Wednesday, August 31, 2011

The Dreaded Purchase

Purchasing pregnancy tests has always been an ordeal for me. There are two main issues with going to buy pregnancy tests. The first issue is the decision to be an optimist or a pessimist. More specifically, should I go to Costco or order a large quantity online to save money? The simple answer would be and should be Yes, of course. We all know life is expensive and babies are expensive so I might as well save some cash! Here is where my over thinking brain gets in the way. If I buy a 20 pack of pregnancy tests then am I admitting that I think it will take 20 months to get pregnant? Is it extremely pessimistic to purchase bulk quantities of pregnancy tests? It is like admitting, well I am sure I will be using dozens of these damn things, getting disappointed month after month so instead of running to the store every 4 weeks I will just purchase them all right now to save me some time and money. And that saving money thing, yeah doesn't work so well if you buy 20 pregnancy tests, but only use 7 because you got pregnant within 7 months.

Oh and if I really want to over think it then what about the issue that if I have the pregnancy tests available then I will go through the pregnancy tests like crazy. Yeah, I know I probably only ovulated 5 days ago, but you never really can be sure so I am just going to test..I have 20 of these damn things anyway! So either way in the end I really won't be saving money anyway.

Now that I decided to be optimistic (and prevent a pregnancy test taking addiction) I have come to my second conundrum. Where to buy these tests? If I go to the target down the street from me I may run into people I know from the neighborhood. Last thing I need is my neighbors asking me about my fertility. So I try to go to a store kinda out of the way, but then I hate when you go back and it is the same cashier! Like, Oh hi! It's me again. Yeah, making my monthly purchase. In which they will undoubtedly be thinking something like, Guess those swimmers don't swim too well. Awkward! Okay, chances are they probably won't remember me out of the dozens of people they see each shift, but I like to think that I am abnormally memorable and so they would in fact recognize me instantly.  So this leads me to trying to buy pregnancy tests at several stores, nowhere near my house, with multiple cashiers at each location.

Sometimes I think I have problems, I mean besides the whole CF thing.

Monday, August 29, 2011

Good Luck

Good luck to all the cysters starting work in schools this week. Have fun and stay healthy!!

Thursday, August 25, 2011

Potential New Drug for CF

Okay, so if all goes well it won't be ready until 2017. That just means we have to keep ourselves alive and well for another 6 years. I can put up with that. It is nice to see so many drugs in the pipeline that will hopefully make our lives longer and more enjoyable.

The article can be found here.

Wednesday, August 24, 2011

WTF Periods

About a year ago I went off of birth control after being on for a long time. I assumed my period would be wacky because they were before birth control, but I was also a lot skinnier back then. Miraculously, they were totally normal. I used a calendar to keep track of when they started, ended, and when I believed I ovulated. For the first time in my existence when the nurse at a doctors appointment asked me, "When was the first day of your last menstrual cycle." I didn't have to look at her like she was crazy and then make up some random date that sounded good. 

Here is where the WTF part comes in. The second the hubber and I decided to start trying to have a baby my pretty little predictable periods got all messed up. Really, what is up with that? The first month it was really early. That was kinda nice because my two week wait was not two weeks and I didn't have to wait too long to be disappointed. This month it was supposed to come the 19th. It is now the 24th. I actually think I ovulated a week late so I wasn't overly concerned (although weirded out that my body decided to ovulate late), but now I am spotting a lot. WTF! My body was in working order a few months ago and now it needs to get it's act together!

I know I know, stress makes your body do weird things. The problem is trying not to stress about stressing is well, stressful! And during the two week wait how do you not think about it every second your not busy? I don't think it is possible. So for now I am stressed about stressing too much, thinking about my two (or this month 3) week wait, and watching my body tease and taunt me by taking my pretty little cycle and making it go crazy. All you other cysters (or non-cysters) that are ttc I hope very much that your body is behaving much more appropriately than mine!

BTW school is still going well and I decided I just love my job because kids really are just the cutest people to spend all day with!

Tuesday, August 23, 2011

Morning Already?

It is 6:20am and I am nebbing away, this is so familiar and yet I feel like I woke myself up in the middle of the night. I need to get used to 6:00 wake up calls again.I woke up a few minutes before my alarm (miraculous considering I never wake up that early in the summer) thinking it was in the middle of the night. About 3 minutes later my 5:50 alarm went off. Really?! I thought the sun would be up at least..I guess the days really are getting significantly shorter.Amazing how spoiled we get having summers off.

I had my first day of school yesterday without any kids. Only meetings. I came home and took a hour long nap because I felt wiped out. Yikes. These next two weeks will an adjustment!! Good luck to anyone in the same boat, I empathize with you. Everyone else probably thinks I just need to buck up considering most of the population does this year round...I am working on it!

Sunday, August 21, 2011

School Days, School Days, Dear Old Golden Rule Days

So it's that time of year again. School time! I officially start back at work on Monday and the kids show up Tuesday. I am very excited to start work again because I get so stir crazy in the summer. We had a meeting Friday and it was so nice to see everyone again. It is amazing how much more you like your co-workers after a 2 month break!

Although I love working and feel rather lazy and worthless on summer vacation. Mainly because I am uber lazy in the summer. So lazy that my husband came home from work the other day and exclaimed, "Wow. you are wearing make-up today!" Yes, that is how bad my relaxing summer got! So despite being excited about starting school again I have a few apprehensions. The first and foremost has to do with my health. I have increased my PFTs since summer started. I started doing treatments 3x/day, swimming, yoga, sleeping 8+ hours a night and being oh so good to myself. When school starts I will have 6:00 mornings and a much busier schedule! I am a little worried that I will not get enough sleep and miss more treatments because well, life sometimes gets in the way. When you have no life (read: summertime) it is hard for it to get in the way.

The second problem is one that all people who work with, have, or have seen children know is a huge issue with children. They are so GERMY (like how I made it neon green- a CFers worst nightmare). Last year a few days into work I was leaning over helping a kid on the computer. She turned to ask me a question. We were face to face. She opened her mouth and started, "How do I...ACHOO!!!" Being sprayed violently with little germy particles is not so fun regardless of your health status. Luckily, as I wiped the goopy slime from my face she did apologize, but the apology was not enough to keep me from getting nasty little cold. It is so hard to avoid getting sick when there are 30 people crawling with germs. I keep hand sanitizer with me at all times and take airborn or emergen-C as if my life depended on it, but it is so hard not to pick up what those little rascals are oh so willing to share. I am especially nervous for the first few weeks because it seems that after being in a relatively germ free environment for 2 months being inundated with bacteria, virus, and germs is not so conducive to good health! Who would have thought! 

So all you CF teachers, aids, and school workers good luck with your new school year and as hard as it is STAY HEALTHY!!!

Wednesday, August 17, 2011

The Problem With Lung Plugs

Yes, I am talking about plugs again. Seems to be the theme of my life at the moment!

So I forgot to mention something the doctor told me that you may find useful to know (or not). I was telling him about my painful spot and that I hacked out a big, fat, juicy plug that I believed to be the sneaky culprit of my pain. He said that it very well may have been the plug that I was whining about. He wasn't as super excited stoked about my plug as I was, but maybe you have to have CF in order to get excited over those types of things. I was still sitting there super proud of myself feeling like I was his best and favorite CF patient for single handedly coughing up a monster plug when he told me some sad news.

He told me the problem with plugs is (I knew at this point I was not going to be grinning ear to ear for long) they cause problems even when they are no longer in the lung. Well, damn I am definitely not smiling anymore. He explained it like this (he is a very good explainer so I hope I can make as much sense as he did) a plug is the build up of mucus in your lungs and it can get hard and very, well, stuck! Unfortunately, this can cause the airway to get stretched out because it needs to accommodate this fat unwelcomed guest. So when a patient so miraculously (I added that little detail, but I could tell he wanted to say it) coughs out a very large and bothersome plug its damage to the airway is still present. It creates some nooks and crannies if you will. And anyone who has ever eaten an english muffin knows that things (like butter or mucus) will pool in those nooks and crannies. I have never liked English muffins and now I think I know why. So even when the plug is gone that airway is MUCH more susceptible to replugging.

So now I am feeling less thrilled about that plug and even slightly regretful for taking the picture of it (well, maybe not because it was pretty crazy to look at) and a little more stressed out about my little stretched out airway. He told me to think about that as a spot I have to give extra attention. I should also call him if it becomes extra painful again and maybe I will needs orals again. So needless to say the problem with plugs is they are the gift that keeps on giving...or something like that!

Tuesday, August 16, 2011

CF Pregnancy According to My Clinic

If you missed my clinic update click here. I didn't have time to go into too much detail so I will discuss the information my doctor  and nutritionist gave me about CF and pregnancy.

The Doctor:
So I talked to my doctor a little about pregnancy. In the past he has not been overjoyed at the idea, but he has been supportive. This appointment he seemed much more optimistic about it. I think maybe because he realizes I am going to do it anyway :) So I did ask him if there was a concern on his end that my lung function is in the 50s, although high 50s-yay. He said that because I am extremely compliant he has very little concern. He said of course all CF pregnancies comes with some risk, but he felt my lungs would do fine. He said the only 2 concerns he has is as follows.
  1. Weight. Although my weight is fine (BMI=21) his only concern is if I have trouble gaining during pregnancy. He said nutritional status is such a huge component of a healthy pregnancy and some cysters have trouble gaining weight. I feel like I will be fine because I usually eat very healthy for the average person, but not "healthy" for a CFer. Growing up without enzymes made me lean towards low fat/healthy foods. Even with enzymes I now have a mental block against high fat, creamy, buttery, or fried foods. I know I could do better in the calorie department if I needed to.
  2. Routine. He also said my success if how well I will adapt to the new routine of being a mom and doing treatments. He said if I skip treatments to take care of my baby or the household chores then my health will suffer. If I can find a routine that includes taking care of ALL my health needs and the baby I should be fine. I have no doubt that I can do this. If I am lucky enough to have a baby I want to be healthy enough to raise him/her.
The last thing we talked about was getting pregnant!! My doctor said something about us trying and I mentioned that it seems really hard for Cysters to get pregnant. He was actually quiet optimistic about this which shocked me. He said there are 2 major problems when it comes to CF and getting pregnant.
  1. Nutrition status (again with the nutrition!) If weight and vitamins and over all nutritional health is down the body will not want to support life. He said sometimes gaining just a little weight can increase the odds of pregnancy
  2. The BIG one!! Cervical mucus in CFers is thicker than non-CFers. Damn our mucus. He did say that although it was thicker it is only considered subfertile and not infertile mucus. Meaning if there are some strong swimmers you may still get pregnant. Of course the thickness may vary depending on the woman. He said that he wouldn't be too concerned about not getting pregnant at this point. He said that a lot of woman in the clinic have done it naturally. This actually was the best thing I heard all day. Fingers crossed.

So my nutritionist was pleased because my weight went up. It was only two pounds and I personally think weight can fluctuate depending on a woman's cycle. I am currently PMS and retaining water so I was probably heavier than I will be in a week from now, but 2 lbs would be a lot of water so I probably did gain a little. Since she was happy with my weight she came in to check on my vitamins. She asked if I was taking a prenatal vitamin. I said that I have been taking one for a year now. **FYI- I got my 1st bachelors(before teaching) in nutrition so I am pretty knowledgeable when it comes to vitamin needs even in pregnancy** She wanted to ensure I was getting enough folic acid because it is crucial in spin development (prevents spina bifida, encephalocele and other defects) within the first 3 weeks which is before most people know they are pregnant. 

She then asked me what vitamins I am taking. I take 2 chewable ADEK, beta carotene (Vitamin A) and Vitamin D. She then said that if I get pregnant I may need to either cut down on the ADEK or beta carotene. I know that if in pregnancy you get too much Vitamin A your baby is at higher risk for birth defects such as cleft lip or even heart defects. Random fact: This is why a lot of prescription topical acne creams (Retin A or accutane to name a few) can't be used during pregnancy because they contain too much Vit A. Okay, I will stop with the nerdy nutrition stuff...I just fined it all fascinating. Oh last is really hard to overdose on vitamins from food source so the concern comes more from supplements so if you love carrots, don't worry.
This is really long, but I figured any other CF women out there trying or thinking of someday trying may benefit from some of the things I heard in clinic today. Now it is the waiting game...

Monday, August 15, 2011

Clinic Updates

This is a quick update, but I had my 3 month appointment at the clinic today and wanted to report some good news. Here is the run down:

  • weight is up. I am 5'4" and weight 125lbs. I was 123 last time.
  • My O2 sats were 98%
  • My FVC is now 97%. My FVC is always significantly higher than my FEV1 so I wasn't all that surprised.
  • My FEV1 is now at a recent all time high of 57%
Never thought the day that I could even dream about 60%, but now I am not too far off. I really am still in shock. I know this disease has a mind of its own and that we really can't control our numbers, BUT I do believe swimming (and Cayston) is why my numbers have gone up almost 10% in the past 6 months after 6 years of averaging in the 40s.

We discussed baby making with the nutritionist and the Dr so I will update you on everything from the changes in vitamins, what the doc said about pregnancy with FEVs in the 50s, about trying to conceive and the hurtles that come along with CF and ttc. So exciting and intimidating! I am off to my sister's house, but I will fill in all those little details tomorrow.

Also I found my chart with my FEV history so I will be adding that sometime this week...finally!

Sunday, August 14, 2011

It's Official!

So my husband and I decided to officially start trying to conceive. Of course, I am not telling anyone outside of my blog world because I don"t want extra pressure or people judging my abilities to get pregnant. I originally was nervous about even sharing on the blog when we decided to start ttc, because I thought I would be embarrassed if it took too long. After doing a lot of research and looking at forums I realized that CFers really range in the amount of time it takes for them to conceive. Most people take at least a year, but the range I saw was as long as 7 years and as short as one month. I was somewhat discouraged reading cysters' stories because I want to be pregnant now, not 3 years from now. I figured if I am going to write a blog about CF and trying to get pregnant I must share my ttc journey as long as it may be.

I am trying not to put too much pressure on myself. We tried once 2 months ago (last month I was on meds) and I cried when I got my period. Ridiculous, I know, but we have been prepping for a baby for so long that even though we only tried one month it felt like years! My sister (no CF) was so sweet and told me not to worry if it took a long time because she wants to try in 2 years and the longer it takes me the closer in age our kids will be. I am trying to use that as a way to keep myself from getting stressed.

 My major concern right now besides thick CF cervical mucus (mucus just won't give us cysters a break!) is that after baby dancing I often have to cough and I worry that if we finish baby dancing and I cough the swimmers get pushed away from where they are going. I wonder if this is true? I will keep you updated periodically and we will see how this all plays out.

Friday, August 12, 2011

Just Can't Relate

So I was out for happy hour with some fellow teachers (or teacher wannabe friends because of the economy) the other night. We were all still on summer break which is rapidly coming to and end and so we wanted one last get together before kids, books, and lesson plans. Since we all had a whole lot of free time and were pretty much getting bored out of our minds from summer break we were discussing the things we did to keep ourselves occupied. Like any group of women in their mid 20s to early 30s the discussion about boredom eating came up. Now I know this has NOTHING to do with CF, but I am NOT a boredom eater. In fact when bored or stressed or sad I pretty much have no appetite. Apparently, the other girls were hard core boredom eaters. We were discussing that when you are teaching you are always standing and moving around and walking a lot so you are mildly exercising all day. You also can't eat whenever you please because you have 32 people staring at you all day so you can't snack unless the kids are at recess. This cuts back on a lot of eating that happens. When you are home on your butt all day without anybody watching you or caring what you do you can eat whenever you darn well please. And apparently my friends did just that! All 3 of them griped of gaining weight and one friend moaned that she was in her fat pants once again.

Being a CFer and a non-boredom eater I just couldn't relate! I of course kept this to myself because regardless of life threatening illness or not, nobody wants to hear that someone just doesn't gain weight. I was thinking how I was so concerned because I think I have LOST weight because I don't pleasure/boredom eat. When I am on a school routine it forces me to eat more because I have breakfast, morning snack (at morning recess), lunch, after school snack, and dinner. During summer I have brunch and dinner and a snack or two. Horrible! Please don't tell my doctor. Never worrying about eating too much or pulling on your fat pants is kinda a nice perk of CF, but I would take a little extra lard over CF any day!

Sunday, August 7, 2011

Big Fat Juicy Plug!!!

Today while doing my HTS 7% I started coughing and could taste that something nasty was being brought up from my lungs. Low and behold the biggest fattest juiciest plug in all of history came out of my lungs! It was HUGE and LONG and had a bunch of little arms which I believe were plugging all the surrounding airways.

Is this the plug that was causing me so much pain?! If it was I can see why because it was a monster! The only reason I am not 100% convinced is because last night after swimming and doing my treatments I was in bed and could feel something in my right lobe moving or dislodging itself. I couldn't cough it out, but it definitely felt like a plug moving. I had NEVER coughed out a plug until about 11 months ago after my honeymoon (I think from the salty ocean air) and now I get mini plugs (the tiny tiny ones that are really hard, but oh so small) about once a week and have gotten at least 5 big ones!

I seriously cannot explain the joy and thrill of coughing these out! I feel like my lungs are reopening and I am breathing better everyday. How is this happening you ask? What is the secret?! No, I am not "lucky" and it is not a miracle or a secret, but it IS 100% DUE TO EXERCISE! Specifically swimming because I have exercised in the past and never gotten plugs out. I also have to contribute the plug expelling to airway clearance because of course this plug would not have been coughed out if I was not doing my airway clearance.

I have not felt this good since...I can't even remember! Sometimes when I take a deep breath in I feel like I can breath in "forever" as if my airways never stop. Mind you, I only have an FEV1 of 54% so it is not like I really can and a lot of you CFers probably breath better than I do. But the contrast of how I felt before to how I feel now makes me feel invincible!

Okay, nobody like a braggy post so I am done. FYI I took a pic of my plug is anyone is brave enough to see it. Now if you are reading this GO EXERCISE!!!!

Friday, August 5, 2011

Public Pool Humiliation

Okay, the title is a little dramatic, but I can be dramatic at times. At least THIS pool humiliation was not as bad as my last public pool humiliation. At least this time I kept me clothes on for goodness sake! I must worn you it is gross and has to do with mucus so if that grosses you out feel free to move along...

This was a particularly busy day at the gym pool and every lane had at least 2 people in it. I chose a lane with the 65 year old man I like to swim next to because we swim at the same pace. I am not sure if it was from the antibiotics or the NAC or maybe it was just one of those days, but my lungs felt amazing. For the first time in a long time my legs gave out before my lungs! So at one point after doing a set of laps I needed to a break to let me poor legs rest. I was at the end of the lane breathing hard trying to catch my breath. Now before I continue I must add a seemingly small, but in fact significant detail. There is a hot tub, spa, and steam room in the same location. The hot tub people are really close to the pool and can basically watch you swim while they relax. This will come into play later. So I am huffing and puffing because even though my legs wore out first, my lungs still got a major workout. Now please note I was not coughing because I am very good at covering my cough. Rather, I was simply breathing hard when all of the sudden a lovely ball of bright green slim came flying out of my body and plopped into the pool right in front of me.

OMG! I have never "lost" a little friend without coughing, it just doesn't happen. I was SO shocked. I wanted to quickly scoop it up because it was quite sizable and bright and DISGUSTING! I tried to scoop once, twice, and three times. The water was sloshing around too much from the other swimmers to get a good grip on that nasty little blob. I could feel the hot tub people burning holes into me as I frantically fruitlessly scooped at the water. Okay, I don't know for a fact that anyone noticed, but I was too humiliated to even look. I started to notice that my lap partner was approaching the wall and he always takes a breather before doing another lap. OMG! He will see this toxic waste I spewed in the pool and what then? I couldn't face the humiliation so I did as any other polite courteous law abiding citizen would do...I swam away and FAST!

I know it gross and I am sure you are all glad that I don't swim in your pool. Heck, I didn't even want to swim with me after I saw my mucus. But if it makes you feel any better I think the chemicals in the pool killed any bacteria and on my return lap I saw that it had pretty much dissipated so no one will go home with a glob in their hair. Regardless, I still feel humiliated and have no idea how many people saw me scrambling after a slimy green blob in the pool. I love swimming, but I sure find ways to humiliate myself in the pool a lot!

Thursday, August 4, 2011

Enzymes. Did I or Didn't I?

Enzymes are pretty much my best friend. Having lived 14 years without enzymes, I had lived with far too many stomach aches, gas, and bathroom breaks to ever skip my dose of enzymes. My roommates in college used to tease me because everything I owned was bombarded with enzymes. Enzymes were in my jewelry box among my earrings and necklaces, they were in my desk drawers with my pens and pencils and in the corners of my closet. Basically anywhere a bottle or bag or even loose enzymes could fit, they would be there. They would be in my pockets and would sometimes melt in the wash and become a hard mass that I never really could get rid of. I just wanted to have easy access to enzymes so that no matter when or where I decided to have a snack, I would be prepared.

As I have gotten older I have limited my enzymes to only all coats pockets, purses, pant pockets, and the kitchen. I realize how miserable life is without them so I never want to be caught with a meal and no enzymes.

Well, here is my predicament. I have been taking enzymes about 4-5 times a day for about 13 years. It obviously has become such a habit that I don't even notice taking them anymore. I do it so often and stealthily that most people I dine with don't even notice. BUT this amazing ability to pop enzymes without much thought and drawing very little attention to the act, causes one little problem. At times, I will have a mini panic mid meal. "Did I take my enzymes?!" I will shout out to anyone at the table and most of the time they will shrug, "I dunno?" "Are you SURE? Did you see me digging in my purse or throw a pill in my mouth?" Usually the response is a look of bewilderment and a very unsure, "No? Err I dunno." I then start to retrace my steps. Did I reach into my purse and unzip the pocket? Do I remember anything in my purse that will spark my memory? Sometimes simply looking in my purse or where the bottle of enzymes is located will spark my memory. At times when I was really distracted during the meal I just can't for the life of me remember!

Then the biggest predicament of all sets in. Do I take my regular dose and risk getting a blockage OR do I assume I took them and risk...well an afternoon with my dear old friend John. I wish there was a way, like testing blood sugar, to test enzyme levels. Well, there isn't so for now I will have to rely on my memory and harassing everyone at the dinner table for the times I forget. Does this ever happen to you?