The ideal conditions to live with Copd

Is the grass starting to look greener somewhere else? Americans are used to the idea that they can live wherever they like, regardless of factors such as climate and altitude. But things aren’t that simple for the more than 12 million Americans who have been diagnosed chronic obstructive pulmonary disease (COPD). COPD patients are easily affected by a number of factors associated with location, and they need to keep those factors in mind when considering a move to a new locale.



Doctors estimate there are around 12 million people in the United States with COPD. The most common illnesses associated with the disease are chronic bronchitis and emphysema. COPD is nearly always caused by exposure to cigarette smoke, although long-term exposure to other air pollutants also can prompt the disease. It is the fourth-leading cause of death in the United States.


The best places for COPD patients to live feature a specific set of conditions that make it easier to live with and treat the disease. These include:


-A temperate climate


-If you also have allergies, low levels of pollen and other airborne allergens


-Low levels of airborne pollutants


-An altitude close to sea level


-Plenty of doctors and ready access to health care


-Climate
People with COPD do best in places with temperate climates and no extreme swings in temperature, which can exacerbate symptoms and make COPD management more difficult. Cold air can cause the air passages to constrict, making it more difficult to catch adequate breath. On the other hand, hot and humid air can create resistance to airflow into the lungs. For these reasons, COPD patients should be wary of living in places with long bouts of cold weather as well as locations with extended periods of hot and humid weather.




-Allergens
Locales with low levels of airborne allergens and abbreviated allergy seasons are good choices for COPD patients, particularly those who develop seasonal respiratory symptoms from pollens. A runny, stuffy nose and increased congestion from allergies can be very difficult for COPD patients, given that they are already struggling to take in enough oxygen. Patients should be sure to investigate the pollen counts of any place they consider living. According to the Asthma and Allergy Foundation of America, locations with the least challenging allergy seasons include parts of Florida, California, and the Pacific Northwest.






-Pollutants
Clean air is a must for COPD patients. Airborne pollution can make it more difficult for COPD patients to breathe by replacing needed oxygen with pollutants. To make matters worse, these pollutants can do further damage to their lungs, irritating them and potentially triggering allergic reactions. Patients focused on COPD management should consider moving to places that have low airborne concentrations of particulates, nitrogen dioxide, sulfur dioxide, and ozone — all of which are known to exacerbate the disease and its symptoms.



-Altitude
Places located at lower altitudes are better for COPD patients' health than high-altitude locations. The air is thinner at high altitudes, forcing COPD patients to fight even harder to get enough air into their lungs. Patients should talk with their doctor before even visiting such places, much less relocating there.


-Access to Health Care
Finally, patients who need COPD treatment should consider the medical services available in any place they might live, and choose a place where they will be able to receive quick COPD treatment. COPD patients with less access to quality health care are not as well able to manage the disease. Studies have found that patients who live in rural areas with less access to health care are often in poorer health and are more likely to be hospitalized.


COPD patients need to put much thought into where they live. Choosing a place more amenable to their condition can help in the management of their disease and vastly improve the quality of their lives.

Two days in one.

When did my trampoline turn on me?  I got on it yesterday for 10 minutes and that was enough.  I was O.K. with that and blamed my lack of commitment to just getting home and going out grocery shopping, unpacking and everything that goes along with coming home. 
Today however, I got on the trampoline this morning and it was a chore to do 15 minutes, I did though.  This afternoon I plugged in my IPod and turned up the music and got in another half hour. 

My leg muscles are sore.  It is going to take some time to get me back up  to my max again.  I did pretty well yesterday following my idea to just eat fruits and veggies for 4 days.  I did eat a power bar and 55 goldfish crackers.  LOL 
Today I ate lots of fruit and veggies then for dinner ate fish which is fine. 
I was holding off and trying not to eat protein, but found myself eating things like crackers ... so to save myself I decided protein may stave off hunger and it did.

This should be a warning for me of how easy it is to slide right off the eating healthy and exercising program and going back to my bad habits. 
~~~~~~~~~~~~~~~

The above was last night.  I will finish this quickly.  Again today I was on the trampoline but for a very short time.  It feels like my fibromyalga is coming on again full force.  I wish I knew what makes this flare up?  I have pain meds for it, and it takes the pain away rather quickly, it also however takes away all my energy.

I hope all the dads had a wonderful fathers day.  I woke up early this morning and got Layla and I dressed and off we went to shop for Bill and Fernando.  We bought them both shirts and Layla picked out some cards.  We were back home about the time Bill woke up. 

I am on my way to bed and it's not 8:00 yet.  Yawn... I just can't keep upright any longer today.

A relaxing trip

We had such a nice time in Bend.  I love the little city and being able to spend time there with my brother is just a bonus. 

Tuesday we drove up to the area we spread Mom's ashes and hiked up to the spot.  I climbed easily.  That is not to say I didn't stop and rest a few times to catch my breath on the way up, but I did better than I thought I would have.

Her ashes were scattered here because her brother was also here.  They were so close.  And, frankly... my step father didn't have a clue what to do.  Enough of talking about him... it just sours my mood. 
The tree where we scattered her ashes beneath is a beautiful dead snag (if you appreciate things like that) that leans out over a awesome canyon and also is in full view of the Three Sisters Mountains near Bend.


The plaques on the tree are there for Mom, her brother and his wife.
There is a hanging angel below the plaques with bells that ring in the wind.



A Terracotta angel lays beneath the tree

A portion of the Three Sisters that are the backdrop of bend.  One mountain didn't make it into frame.

We had a great time.  It never is long enough and it's always sad to say goodbye to my brother.  We promised to get together again near the end of summer.

I ate WAY too much.  The food was great but I didn't watch any calories consumed during the trip.  I ate macaroni and cheese with Fontina, Asiago and white cheddar cheese... OMG... every bite was a guilty pleasure!

Like every outing or trip this one took planning.  We had to go and pick up 12 oxygen canisters, pack up my home concentrator and bring extra cannula's.  As it was we got to the hotel room and brought in the concentrator only to realize that I forgot the adapter that connects the cannula to the tubing from the concentrator.  So... Bill being the fix it guy he is used a pen and some duct tape and made it work.  LOL  Give a guy duct tape and he can fix anything!!

Anyway... I had a great trip, got to spend some quality time with my brother, and got to enjoy the town of Bend.  Now it's time to get back on track.
It's nice to be home.

Now that we are back home I am spending the next 4 days eating nothing but fruits and veggies.  I need to kick start my weight loss again.  I know I ate too much of the wrong food because my hands and feet swelled from the salt, and my pants got a little snug from all the fattening food.

I have my trampoline back out and will begin to use it as soon as I finish this blog and get back into exercise too.  I have been slacking in all areas of good health for over a month now.  It really does take work and consistency to maintain a healthy body. 
For us with Copd we just need to figure out ways to exercise that works for us.  I think everyone is different as to what they can personally handle and how far they can push themselves. 
I know from experience I need to listen to my body and see the signs of over-exertion.  The first sign of my chest tightening and burning I need to stop.  If I push on (which I have in the past) then I am unable to do much of anything for the next 3 or 4 days.

It's frustrating to live in a body where the mind is willing to push forward but the body is telling you to stop.  Like anything else associated with Copd we need to learn what works for us, to be aware of our limitations and to accept smaller goals.

Interview Questions

This was done on August 22, 2010 for a COPD site I belong to.  It is interesting to read my answers then and compare it to nearly a year later. 

INTERVIEW QUESTIONS – extensive answers are unnecessary and any question is optional to answer. Please return within the next couple of days.


1. When and what were you doing when you first noticed symptoms? Like most smokers I noticed shortness of breath and colds taking longer to get over. Those symptoms continued for probably 4 years until diagnoses.

2. What were the symptoms indicating the diagnosis? Shortness of breath when walking, a cough that wasn’t going away, coughing up colored phlem.

3. What did you think at the time? I was scared, angry and fearful of dying. or what have you thought since? It is burdensome to family members or caregivers. I am damaged goods.

4. What experiences have you had with the illness? I am on fulltime 24 hours of oxygen. Walking in public with a cannula around my face makes it impossible to keep private my struggles.

5. Any humorous stories? A few coming to the end of my tubing stories, having my head jerk back because I ran out of O2 tubing while walking through my house. Not so funny anymore, now just irritating.

6. What has been your inspiration after diagnosis? My daughter and granddaughter. I want to be well for them.

7. How have you coped with your challenge (positive)? I write. It helps to get my feelings out. I started a blog. http://asiliveandbreathe-kellie.blogspot.com/

8. What do you think now? I know my time is limited. I would guess with good health about 15 years MAX. It’s odd to know your time here is fragile. I know from here on out it will only get worse, and I will lose freedoms that I now take for granted.

9. What else do you know about your illness you would like others to know (undoubtedly you have learned a great deal)? That cigarettes do kill. I am proof of that. That when people ask me what it’s like to have emphysema…. I tell them, at my worse (so far) it’s like being underwater and running out of air but not getting to the surface in time.

10. What memorable events transpired in your life to bring you to the point where you are? I watched both parents struggle and ultimately die of complications of emphysema, so to now walk in their footsteps is frightening.

11. How do you think your challenge has impacted you? Like everyone says… When faced with mortality, you find out what truly matters, and it’s not money or big houses or nice cars… all the things we spent our lives accumulating. It’s family and friends and memorable times spent with them.

12. (Brag!) Would you like to talk about your successes? My only success I have at this moment is my blog and it’s ability to reach those who also suffer. Or, to have their family members thank me for writing so honestly so they can learn what their loved ones are going through.

13. What might a typical day for you be like? Out of bed around 9:00 a.m.. Have coffee, shower, get on the computer, maybe go shopping with my ex husband. Watch T.V. or spend the evening with my granddaughter. Go to bed around 10:00.

14. What do you look forward to? Spending time and laughing with family. Having good breathing days and walking through the stores.

15. Given everything, what do you think about life experiences? I wish I would have enjoyed my early adult life more. I wish I hadn’t been so focused on making money. I wish I would have had more kids.

16.

17. What might be a theme throughout life (family, education, excitement…)? You only have one chance at a good long life. Take care of yourself and your body while you’re young. Don’t make fun of those who eat veggies and ride bikes or jog. Get up and chase them! Give up bad habits. Because they are bad… otherwise they would be good habits.

18. Would you like to talk about your family (parents, siblings, children)? My husband of 27 years and I divorced last August. I knew what was ahead for me as far as health and costs. I didn’t have insurance and everytime I applied I was denied for pre-existing conditions, so we divorced so I could receive SSI and get our state medical insurance.

After 27 years I had to take off my wedding ring because I was diagnosed with Copd and severe Emphsyema. I didn’t want to bankrupt our family. I wanted to be able to spend the remainder of my life doing things that brought me and my family joy… not worrying about finances.

That is my biggest regret.

What is the " Suffocation Alarm"?

Our brains are designed to protect us and keep us alive. Deep in our brain is a region that constantly samples our blood to be sure that we are breathi...ng well, and that we are breathing clean, "healthy" air. If it detects anything wrong with our breathing or the air around us, it can send out an alarm signal that something is wrong. This might feel like as sudden rush of anxiety, or even panic. This feeling is supposed to prod us to get up and get away from whatever dangerous situation has caused our breathing to set off our "suffocation alarm".  

 With COPD, you regularly have trouble breathing and your suffocation alarm can become "hyperactive". You might feel anxious and edgy. Even little changes, like strong odors or being hurried, can fire off a full suffocation alarm signal. This is the reason that patients with COPD frequently complain of increased episodes of panic and anxiety.   This response is common and does not mean that there is something wrong with you mentally or emotionally.  


 With help from your doctor, there are a number of things you can do to "reset" your suffocation alarm. These may include: 

* Breathing Training * Counseling * Medications   Managing Worry   Fears and worrying are common problems for people with COPD. These can be caused by your "suffocation alarm" or result from all the changes that have occurred because of your COPD. Below is a list of some of the ways that "too much worrying" can show up. Print this page and check off those items on the list that you feel apply to your experience:  
* I have trouble getting to sleep because I’m worrying.
* I can be sitting quietly and suddenly become short of breath. * I almost always have a nagging worry about when I’m going to have an episode of difficult breathing. * I seem to be getting more and more frightened to leave the house. * I’d rather stay home so I can avoid being exposed to the "dangers" out there, e.g. people’s germs or excessive perfumes.
* I’m frightened of getting onto elevators, airplanes, or bridges and will go out of my way to avoid them.
* I walk around feeling as if something bad is going to happen.   If you are experiencing any of these symptoms or the following feelings, talk to someone on your treatment team and you'll get help.   It is also not uncommon for people with COPD who are depressed or feeling overwhelmed by the stress in their lives to want to "take a break" from being sick. At these times they may find themselves not paying enough attention to the illness, or on some level denying that they even have the health problem. They may notice some of the following (again, check off the ones that apply to you):  
* I frequently overextend myself and pay for it with worse symptoms the next day or two.
* I try to use as little medication as possible, and as little oxygen as possible, even when my doctor wants me to use more.
* Sometimes I pretend I don’t have COPD, even in situations when I know it might be important to let others know. * When I’m feeling "hassled" by my COPD, I drink more alcohol than I should because it lets me forget about the COPD.   What is "An Ideal Level of Worry"?   The fact is that there is an "ideal level of worry." At this ideal state, you understand that you have a chronic and challenging illness. You know there are things you can do that will help and hurt your experience with the illness. Over the long course of COPD you will likely go through periods of time when you worry "too much" and other times when perhaps you should give your illness more consideration. These fluctuations are absolutely normal. It is important to find the "just right" amount of worry that can help you keep your life and your illness more in balance.  

This information has been approved by Rachel Norwood, MD (September 2006).   Note: This information is provided to you as an educational service of National Jewish Health. It is not meant to be a substitute for consulting with your own physician.   © Copyright 2008 National Jewish Health

Hi there young lady!! :)

I woke up this morning slowly and stayed laying down while I took inventory of how I felt.  I decided before I even got out of bed that I would "buck up" and be a big girl and no matter how I felt I was going to be up and about today.

To be honest, my chest hurts my throat feels coated and swollen.  It's not of course, it just feels like that.  I shouldn't have a fever I have been on anti-biotic for a week now, and have a week to go.  You know, I just feel sluggish. 

We went to Layla's talent show this afternoon.  2 kindergarten classes doing what they feel is talent.  It was SO cute.  Layla got a cheerleaders uniform and did a cheer.  Some of the kids sang, played piano (chopsticks), danced and some made up their own songs... some got up and once on the stage decided that they didn't want to perform.  They got applause anyway.  LOL

We sat in the front row so we could take good pics of Layla.  Britt said she got 2 pictures and 1 was good.  I'll post it when I can get it.  While we sat there this little boy about 4 maybe stood beside me with his older sister.  He had his arm around her waist as though to lead her.  His hair was roughed up .. he looked like Dennis the menace only so much more smooth.  He looked at me, I looked at him and he said......... "Hi there young lady"!!  Oh My God!  I wanted to hug him.  How cute is that!!

Tonight I am calling it a night.  It's been a long day and I will be glad to get this one behind me. 

Not feeling well

I am not feeling well tonight.  This afternoon I layed my chair back and wanted so badly to take a long nap.  I can't sleep in the afternoon or I will be awake all night.  I think my body was telling me to sleep. 

My chest is tight and I have a cough that brings up nothing, just a dry cough. 

I just took my p.m. pills and will be off to bed.  I am hoping this turns out to be nothing.  I really don't want to cancel my trip to spend time with my brother.

I'll let you know tomorrow how I feel.  Keep your fingers crossed for me.

Weigh in and Trying to stay off the floor

I got up this morning and rushed to a tanning appointment at 9:00 then Weight Watchers at 10:00. 

I gained 1.6 pounds bringing my total weight loss to 30.6 pounds.  I have been trying to lose this same 5 pounds for 2 months.  You would think I would get over it and begin to lose again.  I take full responsibility for my weight.  It is me putting every bite into my mouth. 

I am sure if I read back on this about every month at least once I would have a new idea on how to restart my weight loss/exercising ... or a new "outlook".  LoL  Well, I don't want to take the time to go back and read right now so I will just admit to it.

I have been thinking though (I see those smirks on your faces!! LOL) that this bodybugg program I am following projects my goal to be reached the first part of October I think.  I really like this bodybugg program and the tracking everything I eat.  But I think instead of keeping my focus on the number of pounds I want to get to, I want to refocus on the size and condition I want my body to be by then.  Pffft  Don't get me wrong if I get to my goal weight you will hear me yelling clear across the country!  ;)

I have been thinking seriously about going back to Curves.  In case you forgot or missed my last dealings with Curves I will retell my story. 

I joined Curves after I was put on night time O2, but before I was on it 24 hours a day.  I was on only 2 inhalers at the time and no other medication.  I barely remember those days.  So, my first day there the lady shows me all the stations and how to use each one, then rest or walk in place between each one.  I did fine the first day.  The second day I went in the morning and there was one other lady there.  We introduced ourselves to each other and I began my rotation.  She was right behind me.  On a few of the machines it shows your pulse rate and evidently mine hadn't cleared before she sat down.  I see her go to the "boss lady" and then they both head over my way.  The boss lady says (I can't remember names) Blah Blah is a retired RN and she saw what your pulse rate was when she sat down at a machine"  "She thinks it is at a dangerous level".  Then Blah Blah says to me "please lay down on the floor and bend your knees and just rest for a minute while I take your pulse."  So I find myself laid out on the floor.  My pulse never did get low enough to suit her.  I just told her I had emphysema and I was sure that played a part in it.  The boss lady says to me "it would make her feel better if I doubled my time between machines for the time being". 
I went 2 more times and then finally quit because it was evident that these women in there were so concerned they would hover over me throughout my work out.

Now I think being on O2, and bringing in a doctors note I could really benefit from their machines.  I think when I get back from Bend I will go in and talk to the manager about my concerns and see if I come back could things ease up some?  I will have my O2 cannula on and my Oxi-meter so I can keep track of all vitals.  I am hoping that may keep me off the floor!  LoL

My struggle

Tomorrow is my Weight Watcher weigh in.  I didn't go last week.  I was considering not going tomorrow and I will be gone next week to Bend, so I was thinking about just picking back up again in July.  What was I thinking?  I was so close to chucking my weight loss progress and calling it quits!!  So, I will get up tomorrow and I will go weigh in.  I am sure there will be a weight gain.  That is no one's fault but my own. 
That is one of my biggest struggles is when I am feeling fine, I am exercising while eating well.  If I indulge in something it doesn't make that big of difference because I am active and burning calories.  However, when I am not feeling well and just sitting around I don't cut back on my intake.  With weight gain comes depression, and self doubt.  I don't want to fall into that hole again.

Time to "put on my big girl panties" (lol, Brittney says that sometimes...seems to fit here!) and take responsibility for a weight gain and get back on track again.  Warm weather is here and that should make it easier. 

I struggle sometimes with just how honest and personal I can be with this blog.  I will discuss this only because I think it is something everyone with a severe disability struggles with.  Sex. 
I have a difficult time seeing myself as a sexual being anymore.  That is my confession.  When I can go on and not look in a mirror, or forget that there is a cannula around my face I am fine.  I feel feminine and sexual.  When I then look in the mirror or remember my cannula it stops all thoughts of a romantic night.  I find it hard to believe that Bill can overlook the cannula and see me in a sexual way.  He says it doesn't matter and I am still beautiful. 
Is this my hang up alone?  I have kept my cannula off and nearly passed out.  That taught me a lesson.  I am tired of being needy, or even have the suggestion that I may be needy.  I want to be the strong, self sufficient me.  The lover that Bill remembers and not the broken one that shows up now.  Boy ... That says a lot doesn't it?! 
There are probably many many more reasons why someone with emphysema or copd or any disability struggles with their sexuality.  I have bouts of depression which is a real side effect of my disease.  I have weight issues, from years of bad choices and little exercise.  I have real pain, which doesn't show but is there.  I could go on... but I think you get the point. 

I just figured if this is an issue for Bill and I to work out, then I can't be alone?  Can I?  I am finding with the progression of this we are having many issues, Bill and I. 
I am doing my best to get used to turning my chores over to him without guilt.  He now does almost all the laundry.  Well he washes and dries and I help fold and hang up.. but this is something I always have been very picky about.  He is doing all the yard work because I can no longer mow ... I don't have the stamina for it.  All the heavy lifting is his now.  Once in a while I get stubborn and will move the furniture around.  It slides easily on the carpet.  ;)  I just feel like I am not holding up my end of the bargain.  And, that independent evil Kellie comes out and does things she knows she shouldn't. 

There are those moments I am reminded that I have this disease because I would not quit smoking like he repeatedly asked.  I take this reminder badly.  I am weighted down with guilt anyway, and being reminded of why I am like this frankly pisses me off and automatically puts me on the defensive.  It's one of those weak spots a spouse has ... you know the one you know you can go to when you are fighting or you know will sting just the right amount?  Or, is it just my marriage that we carry that weapon?  We actually fight less since my diagnoses.  And when we do, it's always for the same ol tired arguments.

I am looking to the future.  I am hoping for a time when I have finally, once and for all realized this is the new me and accept it.  I go for periods of time just fine and then I just want to SCREAM ... This is not me!!  The me I know was fearless, independent, strong and sure of myself.  I see glimpses of that person once in a while now.  I miss her.

Long time no see

I have had such a hard time getting here.  Sorry. 
Britt and Layla and her dog (a miniature Australian Shepard) moved in for a week or so.  We just finished moving them into their new house today.  I love her house.  It's a 2 story split level, which kind of makes it a 3 story.  It's in one of the best neighborhoods in town.  I told her I was jealous of her new house and she laughed and said good!  :)  I am so happy for her.  They are on the road to a great life.  She will graduate the 10th with her CNA license, have about 10 days off then back for her summer schedule, and into her nursing degree.

I am doing pretty good.  I have had a secondary infection creeping around through my body.  It has left me tired and at times feverish.  It was a cyst that was on the back of my right shoulder just in a spot I couldn't see it.  I was taking a shower the other day and just having water run on it was painful so I called the doctor.  She was quick to give me antibiotics and told me to watch it. 
I guess my immune system is low due to the heart medication I am taking.  Isn't that odd?  The medicine is helping my heart and leaving me wide open for any bug that wants to make a home around me.

I am so hoping to get all this out of the way so we can enjoy our trip to Bend.  I am going if they have to drag my lifeless body into the hotel and shops!!!  LoL  Dramatic huh?

I have been watching my food intake (mostly) and have been as active as possible this week.  I will see what Tuesday has in store for me.  This will be one of those weeks I am not sure about a gain or a loss?

Well, I have taken my meds and it's getting to be that warm fuzzy moment, So I will say goodbye... but I will do my best to get back here much sooner next time.

P.S.  Today is my 2 year anniversary of the day I was diagnosed and the day I quit smoking. 

I am bloated

I talked with my oldest brother a couple nights ago.  It may have been last night??  I can't remember.  He said he can only make it for 2 nights and then he has to go back home.  He also said that my other brother told him that he just can't get away.  I figured.

I got the hotel information and sent it to both of them.  I told them that I had this planned since last June and that Bill and I were going to be there for the week.  I told my one brother that isn't coming that.... Life is short and it seems we only get together for surgeries or funerals and to me that is unacceptable.  I told him I loved him and always enjoyed our time together. 

This is familiar to me.  They did the same thing to mom for years and years.  If mom or I ever wanted to see them we had to go to them.  It made her feel like they didn't care and now I know first hand how she felt.

I first wrote a guilt-ridden email saying that I am on full time oxygen now, and that they need to think back to when both mom and dad got on their oxygen.... Sadly, there wasn't many years left for either one of them.  I went on to say that now I can get around pretty well, but soon enough I won't be able to climb hills, or walk through town.  Of course I am trying to be much healthier than them, and I am much younger.  Still this is progressive, and with my best efforts I will be limited.  Anyway.... I didn't send that email.  It felt good writing it, and therapeutic to erase it.  Is that odd?  lol 

As it is we are leaving from the 13th through 17th.  That will give Bill and I a couple days to just wander around by ourselves.  I am hoping for good weather so maybe we can kick back by the pool.  I am doubting that though, we have had freezing temps and snow the last week. 

I didn't go to my Weight Watchers meeting today.  I think this is the first meeting in a long time I have missed.  I had a Cardiologist appointment this morning.  They just went over my blood pressure results from the last 2 weeks.  They asked me to take blood pressure morning and night for 2 weeks along with my pulse and I gave that to them today.  My pulse is still above 100.  They have doubled my nightly dose of my heart medication.  I am to watch my blood pressure and make sure it doesn't get too low, and watch for dizziness, then get back to her this week and let her know if that is working for me.  I will go back to see them after my Pulmonologist appointment in August.

I was a little relieved to not weigh in today.  I haven't been very good this week.  A little pizza at Layla's birthday party along with cake.  Bill made banana bread and I think I "slivered" all of one loaf.  You know, when you keep slicing small slices and then you realize you have sliced the whole thing!!  lol  I feel bloated from the salt I have gotten from not watching food.  Ughh... I just feel like I haven't been kind to myself.  I have no excuses, I put every bite into my mouth... it just is much easier to keep the house junk free with only Bill and I here.  We spoil the girls and I end up eating more than they do.
This week for my own well being I am getting back into the fruits and veggies and lean meat with no salt! 
I will have 4 weigh in's this month and I am hoping to make June a worth while month for my weight loss and inch loss.  Even with our little trip.  I can still enjoy great meals and not over do it. 

Happy 6th Birthday Layla

Happy Birthday Layla Ellie.  I can't believe how quickly time flies!  It just seems like yesterday I was rocking her to sleep and singing her lullaby's.  She is such a little lady.  Loves dressing up, high heels and all the pageantry.  Brittney always says... "I don't know where she gets it".  It's true.  Britt always liked jeans and t-shirts.  She was a cheerleader, but never was really girly.

It's been a long week.  Britt and Layla moved in until their house is ready sometime the first part of June.  It is wonderful to have them home, but it takes a toll on all of us.  Bill and I because we are so used to our routines, and the same goes for Britt and Layla.  I love to have the time to spend with Brittney, even if we are just watching T.V.. 

I have not followed my healthy eating the last couple days, and I am starting to wonder about Tuesday's weigh in.  I am not worried about it.  I gave that up... I just would rather lose each week.  I suppose that is unrealistic?.  I suppose if I really expect this to be a lifestyle change rather than a diet then my weight will not always go down.  I still have been exercising with the exception of 2 days.  We will just have to see on Tuesday.

I have been worn out all week.  I can tell having Layla for our weekend overnight stays and having her here all week.  She loves to "rough house" with me.  It just takes it out of me anymore.  I will not (for as long as I can hold off) be one of those grandma's that the kids have to be gentle with.  I don't ever want her to have to be careful around me, or think of me as sick.  So, with her here every day I am on my toes all day.  I am not complaining... just admitting I am getting old and tired.  lol

I still haven't heard from my brothers about the Bend trip and mom's memorial.  It irritates me because I would like to make hotel reservations early and be able to make some plans.    Besides that... I can see no reason for them to not call me and let me know one way or the other.  If I don't hear from them by Tuesday then I'll call them.  We have our neighbor stay at our house when we leave town to take care of our very spoiled dogs. So, it would be nice to be able to give her notice. 

O.k.  It's way past my bedtime.  More later.

Weigh in and belly laughs

I went to Weight Watchers this morning and I lost 1.2 pounds.  The meeting started and the leader (Kathy) starts speaking about the 5k we had walked Saturday.  Our group at Weight Watchers is around 40 and about 20 members plus friends and spouses walked on Saturday. 

Kathy goes on about what a great morning it was and then said... She thought there would have been a bigger turn out.  She says... There are people here who complain about arthritis or aches and pains, and there are people here who don't exercise but really need to for their health.  Then she said she saw me determined to walk with my oxygen tank on my back and she felt that no one should complain of aches and pains. 

Ughh.  This is really hard for me.  Inspiration is something I never intended to be.  It's perception I think.  I look at me like a woman who damaged herself with an addiction she knew was bad for her.  My family I think looks at me the same.  I think they are occasionally proud of me for pushing forward and trying to reach my goals.  But, I am humbled when I hear that I am an inspiration.  It pleases me very much to think that I can help someone with my words, or by sharing my story. 

I remember when I was diagnosed there wasn't many sites or people talking about Copd.  I first met people on the Become an Ex . org site that I used to quit smoking.  (which if anyone is trying to kick the habit... that is THE site to go too)  There were a couple ladies there who told me they had Copd and they became instant friends of mine.  Just talking about the symptoms we each had was reassuring.  It made me know I wasn't imagining things, and that I was not alone.  It also showed me what may be in store for me.  We are all a little different.  Our disease and it's progression depends on so much.... exacerbation's, colds/flu/pneumonia, exercise, over all health, other health issues.  So, no one person shares everything with the other.  We do have things in common like... Depression, anxiety, exhaustion... we share similar side effects from the drugs... eye problems, bladder problems, bowel problems, bloody nose issues. 

Wow...I get side tracked.  Anyway... I will take being an inspiration but it comes by accident.  And, I am so grateful if I can help anyone, or help a family member understand what struggles their loved ones are going through. 

Now... Britt and Fernando are moving into a new house.  So.. tomorrow they will move in here until their new house gets ready about a week or so.  They will be going over and finishing cleaning and mowing the yard and touching up paint this weekend.  Tonight Britt and Layla brought some things over to put in the closet.  Britt and I started taunting each other.  We used to have fly swatter fights.  We would chase each other around the house and smack each other with fly swatters.  Sometimes those things really stung!!  That was kind of the point... Tonight Layla was outside with one of my wooden spoons trying to use it as a baseball bat to hit a tennis ball with.  So, after she got through with it, I picked it up and on the way in the house swatted Britt on the back of her thigh with it.  Pop it went really loud!!!  She let out a yelp and I started laughing so hard I almost wet my pants.  She came in and grabbed the remote control and started swatting back.  We both connected 4 or 5 real good hits.  As she was leaving I had hidden my spoon in the waistband of my pants and I pulled it out and swatted her... thwack!!!!!!  She said and I quote......"I should wrap that cord around your neck and pull you down on the ground".  I said (through tears from laughing so hard) Gawd I wish I had that on a tape... the nursing school would love to hear that!!  Whew!!!! 
Anyway... It was SO nice to laugh.  I think that's the first time in months that I laughed out loud so hard.  :)  Tomorrow when I get ready to lay in the tanning bed and see black and blue marks on my legs and arms a big smile will come across my face. 

I am posting these for my records... but today i was really pleased to see my lean body mass increasing.  It was a pleasant surprise.  I seem to be losing inches now and even on the weeks I don't show a weight loss.  And, that works for me.  It's all about BMI and getting into physically good shape. 

What's next? ;)

First I have to comment for Giulia....  LoL  You crack me up.  Yes, I was willing to drag my body down that path until I finished the 5k.  ;)  No more long walks for me for a while at least.  You nailed it... I had to prove to myself I could still do it.  There is a big difference in being able to do it, and being sensible and knowing ones limitations.  I always did have to learn the hard way.  I love that you know me so well!  <3

As for the friends... I found one of them after I was invited to the 30 year class reunion last year and we talked back and forth for a little while, then once I told her about the lung disease... nada.  The other friend actually found me on face book and wanted to catch up through email.  She sent me a really long email telling me about the last 30 years... husband, kids, work, life.... I wrote back and no reply.  She was so happy to be in contact.  It's behind me now.  And, I have heard and now understand that some just don't know what to say.  That's up to them, because like I said I do not live my illness.  Yes, I have bad days but if I didn't have this cannula on no one would know they just spoke to someone with severe Copd.

What's next for me??  LOL  Funny you should ask.

The exact date is not set yet, but the first part of June Bill and I are going to meet my oldest brother in Bend, Oregon and go to where we scattered mom's ash's 2 years ago.  We went last year and put a small business card size bronze plaque on a tree there.  This year we are just going to say "Hi Mom". 
The thing is to get there we have to hike.  Uphill in the high desert.  Soft sand is impossible to walk uphill easily.  Last time I had my O2 in a designer hand bag, Capri pants and flip flops in the dusty dirt... this year I'll take my O2 backpack and jeans and tennis shoes.  I told Greg (my brother) and Bill that they may need to drag me up the hill.  Did I mention we need to climb through barbed wire?  LOL  It should be interesting.

More than anything I am looking forward to spending time with my brother.  I miss my brothers so much.  They both live in Eastern Washington, and even though I am in Oregon... it's just far enough that we only see each other once a year. 
My other brother won't make the trip.  He is "too busy" with his job.  Which is true, but everyone can take time off... even the President takes vacations. 

I told Greg to explain it to him this way... (and I don't mean to be dramatic, just honest)... With a good lifestyle and kicking and fighting all the way... my disease is still progressive.  Like it or not I can see a change from last year to this one.  No one knows what is to come, but people with severe Copd just don't live longer than 10-15 years tops.  Especially once they are on full time O2.  So... if we see each other once a year, I can see them at the most 15 more times.  If he keeps backing out of our trips that number gets smaller all the time. 

It seems the only time I see him and have all the family around is at funerals.  And, that is unacceptable to me. 

I am sure it will just be Greg and his girlfriend and that's O.K.  Britt said she will come up the day we go "see" mom.  We plan to be there 4 or 5 days.  Just sitting around visiting and walking through some shops. 
I am looking forward to it. 

So, that's my next adventure. 

My 5K

Yesterday I set my alarm clock for 6:30, got up and drank coffee and then got in the shower to try and wake up.
I got my oxygen bottle changed, my cannula on with the bladder in it for an extra boost when needed, got my backpack ready and off we went.

We of course got there early (this drives Bill crazy) because I have this thing about being late for anything.  It was a pretty cold morning so we sat inside the SUV and waited for everyone else to arrive.  And then (also like normal) I had to go to the bathroom so we drove to a nearby gas station.  When we got back most everyone was there.  

We would be walking on a bike/pedestrian path that runs through the city.  We had mapped off a 3.1 mile walk.  We would walk one way for half of it, then turn around and walk back to our cars.  

So off we went.  One of my friends at Weight Watchers decided to walk with us.  I had warned her that I walk at a snails pace and she was fine with that.  For about 1/2 a minute we kept up with the group, then I looked at Janice and Bill and told them I needed to slow way down.  Before too long the group was almost out of site.

I would walk as far as possible, then stop to catch my  breath and let my heart rate slow down some, then start up again.  We hadn't even reached a quarter of the way and the group was already on their way back.  
But I kept it up.  Soon after we turned around to walk back my lungs began to burn and with every breath my chest had the worse stabbing pain in it!  Bill told me he could go get our vehicle and come and get me.  Nope, I was going to finish this.  

It took us 1 hour and 45 minutes to finish the 5K.  I finished it!  
I came home and took some pain meds, turned up my O2 to get my saturation level back up and slept for 2 hours.

It's doubtful I will walk another one.  But, I am glad that I finished.  I think had Janice not been with us I may have quit, or took longer.  I would have stopped more often and for a longer time.  And, I probably should have.  I always think I have to prove something, I don't know why?!  

Anyway... today is going to be a do nothing kind of day.  Maria (a friend of ours) is coming over at 1:00 just to visit.  Maybe we will play a few games of cards or just sit and visit, I dunno?  
Maybe we will take her and go down and feed our ducks?

I am tired

Today was uneventful.  I cancelled my tanning appointment because somehow over night my skin turned red.  Lol  I usually don't burn but I did this time.  Not bad, just enough to take a day or two off.  I don't want to push the skin cancer thing. 

I took a 2 hour nap today.  I actually went in and went to bed.  I am not sure what is bringing on this sluggishness (is that a word?) I have lately.  I have to push myself to get anything accomplished. 

I did 15 minutes on the trampoline today.  That's it!  I feel like I am still losing weight.  I know this weeks weigh in was .6 pounds but I honestly think a pound either way can be explained away by medication.  And, by medication that is my polite way to say constipation. 

When I went to my Dr. yesterday she gave me a couple other laxatives to try.  It seems this heart medication is known to cause these kind of problems. 

I have that 5k to do on Saturday morning.  Bill said he would walk with me.  I am 98% sure I can do this easily... but I just am not as sure of myself these days.  If the weather is rainy and the air is stagnant that is a problem.  I'll do fine. 

I have already taken my medication and it's getting to be that time. 

Tomorrow I am hoping to get some more exercising in and do better tracking my food. 

Weigh in and a life lesson

Today was a busy day, at least for someone who isn't used to doing a lot of running around.  Besides that I am still as tired today as I was yesterday. 

This morning was Weigh In at Weight Watchers.  I gained .6 pounds.  I will try and do better next week. 

I went and tanned and stopped on the way home and filled my vehicle half way up with 45.$  that just amazes me.  Nearly 90$ to fill my tank. 

This afternoon I had an appointment with my favorite doctor.  We mainly went over my heart catheter information and what my cardiologist had said, and the changes to my heart meds.  I am now taking 240 mg in the morning and 120 mg at night.  They're thinking that this way I will have a constant dosage instead of it tapering off by the time I wake up in the morning. 

She (my doctor) told me that it is fact that most events happen from 1:00 a.m. to 3:00 a.m. ... That even most babies are born between those hours also.  A little fact.  LoL  And, when we looked back at my heart "events" they were mainly at night and woke me up, with the exception of the one that I was taken by ambulance for and that started in the early morning and I just waited for the clinic to open. 

I am supposed to watch this heart medication because in order for it to do it's job of lowering my heart rate, it can also lower my blood pressure.  Fix one thing... screw something else up... isn't that what medicine is supposed to do?  lol  You need one medication to fix the side effects of another medication.  Whew!!!  3 years ago I didn't take any medication and now I have a bag full. 

Not long ago I got back in touch with a few people I went to high school with in Anchorage.  It has been 30 years since I had any contact with any of my school friends.  When I moved out of Alaska and married Bill I lost touch with them.  There were a couple girls who I was "best friends" with.  We were really close. 

As we were catching up I mentioned that I had a severe lung disease.  It was almost just "by the way" and I didn't go into gruesome details... I just felt full disclosure was important.  After all, we were best friends with no secrets. 
I haven't heard from either one again and it has been over a month. 

Never did it dawn on me that as hard as it was for my family to get used to, it must be a shocker for a friend who hasn't seen you in a while to come to terms with.  I would hope if that were me I would be supportive and remain friends.  I know here in this blog it's pretty much all about me and my days.  But I promise my life is not at all "all about me"!  I rarely mention it unless I have some worry or something coming up that I want my friends support for.  Even at home with me walking around with tubing on... we don't just sit around and talk about me and my illness.  So, it's not in the fore-front of my mind.  To have someone turn their back on me for being sick shocked me. 

A few friends pointed out that some people have a really hard time knowing what to say.  Well, that's fine.  But, like I said... rarely outside of this blog is it mentioned.  I share my story on a quitting smoking site, and I think it helps some people realize that this could be them.  But for the most part, I am just like any other woman.  I have good days, bad days and always I try to be caring and sensitive to those around me.

Any way... it has really bothered me.  This is one of those times that without notice something has happened that really makes this disease real to me and makes me feel damaged, and different.

As hard as I fight to tan, and have my nails done, and buy flattering clothes, and fix my hair and make up... then to be snubbed because I have a cannula around my face.  OUCH!

Well, I am going to try and not dwell on it.  It is their dilemma not mine.  I am going to focus on me.  A better me. 

All of this and today of all days.... my step father sends me a "request for friends" on face book.  Some where in this blog of mine I have pages about my mom dying and my issues with my step father.  Why today?  I dunno.  I accepted, then had Bill and Brittney mention that it may not even be him, it most likely is my step sister using his account (which she has done several times, even sending emails from his account).  So... I have a feeling someone is on a fact finding mission.  Let them find facts. 

For those friends I had and for my Step father and his off spring... I hold my head high and move forward.  No one can hurt me if I stay true to myself. 

What a day/night.  I am so tired again.  Layla is spending the night so sleeping straight through is unlikely.  It's fine.  If I have to lose sleep I will do it to that beautiful little face. 

More tomorrow. 

Cardiologist appointment and tanning beds

I had what for me is a busy day.  I had an appointment this morning with my Cardiologist.  I thought it was a different one than what did my heart Catheter, but it was the same Dr.  That made me happy because I really liked him.  He was very gentle and talked to me without using confusing phrases or scary words. 

He went over the result from the 20th when I had my heart Cath.  My heart is good.  It is not showing damage yet from the emphysema, and he said eventually it will.  More on the right side.  It's called right side heart failure.  Sooner or later with decreased oxygen to the heart it will begin to harden causing use more energy to pump it, and not only that but will begin to fail.  He was really irritated that they are making me wait for lung surgery.  He said with a strong heart I would be a great candidate for either the lung reduction or transplant. 

Too many times they (the transplant centers) wait until patient is in such bad condition that their hearts are not strong enough to take the trauma of the surgery.

Anyway... back to me.  He is increasing my heart medication to try and get my heart rate under control.  Right now my resting heart rate is 96 to above 100.  He wants me to take my blood pressure twice a day for the next two weeks to watch for it to lower too much.  That is the risk of upping my heart meds.  Right now my blood pressure is 111/87.  That is good. 
He also told me that while exercising to keep my pulse rate between 140 and 170.  It had been going as far as 180+.  He said that is dangerous and fits emergency criteria. 
So, I will go back to see him on the 31st and take with me my notes on my blood pressure and my heart rate while exercising.

After that appointment I came home and sat in my chair and napped for 2 or 3 hours.  Never do I do that.  I hadn't slept well last night.  I was up 3 or 4 times.

I went and tanned this afternoon, which I find so relaxing.  Laying down with headphones on and in a warm bed for 15 minutes... how relaxing!

I came home and Bill had made Chicken soup.  It was perfect today because it was so cold outside.  We had snow today.  Ughh.  I want so badly to be able to get out and enjoy some sunshine.  The short days we have had sunshine I was locked in the house because of bad air quality.  At least I did get out and go to the store. 

It is 8:00 and I am just exhausted for no good reason.  I think I will go take my night time meds and call it a night.  Weigh in tomorrow and a visit with my Primary care doctor.  I'll be back tomorrow night. 

An interesting Copd article I found

COPD News Of The Day

News and information for all those affected by chronic lung disease. Updated daily Monday - FridayHomeExacerbations in COPD: One thing leads to another


American Thoracic Society


New research shows that individual exacerbations in chronic obstructive lung disease (COPD) themselves increase the likelihood of repeat exacerbations, even after five days of full, asymptomatic recovery—bad news for patients with COPD, where each exacerbation can drive the progression of the disease.


“This concept that exacerbations are not random has important implication for the analysis of clinical trial data and identifies a specific high-risk period for recurrent exacerbation during which preventative interventions might be targeted,” wrote lead author, John Hurst, M.D., of the Royal Free and University College Medical School, in London.


The results appeared in the first issue for March of the American Journal of Respiratory and Critical Care Medicine, a publication of the American Thoracic Society.


In patients with COPD, exacerbations are generally defined as an acute worsening of symptoms. Exacerbations in and of themselves are inherently dangerous and can lead to hospitalization and serious complications. But beyond their acute dangers, exacerbations drive lung function decline, and many patients never recover their baseline level of lung function after exacerbations. Prior to this research, however, exacerbations were assumed to be isolated events unrelated to one another despite observational data that suggested a dependency.


To test the validity of this assumption, which not only informs treatment plans for patients with COPD, but also forms the basis of research design and analysis, Dr. Hurst and colleagues analyzed daily symptom diaries that were kept for at least one year by 297 COPD patients, describing nearly 2,000 distinct exacerbation events. Two or more new or worsening symptoms, one of which must be “major” (e.g., dyspnea, more sputum, or a change in color of sputum) constituted an exacerbation, and after five days of symptoms reverting to baseline severity, the exacerbation was considered to be over. A second exacerbation occurring within an eight-week period was considered to be a recurrent exacerbation. The researchers further analyzed seasonality of exacerbations, comparing their winter (November to January) frequency with their summer (June-August) frequency.


In addition to the finding that exacerbations were clustered in time within individuals, the researchers found that they were significantly more common in the winter than the summer. They also noted that “isolated” exacerbations tended on average to be about 25 percent more severe than the first of serial exacerbations.


But most importantly, the researchers identified an eight-week period of time during which monitoring and follow-up is crucial to prevent or minimize further exacerbations in the COPD patient. “Our finding of a high-risk period for recurrent exacerbation may be important in guiding patient follow-up,” wrote Dr. Hurst.


“The mechanisms of exacerbation recurrence remain unexplored, and it is unknown whether recurrence is due to persistence of an existing organism or to acquisition of a new one,” noted Dr. Hurst. However, there are some clues that may guide future research. “The failure to eradicate bacteria with exacerbation therapy has been associated with an incomplete recovery in inflammatory markers and we have recently reported a relationship between elevated C-reactive protein during the recovery period of an initial exacerbation and shorter time to the next.” Furthermore, the paper noted that “symptoms more typical of viral infection are significantly more common during isolated events.”


“This knowledge is very important for physicians,” wrote Shawn D. Aaron, M.D., of the Ottawa Health Research Institute, in Canada, in an editorial in the same issue of the journal. “Clinicians should now be aware that their patients with COPD who experience an exacerbation may be particularly ‘brittle’ during a subsequent eight-week period. Close monitoring and follow-up during this time would hopefully lead to earlier therapy for recurrent exacerbations that may improve clinical outcomes.”

Tanning beds and 50.00 lotion

I can't seem to get the hang of writing every day.  I have thought about it, but didn't want to use this site as a constant complaint department, but like it or not with emphysema there will be a great deal of complaints.  So, here I am blogging...  I still have my lung pain.  For a long time it was mostly on my left side.  It seems now it has settled into my right side and even my back hurts.  Maybe not even my back but the surrounding area of my lung and rib cage.  With every breath it feels like something is stabbing me. 

Laying down at night isn't good.  Sleeping on my side is about the only way I can get comfortable.  After my meds kick in then I can get onto my back. 

Friday night Layla spent the night and slept with me.  I never sleep well when she sleeps with me only because she wants to snuggle and ends up kneeing me, or flopping a arm up at my face, or throwing a foot over me.  And, she sleeps as hot as a little furnace.  I can't tell her no though.  I love that she loves me and as long as she wants to snuggle I am there!

When I went in and laid down I had that familiar pain in my chest.  I thought it would go away if I could just relax.  I evidently did relax because the next thing I know I am dreaming of it being Christmas and I had a pain in my chest.  I was trying to hide it because I didn't want to ruin every ones Christmas with me going to the hospital.  I awoke  with that terrible pain in my chest.  I sat up and watched T.V. took another muscle relaxer and upped my oxygen for about an hour or so, then went back to sleep.

What this pain is I don't know?  I would swear it was a heart attack.  I know the symptoms are different in women, and I know not all heart attacks are a carbon copy.  It feels like a fist has my heart and is squeezing and twisting it.  I get a terrible headache and I have pain going down my arm.  Yet.. It goes away??  And, then without any notice it comes back. 

I am going tomorrow to see another Cardiologist.  I hope he has news of any kind. 

Tuesday will be a busy day.  Tuesday morning, Weigh In.  It should be alright this week, not a big loss, but I think it will be a loss.  Then at 11:30 I have a tanning appointment, and finally at 2:40 I have an appointment with my favorite Dr. Jennings. 

So... Tanning beds.  I know they still carry harmful rays like the sun does.  I even had a malignant skin cancer on my face, and went through radiation.  I tried the spray tan and am not comfortable with a tan that washes off!  LoL  So, this will be my third trip to the tanning bed.  I figure with good behavior (lol) I have about 15 years (and that's pushing things I believe) so, skin cancer really is the least of my problems. 

So, the first tanning session they put me in the bed for 9 minutes.  The next time I went in I asked about the tanning lotion.  It had been a few years since I used a tanning bed, but I remembered that the lotion is an accelerator and a bronzer.  The last few years when I would get a tan it would be almost red and blotchy, so I wanted one of the bronzers.  I asked for a good product and she handed me this one.  I told her I would pay on the way out.  I went in and used it and really liked it.  It wasn't oily, yet moisturizing, and smelled good... not like coconuts or suntan lotion.

On the way out I got out my credit card and when she brought me my part to sign I said $50.00 really?  lol  She said yes and that's an average price for the lotions.  I guess it had been a few years.  I would had passed out years ago if I paid $50.00 for lotion only to tan. 
Then I thought about it and even my body lotion is 35.00 and that's on sale, so I guess it's not so bad.

Lot's of changes.  Most of them long overdue.  I decided I can hide behind my cannula, or I can be as vibrant as possible with it.  Tanning, hair cuts and make up helps me.  I had always taken pride in myself and not long ago looked in the mirror and was shocked at who was looking back.  I never let my gray show.  I always wore make up, and usually had a tan by working in the yard or swimming in the ocean.  I never had been overweight.  Even when I had Brittney I lost my weight pretty fast. 
So, it has given me a little extra push to keep losing weight and to get toned.  My work outs lately have been maybe a 1/2 hour a day.  I just don't have the stamina to go any further right now. 

This week I am walking a 5k.  I am hoping the weather is nice to us.  I am hoping the air quality will allow me to walk and exert myself.  So, with determination I will walk. 

I will get back here tomorrow after my Cardiologist's appointment and let you know what is said. 

Weigh in and Spray Tans

I have noticed that making small simple changes in my daily routine can make a HUGE difference in not only my attitude, but my ability to handle my pain.

I have always been a soap opera watcher.  I actually watch WAY too much T.V..  Since I retired and had back surgeries my life became sedentary and predictable.  That was the beginning of my weight gain, and that is when I started smoking more also. 

Bill bought me an IPod and a Istereo  for Christmas and over the months I have downloaded a ton of music and Brittney has helped me so much by making smaller files for me.  (she is so computer savvy)
So now most days, well all days I feel good enough to get up and move... I turn on the music and be busy all day, instead of sitting in my chair drinking coffee.
I think this had made a huge difference in my pain threshold.  At night or when I sit down to eat or rest, or at night when I go to bed I notice my pain is still there and just as bad as it had been all day... the only difference is I am not sitting around thinking about it.  Of course times like now I feel every breath I am taking in my right lung and back.  That has not changed from the last 3 or 4 days.  It's just that putting my mind on something else keeps me from dwelling on all things wrong with me.

Saturday for Mothers Day, Britt bought us spray tans at a Day Spa near us.  They told us that it takes up to 6 hours to get it's full effect.  Our appointment was in the afternoon.  So, I came home and watched and nothing.  I was certain it didn't work.  LoL  So I went to bed.  I awoke the next morning and went in the bathroom and passed by the mirror!!!!  I definitely had a tan!!  Layla my little island baby had nothing on her grandma now!  LoL  I just kept thinking please don't get any darker, please don't get any darker! 
Prior to the actual appointment for some reason we were both under the impression that it lasted for 3 weeks.  Nope.  It lasts only a week.  I like the color on me.  It somehow makes me feel healthier.  I had always had a very dark tan my entire life.  About 10 years ago I had a malignancy on my face on the bridge of my nose close to my left eye.  I went through radiation, and have since stayed out of the sun as much as possible.  Mostly I just watched my face and wore sunscreen.
So, going pale and being a pasty white girl made me feel sickly. 

I told Britt I had decided since I am not really worried about "longevity" anymore I may as well go back to the tanning beds and just keep my face covered.
After our spray tan, she called me today and said that she had went and bought us both a month for the tanning beds.  Unlimited use for the month.

I have the best daughter.  She really is so thoughtful and takes such good care of me.  I am truly blessed having her in my life.  For mothers day not only did she get the spray tan for me, she also gave me a 100$ bill in a note.  She told me she knows how much I am missing my mom (we are going to have a memorial for her next month) so she wants me to take this and do something special while we are away.  <3 <3 

Now..... for the weigh in this morning.  I was certain, I actually would have bet $$ that I gained weight.  As it turned out I lost 2.4 pounds.  Which is almost half of what I had gained the previous week.   
I don't know how I could have lost weight??  But, I'll take it.  I knew the first half of the week went well, I just knew that the 2nd half of the week I blew it.

I need to be kinder to myself I think and give me a break.  Accept and take credit for the loss and not think about past failures.  Be kinder to me!!  I'll take a mental note!  LoL  That would do me no good since my memory is truly failing me.  Short term things.  I can tell you what happened 20 years ago, but I couldn't tell you a conversation I had 3 days ago.  I am not sure if this is typical of someone who has gone through menopause, or if this is a sign of something else.  Whatever has caused it... It is FRUSTRATING. 

I slept terrible last night.  I refuse to be sluggish all day though.  Keep moving!  Bill installed one of our air conditioners in my room today.  I love sleeping when it's cool, and I think one of the reasons I haven't slept well is because I get too warm at night.  I am hoping it will help. 
When I was a teenager we lived in Alaska and I remember Winter or Summer I would sleep with my window opened under a lot of covers.  So, things haven't changed much.  We lived in Oregon for about 5 years before I even owned a winter coat. 

After Britt gets out of her classes she will stop by and pick up her dog and child and I will have her take my measurements.  I will post the weekly progress then. 

as promised...........

There we go.  This is my latest chart.  It shows my big jump last week and trying to get back on track this week.  All I can do is take it one day at a time and hope for good results. 

Not all days are 100%

I can't believe I haven't written in 4 days.  I had a couple really good days.  Followed by the last 2 days being very uncomfortable.  The pain which I usually have in my left lung has gone to my right lung with a vengeance.  With every breath I take in the right side of my upper back and shoulder feels like a dull stabbing pain.  Laying down makes it worse.  Sleeping the lat couple nights have been not so good.  About the only way I get comfortable is to sleep on my side with pillows behind me so my back is supported. 

On one of the sites I visit there was a woman who was newly diagnosed.  She wrote a short blog asking for help quitting smoking.  She was afraid and angry and in tears.  It took me flying backward about 2 years to the day I was diagnosed.  Like certain events that happen in history we will never forget... September 11th ... the Space Shuttle explosion.... and being diagnosed with emphysema/copd. 

I went back and was reading some of my early blogs here.  I could hear the fear in my words, I could feel the frustration of not getting answers fast enough.  God, I remember those days.  Laying in bed at night crying and thinking how Brittney would take losing me now.  I spent so much time dwelling on death that I forgot to live. 

I know I have said it a million times ( O.K. maybe only a handful) but with this disease, as bad as it gets... One really has to get on with living.  I have learned to live through the pain.  There are days when I push myself and have learned that only leads to set backs. 

To live life with this disease I must have patience.  I have to take the bad days as they come then realize I will have to take it slow to get back to where I was.  Sometimes I may never quite get back to where I was.  This little procedure they did on my heart, which I was released the same day ...I have not regained strength I had prior to that.  Of course around that time I had that intestinal bug. 

Tomorrow is another weigh in.  Last week was a 5 pound gain.  This week I will have gained also.  I am not going tomorrow.  Well, I should say that.  I will have to see how I sleep tonight.  I am exhausted. 

I started out the week on Tuesday, Wednesday and Thursday very well.  Keeping track of all I ate and eating plenty of fruits and veggies.  Friday, Saturday and Sunday were days that I didn't plan my meals, I didn't eat like I should and I ate sugar like crazy.  Today again I am back on track.  I want to get back on a schedule.  Working out in the mornings, eating well 3 times a day and snacking on fruits and nuts.  Not eating at night. 

I'll let you know if I go weigh in tomorrow or not.  I really hate not showing up, but this may be one day it wouldn't kill me to miss. 

Today was a good day

I slept really well last night.  That just doesn't happen very often!  I woke up and had coffee and then got in the shower, got nice clothes on; put make-up on, did my hair and went to the store to grocery shop.  LoL

It wasn't a date, it wasn't going to dinner, it was going to the store.  But, I felt awesome while I shopped.  I still had the cannula around my face, but today I felt like people actually could be noticing me instead of my disease.  It felt GREAT!

Today is Cinco De Mayo... years ago this would have meant a party, some drinks... at least a good BBQ and a few friends.  Today I made roasted corn and black bean salsa and Bill and I ate in front of the T.V..  So, life isn't a party every holiday anymore.  It's still life and that's what counts.

This month is a busy one for me.  Actually the next 2 months.  Saturday is Britt's boyfriends Mom's Birthday.  So, we are having a party for her.  We all pitched in and bought her a desk top computer.  She will be so surprised and happy.  Then Sunday of course is Mother's Day.  The 14th is what would be Bill and my 29th Anniversary.  The 16th my primary care doctor's appointment to follow up on the new heart meds and my heart catheter.  The 29th is Layla's Birthday... a big 6 year old girl! 

Next month the 1st is my cardiologist appointment.  Then the 12th is Brittney's Birthday and sometime during that week my brothers and I are supposed to get together to have a little memorial for our mom.  I am so looking forward to seeing them.  I miss them terribly. 

I left this out of the above only because I think it deserves it's own line....... The 10th of June Brittney is graduating with her Associates Degree and a CNA license.  She was invited into the Phi Theta Kappa Honors Society.  I am so proud of her.  For being a single mother and going back to school for a nursing degree is one thing.  But to carry a 4+ and above every term is amazing.  I am beaming I am so proud!!  She is something that girl of mine.  She is continuing on with nursing until she gets her RN's license. 

So.. the next weeks will be SO busy.  That is good and bad.  Wonderful because of the milestones.  But I don't do well with stress anymore.  It tends to almost make me have anxiety attacks.  If things stay calm and go as planned that's awesome... If things start getting hectic I'll melt down. 

I know...Breath in and out and repeat!  LOL

It's time for bed.  I have taken my medication and am coming to that magic moment.  For my records I took another 5 fiber pills today and drank 4 16 0z glasses of water.  :)

A bad weigh in, but new determination

Weigh in today.  I won't beat around the bush... I gained 5 pounds.  I looked over all my food logs and I can't figure it out.  I knew I would not have another week like last week... but I had NO idea it would be 5 pounds!  I know prior to last weeks weigh in I had been in the hospital and then had that terrible intestinal bug... so I was pretty cleaned out.
Now, I am back to the constipation.  I am wondering if that can put that much weight on me??


At any rate... I am taking fiber pills now, drinking 4-16oz glasses of water  (today) and I am making sure I have plenty of fruits and veggies with every meal.  To me 5 pounds is just ridiculous!  I just renewed my bodybugg online subscription for 6 months... and by that time if I can stick to this darned plan I should be at goal.  Of course this ping-pong gaining and losing is not helping me.


I am hoping with Spring approaching and being able to get outside I can stay focused. 


Tonight about an hour ago (8:30) I started having those pains in my chest.  Right square in the center.  It has since gone... but it hit and made itself known right away.  It is the first one I have had since the last time I was in the emergency room. 


I have an appointment to see a Cardiologist on the 1st of June.  I am hoping he says everything is fine and there is nothing to worry about with your rapid heart rate.  Crossing my fingers.

I am still me

I have been having a lot of lung pain the last couple days.  Yesterday it was so smokey outside that I could not go out and enjoy the sunshine.  It's Springtime and the neighborhood is full of people who want to burn their branches they have pruned, or grass and leaves left over from a long winter.  I used to enjoy that smell, it meant to me the changing of seasons.  We not only get this smell in the Spring, but also in the fall. 

Now it holds me hostage.  I could not open my doors to air out the house and enjoy one of our first nice Spring days... I stayed inside and looked out the window at Bill working in the yard and Layla riding her bike down the sidewalk. 

It reminded me of hot summer days, cold winter days and anytime the barometer drops... I am a hostage in my own house.  Those changes in the weather make it impossible for me to breath. 

I am feeling a little isolated anyway.  I had reached out to a couple of my high school girlfriends I found on face book.  We were so close in high school.  We did the "what have you been up too" thing where we shared what our lives had been for the last 30 years... I go to their pages every once in a while and leave a note that I am thinking about them.  I don't hear anything from them.

I am wondering if it's the cannula and the thought of a "sick" or disabled friend? 

Bill and Brittney tell me many times that I have changed.  I suppose I have.  I try really hard not to let the depression and frustration rub off on my family.  I do my best to keep my aches and pains to myself.  No one likes a whiner. 

I am very open about having Copd and Emphysema.  I am more than a woman with a lung disease though.  I still am me.  Or, a version of me.