Sandy goes to Washington, D C

Good Evening my friends trust you all are well and breathing easy these days. Myself I got a little run down from the big Washington D.C. trip but let me tell you it sure was worth it. It was the first United For Lung Health Advocasy Day 2008. There were 18 various organizations that joined us as well as about 70 participants, patients, caregivers, etc. All the delegates for the states were teamed up and of course I was team Florida. My team consisted of Bob Campbell who is an Alpha 1 patient and John Walsh who is the President & CEO, co - founder Alpha 1 Foundation what an awesome team. Our goal was to meet with various Senators, Congressman/women, Representatives, to spread the message about funding needed for Lung health research, HR 552 Pulmanry and Cardiac Rehab. Act., HR 3904 Family Asthma Act, Environment/Radon increased funding for HR6 The Diesel Emission Reduction Act.

I was asked how COPD/Emphysema has changed my life, well we all know that answer except for the lay person. I heard someone say is Asthma catchy ! The first day I met with Congresswomen Illiana Ros Leichtin was an awesome lady, I know she will help us she was so concerned about learning what she could about emphysema etc., we then met with her staff member Jay O'Callaghan (hope I spelled this correctly) just let me know Jay..lol He to was very concerned and I told him how I live day to day, antibiotics in one hand and a rescue inhaler in the other because I never know when I may have to use on or the other, in fact today I started the antibiotics as I came down with a cold from mingling with so many different follks and being on the airplane and in the airports..

The following day we met with Senator Nelsons staff and then on to Senator Martinez's staff. I feel that we did make an impression.

I was so happy to speak on behalf of those of you who could not make the trip or did not know about the trip, in the future I will be sure to post about anything that you all might be interesed in participating in.

One other bill we did lobby for was HR1282 which expands open enrollment of Medigap to cover disabled Medicare Benificiaries.

That about wraps it up for tonite my friends, Rember till we meet again,

~Inhale 123

~Exhale 1234

Breathe Easy,

Sandy

Washington DC/ C- Pap ID Tags

Hello my friends..I was doing some surfing about Sleep Apnea which you all know I have as well as many others and found a site that offers ID tags for our sleep apnea carry bag..which by the way is not considered a "carry on" as it is considered a Life Support System...day is not wasted I learned something..lol The tag is about 10/5 one side is bold lettered Medical Equipment Identification Tag and the other side: Medical Alert , Respiratory Equipment and gives you the option to note cpap/bipap/vpap/autopap and then list the owners name.

I was happy I found this site especially for my upcoming trip to Washing DC for the first Federal Advocacy Day for Lung Health

This weekend I will be getting everything together lots of info not to much clothing to pack only going to be a few days..but I know the anxiety and stress will be high..I will but my breathing techniques in high gear and think of all of you who could not make it and just hope I make a difference for all of us. Until we meet again my friends remember,

~~~Inhale 123

~~~Exhale 1234

Breathe Easy,

Sandy

Satisfaction Guaranteed !

Good afternoon my friends hope all is well and it is a good breathing day ! The reason I am writing today is that I received a reply about the "Spiriva" capsules it is as follows:" What happens to the little particles when we puncture the capsule" hmmmm good question, I e/mailed spiriva and asked that same question....within minutes the phone rings..yup it was the folks from Boehringer Ingelheim replying to my query.

Here is their reply: Once the capsule is punctured the minuscule particles are usually caught in the "screen" of the Handihaler and if for some reason the screen does not catch them they are ingested..causing no harm as they are a hard gelatin and not plastic...I read the "Patent's Instructions for use" it does indicate that "Spiriva" is a light green, hard gelatin capsule.

I asked about the empty capsules she asked if I had them, I was glad I did keep them, I mentioned to the gal that I had contacted her company before and the reply was that they could not do anything about them..she said I apologize for that, do you have the capsules if you do I will send out an envelope to you to send them back to me. to be tested.now here is the best part I also saved the blister package which had the lot # on it....She asked what pharmacy I had the prescription at I told her, she said I will call them and call you right back, which she did within the next 5-7 days there will be a "Courtesy Replacement" for me...Wow!

I have to tell you, the gals I spoke with were very nice and understanding

I am glad I saved the empty capsules. If anyone has the same problem save the empty capsules, contact the Company...Oh one more thing always check the chamber to make sure nothing is blocking it..

I made a point also about the "Thrush" she appreciated me bringing that up and will look into it.. I hesitate to use it cause how bad my mouth gets, and if I don't use it I have a difficult time breathing !...I choose to live with the "Thrush"...The best thing to do is be sure to rinse your mouth it is soooo important. Also she asked how I use the "Spiriva" I told her I inhale the capsule, then exhale, without using the "inhaler "

I then inhale and exhale again..that is the proper way to use the "Inhaler"

So, until we meet again my friends remember;

~~~Inhale 123

~~~Exhale 1234

Breathe Easy,

Sandy

"Asthma Walk" April 26,2008

Good Afternoon to my friends ! More exciting news to share with all of you ! Today I participated in the annual "Blow the whistle on Asthma" walk held in Ft. Myers, Florida it was nice to see all those folks participating. Last year it was difficult for me to walk a mile but thru out the year I have been exercising (light) walking, stretching and using breathing techniques(PLB) it sure has made a difference, in fact I had put on my "Pedometer" it measures steps, calories and mile (s) walked low and behold I walked 2miles, yup 2 miles ! Exercises are so vital to all of us. The gentleman in the picture is Mr. Kurt Goerke, Regional Director

for the American Lung Association of Florida, Inc.

Next month I am going to Washington DC to participate in The first Federal Health Advocacy Day, meet with the senators from all over get to share our personal stories, hopefully t enlighten them on how important

it is to get funding for Lung Research for folks like you and I!

Until we meet again my friends remember,

~Inhale 123

~Exhale 1234

Breathe Easy,

Sandy

Relay For Life

Hello my friends hope you all are breathing easy this evening, the temps here in florida are awesome upper 60's low 80's light humidity I would love these temps. all year long..lol I have been walking more each day , exercise is good for us with Lung Disease only to be done as tolerated and also check with your Dr. For the first time I participated in a "Relay for Life" this past weekend, let me tell you it was wonderful

The photo above shows a group of Cancer Survivors and their affiliation "New Voice Club" of Fort Myers all these folks has had their voice box removed due to cancer each and every one of them are an inspiration to all of us. The meaning of relay for life starts at dusk and ends at the next day's morning. The light and darkness of day and night parallel the physical effects, emotions and mental state of a cancer patient while undergoing treatment. Everyone thru out the nite walked the track for a half hour and each time handed off their baton to the next walker, I walked from 5:30 Sat. am till 6:00am what an honor for me. As a participant, you feel the brightness of the morning and know the end of Relay is close at hand. I sure was beat then then I think of what the patients are going thru and they know we are there beside them.

I am blessed each and every day to greet the morning sun !

Until we meet again my friends remember,

~inhale 123

~ Exhale 1234

Breathe Easy,

Sandy

Wrong Dosage

Hello my friends, well here we are again with another dilemma! As you all know from my previous posts that I have been having problems with "Atrial Fibrillation's" and my Cardiologist suggested I try a drug called "Digoxin" to help control a normal heart rhythm..that was on or about 3/15/08, SO on 4/15/08 I go to the pharmacy to have the med. refilled guess what! the Pharmacist asked me how the med was working I told her really not well I still had atrial fibulations and was planning on going into the hospital for three days to monitor for a new med to see how I reacted ! Come to find out the pharmacy gave me the wrong med. dosage! Oh my God ! they gave me 0.125 mg instead of.25 mg...half the dosage! All the pharmacist could say was " I am sorry" well dang it , you are dealing with my heart here, if my heart does not work right neither will my lungs ! So, my friends be real careful when you get our meds, check out the prescription and count your pills, make sure what you are taking is what you should be taking, oh, one more thing when you go to your Dr. ask for a copy of the prescription so you will know what you should be taking for your own safety...I learnred the hard way! Needless to say I will be transferring my prescription to an other pharmacy.
Because of the mix up, when i picked up my script the pharmacy did not charge me and they gave me a $25.00 gift card for the store...do you think they are worried need not be they have lost my business s for sure.
Until we meet again my friends remember,

Breathe Easy,
Sandy
Inhale~~~123
Exhale ~~~~1234

Laughter Is The Best Medicine

Learning the History of April Fools Day In sixteenth-century France, the start of the new year was observed on April first. It was celebrated in much the same way as it is today with parties and dancing into the late hours of the night. Then in 1562, Pope Gregory introduced a new calendar for the Christian world, and the new year fell on January first. There were some people, however, who hadn't heard or didn't believe the change in the date, so they continued to celebrate New Year's Day on April first. Others played tricks on them and called them "April fools." They sent them on a "fool's errand" or tried to make them believe that something false was true. In France today, April first is called "Poisson d'Avril." French children fool their friends by taping a paper fish to their friends' backs. When the "young fool" discovers this trick, the prankster yells "Poisson d’Avril!" (April Fish!)
Today Americans play small tricks on friends and strangers alike on the first of April. One common trick on April Fool's Day, or All Fool's Day, is pointing down to a friend's shoe and saying, "Your shoelace is untied." Teachers in the nineteenth century used to say to pupils, "Look! A flock of geese!" and point up. School children might tell a classmate that school has been canceled. Whatever the trick, if the innocent victim falls for the joke the prankster yells, "April Fool! "
The "fools' errands" we play on people are practical jokes. Putting salt in the sugar bowl for the next person is not a nice trick to play on a stranger. College students set their clocks an hour behind, so their roommates show up to the wrong class - or not at all. Some practical jokes are kept up the whole day before the victim realizes what day it is. Most April Fool jokes are in good fun and not meant to harm anyone. The most clever April Fool joke is the one where everyone laughs, especially the person upon whom the joke is played.
"The first of April is the day we remember what we are the other 364 days of the year." - American humorist Mark Twain

We all need some humor in our lives, especially those who are living with a chronic disease, they say humor is the best medicine !

Today was not a good day for me for some reason the osteoporosis in my back is in an awful "flair up" I am trying to move about, have taken Tylenol 1000 mg. twice today perhaps it would be better if I just lie down for a while. Anyway watch out for Tuesday,"April Fools Day!" Enjoy the rest of your weekend. Remember, till we meet again my friends,

~Inhale 123

~Exhale 1234

Breathe Easy,

Sandy