AHI went up later after I got into REM sleep one I had adjusted.

I started off very well, the first night sleeping nine and a half hours without waking up. The next day I felt as if I was not longer getting worse, but only marginally better. I began to fall asleep in the chair at 3PM, rather than 10AM or on a good day 1PM. The second night I slept seven and a half hours and felt better rested. I didn’t even begin to feel the slightest bit sleepy until 10PM. I had a busy day and I didn’t feel tired? This was strange! I wondered if I was tired enough to go to sleep? Usually I waited until I could barely walk up the staircase to get to bed, but now I still felt like I could go all night, compared to the normal. This third night I slept seven and half hour’s strait again. Considering I hadn’t slept more than six hours a night for years, I was amazed that I could stay in bed that long. This third morning after was radically different and I was forever changed.

            When I woke up I didn’t feel my normal morning stiffness from RA. I noticed I was full of energy, my thoughts were clear and my emotions were under control. I was shocked; I had energy and strength, real changes! I had to make an AM run to the grocery store for coffee creamer and I discovered how radically different this was. I was walking full stride, something I hadn’t been able to do for nearly three years; I was also pain free and I had the biggest and most genuine smile on my face I could remember. When I recognized this I almost wept.  What happened to me? Could this really be the difference the CPAP had made? I felt as if I had been dead before and suddenly been made alive! In my best estimation and this is no exaggeration, I felt as if I had three times the physical strength I had only the day before. In the three days since this happened the entire house had been cleaned, the laundry is caught up and today I was able to shovel the snow from the driveway. I haven’t shoveled snow for three years.

Concluding Exhortation

            If you believe you have sleep apnea, get tested. If you are not sleeping well, if you snore loudly, feel tired during the day after a full night of sleep; get tested. Nine years after first hearing my wife say, “I think you quit breathing during the night,” I finally got treated. God only knows the things I have been unable or unwilling to do during that time that I could have done. The last six weeks before CPAP were the worst days of my life and the days since starting CPAP have been the best.

               Sleep apnea moves in slowly, like a dark cloud in the night, it gains ground while you are sleeping until this invisible killer makes a home in your bedroom. I let it stay thru apathy and fear and I never even realized this was choking the life out of me in the night and figured I would get it treated if it got any worse, but I never noticed it getting any worse until it was VERY BAD. I understand that the remedy of a CPAP machine and mask seem disproportionate to the problem. You are likely asking what I asked nine years ago, “How can I ever live with that?” I warn you, if you take nine years as I did, and survive; you will say, “How did I ever live without this?”

               It is approaching three weeks since starting CPAP; I have not had joint pain from the third day of CPAP until now. On Thanksgiving this year I was able to throw the football with my son, something else I haven’t been able to do in three years. I continue to adjust to the machine, learn new things and grow each day. I am considering approaching my Dr and asking him to back me off of the RA meds to see if I was misdiagnosed. Time will tell, but even if I cannot I still day say this had improved my quality of life considerably! My wife and I are now hose heads together; we help keep each other compliant and help one another thru the hard spots. We have thrown our yellow lab out of our bedroom because she was the last one in the room who still snored.

ManLoosed@Home

The metabolic syndrome & smoking-related diseases

LRH says in Dianetics 55!, “If one gets himself into trouble by communicating, he should further communicate. More communication, not less, is the answer, and I consider this riddle solved after a quarter of a century of investigation and pondering.”

With that as one of the basic principles of Scientology, one would think that Facebook and Scientology would make a great match. After all, Facebook has the stated goal of “Giving people the power to share and make the world more open and connected.”

Not so fast.

More open and connected? That’s the last thing David Miscavige’s Brave New Church of Scientology wants. That’s why, if they’re going to use Facebook at all, they use it in reverse.

To disconnect people.

To that end, OSA has mobilized a group of Scientologists to act as “Facebook Police.” They are tasked with scouring Facebook for people with “forbidden” Friends. Then they write to people and “advise them” that certain of their Facebook friends are “in bad” with the Church. They are doing this, of course “for your own good” and “just to give you the information.”

It started, as we reported earlier, with JoJo Zawawi advising people that they should disconnect from Sherry Katz. “Sherry Katz has resigned from our Church,” says JoJo. “She is committing suppressive acts and attacking the Church and making effort to pull people off the Bridge. I have personally verified this with OSA Int. I recommend that you delete your Facebook friend connection with her.” She ends with ”xoxox” – lots of hugs and kisses to go with her generalities and character assassination.

Of course, it backfired, with Sherry’s friends, for the most part, standing by her (even if they felt they couldn’t do it openly on FB).

Soon JoJo was joined by Marty Kassowitz. Marty repeats the generalities, and adds that he has “seen Sherry’s attack data.” Oh really? So writing a KR about tech and policy violations is now classed as “attack data?” Read it again, Marty.

Marty has a short memory. He forgets the time he was declared, and how Bobbi stood by him, believed in him, knowing he was not an SP. You don’t have to turn on your friends, Marty. You might at least listen to their story.

The next Facebook policeman to show up? Brittany Sierra Garrett. Brittany writes to a Scientologist, “I noticed that you friended Marc Headley. He’s a Church attacker and flat out doing everything possible to give good Scientologists bad news. Are you aware of this?”

Oh, you mean his new book, Blown For Good? The one where he tells his personal experiences of what went on at Scientology’s International Base for the fifteen years he was there?  The book where he reveals all the craziness, abuse and human rights violations that go on behind the scenes of Miscavige’s Church?  And that gets summarized by Brittany as “bad news.” Yeah, it’s bad news. Bad news for anyone who wants to keep David Miscavige’s abuses secret from Scientologists. Tell me something, Brittany, have you read the book? Then how do you know it’s “bad news”? Because that’s what OSA told you to think and say? What happened to that little thing we call self-determinism?

Then Steven Gary Schlussel joins the fray, warning people about friending a certain person “He is disaffected,” says Steve, “ into other practices and no longer considers himself a Scientologist… I figured you should know.” Just, you know, “for your own good.” Another person sent out the same basic e-mail, to eleven more people.

Anyone who knows the person Steve’s referring to knows that he is a sweet guy who wouldn’t hurt a fly. OK, he’s no longer a Scientologist. So what? Does every single one of our friends have to be Scientologists? Last time I read Article 18 of the Universal Declaration of Human Rights (which the church pays endless lip service to), it stated  “Everyone has the right to freedom of thought, conscience and religion; this right includes freedom to change his religion or belief.” Presumably that includes Scientologists – right OSA? Or is your endless quoting of this document just PR window dressing after all?

As to being “disaffected” with the current Church of Scientology – well, who isn’t, Steve, who isn’t?

Also, perhaps Steve’s memory is short as well. He was the subject of a Non-Enturbulation Order a couple years ago after he left the Sea Org at the Freewinds where he was the music director. That order was shown to anybody in LA who knew him asking that they cut him off from any comm lines into the music business that he might be trying to reestablish. Steve might also think about those who stood by him.

So that’s Facebook to David Miscavige’s Brave New Church – not a tool to “make the world more open and connected,” but a tool to make the world more closed and disconnected.

Maybe David Miscavige will end up banning access to Facebook altogether for Church members, joining Syria, China and Iran.  They, too, were afraid that public criticism and opposition to authority would pollute their followers.

And maybe if people were more open and connected, they’d find out that all this “reliable information” they are getting fed from OSA about their friends just ain’t so.

Bom dia. na aula de hoje vamos estudar sobre a maneira correta de escrever as palavras em nosso português, afinal nem tudo é escrito como pronunciado e muitas palavras possuem certas pegadinhas, que atrapalham em sua escrita. Então vamos a aula.

01. mau – adjetivo, antônimo(oposto) de “bom”: Ele é mau amigo.

02. mal  – advérbio, anônimo(oposto) de “bem”: Ele procede mal.

Observação:

Mal também pode ser conjunção temporal (=logo que): mal saímos, o chefe entrou na sala.

03. Em palavras com final OSO ou OSA sempre com utilize S: Formoso, gostosa.

04. Em palavras com final TRIZ sempre com Z: Atriz, matriz.

05. Verbo PÔR (e derivados) sempre com S: pus, pusera, pusesse, compôs.

06. Verbo QUERER sempre com S: Quis, quisera, quisesse.

07. Final em ISAR (radical da forma primitiva terminando em S + sufixo AR): analisar (análise +ar), pesquisar (pesquisa + ar)

08. Final em IZAR (radical da forma primitiva terminando em Z + sufixo AR): cicatrizar(cicatriz+ar), deslizar (deslize + ar)

09. Final em IZAR (com sufixo IZAR) canalizar (canal + izar), amenizar (ameno+izar)

10. Substantivos terminados em ISA são escritos com S: profetisa, sacerdotisa.

11. Títulos nobiliárquicos terminados em ESA são escritos com S: baronesa, duquesa.

12. Substantivos terminados em EZA serão grafados com Z quando derivarem de adjetivos (qualidades): fineza (de ”fino”), leveza (de “leve”)

13. Vocábulos terminados em ESA derivados de verbos com o final em ENDER são escritos com S: defesa (de “defender”)

14. Final ÊS, se a palavra primitiva é um substantivo: cortês (de “corte”). camponês (de “campo”)

15. Final EZ, se a palavra primitiva é um adjetivo: palidez (de “pálido”), estupidez (de “estupido”)

16. Final ZINHO (se o radical da palavra primitiva não termina em S): florzinha, pãozinho.

17. Final SINHO (se o radical da palavra primitiva contém S no final + sufixo INHO): lapisinho (de “lápis”),  piresinho (de “pires”)

18. Escrevemos com S: ânsia, atrás, através, atraso, convés, empresa, esplêndido, espontâneo, estorno, gás, gasolina, Luiz, maisena, misto, obus, pesquisa, represa, Sousa.

19. Escrevemos com Z: buzina, prazo, prezado (=estimado), talvez, xadrez.

20. Escrevemos X após a sílaba inicial EN: enxoval, enxurrada

Exceções: encher (e derivados), encharcar e enchova.

21. Escrevemos com X: texto, engraxar, faxina, lixa, lixo, luxo, mexer, oxalá, puxar, rixa, xale, xarope, xampu, xerife, xingar.

Escrevemos com CH: bucha, cachimbo, chuchu, cochilar, cochichar, flecha, mochila, salsicha.

23.  Escrevemos com J: berinjela, canjica, gorjeta, jeito, jibóia, laje, lisonjear, majestade, pajé, pajem, sarjeta, viajem(verbo)

24. Escrevemos com G: agiota, argila, gesto, girafa, gíria, herege, monge, tigela, viagem (substantivo)

25. Escrevemos com E: empecilho, encarnar, periquito, cultue, irrequieto, mimeógrafo, páreo.

26. Escrevemos com I: crânio, dignitário, Felipe, ´meritíssimo, privilégio, pátio, possui (modelo para verbos terminados em UIR),  feminino, intitular.

27. Escrevemos com o: bodega, bússola, poleiro, goela, mágoa, tribo.

28. Escrevemos com U: bueiro ,burburinho, bulir, cutucar, tábua, tabuada, tabuleiro, curtume, entupir, jabuti, jabuticaba, Manoel.

29. Cuidado com a pronúncia e com a escrita destas palavras: bandeja, caranguejo, beneficente, beneficência, magnificente, prazeroso, prazerosamente, hilaridade, bicarbonato, figadal, meteorologia, reivindicação.

Resumindo estas 29 dicas, mas como sabemos o português, é uma caixinha de supressas e a sempre exceções ou uma mudança ortográfica.

Qualquer duvida poste um comentário, amanha as 5:00AM tem mais.

Bom estudo e até amanhã.

Invítame un café

lizard runs across floor

bird call, another, another

too many to digest

at once

shower

wash clothes for first time

feeling civilized in the middle of rainforest, feeling clean like the

white egrets

on lawn.

termite nests high in tree

low in tree

on ground

3 species.

dipteran parasitizes nest

larval stage

beautiful intruder.

i feel like that larva.

1 species of vespid wasp

for each tree species,

1 nationality

for each tent at Sirena.