Thursday, January 8, 2009


For some time now I have been wanting to find my way spiritually. I was not raised in church, I started attending here and there in college. My husband had a bad church upbringing and his 'faith' was dictated by whatever the stepfather of the day practiced or believed so needless to say he is not big on organized religion. We have attended a church that we both like off and on the past few years, more off than on. Last year I really wanted to 'figure it out' so to speak. I decided we would go all the time, there was some dissention there, some conflicting priorities, some disagreements and it rarely materialized. I got dejected and didnt get past genesis in the bible.

I did do one thing right and found a Bible I can read. It is called the international reader's version. A friend of mine showed me a website, perhaps I can still find it somewhere, you can put in a passage from the bible and then select the different versions of the bible and read the way it would be written in that Bible. The version I chose is meant for reading, it is in 'todays' language and is marketed towards teens etc but I felt it was a good place for me to start and be able to understand. There is also a study guide you can get to go with it and it has extra stuff in the back for instance you want to read all about Mary, look her up and it will tell you where she is and what to read, what she is all about etc.

This year I told hubby that I would not force him to go to church like I was previously trying to do but Lillian and I were going (he was always fine with this it was just my hang up about going together). I also decided that part of the problem with not going was that the church we were going to was 40minutes away in good weather so I looked up all the churches in the town where we live last week. I decided that while I was trying to find a new one I would go by myself. I settled on one that I knew did alot with the community and had a kids program. When I looked them up on the net they had a very good website, they looked like a 'modern' church, they touted an multi-media presentation, child education through 5th grade, and alot of extra programs and community affairs to get involved with. PLUS it was only 1.5 miles from our house.

The church was nice, it was very very similar to the one we were going to that we liked but perhaps about 1/3 to 1/4 the size. It's very contemporary and relaxed. Onething I didnt like about it was that their kids classes end at 5th grade when middle school seems to be SUCH an important time for that sort of thing. It wasnt really a negative for me because we dont even plan to be in this town for that long. The only true negative was that they ahve a band not traditional choir and there was that smokey stuff up around the stage (it wasnt heavy like a rock concert it was more for the light effects, you couldnt see it coming otu or anything) but I swear I could smell/taste it and was worried it would affect my lungs so I got up and moved way to the back and I would hate to sit back there all the time.

Anyway I have heard of the 'honeymoon' period where you see, feel, experience more spiritual related items after inviting God into your life. Well I think taht is happening to me. I have had a couple things happen. Today was the coolest one. I have alist of books I want to read this year so I went to library and of course forgot the list so I was searching for some of the titles I could remember and they didnt have them in, I remembered the title "when bad things happen to good people" I searched it, it was in, I wrote it down with authors last name, went to shelf pulled that number and the last name. Well the book in my hand was called "Who Needs God" hmmm turns out the guy Kushner is a spiritual counselor and rabbi and has written alot regarding religion not just the book I wanted to read. What makes this even more cool is that I had prayed earlier in the week for God to help me find my way, that I wasnt really sure what I needed or what I was doing or even exactly what I believed but I was going to try if he could help me. Well then the other day I was thining that I wish I could find a book about teaching religion, answering tough questions and basically explaining about religion. Hmmm what do you think this book does? Yep! And it has very good reviews, the man is very well regarded, the book is written for any religion etc. Very very cool I am super stoked about reading it as well as his other book that I went there for. Matter of fact I am signing off now to go get started!

Sunday, January 4, 2009

Read All About It

I love to read but for a long time I just read my college books required and not alot else. Then life got in the way and I just havent been reading much. I love to read, I dont know what happened. I just bought a night light for my bed last week (it's not a good fit I need to take it back but anyway) so hopefully that will help and when DH is watching his TV I can read. While I enjoy some non-fiction books there are just so many important non-fiction books out there to help you improve your life I cant see spending the limited time I have on fiction. If I want to read something like a Harry Potter that's fine but I would like to fit it in addition to one non-fiction.

I have to fit my reading in amongst my treatments, my work related reading, all my internet habits, preparing my budgets, and reading the ABC and Curious George each night LOL. Here goes nothing, a girl can try right?

My book selection so far though I may alter it a bit as the year progresses (random order):

123 Magic
When Bad Things happen to Good People - Kuhner
"Better' - Atu Guande
Some sort History Book - (perhaps Steve Ambrose?)
Some sort developmental psych book for children--this just interests me how their brains work
Woman Power - Schlessinger
Happiest Toddler on the Block -
Priceless - Ramsey
Proper Care and Feeding Marriage - Schlessinger
5 Love Languages - Gray
Millionaire Next Door - Stanley
Power Praying Wife - Omartin
QBQ - Miller
Purpose Driven Life - Warren
Dare Discipline - Dobson
Raising Girls - Dobson
Scientist in the Crib
Guerilla Marketing - Levinson more for DH maybe I will get him it on tape or I might read it

New Year Goals

So my health goals are more of a PDP plan and those are listed separately. My 2009 general goals are:

Maintain my lungs & get in better shape
Loose 20ish lbs (Going more by size and shape though)
Read more (shooting for 1 non-fiction book per month on average)
Be a better wife (less nagging)
Find a church I feel comfortable with & GO (read at least some of my new reader's version bible)

I read a fun way of keeping tabs on your goals which is to check back on them each month so feb will be 2/2 checkup march will be 3/3 checkup etc. This sounds like a good plan.

Thursday, January 1, 2009

2009 FYI

So my 2008 wasn't so hot healthwise which makes it even more important to ensure I am on the right track for 2009. Mid 2007 I did a plan called FYI (for your improvement). I like the snapshot in time, the accountability, the follow-up, and the sense of direction that came with it. I followed up with a PDP (performance development plan), like a year end review. Being that this plan is for an entire year I think I may need some mini goals or check-ins.


15Dec FEV1 103% FEV25-75 102% those are excellent numbers, the best report that I have had. I have trouble believing it, as a matter of fact it is not 'confirmed' in my head unless I see it again. I looked back over my records and I have seen a few points higher on both values but never in the same session were both numbers that good, so to me that is the best numbers I have seen and a good way to close out 08 after a rough year if only I can keep those. I have been slacking in frequency and intensity at the gym and have gained weight so I would like to improve on both of those fronts as well; I have not been eating very healthy either.

And Now For the Record . . . Here is MY FYI plan

Current Regimen:

TOBI, 2 pulmozyme (in am), hypertonic saline for TOBI 'off' months

xopenex or albuterol before treatments

respirtech quickstart 2x a day 30 min

respirtech custom 10 minute as needed

workout 2-3days a week

zyrtec, singulair, zithromax, nasacort, advair HFA, prevacid 2x day

allergy shots & xolair

calcium+vit D, 500mg vit C 2x day, probiotic, B complex, Magnesium (after ABX)

My FYI Plan:

Up my workout routine to 5 days a week

Start jogging again with a goal of getting to 3 miles 2-3 days a week (with my Knees permission)

Loose around ~20 pounds, more a size/look/feel issue but that's probably about max I'd want

Be evaluated for Tiger-2

Do more huffing throughout the day

start doing more HTS between now and when I can no longer (if I do tiger-2)

Start doing a BS monitoring 2x month or so

FLUSH MY PORT ON SCHEDULE (I am horrible about this)

Find a more efficient & compliant way to wash/sanitize my nebs

Determine a new peak flow range

2008 In Review

Well the health review of 2008 was such a monster I wanted to do my personal one separately. I think I have decided to use this blog as my health/personal stuff and use our family blog for mostly family related items.

This year time was a bit sparse on personal hobbies, accomplishments etc as with feeling run down I was just focusing on what was important: my health and my family and trying to do a good job at work.

I continued to work out though the second half of the year I started to do less intensive and less frequent though I still maintained the habit and I am very thankful for that. Beginning of the year I had planned to loose 10 pounds, instead I find myself closing the year 10 pounds heavier. This is ahuge disapointment to me. I was doing really well and had lost 9 of the pounds when my health started really giving me problems and I just really let everything go so to speak, gained back what I had lost very quickly and then proceeded ot gain 10 more. For many CF'ers this owuld be a good thing but I would really rather get back down to a manageable, easy to maintain 140 which still leaves me with a 5 pound buffer of 'fluff' that could easily be lost without impacting my health if I were to fall ill.

I picked up a new hobby of couponing this year. I really enjoy it, I have met some new friends from doing it and I save alot of money.

We changed our life completely by becoming 'Dave Ramsey'ers'. We have established an emergency fund, paid off our doctor bills, credit cards, first of two student loans and a decent chunk on our house for re-financing purposes. Our new, more frugal lifestyle has gotten us on the same page with a common goal and it has put meaning back in to some of the simplest things. Going out to dinner or the movies is no longer taken for granted, somehow it makes everything special again. We have set our eyes on the prizer of being debt free.

Perhaps most enjoyable has been watching our family bond develop. We both love being parents and Lillian has developed so much over the past year. The 2-3 range was always my favorite before I became a parent but I figured with the whole 'terrible two' talk it might not be my favorite as a parent but so far it is.

Work has developed well for me this year. I have assumed greater responsibilities at my job and am enjoying my role. My greater administrative responsibilities have prevented me from doing some portions of my old job that I love and wanted to get better at but for now I am riding out the opportunity I have been given as I think that is best. There will be time next year to get back to developing methods and such.

One of my goals for 2009 is to track things throughout the year a bit better. It seems you get to the end of the year and its hard to remember everything that happened. One tradition I will start is a year end letter that we will place in abox and then as the year goes we will save tidbits and memory makers from the year in that box and we can review them at the end of the year.

2008 'A Bump in the Health Road' ....hopefully

Well 2008 was definately my roughest year since diagnosis. Not roughest ever, having had problems and no reason to which to attribute them is far worse than at knowing what monster you are dealing with and just having a hard time. I reserve the right to change that as the problems I am dealing with and the monster evolve.

On this last day of 2008 I am hopeful that 2008 was just a bump in the health road. We have noted all the problems I had and should a problem that seems inflammatory in nature occur again we will have an action plan. I am really really ready for some smooth sailing, unfortunately Feb/Mar are usually my rough months so I dont think that will happen but here is to hoping. I am going to do everything in my power to try and stay healthy and we will see where that gets us.

The year went something like this:

Feb-The year started with a really mild cold courtesy of a visit to a relative's house with small children. Of course they didnt realize the child was sick, or didnt feel it relevant to mention until we had driven 5 hours to stay the weekend. As is so often the case a mild cold 'not worth mentioning' for someone else stayed with me for months and the after effects ended somewhere around September.

Feb-doc visit #1 FEV best ever even with cold most likely as a result of my fitness efforts. No treatments started.

feb-doc visit #2 PFT's down from prior weeks visit, more run down feeling (sick about 5 weeks by now). Doc said numbers were still looking good so option for orals or IV's I went with orals dumb dumb move.

Mar-After 2 weeks cipro not feeling better. ,

Mar- FEV1 down about 15% from 1st visit. Started IV's. A few days into TOBI/Ceftaz I caught stomach flu followed promptly by a bad head cold.

Mar-week2-Not responding to IV's switched from ceftaz to merropenem and added levaquin.

April-week 3 Will ever do merropenem without IV zofran again but it 'worked'. FEV1 of 105.3 but I dont feel 'right'. Doc's don't believe me and deny my request for steroids.

April-one week post IV's. Go back see doc #2 revisit my concern. My PFT's still look good but are showing 20% variability anywhere from 5 to 25% below prior week. Upon review the prior weeks numbers also showed high degree variability (unusual for me)

April: The week after the last visit I continue to feel soemthing is not 'right'. Friday I though I had caught a cold but I think in hindsight it was CF related not feeling good. I continue to have the shoulder and back pain I described in clinic but it increased then hemoptysis started. I had not had hemoptyis since Mar2006.

April:doctor #1 decides we should get an AFB culture to check for MAC etc and treat with a weeks worth of zithromax to see if things resolve while waiting the initial smear results.

May 7: I returned to the clinic with an 'I told you so' attitude. I did not feel my problem was infection related but the doctor wanted to do more IV abx and I wanted to 'just get better' so I thought well perhaps the first round didn't get everything and they were going ot put me on a strong dose of zosyn which I had never had so I was hopeful it would work.

May8-9: During this time I got an oral glucose tolerance test, some other assorted bloodwork to check on a few things, and started my IV's. I took the full time off of work and promised my dr that if after the first week I hadnt rebounded I would be admitted to rest as that is what he was concerned was not allowing me to get better.

May: Finished the IV's and had good PFT's, still didnt feel everything was resolved. Numbers looked good so I was sent on my way.

The next week I got severe pleurisy to the point where I couldn't move or breathe in but it would only last a maximum of 30 minutes. I was told to start high dose ibuprofen therapy. While a bit better after a week or so I was still not normal and still had alot of pleural pain.

I emailed clinic nurse and described to her my concerns over this chain of events and said that I was concerned but wasnt sure if I should come in or what given that the Dr basically didnt seem to think anything was going on and asked what I should do. At this point the dr's said I needed to see someone else. Despite the fact that we had talked about what we could do if I continued to have problems I guess they decided I was too much hassle and gave up. Oddly enough I had been considering moving clinics since the end of 2007 because I felt my clinic was not aggressive enough. I love the clinic and the nursing staff but not so much the doctors.

It was off to a larger clinic for me, one that had an adult specialized clinic but was 70+miles from my house instead of just driving 10 minutes from my work so a large inconvenience but it proved to be worth it.

While I was waiting for the new clinic appointment I continued with as high dose ibuprofen therapy as I dared given the previous hemoptysis. I did not go on antibiotics because I did not feel I was having an infection related issue.

June(end June)-I saw the new doctor. Although not as big a fan of the clinic and how some things are set up I really liked the doctor. He was very thorough and explained everything. I was sent off to get a new sputum culture, ALOT of bloodwork--things I have never heard of before (all of which were explained to me), as well as a high resolution CT with contrast.

New clinic visit#2. We reviewed results and further discussed the possibility that my problem was inflammation based and not infection based. Some of my bloodwork seemed to indicate that the ABPA was previously diagnosed correctly but nothing was a red flag showing that I necessarily had anything going on right then. Dr wanted to ensure that I did not have anything new growing deep in my lungs that putting me on steroid therapy would allow to flourish so we decided on a bronch.

August11-I got my bronch. Afterward I had ALOT of pain, fever, and the shortness of breath lasted for days.

Sep New clinic visit#3-bronch results show no sputum production, no more so than any person without CF. He found it very strange and other than that nothing was notable, some areas looked a bit inflammed but again less than they would expect to see in a CF'er who wasnt having problems. (Sometime during when the pain started I seemed to stop producing sputum, this was initialy part of the reason I was so concerned because that is just not normal for me. Had I been feeling great and having no sputum I would have been thrilled!)

We decided to do a 2 week dose steroids with 1st week being at 40mg followed by a week long taper. After 6 days I started to feel things 'open up' I also started to have mucous again. I called and requested to stay at 40mg for a second week as I was concerned whatever needed to be done had just started to happen. So we did 2 weeks at 40mg followed by a 3rd week taper.

After steroids things started to level off and improve. I saw the doctor 2 weeks after finishing steroids and I felt much much better. I was disapointed to see my PFT's were still only 95% which is low for me but he felt that things would continue to stabilize and that I had not necesarily lost all that.

I felt like my lungs were all better but it had been a long year already and I felt just really worn down and exhausted for september.

October- I finally started feeling better around mid/end of October.

November-After about two weeks of feeling pretty good I caught a really nasty cold. This is not my norm as I can usually shake a cold off and I dont get truly sick until feb/mar timeframe normally. This turn of events sent me into a mental tailspin of worrying about whether this was my new normal. After a week I wasnt sure the ocld was leaving and requested cipro, after two weeks I felt mostly better but requested a third week and a follow up appointment, during this third week I had a few days where I was horrible but then I shaped up and started feeling pretty decent. Two days after ending the cipro I started doing great, I hadnt felt that good in a long time!

Dec 14 Follow Up Appointment: I was feeling really good but decided to keep the follow up appointment out of due diligence, because I was going ot talk to them about doing tiger-2, and if my lungs were doing good I wanted to see what my baseline was. My best numbers ever FEV1 103% and FEV25-75 102% I was super excited.