Changing Seasons

I'll preface this by saying, I have a lot to look forward to.  I can't put it all in writing yet, but in due time, you'll hear about it.

But I am caught in this ball of anxiety lately. The thought of being stuck inside all winter consumes me, the thought of another like the one we had two years ago...is utterly intimidating.  Trust me, snow up to our first floor windows and several storms every week for at least a month.  The snow in my front yard was up to my shoulders.  I have said many times, I am not ready for that again...yet I love it when it's happening.  LOL  I am a walking contradiction.  The changing of seasons always makes me anxious.  I can't really describe why and I know I'm not the only one.  It's the whole idea of less sun.  Waking up and taking the dog out when it's still pitch black and then having to get ready for work in the dark, bitter cold house (we refuse to turn our heat on yet because it still gets pretty warm during the day). And I know that staying in bed all day wouldn't make my mood any better, so I get up.  As people always do.  We move on and we persevere and get through another day.

The view from the drivers seat of my car after a major blizzard!

Part of my problem is that I've had this pain in my chest the last few days.  I don't think its anything serious, they did X-rays and those didn't show anything out of place (literally, LOL).  It gets better with Motrin, but I am concerned it won't be better in time for our trip.  I definitely don't want to be in pain walking around Disney for a week.  And I didn't buy the trip insurance, so I am kinda freaking about that, what was I thinking?  In addition I am currently on Tobi and for some reason I am exhausted all the time!  Tobi is a nebulized antibiotic that takes about 20-30 minutes twice a day.  It may not seem like much, but 20 minutes in the morning getting ready for work is huge.  And 20 minutes at the end of the day when you have dishes in the sink and a dog waiting to snuggle with you is a lot of time.  I don't do my treatments in the TV room because they are so loud and my dog won't sit on the couch until I am there with her.  So because of this stuff, I've been slacking around the house and I don't think that is helping my anxiety.  I feel like there are always dishes in the sink now, mail piled on the table, etc.  But I have no time! I had a long weekend this past weekend, and I did get some stuff done, but not all of it.  I need to find my motivation again.

I am also in a drug study, so I have had to trek an hour + into the city for check ups every two weeks on my day off!  And some visits have been VERY long.  I am so done with that.  As much as I love the idea of research and making strides to help other CFer's, I don't think I can do another study while I am still working full time.  Even though I knew the schedule of visits, for some reason I didn't think it would take this much out of me.  I need that day off during the week to get stuff done.

Reading, crocheting and listening to music are all favorite coping mechanisms for my anxiety.  As much as I love the "trashy beach novels", they are way too easy to read.  I can finish them in a day or two...and I get so consumed, that reading is all I want to do!  LOL I mean, yea, there's definitely worse things I could be obsessed with.  But I want something a little more complex, that takes thought and time.  Maybe I'll try Game of Thrones again.  I got through about half of the first and had to return it to the library.  I have TONS of crochet projects to get working on! LOTs of babies coming in the next several months that need handmade gifts.  I am trying to think of what I want to make for each of them and that thought is a daunting task as well.  I like each item to be different, so its more of a challenge to me (to get the pattern down) but its also nice for the baby-to-be to have a unique gift.  So that's kind of consuming my mind. At least two of the mommies won't be finding out gender, so I have to find neutral patterns and colors.  One is on the fence about finding out (she actually has an envelope in her house with it written and she hasn't looked at it yet!)...and I have a feeling she'll end up looking in the envelope...so I don't want to start anything for her yet.  And the fourth is definitely having a boy, but I am not as close to her...she's more the daughter of my moms friend, but someone I grew up playing with in the neighborhood.  So I don't see her anymore, but I'd like to make something special for baby.  And I hate silence, so music helps me think.  I love listening to the words and trying to make sense or find a time in my life that relates.  :)

Not the best quality pic, but one of the neutral blankets I'm working on!

Update/Goals for the blog

So apparently its been quite a while since I blogged.  Woops!

I don't even know where to start if I am going to tell you how my life has been...It's been a whirlwind, that's for sure.  I was sick and in the ER twice back in May/June and I think that was the last time I wrote.  Fortunately, it was not a CF kind of sick, it was more of my endometriosis flaring up real bad. Unfortunately, I was in agonizing pain for quite some time, was unable to eat much and lost about 10 pounds.  I ended up in the hospital for 10 days total because they couldn't figure out what exactly was wrong. And then during the second week they found a "pocket" of infection near my bladder.  My theory is that I had a burst cyst that got infected along with the endo and some inflammation in my intestine. But anyway, that's all in the past now.  During that time, we put our TTC efforts on hold and so far we have not gone back.  As much as I have always wanted babies, after that scare it really got us thinking that we also want to travel more. We don't know if/when we will go back to the fertility specialist.

A week after I finally left the hospital, we had planned on going away for my husbands wheelchair soccer tournament in Indiana (a two+ hour flight from home) and we did go.  Again something I was very unsure of doing.  I had a lot of bottled up anxiety.  On the one hand, I didn't want to get all the way to Indiana and be in agonizing pain again...but on the other I didn't want to stay home alone for almost a week and risk being in pain.  So we decided at the last minute that I'd still go and it was great!  Even though I just sat around on bleachers watching soccer most of the the time, it was very nice to just get away from everything.  To go somewhere I'd never been, to see something my parents and sister have never seen...despite there not being much to do in "The Middle" of the country.  We were able to relax and let go of everything that had happened back home.  AND we realized how EASY it was to travel.  You see...we travelled with his whole team, 7 men and one woman in wheelchairs, plus the significant others/or helpers.  It was a HUGE process and trying to get all of them (and the wheelchairs) on the plane wasn't easy, but it went far smoother than we could have imagined.  All my husband kept saying was "imagine how easy it would be if it was just us."  

SO...when we got home we started talking about our trip and going somewhere, just the two of us. And, guess what guys....I finally convinced him to take me to DISNEY!!!  We leave in about 5 weeks and I am already like a kid in a candy store, bouncing off the walls excited!!  And I have been since we booked it.  I work for a travel agency and I have been telling my husband FOREVER that Disney is the perfect place for people in wheelchairs.  I mean, you book the trip and its all taken care of. They do everything.  They pick us up at the airport in Orlando and shuttle us to our resort.  They even pick up our luggage!  I mean, really?!  Can you get better than that?  I know when I land at an airport, the last thing I want to do is wait for my baggage to come off the conveyor belt.  Granted, with CF most of my luggage (medication, Vest, nebulizer) will be in my carryon and I'll still be responsible for that...at least I won't have to worry about our additional 1-2 bags with our clothes. Seriously excited for this.  THEN, once you're on Disney property you don't even need to rent a car. There are shuttles and the monorail all over to take you to all of the parks, other resorts and Disney Springs (the old Downtown Disney shopping/restaurant area).  And I know he won't be able to ride all the rides, but everything else is wheelchair accessible.  Serious bonus in my book!  *unlike at a beachy resort on an island outside of the US, that may have stairs and hills and whatnot*  Not to mention, we will be there during the Food and Wine Fest at Epcot!  So it will be a little more "adult" than just going for the princesses.  ;) I know he'll like Epcot.  I was there 21 years ago next month, he's never been.  We will take one day to do Universal too.  I am PUMPED to see Harry Potter land.  oh my gosh.  From what I hear, it looks JUST like the movies.  We'll probably have to take a cab there or find some sort of shuttle.  I am not worried about that.  I just can't wait to go.  And the weather should be perfect.  Everyone is telling me how great a time of year it will be.  

So as for this blog...I've been thinking of what I want it to be.  I want to be more involved in the blogging world, I want to spend more time writing on here.  I just don't know what I'd write about every time.  LOL.  So I am going to try a be a better participant.  I will try and blog more often, maybe come up with some weekly or monthly theme posts that will make sure I get on here.  If I set a definite post for a definite date, then I'd find time.  My computer time is usually while I am nebbing/vesting and lately I've been crocheting or watching make up videos while nebbing/vesting.  Oh yea, I also joined on as a Younique make up presenter, so if you have any make up questions or want to check out the line, leave me a comment.  I really love the products that I have tried so far and can't wait to try more.  Having this little side business has kept my mind off of some other things going on (the not TTC, the health issues) and has given me some thing to work towards and look forward to.  And as for the crochet stuff, I have lots of friends and relatives that are expecting soon so I've been kept pretty busy with that.  And with some random orders here and there.  I love being able to create a gorgeous keepsake for someone...especially babies.  Keep an eye out for some posts on my upcoming projects! I have some gorgeous WIP's (works in progress) that are on my (crochet) hooks right now.  Yes I typically have several projects going on at once and then several more in my brain waiting to be started.  LOL.

So for now, that's really all. If you have any ideas on things for me to write about, things you want to know more about, CF life, wheelchair spouse life...please let me know.  And I will see what I can come up with!  Have a lovely day!

New Job

So far its going really well.  I started Monday in a supervisory role in a new office, same company.  Its actually the corporate offices and a call center.  My department is relatively small in the scheme of the whole building…but I really like being around others.  It gives me more people to kind of befriend than my prior office.  My old job had only 9-10 people and if you didn't get along with anyone there weren't really places to escape to.  We had a lunch room and that was it.  This new office has probably 30-40 people working at a given time.  Not to mention the corporate offices are right upstairs.  Some people may find that intimidating, but we rarely see them where I am…its a comfort to know they are right there.  Of course if you had asked me that back in November when my boss got fired, I may not have agreed.  But I know realize what went down and I am on a good career path for me.  I did what was right for my happiness and for my family.  And I am away from the drama queens of my old office.  Yay!  Whats meant to be, will be.  I really like my company and it has been around forever, so another comfort. So long as I prove myself, I will continue on a good path.  Another good thing about being in this office is that we learn a lot more background stuff…the why's and how's of whats being done.  I honestly felt kind of left out in my old office.  Like we never knew the reasoning behind certain decisions.  

I've started training on my new responsibilities and thats going well too.  Its not much more at this point, but it has a lot of potential.  So if I can handle these jobs/responsibilities then I will be more able to move up quicker. Everyone seems happy to have me there.  In my old job, I had spent a lot of time on the phone with some departments that are in my new building and since I've made the move…its like I already have friends!  I have people to sit with at lunch and its not awkward like if it was a whole new company.  And because of my performance level at my old position, the HR and area manager seem very happy to have me!

Not the way we planned

I don't want to say what happened yesterday hasn't made me upset, but on the whole, everything happens for a reason…I truly believe that statement.

We were all geared up for our fertility appointment and miraculously we only left about 10-15 minutes later than we planned.  In all honesty…that 15 minutes, may be the reason we are still alive.  We had thought Friday traffic before a holiday and school vacation wouldn't be so bad and we made relatively good time to a certain point…then we were stopped.  Barely moving 5 miles an hour.  As I got angrier, traffic still didn't move.  I was upset with my husband for downplaying the Boston traffic scene, I was mad that we had left later than planned.  

Come to find out there was a very terrible accident somewhere ahead of us that left one young teacher dead.  My heart sank.  It was a complete freak accident.  I feel like I have said this many times before, but if only I had left on time…things could have been very different.  I called the clinic several times to update them on our status and finally when we were a half hour late and still not at the exit, they decided to reschedule us.  Unfortunately, we can't be seen for another 6 weeks!  I am disappointed, but my thoughts are still with that young teachers family and friends.  The clinic will put us on a cancellation list, but because its a second opinion we have to have an early as possible appointment…so its unlikely we'd be able to make it last minute.  

I'm going to take this time to work through my emotions and concentrate on the life I've been given.  I start my new position (same company) on Monday as well as celebrate turning 32.  I have learned in my life to never take one day for granted and I will celebrate all the days I've been given.  Life's too short and you never know when your time will be up.  My days are precious.  And I think this delay will give me time to concentrate on my new position within my company.  I am nervous about change, but I am eager for the opportunity.  

I heard this country song the other day and sobbed through the entire thing. It's incredibly powerful.  Please take the 4+ minutes to watch and really listen to the words.  I listen to music often and I feel a huge connection to theses words.  I most certainly try to live by them daily.  ((And Tim McGraw is pretty good eye candy)) *winkwink*

Faith

Things have finally settled down since the holidays and the craziness that was work in November.  :(  My colleagues and I have come to terms with the way things went down back then and we have moved on.  The office is more peaceful and we are learning to get along with each other (without our boss).  I have found faith in my company again and am eager to see where the future leads me within the organization.

This week has been a bit odd.  They announced there is a position available in another office, which I have already applied for and I have an interview Tuesday.  Their manager is very aware of my promising job performance. But on the other hand, because of mediocre job performance, some of my colleagues are not able to apply for the new position, so a little tension there…although they don't know that I have applied. I think it will do me well to get away from some of the drama from my current office.  Because even if I say it right now, I know its probably only a matter of time until my colleagues throw fits again.  They believed I (and one other) were getting special treatment…but we had the numbers and we performed our jobs exceedingly well, while some of them did not perform as well.  Work ethic goes a long way, people, trust me.  I have been very successful and I am super proud of my accomplishments.  I went to school for teaching and am now working in customer service/travel, so my prior experiences don't necessarily match up with where I am, but my successes prove that I am motivated to learn and better myself.  For example…I met my reservations (car and hotel) goal by August of last year, had doubled my goal by the end of the year AND I led the office in customer satisfaction scores…and oh, I even made my monthly goals in November when I was out on medical leave for two weeks.  I attribute my successes to being content with where life has taken me.  Although it wasn't where I thought I would be…I couldn't be happier.  And I know that if my life had taken me elsewhere, I may not have been as healthy and happy.  So I am thankful for that.

I have recovered from my exacerbation in November as well…so my mood and enthusiasm has been better. Although this week, I have been waking up with sore throats and sinus-y issues.  I am hoping thats just because we are using the heat more.  Its been a crazy winter so far!  It was nearly 60 degrees on Christmas…and it has barely snowed.  Shhhh.  Hopefully it stays that way. I'm still recovering from last winter. ;)  We finally settled on a plow guy.  That was fiasco…Our old one called in November to check and see whether we still wanted him.  I kinda said "well I was really hoping to find someone who can help me shovel, not just plow."  We had SO much snow last year that it would have taken me days to shovel out a path to get to our cars.  It was ridiculous.  This man was an older man and didn't shovel, which I totally understand.  He got kind of defensive when I told him we needed more, like he was offended or something.  Whatever, we didn't have an attachment to him whatsoever, so it was easy to cut ties.  I called several landscape companies in the area…and NO ONE returned my calls.  That was also ridiculous. I mean, don't you want the business??  So finally I was talking to the girls at work and one of them (we have rarely seen eye to eye) gave me the name of a guy she knows.  I was so grateful, but at the same time afraid to call him.  I didn't want to feel like I owed her anything if I hired him.  So I sucked it up and called him…he was wonderful.  He's a young guy in the construction business, he was happy to help and he loves to do this for people.  He actually plows out disabled Vets in the area for free!  How sweet is that?!  He's expensive, but I think it will be worth it if we get any snow.  I am grateful to have that off my back.

Been knitting a crocheting a lot lately.  I did a bunch of orders for friends and family over Christmas.  I'll devote whole post to that soon.  I'd love to start marketing my stuff and really selling it.  I have a Facebook page, but its mostly just family that follows me.  Maybe if I put it out here on my blog more people will want to follow and see what I have to offer.  I'm always adding new items and trying different things.  I love that it can relax me and help me unwind after a long day.  I love being able to show off my creativity.  :)

Where to begin?

This last month has been a whirlwind of health issues, emotional trials and so much more.

Growing up, everyone knew I had CF…friends, family, neighbors and teachers, even my bosses.  You would think that means that I would easily be able to talk about CF with anyone these days.  When I went to college, I didn't want everyone to know.  I didn't want to be judged or coddled.  I didn't want people to treat me differently because I had a chronic disease.  I wanted to prove that I could keep up with the work load, that I could earn my degree and that I could do ANYTHING everyone else was doing (with little to no intervention).  This worked for quite a while.  But somewhere things changed.  I graduated in May of 2006 with the intention of going back that fall to complete my student teaching. I found out right before the start of the school year, that the school I was to do my student teaching at had a student with CF that would have been close to my assigned classroom.  In a very quick few moments, I and my cooperating teacher, and my college supervisor decided to switch schools.  If this had not happened in this dramatic way, my life may have been quite different.

Most importantly...my college supervisor would not have known about my CF, she would not have blabbed to the whole faculty, she would not have told prospective employers.  This supervisor is the one who made me lose trust in my employers.  She was supposed to be a person I could turn to and confide in about my disease.  It turns out, that wasn't the case.  She told prospective employers that I had a disability, ruining my chances to work in that school.  In all honesty…I think by doing this, she made me distrust a lot of my supervisors over the years.  She made me even more scared to reveal my disability/disease/condition to anyone.

I am not saying I regret any of what happened, after all…its made me who I am today.  And I know everything happens for a reason.  Teaching was not the job for me.

You are probably all saying "what does that have to do with today?"  Ever since then, I have shied away from talking about my CF, unless you are a close friend or relative.  It has made me less trustworthy of authority and at this point, I think it is starting to hinder my job and my ability to move up in my current position.

I have been with my current job for 1.5 years now.  At first I loved it, loved the people, love what I do. I am good at what I do, so how can I not be happy?  I think deep down, I wanted to trust my newfound coworker (friends), but in the back of my mind I couldn't forget what happened all those years ago with my college supervisor.  I found a friend in my new job and I confided in her about my CF…but it still took more than a year and she is only an equal (same position), she is not a supervisor.  We have a lot in common and I just felt a connection.  And finally it didn't backfire on me!  I was shocked.  All she did was care and she wanted to help me.  She asked questions, she acted motherly when it was needed, but she was a realist at the same time.  She didn't baby me, she didn't coddle, but she was there when I needed someone to vent to.  And she didn't hoard me with questions, we still concentrated on work and we helped each other.

When I started to get sicker this fall, I knew someone else needed to know.  And again, I was afraid.  I didn't want my job to be in jeopardy, I didn't want sympathy. So I finally told my boss!  It was so freeing to finally have it all out there.  I knew in my heart that he would do anything to protect my job and to be the manager I needed as someone with a chronic illness.  He had seen my ability in the job and he knew that the CF wasn't going to hold me back.  He wanted to help me.  I seriously, could not stop smiling after I told him.  It was incredibly cathartic.  I finally had a supervisor on my side and I knew instinctively that he would be there for me.

Less than a week later, that all changed when he got let go from the company and I was in the beginning stages of a CF exacerbation.  I was/am still heartbroken.  It is a long story and I don't want to give "press time" to the people who caused this firing.  But again, I was in a position I wasn't ready for.  I needed to take time off for my health and again didn't have anyone I felt a connection with that I could confide in.  Whats a girl to do? I went back to my one friend from the office who was still there and she helped me through.  But she wasn't a supervisor, she was/is my equal.  She wasn't going to be able to protect me and help me the way our boss would have.  I ended up telling someone solely out of need.  I was going to be admitted to the hospital and needed time off.  I spoke with her about protecting my job and that I wanted to come back to work with a clean slate…able to help the office recover and become great again.

I am currently back to work part time until next week and I am still struggling emotionally with all thats gone on.  Work is not as enjoyable as it used to be, we don't joke around and again we don't know who we can trust.  I know that I will be the bigger person and put on my happy face, but it is extremely hard.  I am a very forgiving person but right now because of what went down with my boss…I don't feel like I can trust everyone.  As I said, its a complicated situation, but I do want to be better and I want to be a leader in my office, but not everyone sees me that way.  I feel like its an us against them mentality and I don't know how to make the others see that I am good and I am successful.  I know it in my heart, so why do they need to question it?

I know this may not all make sense if anyone is reading this, but I just needed to vent.  So this is whats been happening.  It will get easier, I just have to keep telling myself that.  Once I can get a full night sleep (without having to do IV's every few hours), I think I will be better able to tackle silly "work drama".  I am grateful to still have a job, to still be able to work, to still get out of bed every day and love my life.  And after all…its almost the holiday season, I love the holidays and I can and I will find enjoyment in the little things in my life.  

Changing Seasons

I am definitely not a hot weather person.  My lungs don't like to cooperate and I always seem to find something that triggers my allergies when its warm.  This summer has been no exception.  Although we did go on a vacation in the beginning of June, I feel like I haven't done many "summer-y" activities.  Sure we've been to a few bbq's and sat in our (thankfully) air conditioned home.  But I tend to stay indoors in the humidity unless I can sit on a beach or live in the water.  I have not been to any local beaches (Cape Cod is usually my favorite, or New Hampshire) which I typically treasure those times.  I have many memories as a child of packing up for the day and going to sit on the beach, play in the water, dig in the sand.  It was a part of my summer.  Of course now, I work and planning ahead for a day at the beach isn't always on my agenda.  I don't have my parents to carry the heavy cooler or make my sandwich.  ;)  This (past) summer my Sunday's consisted of cleaning the house, napping and hanging out close to home.  I guess this is all part of growing up, taking responsibility.  I would have loved the luxury of planning ahead, making sure I have sandwich meats in the house, and packing a lunch to the beach.  But I also know that if we went to the beach it would be a whole new set of exhausting for me…a long walk from the car carrying my gear.  If I had time to plan for the beach, it'd be less exhausting actually being there.  My work schedule doesn't exactly permit me to plan things in advance either so I am working on that.  Hopefully a somewhat new schedule with some weekends off is in my future

I am not saying I regret anything thats happened this summer…on another token it has been wonderfully warm, but not necessarily excruciatingly so.  Of course after last winter, I'd take anything.  Snow up to your shoulders will do that to ya.  No I am not ready for summer to be over, but I do enjoy the cool nights of fall and apple picking and pumpkin beer and cuddling under my handmade blankies. The changing seasons always seems to get me in a funk.  It's like I am ready to move on, but hesitant to do so.  I know the winter will bring me inside more so and even closer to home if I do have to go out.  I want summer to last just a little bit longer, I want to go to the beach again.  I want to do stuff outside.  I don't want to be stuck inside for a long cold winter.  I mean, last winter was like yesterday, right?!  I think thats why I am struggling so much more with this change of seasons.  I know what comes after the Fall.  So no matter how much I tell myself, I love the fall, this year I am just seeing it as a stopover to what comes next.  Many people in my area have the same thoughts.  It.Snowed.So.Much. last year.

I even (dare I say) like the winter, love the snow.  But not so soon.  ha.  I guess the moral of this is that we don't know what comes next.  This winter could be drastically different.  Maybe it won't snow at all (ha, fat chance of that).  Maybe my life will slow down enough so that I can enjoy those quiet winter days with beautiful snow falling out my windows.  Maybe if all goes well, we will be celebrating a new blessing for next year, a new life.  I know many of my thoughts have been coming back to that lately…to fertility treatments, to pregnancy, to babies.  I am glad we finally have a road to travel and we are finally going to pursue treatments, but I am deathly afraid they won't work. And that my dears, is why the winter scares me.  Because some day, I will look back on that as the winter that either "it" worked or the winter that it didn't work.

What I've been waiting for!

Two major updates on this post.  And a minor update.

Update #1:  Physical Therapy Progress

I had another monthly check with my clinic PT the other day.  I've been working with him monthly on strength and conditioning exercises.  Usually he will give me new exercises to work into my routine at the gym.  This week, we did a whole reevaluation…and I am thrilled to say I have made some great progress!  My six minute walk test improved by 12%, I was able to increase my bicep and tricep weight tolerance by 5 pounds and I had amazingly improved on planks and pushups!  Wahooo!!

I tried to tell him that I could tell it was all working because my legs felt "less flabby".  And in truth, I have felt that my body shape has improved as well, not as much jiggling in my belly.  When I was at the gym later in the week, I watched myself in the mirror and could see the difference when I did whatever exercise it was that I was working on.  So instead of adding new exercises this week, he just increased the intensity of what I have been doing…so if I was planking for 30 seconds before, I now have to do 45 seconds.  Or if I was doing 6 push ups before, I have to do 10 now.  And for exercises with weights, I have to do 12.5 pounds instead of 10.

I am extremely excited for these results.  It's great motivation for me to keep going.  I want to see progress and change.  To think that I've been meeting with the PT for 10 weeks now…I was on vacation for one whole week, had a few bouts of bowel blockages in which I was not able to work out…and to see progress despite all of that, I am pretty amazed!  What will the next month bring, if I can go to the gym more frequently and I don't get sick?  *insert happy face*

Update #2:  Fertility Treatments

It took us quite a while…but we finally have our new insurance!  And of course I called to see what they cover for fertility right away.  The general copay is quite steep (in my opinion, and compared to before)…BUT our deductible is very low.  So…if we meet our deductible (with fertility visits OR any other medical costs)…then there would be no additional cost for treatments.  Since we just started with the insurance it isn't likely we will have met our deductible any time soon…and of course that deductible would start over again on January 1.

So I called the fertility clinic yesterday to start thinking about getting back there.  They gave me a list of dates that our doctor is in the office and as soon as husband and I can agree on a date, I will call them back.  Since we've already done two tries with IUI, my inkling is that he (the doctor) will want to proceed right to IVF.  I am ok with that, but I am not sure husband is ready for that.  The one problem with the new insurance is that we have a lifetime limit of five cycles of fertility treatments.  So naturally, I don't want to waste any of those on IUI if it might not work.  I might agree to one more round of that, but I don't want to keep that up.  I just don't know.  I have said previously, I have this intense fear that pregnancy will never happen for me and I am scared.  I know there are other things in life that could fill that emptiness, I want to be able to say "at least we gave it our all".

Minor Update: 

I've been doing a LOT of knitting and crocheting!  It has really helped to take my mind off of fertility stuff…and it gives me great pride to see someone's happy face when I give them something beautifully hand crafted.  That's why I haven't updated much on here.  I started a Facebook to sell my stuff and in one week, I have 150 likes! GO ME!  I've kind of been biding my time to open up this page.  I've wanted to do it for a while, but never felt I was good enough or that people would like my stuff.  But a few weeks ago (before I set up the page) I posted a picture of a doll outfit that I had made and one of my friends immediately commented and said "I need two of these!"  So that gave me confidence to set up my site.  Check it out and give me a like!  https://www.facebook.com/yarncraftsbycait

HOT, HOT, HOT

This weather is just killer. I don't have any energy to get stuff accomplished…and I really don't feel like working or working out! ;)  My house is a mess, I really hope no one stops by because it just ugh.  I need to do laundry, but its in the basement and I hate lugging it all down there and then bringing it back up and folding it.  I'd much rather have snow piles up to my ears…well I may not exactly be ready for this again…but I'd settle for under 90 and lower humidity.

This is the view from sitting in my car after one of our many snowstorms this past winter.  It was literally up to my shoulders.  My city was supposedly labeled, "the snow capital of the US".  It was a pretty extreme winter.

Of course, last week after my post and after my great update at the PT…I ended up with some moderate belly pain one evening.  I called CF clinic the next day and they sent me for an X-ray the same day.  Apparently I had a "lot of stool" built up in my colon.  So I was feeling pretty awful for a few days while that passed.  In the midst of that, I started coughing more than my norm.  So I called the doctor again on Monday.  They must be so sick of me!  LOL.  I am still feeling pretty bloated, but the pain in my belly is gone.  I also started Cayston (an inhaled antibiotic) for my cough.  So far it does seem to be helping.  I'm bringing up more junk and my cough doesn't seem as tight.  

Other than this heat, I really can't complain.  Our garden is looking awesome!  I'm spending a lot of time crocheting or knitting.  I have tons of friends and a coworker having babies lately.  So lots of small projects.  I'll try and do a whole update on that later with pictures.  I am so proud of (and in love with) ALL the things I make.  As much as I hate to give them away, I know they are going to good families who will appreciate them.  Some things I've made of late…lovey blankets (my new favorite thing, so quick and easy to do…and adorable), head bands for baby girls, large blankets, hats of course.  I have been slowly working to clean out my craft room and it really seems to be helping motivate me to craft more and use what I have!  Its a slow process, but when I feel motivated, I'll clean for a half hour or so and so far it looks really good.  The crafting is a cathartic thing for me.  It keeps my mind occupied while also relaxing me at the end of the day…as long as I'm not too tired.  Its like free therapy!  And crocheting and knitting can be done in front of the tv, so I am still spending time with hubby too.  

Clinic PT visit

So I have been meaning to write about this for a while now.  Ever since I started at the adult CF clinic about 2 years ago, they told me part of their routine was meeting with a PT once a year.  They didn't want to bombard me at first with all of their policies if it wasn't necessary and if I didn't have days off.  But I finally went to meet with the PT (he specializes in CF care) at the hospital where my clinic is back in February or March I want to say.  Long story short, I didn't realize how weak some of my muscle groups are.  Shoulders and hips for one.  At that point I hadn't been to the gym in a few years and rarely did any walking.  When I had my old job…I at least walked around the store and NEVER sat down.  Moved things around the store, so at least that was some form of exercise.  My job now, I pretty much sit down all day.  So I am going to just outline what these visits with the PT have entailed one by one.  Because since that initial visit, I have been back to see him twice more.  Insurance pays for it, so why not.  And with my new gym membership, I really would like to have more exercises to do in my arsenal while I'm at the gym.

Visit one:  I can't remember if I blogged about this or not, so I will just briefly go over what we did to the best of my memory. We talked for a while about how much I exercise, how healthy I am CF-wise, and my daily routine of CF care.  He did some strength tests…you know the kind where you push against his arm and you have to keep it stable.  Or raising my arms above my head.  Different stuff.  I then did a treadmill walking/jogging test.  In addition to having weak shoulders and hips, we realized I have pretty low exercise tolerance despite having high (for a CFer) lung function.  Its a good thing that my lung function is so high…we can work with that.  From what he said, its easier to increase exercise tolerance with higher lung function than it is with lower function.  I hope thats coming out the right way. So we left that meeting with an agreement to go to the gym more often.

Visit two:  At the first visit, my PT said to email him with any questions and if I felt like it, I could email him monthly on my progress.  So after a week or two at the gym, I emailed him.  I told him I'd met with a trainer at the gym and went over some exercises to do, but that I wasn't too happy with what he had shown me.  The gym trainer was not all that knowledgable and only showed me the bare minimum.  So the PT emailed back and said basically that I needed a more comprehensive program to strengthen ALL my weakened areas.  So he offered to have me come in and he'd show me different things.  He broke it down into sections, upper, lower and core.  We did three different exercises for each area, two reps of each.  It was about a 45 minute workout.  And while I was doing it, I could definitely feel my lung junk loosening up!  My cough was more juicy and I was able to move stuff around!  I was instructed to go to the gym 2-3 non-consecutive days per week…do 15 minutes of cardio to warm up, then go through that routine we had done at clinic.  I won't go into all the exercises because they were tailored towards what I need.  Another CFer may need something different.

Visit three: We did pretty much the same thing as visit two.  Although he added a walk test.  I walked up and down the hall for 6 minutes and he measured how far I walked.  I think I failed this part pretty bad!  LOL.  And it was not for any specific health reason…I could have gone faster/further but its really awkward walking up and down the length of a hospital hallway.  *shame*  So after the walk test…he showed me another set of upper, lower and core exercises.  So now I have 6 upper exercises to choose from, 6 lower, and 6 core.  I am instructed to choose one from each area, do the exercise, repeat once…then choose another set, repeat, then another and repeat.  So all in all, on one day at the gym…I'll do my 15 minutes of cardio, then I'll do three upper exercises, three lower and three core.

I'd highly recommend this to any CFer who is looking to increase exercise ability.  My PT knows what he's talking about, is knowledgable and experienced and he loves what he does!  He's so easy to talk to and I really hope that I can start to see results soon like some of his other patients.

Back to the Grind

Apparently its been a while since I posted!  Wooops!

Last time I posted that I had an awful week as far as exercise goes.  Well the last two weeks have been even worse…but for good reason.  Husband and I went on VACATION!!  We took a cruise to Bermuda.  It was fantastic.  There was only one day (the very first day at sea) that had bad weather, and bad sea sickness as a matter of fact.  It was lovely.  Actually, the seasickness wasn't too bad, it could have been worse, but I did definitely feel the 7-12 foot wave swells and just had to kind of lay low that day.

I think with the whole build up  to the vacation and then the actual vacation I was so exhausted/relaxed/happy that I didn't really feel like exercising.  I did not want to use the ship's gym because it probably rarely gets cleaned and the PT I've been working with was totally ok with that.  My plan was to maybe do some stuff in our cabin the week we were away, but that didn't happen.  The whole week prior to the cruise was spent getting ready, cleaning the house, doing all the laundry and packing…and then of course I couldn't contain my excitement.  So by the time we got on the cruise I was ready to chill and do nothing.  And relax.  Sit by the pool, sip a few drinks, eat a lot of food.  Honestly, I didn't feel like doing much else.  I don't know if this is a CF thing (as far as the exhaustion issues) or just a normal vacation reaction.  I don't necessarily regret the cruise, we are already talking about when we can go on another, but I wish we had participated more.  Gone to more shows, played more games.  But then again…we went on this vacation to sit in the sun and relax and eat good food (there is SOOOOOOO much food on these ships, OMG).  By the end of the day we were wiped out just from that, so we would go back to our cabin and sit on the patio enjoying the sounds, sights and smells of the ocean.  Or we would walk around on the top deck of the ship and enjoy the sunset.

But I need to get back to the gym.  That will happen today.  I promise.  After I go to the craft store, a very dangerous place if you ask me.  ;) I was going to go to the gym over the weekend (we came back early Friday morning), but again, I was still so exhausted and had more chores that needed doing.  I don't want to make excuses, but I need to make sure my body gets enough rest so that I don't end up getting sicker than I am.  I did come down with a cold on the cruise which is not surprising to me. There are 3,000 people aboard the ship and we did *gasp* eat the buffet several times for breakfast and lunch.  I tend to shy away from buffets because of the germs and dirty little hands that reach over the counter, but I couldn't really help it.  The buffet (and all other restaurants on the ship) were delicious and when you are sitting out by the pool its much easier to run into the buffet for a quick bite than to go back to your room, get dressed, and go to a sit down restaurant.  So anyway, I don't think the cold has gone to my lungs, but there is still a ton of drainage from my sinuses and a terrible post nasal drip type cough.  I have to call the clinic for a refill on something today, so I will run it by them on how to proceed with the symptoms.  Honestly, I think once I start exercising again it will get better.

I mentioned earlier that I have been meeting with a PT at my CF clinic.  I will blog in more detail the things we've been going over because I think it deserves its own post.  But if you have the opportunity to meet with a PT that specializes in CF Care, I'd HIGHLY recommend it.  He has been fantastic and really knows his stuff.  We are very lucky at my hospital to have him!

I will leave you with some of my favorite pictures from our week away.  And yes there will be dolphins.  :) They swam alongside our boat for a while on our very last day at sea!  Pretty exciting!

This was our last sunset in the port in Bermuda. We had one more full day (we left at 5 pm, so we missed that sunset).  *sigh* It was just stunningly gorgeous!

The view from our room while we were cruising.  I seriously could sit and watch and listen to the ocean all day.  I am definitely an ocean lover.

Pulling into port.  I believe we circled the island so that we could get some pics. It looks stormy in this shot, but it actually turned out to be a really nice day later on.  We docked around 11 am and I think by 1 pm it was sunny and warm.

We went on a wheelchair accessible bus tour.  Unfortunately, we didn't really have time to make many stops, but the tour was definitely worthwhile.  We got to learn a lot about the architecture, history and the beautiful beaches.  This beach was also down a large hill, so would have been inaccessible for a wheelchair.  There was a small accessible beach near the dock that we went to one day also.

Eeeeeekkk!!!  <3 <3 <3  

A gorgeous sunrise from our balcony.  As you can see, the seas were very calm when this shot was taken.  

Exercise Update

Well last week was pretty awful!  :(  I almost didn't want to even post my update, but what would be the benefit if I can't see the weeks that I am not doing well.  Right now, I will be able to look back and see why I didn't go to the gym much last week, and hopefully change that for future weeks so this doesn't happen as frequently.  (Looking back, I guess I did better than I thought I did…I still went three times last week).  Ironically, I can keep track of my exercise routine on my fertility app!  So I type in what I did and then I can go back and see.  For those that don't know, these fertility apps help you to track ovulation and your period so that you can plan baby making around the right times of the month.  You can add in your emotions on a certain day, whether or not you did the deed, answer questions about your cycle, track your temperature (which helps to pinpoint ovulation..or when the egg is released and ready for fertilization) and a number of other daily activities.  It really helps to keep everything handy on one app.

Sunday (May 17):  30 Minutes of cardio and 20 minutes of weights.

Monday: 30 minutes of cardio

Thursday: 30 minutes of cardio and 20 minutes of weights.

So now today is Tuesday and I am feeling down because I haven't worked out since Thursday.  My reasons will probably be lame excuses, but I am attributing it the holiday weekend.  Fridays are difficult because its the end of the week and I am wiped out by then!  And I prefer to go every other day, don't want to exhaust my muscles too much.  Eventually, maybe I will be able to go more days in a row, but I don't want to burn myself out.  Saturday, I wanted to see my cousins new baby.  *sigh*  I love baby snuggles.  Since Hubby and I are going on vacation soon, I wanted to see the baby before we left because who knows how long it would be before I got another chance.  Not to mention I like to bring new parents a nice meal and if I wait a month, its not as meaningful, I would think.  Sunday was just a huge cookout at my Aunts house.  Again, its my only day to sleep in, so if we have plans, I can't always fit gym time in.  And yesterday, I think the gym was closed.

But today is a new week!  I had emailed my PT at CF clinic two weeks ago to update him on my exercising routine.  I told him I have been doing cardio, shoulders and abs…and he was kind of like you should be doing more strength since you also have weak hips, legs and basically everything.  LOL.  *insert shame face*  So he offered to help me figure out some good activities for everything and added bonus…its covered by insurance!  So I am working a half day today and going in to see him this afternoon.  He says he will be able to show me all types of exercises and weight training to strengthen my whole body.  I hope this session is as helpful as I want it to be and that its not a waste of my time.

Exercise Update

Sunday (May 10):  15 minutes of weights.  This was my ab and shoulder work. Then I also did 25 minutes of running on the treadmill.  I alternated 5 minute warm up, 5 minutes running, 5 minutes slower, 5 five minutes running and then a 5 five minute cool down.

Wednesday: 15 minutes weights, ab and shoulders again.  And again 25 minutes running/walking on the treadmill.

Thursday: 40 minute walk along the river after work.  It was a gorgeous day!  A coworker and I brought sneakers and walked after work.  So I was walking and talking for 40 minutes.  Walking and talking has always been difficult for me as I get very out of breath.  I am hoping with all this exercise, that will get better.

Friday:  15 minutes of weights, abs and shoulders.  And again 25 minutes of running/walking.  Today I was able to do 7 minutes of straight running, then a few minutes slower, then another 5 minute running spurt.  So in total I ran at speed 4.0 for 12 minutes!  My distance in still pretty low, I think I hit 1.3 miles or so.  I'd like to work up to be able to do a 5K distance.  Not sure if I'd ever actually do a 5K, but maybe if I can gain some confidence, it will motivate me to register for one.

Sunday: TONS of yard work.  I consider this exercise because I was super sweaty and salty by the end and I was getting out of breath.  I was lifting plants, shoveling dirt, picking weeds, spreading mulch and raking.  But I am happy to say it was worth it because our yard looks perfect!

Unfortunately, I did not do before and after pics, wooops.  And I did not plant EVERYTHING in these pictures yesterday, but I did do a lot of work.

In this picture, I only did the plant on the very end of the house, you can barely see it, but it'll probably come back stronger next year.  Its difficult to see, but it is a lilac bush!  I adore lilacs and LOVE the scent.  I debated whether to do this one in the front or the back, because we will more often sit in the back so I think I'd have enjoyed it back there.  But husband said we already had too much out back! I will settle for this being outside my bedroom window!

In this picture, I laid out the raised garden bed.  Again we debated where to put this because it is vegetables and will need full sun.  This seems to be the sunniest spot as we are surrounded by trees in the back and bushes on both sides of the yard.  It doesn't appear sunny in this picture, but this was taken late in the day around 6 or so.  I also spread the mulch around the patio and planted that gorgeous blue hydrangea.  I have another on on the other corner from last year that hasn't quite come up yet.  I also moved the hosta (thats the plant you can see straight ahead in the opposite corner).  Because of where we placed the vegetable garden, that plant was blocking an entrance to the patio.  Those come back heartier and heartier every year!  ((it only kind of bothers me that our patio is no longer symmetrical))

The vegetable garden has only a few plants for now.  I want to start small and if this works, then I'll add more next year.  We can always buy more of those wooden beds.  So for now, we have a tomato plant, eggplant plant and zucchini.  The marigolds are there to keep out animals. And there are two potted plants (with I think geraniums) on the front steps and two on the side steps (with full sun/hearty impatiens) for some color in the front of the house.  There is also a hanging plant near the side entrance/driveway.

A Little Background

When CFer's have our checkups, we call them clinic visits.  I typically go every three months, unless I get sick.  But even when I get sick, I am lucky enough that my doctor doesn't necessarily need to see me.  He will call in some meds and I am good to go from home.

When a CFer gets sick with a lung infection, it can take any number of medications to get us better.  There are a few oral antibiotics, which for a non-cfer, would be considered the big guns, the good stuff,  or really strong meds.  For a CFer, these meds are simply old hat.  We've been on them 218,937 times (or something like that), we know the drill.  For a CFer, the "big guns" are IV antibiotics…which for some are also "old hat".  We've also been on these many times, but when we are on these is typically when the others don't work or we aren't getting better or we keep getting sick.

I have been extremely blessed over the last three years in that I have only had to use oral antibiotics.  It has been a whole three and a half plus years since I was hospitalized for a lung infection.  It has been three years and about 2 months since I was on home IV's.  I have several theories as to why I have been this healthy:

1) I don't teach anymore.  I went to college to pursue a degree in education and I was able to finish my college career in 4.5 years.  Again, I was relatively lucky in my health.  When I finished college, I decided to substitute teach, hoping that someday I'd break into a local school district and have the job of my dreams.  That never happened.  For that, I am grateful.  I subbed, (including several long term positions in the same classroom for weeks at a time) for around 5 years and was sick ALL the time.  Also teaching put a huge stress on my body…the workload was tough and I dealt with a lot of needy students (for lack of a better word).  I was emotionally drained thinking about "my kids" and what they went through on a daily basis.  It hurt my heart to see them struggling in school and know that they weren't getting the help they needed outside of school.  I just wanted to help them all.  To this day, I still think of many of them and it has been four years since my last subbing job ended.

2) My husband and I bought a house.  We were living in an apartment building with lots of other people…and smokers and animals.  Honestly, even though the animals and smoke were within the walls of their own apartments, I think it definitely affected me negatively.  We love our home and couldn't be happier with the location.

3) Also, when I was subbing, I was working two jobs.  Subs don't really make much money and I didn't want to get rid of my retail job in case I needed to fall back on something.  So I subbed most days and then worked retail 2-3 nights a week and on one weekend day.  It was extremely stressful and put a huge strain on my body.  When I stopped subbing, I stayed with my retail job for 3 years until last summer when I got a new job in customer service.  With this I am able to work 37.5 hours a week and be home to cook dinner.  I have a better commute and am able to spend more time on my treatments.  And I don't have to take work home and I enjoy my colleagues.

I was going to post my clinic update along with this post, but I am kind of running out of time here.  So I will split it and update my clinic visit next time.  :)

Well, I suppose my first post should be an "About Me".

I am 31 years old born and bred New Englander, which means, I love the snow and I love the ocean.  But I will still feel compelled to complain if the weather is one extreme or the other.  ;)  Currently we are eagerly awaiting spring…with snow still on the ground!

I was diagnosed with Cystic Fibrosis when I was six months old.  I was listed as failure to thrive, meaning I wasn't gaining weight and was getting sick because of that.  I have lived the last 31 years to the fullest and I intend to do the same with all the time I have left in this world.  I have had moments of illness over the years, but I have been blessed with relatively good health for the last three years.  I graduated college in 2006, worked for several years as a substitute teacher and then changed careers to customer service.  It has helped my health immensely to be away from lots of sick kids.  In that time, I also got married (4 years this month) and my husband and I moved from a small apartment to our first home.  We've been here for 3 years.

We are currently trying to conceive our first child with some difficulty.  I have been off birth control for almost three years and nothing has happened for us yet.  We have seen a fertility specialist, had all the tests and were able to do 2 rounds of IUI with no success.  Our insurance will not pay for more IUI's and we aren't sure we are financially or mentally ready for the next step.  So we decided to take a break for a while and plan our dream vacation!  We are hoping it will take some stress off of trying to conceive and maybe later this year or next we can begin treatments again.

This blog will be mostly about those two important parts of my life and any other ramblings I may feel like sharing.  I hope you enjoy reading!

Aside from those tidbits, I love to read, knit, crochet and I got a sewing machine for Christmas.  I love to make people happy with my craft skills.  I also love to cook and try new things.  I have even gotten my husband to enjoy his vegetables!