Once again I have abandoned you, dear blog, for better and brighter things (well, if you consider school and skiing as better and brighter). But I know you will always take me back and maybe I shouldn't take advantage of you. Maybe it's unkind and rude and slightly selfish, but I will try to be better and give you the attention you deserve. All I can do is try.

So, where were we?
January went by quick. And I'm amazed by the power of time--what a difference a year makes. Last January-February I had been in the hospital for three weeks, having chronic fevers, no appetite and nasal prongs strapped onto me 24/7. I distinctly remember Dr. C coming into my small, semi-private room to tell me that I needed to consider going for a transplant assessment. After that, I went home for a week to try home care again. But I became unstable and went back in for another three weeks. I watched winter turn to spring from my hospital room window, which overlooked a small park and St. Michael's Cathedral. 

Today things are quite the opposite. I have experienced winter turning to spring. I have walked through the park and I have enjoyed hours of downhill skiing (made it to 10 runs in one day) and I even tried out cross-country skiing! I have not required oxygen for moderate exercise (I just throw it on when I really want to push myself) and my love for food continues to grow (I'm not ashamed to admit it!). The best part: I've been infection-free for 11 months and counting. That's right folks, I have not even required one course of oral antibiotics--I used to be on those things at least every six months. Now that I have admitted that, I will knock on every piece of wood I can find in my vicinity.

What else?
 I turned 23 on January 25th--and no, I do not feel old. Rather, I feel much younger than last year!

Last year I woke up on my 22nd birthday to my IV drip and a sat monitor (measures the oxygen level in your blood). The first thing I did was pop two Tylenol in my mouth to ease my fever (I got used to doing this every four hours) and tried to force down some lovely St. Mikes cuisine. I'm not quite sure what treat I had in store that morning but I'm certain I only tried the cereal--that's usually the only decent thing on a hospital food tray. I was probably also treated to luke-warm tea, served in a plastic cup--which should actually be a crime. I shouldn't complain too much though, as the cuisine did improve as the day wore on.

My Mom, Sister and Dad arrived at the hospital with foil "Happy Birthday" balloons in tow (I actually still have one that's perfectly inflated). My favourite nurse convinced the doctors to give me a day pass to go home since it was a "special day". I was wheeled out to our car, so I didn't have to waste all my limited energy on walking. Upon arriving home, I think my favourite gift was a nice warm bath, since we couldn't shower on the ward due to infection control concerns. Yes, it is gross.

I had a nice steak dinner/lunch, but unfortunately I couldn't eat much because I had no appetite. However, it looked delicious. The day was capped off with an ice cream cake and in order to blow out the candles I removed my oxygen tank from the room because (a)- I was new at this and didn't know the risks and (b)- I was paranoid.

That was last year. This year I celebrated with my sister and friends with a night of boardgames and rock band. Sounds simple, but the simple things are always the best! Just like a warm bubble bath after a week without a shower...yes...just like that.

This year I also missed the simple things, like a birthday gift from my dog, Julie. She was with us for 16 years before she passed away in June. She was always a great shopper, but this year there was no card signed with a paw print.

And that is how time changes you: it ages you, takes spirits aways and introduces new ones, reshapes your appreciation, molds your perspective, builds or demolishes relationships and it heals you. And it definitely goes by way too quick.

I have a confession to make. I have become an avid Dr. Oz follower--a shameless habit I developed since it first aired.  At the end of the show Dr. Oz, who always wears his blue scrubs (to add credibility? or auditioning for Grey’s Anatomy?), reveals his three prescription for health tips.

With experience, we have all become experts in tailoring our own prescription for health. We are constantly tweaking and comparing our routines to others in order to achieve our definition of health. CF forces us to think outside the box, outside of the prescription that has been given to us (mind you, CF or not, everyone should do this). Taking our pills and doing three masks and physio everyday, while good, simply does not cut it.

My definition of a successful routine is having sufficient energy to get through my day (though I still savour my 15-minute power naps in the afternoon), staying infection-free and stable (or better).

So I will share with you what works for me at the moment. It’s the ‘prescription’ that has been in full-swing since March 2009 and possibly contributed to my health staying stable and staying off any antibiotics for 9 months and counting. I’d like to believe it’s not just pure luck.

Please note this is on top of my regular health routine, which includes the following:

• Ventolin puffer daily (amount varies, usually 4 puffs, three times daily)
• 2 Colisitin nebulizers daily
• 1 Hypertonic Saline daily
• 2 PEP masks daily
• 1 Active Cycle of Breathing daily
• 8 ESC 8’s (enzymes) with meals
• 2 Losec, twice daily
• 10 mg prednisone daily (steroid)
• 250 mg Zithromax daily (everyday antibiotic)
• Pulmicort (puffer) 3 puffs, twice daily
• Oxeze (puffer) 1 puff, twice daily
• Actonel (once-a-week)
• 2 ADEKS (multivitamin) daily
• 2000 mg vitamin D daily
• 5 mg vitamin K daily

Now to the good stuff, my personal prescription:

SUPPLEMENTS:
Primrose oil 1000 mg, 2-3 times daily
Helps reduce inflammation. I also use it for my skin since I had a lot of redness and acne caused by prednisone.

Fish oil (omega 3s) 1000 mg 2-3 times daily
Helps reduce inflammation and enhances immune system. While fish oil (pharmaceutical grade) is proven to be good for everyone, there are several CF studies which outline specific benefits (but draw NO conclusions). Although I’m not part of a study, I was surprised to read about decreased sputum production...I just remarked on that last week. I have never coughed up so light and little sputum EVER. Coincidence? You be the judge.

DIET:
Reduce preserves
It’s no secret I’ve never been a fan of the old-fashioned CF diet, where the bulk of advice is to drink pop, eat chips and focus on fattening up. Instead I prefer eating meals that are nutritious and balanced--basically the way everyone is supposed to eat. Mind you, it also helps that I currently live at home and my Mom always makes good, home-cooked meals. Unfortunately this has worked slightly against her in that my sister and I have developed pallets that are repulsed by most packaged foods--you know, the ones that have 10,000 ingredients.  But I will add, I do still enjoy the odd bowl of chips :)

There are simple ways to cut out the preserves like popping REAL popcorn kernels (which takes the same amount of time) instead of packaged bags. Packaged bags are more convenient, but packed with unnecessary additives.

Reduce sugar intake
Sugar feeds infection, reduces your immune response, makes you tired and overall is NOT a good thing. Luckily, I naturally do not crave sugary foods, mostly because my parents have never been big fans of sweet cuisine either. However, I DO have a weakness for chocolate and when I’m in the hospital or on a special occasion I tend to get a lot of chocolate for gifts (which I am definitely not complaining about). So I limit myself, maybe 1-2 chocolates a day--which means chocolate can sit around my house for a long time--but I am still able to have a small treat.

As an alternative, I’ve also developed a taste for dark chocolate, which is actually GOOD for you in small quantities because of antioxidant benefits (make sure it’s 70%+ cocoa though).

IMPROVED NEBULIZER REGIME
Our clinic recently starting reviewing with patients how they clean and care for their nebulizer equipment. Well, I thought I was pretty good until I started going through the questionnaire.

Suffice to say, now I have a sterilizer for my masks. I run my masks, pep, flutter and puffer chambers through a sterilizer at least once a week. And of course wash all of the above items daily in soap and water (formerly I had only done the latter step).

I also let my compressor run for 1 minute (or until the tubing is completely dry) after I finish a treatment. This removes the opportunity for germs to take up residence.

ORDER OF TREATMENTS:
Before: ventolin, antibiotic nebulizer then physio
Now: ventolin, physio then antibiotic nebulizer. Which makes more sense since I'm not coughing up all of my antibiotic.

HAND WASHING
Every time I come in the door, I immediately wash my hands. Sounds simple, but it is also simple to forget.

I keep antibacterial wipes in my car, so when I get in my car after a class I use the wipe. When I’m driving home, I do not trust myself not to touch my face, so it’s just easier to get that out of the way.

I also carry antibacterial with me everywhere, I know there are studies circulating about how it is being overused and creating superbugs, but as far as I’m concerned any bug I pick up now will be a superbug to me, so a little caution won’t hurt.

BUILDING UP A GOOD DEFENSE:
When people are me are sick, I figure my best option is to build up a good defense. While clorox wipes and antibacterial will help, bugs will always find the gaps. In order to build up my immune system I take extra vitamin C and extra strength cold FX (when I feel rundown). I also use a saline nasal rinse which, while not the most comfortable thing ever, certainly works well.

ADDING VARIETY TO PHYSIO:
Doing PEP three times a day can be exhausting. So I like to switch it up by doing PEP twice a day and Active Cycle of Breathing at night. Switching up your routine keeps you more motivated and ensures you are targeting all areas of your lungs.

Here is what I’d like to add to my prescription for health:

• Oil of oregano to boost my immune system (warning: I put a few drops under my tongue the other day and it is incredibly potent)
• Exercise on a regular basis. I am good at working out when I’m on vacation, but once school starts up I tend to put it on the back burner.
• Drink more water. I dislike drinking it, especially when it is cold out... so I will make a conscious effort.

This is quite a lengthy post, but I wrote it with the hope that someone is able to benefit from what I have learned. I also hope others will share their own prescriptions!

Today was my first day back to University in half a year. Back in December I started IV’s literally a couple days after my last exam of the first semester. I was pretty confident I would be off them and able to return by the start of our second semester in January. However, that was not the case and what started as “holiday IVs” turned into “I’ll be back soon IVs” and finally “extended leave IVs”. Even when I was in the hospital with daily fevers, hooked up to 24/7 oxygen and unable to eat, I was still pretty confident I could go back... that really sounds delusional now, doesn’t it?

As the weeks wore on in club med, I got the message my body was clearly trying to tell me: Time to take a break Lindsay!

I dropped the majority of my courses, but was still able to complete half of one via e-mail (the instructor is allowing me to continue the other half of the course this semester... it was pretty impossible to report on Guelph-Humber news from my bedside) and I was able to complete Statistics for Media.

GH Comeback
Now I am officially “back” with some minor adjustments. I decided to drop to part-time studies since I now have to wait an extra year to graduate anyway. This will allow me more time to do things I should be doing like working out. I will say though, this has been difficult for me as I feel quite capable of taking on a full load. But as is usually the case, what you want and what you need are different things.

Although it hasn’t even been a full year since I took my partial leave from school, it felt a little surreal to return. I received the mighty reality pinch when I was reminded that even though your world comes to a stop when you are cuffed to an IV machine, the rest of the world doesn’t lose its forward momentum. Unfortunately I have been mulling over this fact for a while now, usually things don’t bother me too much and I am able to take things in stride. But the fact that I was able to keep up in school all these years and suddenly not be able to is a little crushing. There is a buzz among the fourth year students who are excited to be finishing up and starting their lives (or moving on to the next phase of continuing education) and I have fallen behind the pack. I am used to being a front runner and I don’t really enjoy the rear view--okay, unless we're talking about James Franco.

I’m also a little worried that the finish line is getting pushed further and further back--so I hope it doesn’t fall out of site. I’m not trying to win a race, I just want to finish it! So let’s cross our fingers and hope that a silly little cold or chest exacerbation doesn’t trip me over the next year and a half. The final stretch is where all the sweat, tears and glory emerge.

Finding your Pace
Furthermore, I am contemplating--and seriously considering--applying for our professor’s (Mark Lipton) internship. I’m not sure if this is completely defeating the purpose of dropping down to part-time studies, but it is an opportunity and I rarely walk away from opportunities.

Admittedly, I have a tendency to dive into things, especially after sitting on the sidelines for such a long period of time. When you’ve been sick and made to feel useless, the second you feel better you want to break into a sprint before the pseudomonas (a bacteria I grow in my lungs) police can catch up. I guess the problem here is I need to learn to pace myself, but it is just so hard!

Especially when you are young with so many opportunities and more awareness than the average person (or so I assume) that time is not limitless.

So should I go for it all or be conservative and hold back? The jury is still out (the jury being the voices in my head). My mind is saying yes, but who knows what my lungs will think about this!

My favourite part about going back to school is stocking up on necessary (and unnecessary) supplies. What can I say? White out, pens, file folders, notepads, sticky notes and binders all lead to my uncontrollable excitement. Maybe this is why I always end up with office jobs—the post-its get me every time.

So today I went to Dollarama with the intention of purchasing a few birthday cards and—as is usually the case with Dollarama—ended up walking out with much more than I had planned, including some lovely additions to my school supply collection. I only purchased a few file folders because I don’t really need much this year, but I realized that my list of back to school supplies has extended to include some rather unusual items.

Additional back to school necessities for Sept. 2009:

One of the most important weapons for avoiding colds, the flu and nasty bacteria—either of which could easily be a one-way ticket to months of IVs, lengthy hospital stays or transplant status. I wash my hands like crazy, but because I don’t travel with a kitchen sink and soap (my purse is not big enough) antibacterial is the only way. I am glad to see more places are setting up purell pump stations and more people are actually using it. It makes my job—of staying healthy as long as possible—a lot easier.

• Clorox Wipes

For the times people don’t wash their hands properly (we’ve all seen them in the bathrooms and been grossed out—you know who you are!!) and the times people sneeze and cough all over shared computers, equipment, etc. Clorox wipes are essential for any computer lab, which I consider a boardroom for bacteria plotting to take over the world.

• Cold FX

When Clorox and antibacterial fails you, there is Cold FX, which is plan C. Apparently the extra strength works wonders when you have the first signs of a cold or flu (e.g. sore throat). I think this September I will take the milder everyday version for preventative reasons, my faith has yet to be restored in my immune system.

• Vitamin C

Yet another immune system booster that is no big deal to add to my pill regime. I’m not big on drinking OJ unless I have a ridiculous sugar crash (I’m not diabetic, but my body likes to surprise me with sugar lows for the heck of it) sooo I prefer the pill form.

• Flu Shot and H1N1 Shot

I did not get my flu shot last year because I kept getting sick… so I've got to get on that this year. Also, because of the Mex—er, swine pigs (sorry, I’m a terrible person) I must weasel my way into getting the H1N1 shot. I was told that people with respiratory problems are always high priority anyway, so I will most likely be getting it (and it might be two shots). The media is already hyping up the back to school pandemic, so I’m not feeling so hot about adding that concern to my agenda. I really don’t think H1N1 will fit into my schedule this semester—sorry swine flu!

Fun fact, if someone is “high-risk” for flu complications in your household/someone you are close with, you should also get your flu shot because you can be a “carrier” (have no symptoms, but pass it on). That is probably a housewarming gift you should skip.

Other possible additions to my back to school shopping list: oil of oregano, tea tree oil and other immune-system boosting valuables.