Sick of being sick

Up until very recently I could honestly say I didn't feel "sick".
Now I'm not sleeping, sleeping too much, dragging ass and barely able to move way too often!
In my head I'm moving a million miles an hour but the reality is I hate tv, can't concentrate enough to read and find myself staring at the walls for hours. And I'm always amazed at how fast yet how slow the days go by.
I'm tired of sitting in the house.
I'm tired of sitting on the porch.
i want to DO something!
Tried the movies... fell asleep! An expensive nap.
Not to mention, fun running low on oxygen.
I'd sob if it didn't make me choke.

The Vest

Today at PT I tried "the Vest"  which is exactly that; a vest that inflates and then shakes the heck out of your lungs.  Weird but kind of comforting feeling.
Tammy put it on me for ten minutes.  It was so much better than having someone pound on your back to loosen the phlegm.  My cough was totally different after I did it.
It isn't approved for use in Pulmonary Fibrosis patients but is widely used in Cystic Fibrosis.   Tammy thinks I will qualify for use because of my history and symptoms.  I hope so.  Damn machine is $16,000.    Total madness!   Gotta get an Acapella flutter valve.

Ann & Glenn are packing the truck tomorrow for the move here!  Sold their house in 5 days!  How's that for good karma?

Another sign of oxygen deprivation

Tammy at PT was the first person to tell me about nail clubbing.  I've since found it also reported on a new site called lupuscheck.com

My nail beds started looking "puffy" a while ago and I thought maybe I was just imagining it.  Had I put my hands together, palms outward, nails facing down, thumbs towards body, I would have easily seen the something was wrong.  Rather than touching my nails now curve out over slightly puffy beds.   This is called clubbing and is a sign of oxygen deprivation. Not only to the nails but to other organs of the body.

SS Disability Approved! Yeah!

I receive my approval today!  I won't receive a check until mid November but at least I know it is coming.  Hopefully it will take some pressure off of Chris who has been working 6 days a week for 12 to 16 hours a day.  I don't know how much longer he can keep up this pace.  He is earning great money and we aren't buying anything more than food but we are still behind from last year and my toal lack of income since April.

My wonderful sister sent me $ to be used for a portable oxygen concentrator.  now if I can just find one locally I will be happy.  I can't find one so far.  Making me crazy.   I have called EVERY oxygen supply company in the city.  Might try Austin.

High Altitude Simulation Test

High Altitude Simulation Test (HAST) is a test that can determine the need for supplemental oxygen in patients who are going to be traveling by air or at higher altitude.  If you have a chronic lung disease (COPD, emphysema, chronic bronchitis, severe asthma), and you are considering a trip by airplane, or a trip to a higher elevation, you may need this test.  If you are alread on supplemental oxygen, you may still need testing.  This is simply the safest and most accurate way to determine if you will need oxygen at higher altitudes, and exactly what level of oxygen keeps your oxygen saturation in the safe range.  The FAA regulates that airplanes maintain a cabin pressure of bewteen 8,000 to 10,000 feet above sea level.  Rather than get into barometric pressure and partial pressure of gasses, this simply means that available oxygen has just dropped by about 6% compared to sea level.  The air we breathe at sea level contains 21% oxygen, but when flying, or at elevations of 8,000 feet above sea level, the air now has about 15-16% oxygen (compaired to sea level).  In the past, we would simply guess based on a patient's oxygen saturation.  If a person had an oxygen saturation above 95%, they were good to go, if not, they may need some supplemental oxygen in-flight.  Many hospitals and pulmonary function labs now offer HAST to accurately determine the need for high altitude oxygen, as well as the exact amount that will keep patient's safe when flying or traveling at higher altitudes.  If you are already on home oxygen, testing can determine what level you will need in-flight.  The test can be done several different ways, but basically, a mixture of nitrogen and oxygen is delivered to the patient to simulate the available oxygen at high altitudes.  During this time, the patients vital signs are closely monitored, as is the oxygen saturation.  If the saturation drops below a set point, usually 85-88%, supplemental oxygen is titrated to keep the saturation in a predetermined range (usually 88-90%).  Some guidelines recommend other screening, such as a 6 minute walk, arterial blood gasses, and other testing to determine the need for HAST, but the bottom line is there is a better way than simply guessing and estimating the need and the amount of oxygen needed for lung patients who travel by air, or those who plan to travel to higher elevations. 

Why you should stay healthy. Portable oxygen.

The major reason to stay healthy is that if the sickness doesn't kill you, dealing with doctors staff and insurance companies will.

The latest saga is trying to, yet again, get a portable oxygen concentrator.
I think the insurance companies figure if you are sick wnough to need oxygen then the Homefill unit with two bottles that only last enough to be out of the house a maximum of 12 hrs a day (set at 2 liters)are all you deservw to have. If you need more you have to buy it yourself.

So what happens if you want to go visit your grandchildren who live 2 hours away? Well you ccan go but you'd better plan well and get home before your tank runs out or you can ask for a loaner portble that your oxygen supplier says you can get if you sign with them. Of course it is NEVER available.

I missed a step-daughters wedding, a shower and a business trip with my husband because none were available. Try finding a rental and you run into a brick wall.

Back to the oxygen supply company.... if you have BC/BS don't try finding another company that says they can fill your need for a portable. They won't. BC/BS pays the suppliers on a buy to own program that makes it impossible to change. Anyone who says they will supply you changes their mind when they find out they might lose the $3600!!!!!! that BC/BS paid for the 1st year. Not to mention the $71 a month co pay.

End of saga 1.

Saga 2
I've been on 50,000mg of Vit D a week for more than a year. Need a refill but the rhumatologists office wants me to have bloodwork to make sure I need it. Haven't NOT needed it forever and other meds haven't changed so why spend $250 to check it? Well it isn't out off pocket they say so why would I complain. But the dr is on maternity leave so no open appts until Aug. Ok, bullied them into a bloodwork visit only on Tues.

Saga 3
Need to have my annual GP appt to have calestarol checked. Call the office to find she isn't practicing anymore but I can get in with her replacement at the end of Aug. Fine for me but hubby needs his diabetes meds renewed. Sorry they can't do that. And no he can't have renewals without an appt. at the end of Aug. So what if he strokes out inbetween.
Tried to find another GP and you would have thought I was asking for donations they way I was laughed at for wanting a quick appt.

Saga 4
Tried to change hubbys appt with his pain dr (too many back/neck/shoulder surgeries) Dr's assistant got snotty about if he had enough meds to last an extra week. She said he'd better not because they really regulate it. WTF??? They drug test him, at his expence, to make sure he uses only what she prescribes.

And should I mention the electricians who wired our house when it was built? Had flickering lights and found out we were lucky the house didn't burn down because the breqker box had wires arching. Just out of warrantee but time to go have a talk with them.