Tuesday, December 18, 2012

CF Clinic Update, Part 1: Bone Density

On October 19th I had my quarterly CF Clinic appointment (which I realize was 2 months ago!).  The visit was considered my annual appointment, which basically translates to the appointment where the doctor orders a whole bunch of routine tests.  The annual appointment requires blood work, glucose tolerance test, and chest x-ray.  Every two years a bone density scan is ordered and this my year to have one.  The nice thing about the annual appointment is I have until the next appointment to get my test completed.  Getting the blood work is usually the most challenging because I have to be fasting and the glucose tolerance takes two hours.  The test includes having a fasting blood draw, drink a yummy sugary drink, wait two hours, have another blood draw.  I still need to do this!

I don't need a chest x-ray this time because I just had one in June with my PICC placement.  I had the bone density scan yesterday, December 17, so now I am just waiting for the results.  I had a little ordeal getting the test scheduled.  I made the appointment during my CF Clinic appointment.  The first available appointment was December 5.  I didn't mind the wait, since my next visit will not be until January.  The day before the appointment, the office called and cancelled because the tech was sick.  Really...and there is no one else to act as a substitute?  Ok, I can be flexible, even though I had to schedule so far out.  Then they told me they would not be able to reschedule me until February.  I told them that was not acceptable to have me wait nearly four months for a five minute test.  They tried to make excuses and tell me I would just have to wait.  I asked to speak to a department head. I just really feel they need to understand they are not meeting the needs of their patients.  I got a call back immediately and they just "happened" to have a cancellation for the following week.  I actually filed a complaint about the process.  I think they really need to  recognize the faults in their department and make corrects to better service the patients.

Monday, November 26, 2012

Treatments

In terms of CF treatments, I have it pretty easy.  I use albuterol, hypertonic saline, and pulmozyme once a day.  A lot of others CFer have much more to do each day.  But, regardless, I have been having trouble with getting all three treatments done.  The main problem is not being able to do HTS and pulmozyme at the same time.  Doctors say these need to be separated because HTS can interfere with the effectiveness of pulmozyme.  Theis means two different trips to the nebulizer.  I'm good with getting in the first treatment, which is always the albuterol and HTS.  But for some reason I am really having problems with pulmozyme.  I think the problem is a combination of forgetfulness and laziness.

I have really tired several ways to try and be more compliant with pulmozyme: setting alarms, designating a specific time, and doing the treatment first thing in the morning.  I have not been successful with any of these strategies.  A couple of weeks ago, I came up with a new solution to help me with being more compliant: I bought a portable nebulizer.  I purchased a DeVilbiss 6910 Series. It has a car adapter, so I can use it while traveling.  So my plan right now is to use pulmozyme on my way to work.  It has been working really well for me so far.

Traveler


Traveler 

Wednesday, November 21, 2012

Where Have I Been?

I would love to say that I have not been blogging because I have been so busy, I couldn't possibly find the time to write blogs.  I would also love to say that I have not been blogging because I absolutely have nothing to say.  But the truth be told, neither are true.  Since my last blog post in August I have been to Disney World, celebrate and decorated for Halloween, traveled for work, been to CF clinic, has a sinus CT scan, planed a retirement party, and found myself with a cold.  Lot to write about. Although reading this list it may seem like I have been busy, but I have had more down time that usual, especially on the weekends.  I have really taken advantage of this time to do other things besides blog: I started watching Desperate Housewives (!), reading, crafts for the party, and watching movies.  It has felt good to have some time at home without much responsibility. 

But I have missed blogging and want to get back into the routine.  Again, this is really about me keeping track of my CF life and other things in my life, rather than having people read about who I am.  I want to keep up...and there is lots to share. 

Wednesday, August 29, 2012

Workout Wednesday: Physical Therapy as a Personal Trainer

If anything is consistent in my life it is back problems. Having scoliosis and three fused vertebras, I will always have some degree of back problems. The key is managing my pain. For the most part my biggest tool in the tool box for back pain management is being in the water. Swimming and water aerobics are key. I am usually in the pool twice a week and this really helps keep my back in a comfortable state.

About a year ago my pain shifted from the left side of my back to more of the right side of my hip. I had my hip x-rayed, but everything was found to look normal. This pain is persistent and is at its worse in the mornings. I think the pain becomes worse the longer I am immobile. I decided to head back to my old Physical Therapist to see if he could develop a workout routine for me to address this pain.

I headed into Back to Golf with the expectation that they would put together a general workout routine for me, mostly weight lifting. But they far exceeded my expectations. The PT did a full evaluation and identified the muscles that I was over and under using. He made three specific exercises for me to do every day at home to help activate certain muscles. One of the exercises targeted the EXACT location of my pain. It was such a relief to feel like there could be hope to address this pain.

After working with the PT once a week for four weeks, he developed a program for me to implement one my own, at the gym. The routine combines stretching, back and side lunges, sit-ups, stability ball and the TRX. The TRX is a suspension system that provides resistance. I do push up, pull ups and squats with the TRX. So far I am getting through the routine twice a week. Some days I notice a huge difference and other days I feel about the same as I did when I started. In a couple more weeks I will check in with the PT to make adjustments to the routine. I am hoping to find the right combination to help address this problem.

Here is a picture of the TRX.  This is not me...I don't smile like that when I am exercising.

Wednesday, August 22, 2012

Workout Wednesday-New Triathlon Workout

I am always looking for creative ways to mix up my workout routine.  About a year ago, I did a triathlon workout in which I completed a triathlon over the course of 6 or 7 days.  This workout was based on completing a specified distance of biking, walking, and swimming and recording the time it took to complete.  Now I am thinking about attempting a triathlon with a different approach. This time I am going to workout for a designated time frame and record the distance. The catch with this challenge is to conduct all three events in one workout.  I am thinking about starting with 20 minutes for each event and working my way up to 30 minutes for each event.  I like the idea of working my way up to a 1.5 hour workout.  It will be fun to record my distance with each workout and set new goal for improvement.  Not sure when I am going to attempt this workout, but  I will be sure to log my progress here on my blog. 

Tuesday, July 31, 2012

CFRI Conference

Over the weekend I was able to attend the annual Cystic Fibrosis Research Inc conference.  This conference is really geared towards those in the CF community and not the researches/scientists/medical professionals specializing in CF.  It is a great opportunity to learn about new information, get new ideas about care, and networking.  Here are ten things I learned or experienced at the conference.

1. I learned a great deal about the research Vertex has accomplished with developing new medications for those with CF. They continue to research medications that fight the underlying cause of CF, a whole new approach to managing the disease.  Good things continue to be in the works for this, so it was exciting to hear about the continued efforts.

2. Post Traumatic Stress Disorder is a real life condition for those battling CF or any chronic illness.  I was happy to hear about information on this disorder and how to get help.

3. There was a great presentation on managing CF as an adult. A lot of the information provided was really about being organized.  It gave me some new ideas for clinic, including leaving clinic with a written plan for the next three months.  There was a standard form developed by one clinic that had a place to record all the information information at a clinic visit.  I am thinking about developing my own form to use during each visit.

4.  I learned about an inspiring book called The Breathing Room.  It was a book developed by a CF patient that is a collection of pictures, poems, and biographies of numerous CF patients.  You can learn more about the book at http://www.thebreathingroom.org/

5. I met three older CFers at the conference.  They were 59, 65, and 68.  It is hard to find older CFers and it is really interesting to hear their stories.

6. I attended my first CF support group.  This was a very valuable part of the conference to speak with others living with CF. I have often though I could benefit from this type of communication, but I don't really have anything like this in my area.

7.  There is a really cool website call the Clinical and Functional Translation of CFTR.  It is a website in which you can look up for CF mutations and look at statistics about your mutation combination such at average sweat chloride, lung function, pancreatic status and pseudomonas infection rates.   http://www.cftr2.org/


8. I learned about a new resource call CF Roundtable.  This is a publication specially for adults living with CF.  http://www.cfroundtable.com/

9. The networking of a conference like this is has so much value.  I was able to catch up with old friends and meet some new ones too.  It is so helpful to meet people living with CF...it is like an instant bond or connection.  Luckily we have facebook to stay in touch too!

10.  CFRI is an amazing organization. I am thankful for all they do.  The conference is a special and unique experience.  I feel lucky it takes place so close to home.  One of these days I need to make it to the CFRI retreat!



Wednesday, July 18, 2012

Post IV Antibiotics

My second IV antibiotic experience was very different from the first time.  The first time, I took the opportunity to take a break from all of my other responsibilities and just take the time to heal.  I took a lot of time off of work, stayed home and found ways to settle in and heal.  Everything went smooth and the medication worked well at clearing up my lungs and sinuses.

So this time, now I have some experience, I knew what to expect.  I felt like I could go on with life as normal, but just with a few extra responsibilities during the day.  In reality, these treatments are way more complicated than I acknowledged. Even though I tired working during the treatment, it was very tiring.  It was hard to focus. I also was busy during the treatment.  I traveled to Eureka on work and visited a friend in Brentwood, about an hour and a half from my house.  I made plans to meet up with people after work.  Even though the first time all the relaxing seemed unnecessary, this time, it felt like what I really needed was the down time.

Also during this course of treatment, I had an allergic reaction to one of my meds.  It started with flu-like symptoms on Friday July 6,day 12 of my 15 day treatment.  I only worked for about 3 hours because I felt so tired.  I even felt like I was getting a fever, but had a normal temperature.  Then that evening, I injected my med and I started feeling a weird feeling in my throat, like it was swelling.  After I was done with the med, my throat felt sore.  Maybe it was just a cold?  I went to bed not feeling so great.  Woke up for the next treatment, same thing and now I really did have a fever.  With a PICC line and a fever I became nervous about an infection of the line.  Because it was a Saturday, my options where limited as to who I could talk to.  I decided to go to the ER.

Basically, the ER assured me my line was not infected and directed me to discontinue the medication causing problems.  By the time the last dose was out of my system, I felt like there was never anything wrong.  My PICC line was pulled on July 9 and I have been feeling great.

Next time I am going to find a better balance with taking care of myself, resting, relaxing and balancing appointments.  I don't think I need to shut my self out from the world, but I also can't be traveling around and  being on the go all the time either.

Saturday, June 30, 2012

PICC Line Blood Draw

video
One good thing about having a PICC line is the ability to draw blood straight from the line. While on IV antibiotics I have to have labs drawn three times a week, mostly to keep an eye on kidney function.  It is so much easier to have labs drawn from the line then having to be poked.  Here is a video of blood being drawn from my line this morning.

Friday, June 29, 2012

Day 5- IV Antibiotic Treatment

It is time for a tune up.  After nearly three months of struggling to recover from a cold, my lungs and sinuses need a break from fighting infection.  I need a break too, mostly from being tired and fighting fatigue that tags along with fighting an infection.  My doctor and I agreed that IV antibiotics would be an appropriate treatment. 

I went in for a PICC on Monday, June 25.  This was nearly two years from the date of my last PICC (which was placed on June 21, 2010).  The second time was easier in a way because I knew what to expect.  But, it was also more difficult because this time took two pokes.  The first attempt at placement was not successful.  The line would not push past a certain point.  So that line was abandoned and we switched over to try the over arm.  Everything with the second attempt was smooth and only took about 10 minutes to complete. 

In terms of the medication, I am on the same treatment course as last time: Tobramycin once a day and Ceftazidime three times a day.  I also have to have labs drawn three times a week.  Luckily, that can be drawn from the PICC line. 

Moving into day 5 of the treatment, I am feeling better already.  I was actually feeling better after the first day.  These super drugs are amazing!  I could really feel the pressure release off of my sinuses by the second day and I can breathe through my nose again.  And my cough has almost completely subsided.  I am still fighting fatigue...which I am hoping is more from the side-effects of the medication, rather then the infection. 

Tuesday, June 19, 2012

I'm Losing Track

One function of my blog is to document my health: when I am sick, what medications I am taking, when I see the doctor, when I have labs done, etc.  It really serves as a place for me to keep a record so I can have better communication with the doctors.  I think it is also nice to share information with other CFers and it can also keep friends and family up to date.  But I am having a hard time keeping up.  Not that a lot is going on, but I think it is just hard sometimes to find the time to get all the information into a blog.  Here is what has been going on as of lately:

June 11: I had an appointment with the ENT.  It was a rather uneventful appointment, which is nice when it comes to seeing the ENT.  My previous sinus pressure and headaches subsided prior to the visit, but I wanted to check in with him since I was having some problems and I had not seen him for about a year and a half.  He actually said my sinuses looked good, which I had never really heard before.  He also is taking me off Pulmicort.  So as of right now, I am only doing daily rinses with no added medications.  

June 19: That's today.  I am starting another course of Cipro.  Ever since my cold in April, I have not felt back to baseline.  Although the coughing has not been bad, I have been feeling more junk in my lungs.  But I have also been fighting fatigue.  Last week was rough, as I was having a hard time getting up in the morning, not having a lot of energy to exercise, and not feeling productive at work.  We decided on the Cipro route, which is always challenging to take during the summer. 

I know these posts can be boring, but they are helpful to me to remember what is going on with my health. 




Tuesday, June 5, 2012

Hypertonic Saline- One Year Later

Well, more like a year and six weeks.  I started using HTS once a day back in April of last year.  From the beginning I have really liked this treatment.  Although it is very harsh and irritates the throat, it is extremely effective at mucus clearance.  But I am finding it may have an additional benefit.

When I went into my last doctors appointment, I was having an increased amount of coughing.  It was irritating, painful, and keeping me up at night.  While my doctor was not concerned with the symptoms I was experiencing, he did mention "experimenting" with HTS during this time.  Sometimes, as he explained it, HTS can be so irritating that it actually creates these types of coughing complications.  So from May 9-May 30 (three weeks) I stopped using HTS.  Within about a week, the long coughing spells stopped.  But soon my sinuses started hurting.  I started experiencing painful headaches and pressure around my nose.  Very classic symptoms to indicate I had a sinus infection. Initially, I thought that I developed the sinus infection post-cold, which is typical.  But on May 30 I started using HTS again and I have not had a sinus headache since! Amazing.  I am hopeful that the HTS is keeping my sinuses in check.  Now I have even more reasons to like this treatment.

Thursday, May 31, 2012

General Health Update

Nobody likes getting a cold.  But for most, it is a few days of being miserable and then back on to normal life.  It is not so simple when you live with Cystic Fibrosis.  For me, most common colds turn into full lung exacerbations.  While this has not turned me into a total germ-a-phobe, I do cringe when someone speaks the words "I'm getting over a cold."  It's inevitable...I soon too will have the same cold, but suffer through much more complicated recovery. 

On April 9, I went to bed with that I-think-I-am-getting-a-cold-feeling.  Sure enough I woke up the morning of the 10th sick.  Sore throat, fatigue, stuffy nose.  I stayed home for work for two days (and watched a ton of movies).  By that Friday, I could tell my lungs where now impacted, as I started coughing more and more.  Without hesitation, I call my CF Clinic to start a course of oral antibiotics. I wanted to start treatment right away.  Prescriptions were ordered for 750 mg of Cipro twice a day and 160 mg of Sulfamethoxazole-Trimethoprim twice a day.  I waited out through the weekend to start the antibiotics hoping the cold would just stay a cold.  But the lungs where not clearing up and I could tell they would not clear up on their own. 

After completing the two week course of treatments, I still had a lingering cough.  Not so much chronic, but I would go through coughing "spells" as I would cough a lot in a short amount of time.  I was concerned with these symptoms post-antibiotics.  So I went into my clinic to check in with the doctor.  I saw "the other" CF doctor at my clinic...he is very clinical.  He talks to his patients like we are all medical doctors, using terminology that the average person just doesn't know.  But the bottom line was this: my PFTs only dropped slightly, about 5%, but still above 90%.  His thoughts were I would recover on my own...not really the help I was looking for.  I generally think in more aggressive terms when it comes to my care.  I have a follow up call with the CF doctor on June 10.

Since then, I started having sinus headaches, so I think the cough is more related to post nasal drip rather than an infection in my lungs.  I am working with my ENT...but he is hard to get an appointment with.  We did speak on the phone and he had me start Pulmicort in my nasal rinses and increase rinses to twice a day.  I have used this medication before, but I don't think it is helping this time.  My visit with the ENT will be June 11.

One thing I love about my health care team is the ability to communicate via e-mail.  Although the doctors don't always get back to me as quickly as I would like, they do respond.  It makes managing my care so much easier.  We can be in communication without having to make appointments. This can help facilitate prescription, tests, and general advise.  Good stuff!

Monday, May 7, 2012

Cystic Fibrosis Blog Roll

No Two Snowflakes Are Alike is now part of the Cystic Fibrosis Blog Roll site.  This site was developed as a blog resource for Cystic Fibrosis bloggers.  The website has a blog roll of various CF related blogs.  It is a great place to start if you are wanting to find people in the CF community who are blogging or if you want to advertise your own CF blog.  Check out the website and follow the instructions if you want to have your blog added to the list.

Cystic Fibrosis Blogroll

Saturday, May 5, 2012

Being One of San Francisco's Finest-Fundraising

As promised (and over due), this is the first part in my new blog series called Being One of San Francisco's Finest.  This series is to reaccount my experience with this Cystic Fibrosis Froundation event.

When I accepted the nomination to be one of the Foundation's Finest, I also was making a commitment to raising $3000.  I have been fundraising for Great Strides for a few years now, so I had some experience with fundraising, but it was hard to know if I could really raise that much money.  After all, when you are raising funds for a cause, I only know so many people that I can ask to make a donation.  Luckily, for the purpose of this event, raising funds could be done by traiditional donations, selling tickets, or securing action items.  Not only was I honored to be nominated for this, but I wanted to take on the challenge of raising this money for the Foundation. 

First, I had to come up with a fundraising plan.  I decided the best goal was to raise $1000 in each catagory: ticket sales, donations, and auction items.  To achieve this goal, I basically did two things: sent a letter to everyone I know accouncing the event, providing an invitation to the event and asking for a donations and I also sent letters to wineries asking for donations of bottles of wine.  I received very little response from both of these efforts. I felt a little undersupportive and started getting nervous about my ability to raise this money.   I needed a plan B.

I decided to focus on auction items, because I know most people wait until the last minute to buy tickets and make donations.  I knew that support would come in time.  But the auction items where not just going to magically show up on my door step.  I wanted to continue to focus on a wine country theme and shifted my goal from bottles of wine to more of a wine country get-a-way.  A night stay at a hotel, golfing, and dining. I started thinking of people I know working in these industries to ask for help. 

Skipping over the step-by-step details of soliciting auction items, I found a lot of support.  Donations were made by my friends in the community and they were very generous.  Here is where I ended up:

Foursight Wines- 12 bottles of wine
Londer- 12 bottles of wine
Clos du Bois- two bottles of wine and a private tour of the winery
Fritz- two bottles of wine
Fountain Grove Inn- one night stay and $100 gift certificate to the restarunt, Equis
Fountaingrove Gold Club- a round of golf for six.
Drinking Pink Stars-a San Francisco themed pillow and wine themed napkins

In all, I far exceed my goal of $1000 in auction items.  The final value of all items was calculated at $2200! Thank you to all of my auction item donors!





Sunday, April 29, 2012

Great Strides- Hunt for a Cure

Great Strides Santa Rosa was yesterday, April 28.  Hunt for a Cure walked with 11 walkers and raised over $4300.  Thank you to everyone who walked and donated to make out team so successful.  The walk was awesome: great weather and a really good turn out.  We also had the benefit of a local sorority to volunteer at the walk, helping with registration, food distribution, and passing out water.  (Thanks to Uncle Danny and Walgreens for donation water!)

I like participating in Great Strides. It is fun to walk with friends and family.  It is also fun to meet with other CF families right here in my own community.  Being there is also very inspirational...leaving with new fund raising ideas for next year!

Also a few days prior to the walk, I was able to talk about CF and the walk on a local radio station.  Attached to the bottom of this blog post is a recording of the show...just in case you missed it!







Thursday, April 12, 2012

(Late) Work Out Wednesday -6x6 Work Out Challenge

I am in the second week of the 6x6 Work Out Challenge.  The first week was awesome!  Here is what I accomplished:

Sunday April 1: 30 minutes Yoga I tired this video, which is set up into 5, 10 minute segments.  I tried 3 of the 5 segments. This was a good video, two of the segments were intense enough for increasing the heart rate and one segment was more focused on relaxation. 



Monday, April 2: 45 minutes on the elliptical
Tuesday, April 3: 40 minutes water aerobics
Wednesday, April 4: 40 minutes of Yoga.  This time I tired this video:

Product Details

This is a great video, which focuses on breathing, stretching and relaxation.

Thursday, April 5: Day off
Friday, April 6: 30 minutes elliptical and 20 minutes circuit training.
Saturday, April 7: 60 minutes water aerobics...in the rain!

That is a total of 265 hours of exercise.  This week, however is not going so well.  I was not able to exercise on Sunday due to my Easter plans.  Then on Tuesday I woke up with a cold and not feeling well.  I have been home sick for the past two days and just trying to rest.  I am in no condition to exercise...I don't even have the energy to go for a walk.  I am feeling much better today, but I need one more day of rest before getting back to the gym.  Even though this is out of my control, it still feels frustrating.  I am going to continue with this challenge for the next five weeks...and just pretend this week didn't happen!

Wednesday, April 4, 2012

Work Out Wednesday: 6x6 Work Out Challenge

I have decided to name my current work out challenge the 6x6 challenge (Exercising six days a week for six weeks).  I am currently on Day 4 of week one.  Still early in the challenge, but so far successful.  I am planning on giving a recap of this full week during the next Work Out Wednesday post.  This post is intended to set my goals for next week.  This could alter slightly, depending on if I am able to fit in a work out on Easter.  But this is my plan.

Sunday April 8-30 minute walk
Monday April 9-45 minutes elliptical
Tuesday April 10-40 minutes lap swim
Wednesday April 11-30 minutes of yoga
Thursday April 12-30 minutes cardio, weight training
Friday April 13-Day off
Saturday April 14-60 minutes water aerobics





Tuesday, April 3, 2012

CF Clinic Update

I guess my last CF Clinic was rather uneventful, being that it has taken me almost a month to post about it.  My appointment was March 2.  My PFTs were at baseline, although the F25-75 was back down to 52.1%, down from 89.1%.  This was disappointing.  I thought my new treatments were responsible for raising the F25-75, but now that number is down around to my normal reading.  The doctor is not concerned with this because my FVC is at 115% and my FEV1 at 96.7%.  But I was really hoping to keep the F25-75 higher, just because that number is always so low. 

We discussed albuterol side effects (again).  I bring this issue up at every visit.  I don't like albuterol.  I am very sensitive to it as it makes me jittery.  My doctor and I go around and round on this issue.  She is of the belief that the benefits outweigh the side effects.  I am not so sure.  It is very uncomfortable to have my heart rate increased.  And it really effects my nervousness.  I am already a nervous person, I don't need that compounded by medication.  I asked to switch to Xopenex, which is similar to albuterol, but does not have the same side effects.  The doctor told me there are no studies to support that...but I have used Xopenex and I don't experience the same side effects as I do with albuterol.  I left the appointment without any real course of action and I continue to use albuterol once a day. 

The only other area of significant discussion was about stopping omeprazole.  I had been using omeprazole to control heart burn.  Since I had been doing good, we decided to stop omprazole to see how symptoms would be off of the medication.  So far I have been doing great. 

We also discussed my sinuses, which have been doing exceptionally well.  I have minor flare ups here and there, but I have not had signs of infection since December 2010.  We talked about stopping the use of budesonide in my nasal rinses.  After consulting my ENT, we have decided to stop this medication too. I have not used budesonide for about two weeks now.  Doing good so far, but I am a little nervous about not using any medications in my sinuses.  This is the first time in years that I have not treated my sinuses, so I am hoping it is sustainable.  But at the same time, it is nice taking a break and seeing how I respond.  I do coninute to perform nasal rinses once a day.

After the elimination of budesonide and omperzole, here is my current medication list:

Source CF multi-vitamin
4,000 units of vitamin D
albuterol by nebulizor, once a day
hypertonic saline, once a day
pulmozyme, once a day

Wednesday, March 28, 2012

Work Out Wednesday-Work Out Challenge

For the past couple of months, I have had a fairly stagnant exercise routine: two days in the pool and two days on the elliptical with one of those days incorporating weights.  I wouldn't say that I am bored with my routine, but I am just at that point where I need to mix it up a bit...I need a challenge.  Starting April 1, I am going to set a goal of exercising six days a week for six weeks.  I want to use this opportunity to incorporate more yoga and stretching in to my routine.  I also want to really push myself to be active daily, but also realistic.  Which is why I am choosing to only do this for six weeks.  At least for now.  If I just set a goal to work out six days a week as my new routine, I know I would fail.  I would get burnt out and frustrated.  This way, having an end in sight will help me keep my focus and hopefully motivation to be successful. Additionally, I am planning on exercising the two extra days at home, to avoid getting tried of the gym.

I am going to be using Work Out Wednesdays to set my goal for the upcoming week and report on my progress for the previous week.  Here is a look at the goals for Week One:

April 1: 30 minutes of Yoga- video
April 2: 45 minutes of cardio-elliptical
April 3: 40 minutes of water aerobics
April 4: 30 minutes of Yoga-audio
April 5: 30 minutes of cardio-elliptical; 30 minutes of circuit training
April 6: DAY OFF
April 7: 60 minutes of water aerobics


Friday, March 23, 2012

Thanks to Pinterest

At first I thought Pinterest was the biggest time waster.  I thought I was just suppose to go out surfing the internet looking for random things to pin.  But after a few visits, I began to see the usefulness of this website.  It is not just about posting random pins, not at all.  It is a place to share ideas, but more importantly, a place to STORE ideas.  Ever been surfing the internet and find a great recipe, but not have a printer to print it?  Then you are either trying to email it to yourself or book mark it in an endless and unorganized location on the browser, never to find it again.  Now I can just pin it to Pinterest, keep it in an organized location and go back to it later.  I love it.  I am already keeping craft ideas, books to read, decorating tips, recipes, and fun ideas to make life easier.

I thought about starting another blog dedicated to displaying Pinterest inspired posts.  But I like the idea of keeping one blog and sharing all of my ideas in once place.  I am planning on posting all the great things I make/cook/bake/decorate here on my blog. I find Pinterest so inspiring, I am looking forward to working on all kinds of crafts, not just those from Pinterest.  It is also inspiring me to try new foods and recipes, which is fun too.  Here are my first two projects:





 These are sprinkle cookies made from a box of cake mix.  They where super easy, fast and inexpensive to make.  They are a very soft cookie, I don't think it will be possible to make them crunchy.






This is a "Weekly Goals" picture frame.  I covered an old picture in fabric (the frame was actually in the Goodwill pile) and made the background out of scrapbook scraps.  This is placed behind the picture frame glass.  Then, I can write my goals on a sticky-note so they can easily be removed/added as I achieve each goal.  I love this idea because I like to keep lists and I like the idea of being able to easily add and remove goals.                          



If you would like to follow me on Pinterest, just click my Pinterest button in the upper right hand corner of my blog!

Happy Pinning!






Wednesday, March 21, 2012

A-Z Happy Birthday Brandi

Salty Superstar recently posted a blog called "A-Z" dedicated to Brandi.  It's a fun blog post, so I thought I would do something similar.  And very fitting to post on what would of been Brandi's 34th birthday.  Happy Birthday Brandi.

A-Age: 34

B-Bed Size:  Sleep Number Queen

C-Chore you hate: Cleaning the house, which is why I have a housekeeper.

D-Dog's Name: Dotty and Jeter

E-Essential start of the day: Brushing my teeth.  It's the first thing I do each morning.

F-Favorite color: Purple

G-Gold or Silver: Silver

H-Height: 5'4"

I-Instruments I played: piano and flute

J-Job Title: Environmental Scientist

K-Kids: No kids, just fur babies

L-Living arrangements: I own my home and live with my husband.

M-Mom's name: Pam

N- Nicknames: Cow and Leeners

O-Overnight hospital stay other than birth: coughing up blood and two back surgeries.

P-Pet Peeve: People who don't follow the rules.

Q-Quote from a movie: "The steps aren't enough, you have to feel the music."

R-Right or left handed: Left

S-Siblings: One, an older sister.

T-Time you wake up: weekdays around 6 am.  Weekends between 7 and 8.

U-Underwear: Everyday

V-Vegetable I dislike: Peas!

W-Ways I run late: Traffic

X-Xrays I have had: Countless chest and back xrays.  And one of my broken wrist.

Y-Yummy foods I make: Chile, Beef Stew, Red Pepper Soup

Z-Zoo favorite: Monkeys!

Monday, March 12, 2012

Liebster Blog Award


Liebster is a German word that translate to "favorite" "dearest" or "beloved."  By one blogger giving it to another, I am  saying your blog is a favorite of mine.  My dear friend at Salty Superstar has given me a Liebster Blog Award and I could not be any more excited.  Jessica is a special blogger to me because she is not just a blogger out there somewhere in cyber space, we actually met one another at a CF event and currently both live in the same area.  I have lots of friends through the internet and blogging, but it is just a different connection when you have actually met the person face-to-face and can meet up for coffee.  

As a recipient of the award, I now have to pass the award on to five of my favorite blogs.  This is tough...many of my favorite blogs have already received this award and re-awarding seems silly.  And so many of my favorite bloggers don't really post anymore, so they really are not blogs I am reading right now.  So, after a few weeks to consider my favorites, I came up with a good list.  Not all are CF blogs, but that is just the way it is right now. Here are the blogs I love, in no real order.


1. So Much for the Plan- I first connected with Danielle because we had several things in common: later life CF diagnosis and infertility.  Danielle's main focus in blogging was life when CF and trying to become a mother.  In 2011 her wish came true times three!  Yes, she now is busy with triplets, but still finds the time to blog.  Her blog focus has shifted to her family, but she is still very much aware of how important her health is for both her and her family. 


2. Supply Chain Mission Impossible- A new blog on my blog role, the main focus is a mission impossible theme of a database nerd.  It is filled with data, math, humor and topics that seem to be over my head.  And the author happens to be my husband, so why not give him a little encouragement.  


3. Guest Check- Also a new to me blog, this is an art focused blog.  Different artists feature sketches on "guest check" paper.  This is a creative site and fun to see what the different artists come up with during the week.


4. Exercising Diary of a Cyster-Although Jessica has not blogged for some time, I still just love her and her blog.  She is a hard working nurse with CF who is dedicated to exercising.  I like her blog because it is not just a CF blog, but she will post on all aspects of her life.  I think she is a special person and hope she gets back into blogging soon!


5. Lindsay's Lungs- I discovered this blog during my fund raising with the San Francisco's Finest.  Lindsay's cousin was a honoree and he talked about her story.  She was part of the kalydeco clinical trials and showed great improvement during the trail.  I can't wait to follow her progress on this medication.

Each blog that I have given this award to now has the opportunity to pass the award on to other blogs they love.  The rules are:


1. Acknowledge the blogger who gave the award by linking back to them'
2. Give this award to five other bloggers (who have fewer than 200 readers), and let them know through a comment on their blog.
3.Post the award on your blog.
4. Best of all-bask in the glory, have fun, and share the love.





Saturday, March 10, 2012

Being One of San Francisco's Finest

All of a sudden, I have so much to blog about.  Expect lots of posts this month.

March 8 was the big Cystic Fibrosis Foundation event for San Francisco's Finest.  The event was awesome!  We had a great turn-out, with lots of young people in attendance for networking and spreading CF awareness.  So far we have raised close to $40,000...and counting.  I was very excited to participate in this event and I would really like to help next year too.

There are a lot of aspects to this event that I would like reflect upon. There is so much to talk about, I am going to start a new blog series called Being One of San Francisco's Finest.  Topics will include fund raising, supporters, networking, and public speaking.  I'll also include a few pictures in each post from the event.



Wednesday, March 7, 2012

Save the Gold Dust Lounge

I can't remember the first time I ever stepped foot in the Gold Dust Lounge, but I can safely say it is one of my favorite bars in San Francisco.  The bar has a unique atmosphere, with friendly customers and awesome bartenders.  The drink prices are totally reasonable, a rare find in a big city. I have met some really amazing people while sitting at this bar including a mortician and a man from England here to ride his bike from SF to LA. I bring friends here.  I bring tourists here.  This bar has rich history in SF and has been in operation for over 45 years. 

It became my tradition to stop for a drink at the Gold Dust after CF Clinic, when I was still going to clinic in SF.  I have even made mention of my stops at this bar in previous blog posts.  I looked at it as a little reward for dealing with clinic in the first place.  Even though I don't have clinic in SF anymore, I am still a patron of The Gold Dust whenever I am in the area. In fact, after clinic on Friday (details coming in separate blog) I made my way over to SF for a little shopping and a drink at the lounge.  I was sad to learn when I arrived at my favorite local hangout, that the owners of Gold Dust had been given an eviction notice and have been told to vacate the premises so an Express store could open in its location.  Note SF already has an Express 0.2 miles from here.   I am in disbelief that this bar, full of history and character could be replaced by a big business retail facility. This is not ok. No one is going to close down my favorite bar!

Now, the Gold Dust is still going full swing.  They are also putting out a major campaign to save this bar.  I am in full support of this movement.  Please check out their website, like them on facebook, maybe even sign the petition to save this historic location. 

Wednesday, February 29, 2012

Image Expo 2012

Over the weekend we attended Image Expo, a three day comic book convention hosted by Image Comics.  It was a fun weekend full of friends, art, comics, celebrities, geeks, artists, and a good time!  Here is my top ten list of my favorite comic book convention memories!
10.  Having my Wizard of Oz books signed by Eric Shanower.  Although kinda of an awkward guy to talk too, I love these books.  He did a little sketch in each one too!
 



9. I picked up a copy of Super Ugly's book, Monsters Are Just Like Us.  This is a really cute all ages book showing that scary monsters are really just like people. 




8. We attended Dave Dwonch and Super Ugly's signing party.  This was a fun get together at a Oakland based comic book store, Dr. Comics and Mr. Games.  A good time with the Geek Savants, as usual.  Unfortunatley, Ethan lost his cell phone on the way to the party, so we had to cut out early to try and track it down. 

7. I met Robert Kirkman.  Although not super friendly or talkative, nice enough to let me take a picture with him.  You may know Mr. Kirkman as the creator of The Walking Dead tv show. 


6. I discovered a cool new comic series, 19XX.  I have not read it yet, but I am excited to find a non-super hero book. 

5. I discovered a new web comic, Boston Metaphysical Society.  Don't know if it is any good, as it doesn't come out until April.  But it looks like some good artwork.

4. I was excited to see that Dave Dwonch published the first season of Space-Time Condominium. Originally published as a web comic, now I have a hard copy of my very own. And a sketch!

Pinned Image


3. Artist Jen Oaks had a print of Amazing Larry.  I don't have a picture of it and it is not on her website yet, but Ethan, Michele, and Josh will know who I am talking about!
2. I had my picture taken with Marc Silvestri.  He is a comic cook super star and happens to be my husband's favorite X-Men artist. Super nice and friendly guy.  I like Marc because he is a fashion icon in the comic book world.  When he walks into a room, people notice.  At least I do. :)


And the #1 most notable memory at the convention:

The Dipstick Swagger booth.  These guys are really funny.  Great entertainment at their booth.  They were taking commissions and each commission included two bonus sketches.  Here are my sketches below.  Good stuff!



Here are some other pictures from the weekend!








Thursday, February 16, 2012

Brandi Thorpe- A CF Warrior, March 21 1978 to February 15, 2012

I first met Brandi as "bankgirl" during the launch of my blog.  I found her blog as I was seeking out CF related blogs to follow.  In return, she started following my blog too.  She was one of my first followers.  I learned a lot about life with CF through Brandi.  She posted raw emotion and shared in the difficulties of balancing work with health.  When hospitalized, she would refer to the stay as being at "Club Dread" instead of "Club Med." 

Brandi and I had a lot in common. We were the same age, love animals, and of course CF. She gave me great advice when I needed it the most.


She didn't blog as much this past year, so it was not as easy to keep up with her and her health.  She posted a blog in January to which she recapped an extended hospital stay, which included being there most of December, including Christmas Day.  Even after a four week stay, her lung function continued to be below her baseline.  They started to discuss an evaluation for transplant.  From this point the details are fuzzy, but she landed back in the hospital and suddenly was listed in critical condition, on a ventilator.  Hours later she was taken off life support and her suffering was over. 

There are so many things I loved about Brandi.  She was an animal lover.  She loved her "kittehs" as she always wrote it.  I will never forget back in 2009, her friend Lauren lost her life to CF.  Lauren had three dogs that were now homeless.  Brandi put forth every effort to find those dogs a home.  She also raised funds to support them until they could find a new place to live.  I will never forget the blog Brandi wrote when she found those dogs a home.  Together.  In Colorado.  I think there are so many people that would just take the easy way out and leave the dogs at the shelter to either be adopted separately or simply euthanized.  Not Brandi.  A true friend.  She did the right thing, in honor of her friend.  This is my favorite memory of Brandi.  My hope is someone is able to do the same for Brandi's fur babies. 

Brandi loved Halloween.  I always looked forward to her blogs around Halloween, because she was so excited about the holiday.  She had awesome costumes with a lot of imagination. 

Brandi's life has come to an end way too soon.  She spend a lot of time in the hospital. I hate that she spent her last Christmas there.  Even still, she always displayed a positive attitude.  A spirit we can all learn from.  Blogging will not be the same with out her.  I never met Brandi in person, but when I picture her face, I can't believe she is not with us any longer. Her smile is imbedded in my memory forever.  I'll miss you Brandi. 


Monday, February 13, 2012

Paws for Love

February 11, 2012 was the annual Paws for Love fund raiser here in Sonoma County.  I don't remember how I first learned about Paws for Love, but it is now one of my favorite days of the year.  This is a unique event filled with hundreds of auction items, art, wine, food, and pets.  The proceeds go towards supporting the adoption and rescue of homeless and abused animals.  My two dogs were both homeless before coming to live with us.  They are my best friends and are a part of our home and family.  They both have so much to offer in terms of companionship and they really don't ask for much in return. I am always trying to find ways to give back to the animal community in celebration of my own two dogs and remembering that giving a homeless animal a second chance is so important.

Paws for Love is founded by Ellyn Jaques Boone.  The main focus of the event is Ellyn's year round work with homeless, neglected or abused animals.  She helps these animals by painting with them.  Their art goes up on display for the evening at the event and also goes up for sale.  Each year we come home with a new piece of art to decorate our home with, learn the story of the artist, and support this important event.  We also have fun bidding on auction items.  Here are a few picture of what we brought home this year (plus two more wine glasses to add to our collection).





Friday, January 27, 2012

The Power of Two-Movie Notes

In my 7th grade science class, Mr. Linch would often show a movie and require us to write down at least 10 or 15 facts from the movie.  Of course, I would try to write down my notes within the first 5 minutes of the movie so I could goof off the rest of class.  While I don't really remember anything from that class (7th grade was 20 years ago), I do remember Mr. Linch was one of my favorite science teachers.  In honor of Mr. Linch and my love of science, here are 10 movies notes from the recent Sonoma County screening of The Power of Two!

1. The Power of Two follows the lives of the Stenzel twins, Ana and Isa.  They have Cystic Fibrosis and both received the gift of life through organ donation. 

2. The Stenzel twins are Japanese Americans.  Cystic Fibrosis is not common in the Japanese population.  Care for those living with CF in Japan is archaic, as many resources and medications that are common in most developed nations for CF patients are not available in Japan. 

3. Organ donation in Japan is not common.  In 2008 only 198 transplants took place.  While in the United State over 28,000 transplants took place in the same year. 

4. While the primary focus of the documentary was Ana and Isa experience with CF and transplant, the secondary focus was the concerns with organ donation in Japan.  Less than 1% of the Japanese population are registered organ donors. 

5. Ana and Isa are advocates for organ donation.  They have toured around the United States to share their story and spread awareness about organ donation. 

6. They traveled to Japan to share their story in hope to change the view of the culture's perception on organ donation.  Not only where they able to influence a change in the law to make organ donation a more feasible option, they also facilitate the availability of four CF medications in Japan. (I think last fact as provided after the movie and not actually part of the movie).

7. The documentary uncovers the raw emotions of living with Cystic Fibrosis.  Both sisters faced end-stage lung disease.  Niether Ana or Isa would of survived without organ donation.  Hearing their accounts of facing end-stage lung disease was powerful and emotional. 

8. The reality of Cystic Fibrosis is always hard to watch.  "This will be me someday" is a difficult reality to face. 

9. Hearing Ana and Isa's stories help keep me focused on taking the best care of myself.  It motivational and inspirational.  Not just in my own health, but being part of a community and making a difference.

10. These woman are very brave for sharing their story.  From their emotions to actually showing their scars, they bear it all.  In my own life, I still don't really want to talk about CF with people.  But it is important.  This film will help me to be more comfortable with telling my story. 

Wednesday, January 4, 2012

Work Out Wednesday-Swimming in the Winter

I don't really know what it is like to live in a place with cold weather.  I did live the first 9 years of my life in Chicago, but I can't really recall living in that kind of cold and snow.  Cold to me is our mornings here in Sonoma County where there is ice on the car windshield, maybe the low 30's.  Our average high in the winter is around 50.  It is not freezing, but it is not warm either.  But regardless, I still get out in the pool twice a week.  That is, I get in an outdoor pool twice a week. 

Most places that experience sub-freezing temperatures are equip with indoor pools, so swimming is possible, regardless of the elements. Being here in California, my gym only has an outdoor pool.  I'm out there in the pool no matter what the whether, but at least I don't have to worry about jumping into a block of ice.

I actually love swimming in the winter.  It is peaceful and quite.  There are not many people that stick with swimming in a outdoor pool year round.  Some days I have the pool to myself.  And I swim one day a week at dusk, so I am not only surrounded by nature, but I usually can watch the sunset.   I also think it is easy to get in the water during the winter.  The water is way warmer than the outside air, so it actually feels comfortable to jump in. 

Swimming has really helped keep my back pain under control and my lungs in great condition.  I usually do water aerobics class on Saturdays and my own version of water aerobics on Tuesday evenings. 

Here is one view from the pool.  See you in the water.

Sunday, January 1, 2012

Looking Back, but Moving Forward

As the current year comes to an end, it's hard not to reflect on the significant events I encountered during 2011.  Items worth noting include:

Becoming a Registered Environmental Assessor
I had very little problems with my sinuses and have not had a sinus infection for a whole year.
New treatments have increased my lung function and have minimized my CF symptoms.
Disneyland
Spring Training
Another successful Great Strides
Vicky and David's Wedding
Quest for 30 Parks-Park #10-US Cellular Field
Hawaii
Completed our Foster-Adopt application and have our foster parents license.
My husband has his own car.

There were difficult times in 2011 as well.  Both of my dogs each had surgery twice.  My dog Dotty had her toe amputated due to a cancerous tumor.  But there is no sign of internal cancer, so her condition seems much more manageable.  My grandma fell and broke her hip.  I struggled with managing back pain.  I learned a friend took his own life.  I said good-bye to two special CF friends, Joe and Hannah. 

What is in store for 2012?  We are in the process of planning our Spring Training trip, the Cystic Fibrosis Foundation's San Francisco's Finest event, Paws for Love, A's games, I am being considered to work in a different program at work, hoping to visit Disney World for my 35th birthday, and hoping we are matched with a child to adopt. 

I also have a few goals for the new year.  I'd like to read more.  I have a lot of "to-read" books on my list and I would like to take more time to get to my reading list.  I need to be better about taking my vitamins.  I would like to sell home made crafts on etsy.  I want to focus on being positive.  I want to set aside time during the day for practicing relaxation.

Happy New Year