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!

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*

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.  

Pennies from Heaven

I'm not always looking for signs from above, but I do firmly believe that they happen when we most need them.  I have friends and relatives who have been taken from this earth far too soon and I like to think they are looking out for me, letting me know that they care and they haven't forgotten about little old me.  Several weeks ago, I was at the gym doing my workout and I found a few pennies on the ground.  Later that day, I found another (can't remember where).  I definitely feel that those pennies were there for a reason.  Someone was watching out for me, telling me that the next week would be difficult.  Little did I know, how difficult.

The day after finding the pennies, I had a lovely day with my parents.  I got home and was browsing through Facebook and found some posts on a friends wall that made me really worried.  Well come to find out, a fellow CFer…someone I have known personally and someone our whole community has looked up to and loved…decided to end her life.  At least thats how the news reports appeared.  She went missing and was found in her vehicle in a remote location far from her home.  Our community was shocked, heartbroken and hurt.  I cried.  A lot.  I reached out to others who knew her and we all couldn't believe what had transpired.  It will take a long time to believe she is really gone.  Especially because we didn't see her everyday.

I am not angry with her, but I am in full disbelief that someone would feel so lonely that, that is the only way out.  I know that some people do feel this way and I wish there was more we could do to help them.  It is painful for the survivors, but i think that we need to be more understanding of mental illness.  I hope to never be in that position and I had/have a lot of questions as to the why.  And I know I will never know the answers, I am coming to terms with that.  She overcame so many odds, CF, lung transplant, kidney transplant, etc…and she left us on her own terms.  She didn't let her disease beat her.  I can't imagine the pain she was feeling and I hope that she is at peace and in a better place.  I think someone, maybe her, was watching out for me that morning.  Telling me to stay strong.  Even a few days later, I think that she continued to look out for me.  I heard many songs on the radio…telling me to be strong and live my life.  RIP and Breathe Easy Dottie.  We love you.  I am a stronger and better person for having known you.  Thank you for all you gave to your fellow CFers, you will not be forgotten.

On the same day we found out she was missing, my husband and I got some good/bad/neutral medical  news regarding his condition.  In my mind, I think it is good news.  His doctors and researchers were able to pinpoint a gene that contributes to his disease.  We were told to stop trying to conceive naturally, which it hasn't happened anyway so it is unlikely to happen that way…because there is a 50/50 chance he'd pass MD on to a naturally conceived child.  We kind of had this feeling anyway.  BUT the good news is that when we decide to pursue fertility treatments further…we can use a very specialized method of IVF to weed out any embryos that would have my husbands form of MD.   Which would greatly reduce the risk of having a child with MD!  Prior to this news, we were just sort of winging it, taking the risk that we may or may not have a child with MD.  At least now, the doctors will know what to look for and we can prevent it.  As always, I am getting antsy to get on with this, but I need to be patient.  The best baby is yet to come for us and we will be forever grateful when it does happen.

The other good thing that came out of the MD diagnosis…I think my husband is feeling a lot more confident in the direction we are going.  He was always worried for many reasons and although he may not have said it out loud…I think the possibility of having a child with MD was weighing heavily on his mind.  Not to mention the fact that he won't be able to do as much for/with his child(ren) as an able-bodied person.  For now, we will move on to the next fertility steps and hope for the best.  He is much more ok with IVF now than he was before.  He is starting his new job at the end of the month, so hopefully we will have the new insurance right away.  Then we can make an appointment at the new clinic.  I was hoping to get it in before Christmas, but I am kind of thinking of putting it off until January.  I think work and life will slow down then and maybe we'd have a better chance at success with less holiday/new job stress.

I had an extremely realistic dream Friday night that I was pregnant (no, I am not right now) and although it left me quite depressed yesterday…I woke up feeling confident today.  We will not give up this dream, we will pursue it and do what it takes.  There is a reason for everything and even through the heart ache of trying to conceive naturally for the last three years, maybe that is a blessing in disguise.  It hasn't happened and there is a reason why.  So although the last few weeks have been a whirlwind of good, bad and sad news…we are still here, we are still fighting the good fight.  And we will not give up.

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

Miscellaneous Updates!

So I went for my 8 week PT check up yesterday.  At least thats how long I think its been since my initial visit.  I was there about a month ago right before our cruise, but when I started this process it was a few weeks before that.  So he said I am doing phenomenally! I was so happy to hear some good news.  It was a rough morning at work since I only work the half day on Tuesdays and we were busy.  And I was in a rather iffy mood.  I don't get to the gym as much as I'd like, so I thought I wouldn't be seeing any improvement.  It came as a bit of surprise at how excited my PT was for me.  He is very encouraging and always has an uplifting way of looking at things.  When I said I wasn't going as much as I wanted to…he said "but its so much more than you were doing."  And "you have to start somewhere, you'll work your way up to more".  And when I said that my family was ragging on my because I couldn't remember the exercises…he said "screw them.  don't let them get you down."  LOL  Funny thing is, I was thinking the same exact thing, but he said it before I could!

So far I am still loving it!  Last week, I went to the gym once and did cardio and weights.  Then Saturday, I went for a walk with a coworker after lunch. Of course I didn't have the right shoes, so my hips were a little sore after the walk.  It was pretty hot all last week and exercise was difficult even in the AC'd gym.  I had to keep slowing down on the treadmill to catch my breath.  But overall, I am doing pretty awesome.  I did cardio at the gym on Monday this week, skipped my weights because I knew I'd be doing those the next day at the PT office.  AT PT, we went over another set of exercises to do, a little bit of a step up with the intensity.  They are exercises I can work into my regimen and they are things I never would have been able to do when I first started this process.  Planks on an unstable Bosu Ball, staggered push-ups (yes I can do real push ups now too!), weighted push ups, step exercises.  So excited to start working these into my routine!

I had my CF clinic visit with my doctor last week…I go there every three months.  PFT's are stable!  I think the number was exactly the same as three months prior…haha.  Hows that for consistency? If you've ever done these tests before, its pretty difficult to get the same exact number because they make you do three (or more) tries.  I was able again to speak with the dietician.  I have been having some digestive issues, especially at cookouts lately.  I will eat something crummy, but oh so yummy, and almost immediately will get very bloated and uncomfortable.  I have never really run into this before, always been pretty good as far as CF tummy issues.  Dietician suggested staggering my enzymes a little better…maybe take two when I start with appetizers, then if I am still eating 90 minutes later, I can take some more.  Again, I've never really had to adjust my enzyme dose very much.  My prescription is for 4 pills with meals and two with snacks.  And sometimes I don't even take them with the snacks.  So I will have to keep that in mind when I am at my friends cookout this weekend and see if it helps.  I also asked her about snacking for/or after I go to the gym.  This is an ongoing issue with me.  With CF, we use a lot more energy than a "normal person" just to breathe…so we need to snack more often.  Not to mention our bodies don't digest the foods we do eat, so we aren't able to absorb the nutrients as well.  When I go to the gym, that urge is even greater…especially right after and into the next day.  I've been doing yogurts (go me!) even though I am not a huge fan of the texture, I've been doing it because I know that is a better snack than cheez-its or ice cream for example.  The other interesting thing she suggested is to buy a big bag or pack of raw almonds and make my own "100 calorie pack".  So this way, I don't have to pay for the pre-made individual packets which are always so much more expensive.  So I had my mom grab some with her wholesale club card.  I am going to try roasting them and salting them, then freezing them in plastic bags in about a 1/2 cup increments.  I also really enjoy cottage cheese and crackers as a healthier snack.

Of course my doctor asked about updates on our trying to conceive efforts.  We are still trying the normal way for now.  My husbands new insurance doesn't kick in until August 1, so we are hoping (if we don't get preggo before) to go back to the fertility treatments sometime after that.  I started a few new vitamins that are specially formulated to help woman trying to conceive.  I hope they aren't hoaxes…haha…but the reviews on Amazon were very good.  Don't worry, thats not the first place I heard of them.  I have some online forums where people use them and they do come from a legit place. I wanted to look at the reviews on Amazon because it was different than the company that makes the meds.  Meaning the reviews would be more abundant and less fabricated.  I'm also trying the grapefruit juice thing.  I have tried this in the past, but I don't think I was consistent enough in drinking it and I don't think I drank enough each day of my cycle.  INSERT TMI: For those that don't know, it is supposed to thin mucus, making it easier for spermies to reach and fertilize the egg.  It may be an "old wives" tale, but at this point, if you told me to stand on my head for an hour after doing the deed…i'd happily do it.  LOL.

So once our insurance kicks in, I will have to call them and check on fertility coverage.  Depending on what they cover, and what the copay is, we will move forward. We also both have secondary insurance because of our disabilities, which our original fertility clinic didn't accept.  Because of this, we couldn't proceed with IVF at that time.  The copay would have been pretty steep.  So IF our first insurance has a smaller copay for IVF, we can go back to our original clinic and start right away.  If the new insurance still has a high copay, I will have to call our secondary insurance and see if they have fertility coverage, which they probably do not. At that point, we'd probably try a few more IUI's with the new insurance, since those copays are usually smaller than IVF.  If they do have coverage, we may have to look for a new clinic that will accept the it.  I don't know if I've said this before, but we are very lucky to live in MA because it is mandated that private insurances cover some form of infertility coverage.  It is a proven medical issue.  But our secondary insurance is like medicare, so not sure about that.

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.

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.

Exercise

So my CF doctor has been asking me to see a PT at the hospital for several months now.  When I switched to the adult doctor, it was one of the things they told me they do differently.  My pediatric CF doctor was also licensed as an adult doctor, but the majority of his cases were children.  And when my husband and I started trying to conceive, he decided to cut the cord so to speak.  Yes he has had patients become pregnant, but because the adult team was/is just as good…he (the peds doctor) knew it was the right time to switch.  I was excited for the change, but I knew I would miss the team terribly.  I sobbed the whole way home…an hour driving in the car.  Yup, that wasn't an easy transition.

One of the things they do differently at the adult clinic (same base hospital) is monitoring everything regardless of how you're feeling.  I was used to pretty much only being monitored when I got sick.  I saw the PT once when I got my vest eight years ago.  I hadn't had a chest Xray in years and I had never had a glucose tolerance test. (GTT is the test for diabetes, since CF patients can develop it later in life).

Anyway, that switch took place about two years ago.  And starting last fall, my new doctor asked me to consult with the clinic's PT who specializes in CF.  Because of my work schedule, I was just able to go a few weeks ago.  It was actually perfect timing.  I had started working out using a DVD set.  It's called T25 and is part of the Beachbody (P90X) program.  It is a lower intensity, but gets good results and my friend had it so she let me borrow the set.  The program I did was 25 minutes a day of pretty intense workouts.  Each day is a different focus…cardio, abs, lower focus, upper focus, and total body circuit.  So you work out 5 days a week, then have a stretch day and a day off.  It was great for the first two weeks.  A half hour a day, I could do it right when I got home before hubby got home, then I'd cook dinner.

At the beginning of week three (right after Easter), I started getting this severe pain in my mid-back on my right side.  Like right at the bottom of my shoulder blade.  I took a few days off and then got back to it.  At the end of that week, the pain was back.  :(  I knew my appointment with the PT was coming up, so I stopped working out.  After a few days I made the trek into the hospital to see him.  He did a lot of strength tests, we talked about my exercise routine, and I did a treadmill test.  I have very weak shoulders and hips, which is probably why my shoulder had started bothering me.  He was very knowledgable about this particular program I was doing, so that was a bonus!  Since some of the DVD's have a lot of floor exercises, including planks, push-up walks, and others, the PT suggested I do a modified version and only do the planks until I build up strength.

As for the treadmill test, that was also mediocre news.  The good news is that my legs got tired before my lungs did…but that was also the bad news.  The way he explained it…the fact that my lungs didn't tire out was great.  That means, I have good lung function and I can workout the rest of my body to get up to snuff.  If my lungs had gotten tired first, it would be much harder to gain that function/strength with exercise.  The reason this was also bad news was that it means my body is VERY out of shape.  #feelingfat  ;)  I have always made up excuses for myself.  And yea sure, I work 40 hours a week, 6 days of the week, take care of my house, my husband and myself.  I don't always have time for exercise.  But the moral of the story is I need to find time.  I need to do this for my own health, especially since we want a family.  I want to be able to see my family and grow old with them.

Coincidentally, the same day I saw the PT, I got approved for a grant through the CF Lifestyle Foundation (here is their website http://www.cflf.org) to pay for a gym membership!  So last week, I got my butt to the gym.  I am really hoping this helps me to stay accountable and actually do the workout.  I  did the elliptical, treadmill and some weights twice last week.  And then yesterday I started the DVD workouts again too.  I am hoping to sort of alternate, gym 4 times a week and some DVD's in there too.  With my gym membership, I will get a one hour free training session and I actually can't wait for that!  I want to know what weights to do for different parts of my body and how much to lift.  Here's to a new awakening, and a better me!  I will try and update my workouts once a week and maybe that will motivate me more.  To share what I've done and keep track.  I am so excited for this opportunity and so grateful to CFLF for this grant.

Infertility Week

Apparently it is infertility week.  I was planning my next post on being a general CF update, but I think a lesson on our fertility journey will be better for right now.  Especially given what happened to me last night.  I was out with a bunch of girl friends…two of whom have beautiful babies!  Of course we get talking and the subject of babies comes up.  One of the girls knows about my struggles to conceive, but I really don't/didn't want to discuss it with the others.  Its a painful discussion and I really don't want sympathy. But of course, the one who doesn't know about our struggles asked if we are trying.  I wanted to pour my heart out, but at the same time I didn't.  I don't want to cry, i don't want them to feel badly.  It was a big struggle going on in my head.  I think she asked in an excited way…an "oh a playmate for my baby would be great!" sort of thing.  But I just can't come to terms with the discussion. YES I would love to give your daughter a playmate, YES I'd love to join the "mommy club"…but I couldn't face that discussion.  Its so difficult to talk to people who don't understand and thats why I started this blog.  This is where I can pour my heart out, my deepest thoughts and angers and I can lash out without worrying about what people think…and maybe someday I will share this story with pride (with a baby on my hip).  But for right now, we are winging it.  Maybe it will happen soon, maybe it will happen in years.  There is a reason and time for everything.

My husband and I decided three years ago to stop our birth control and sort of "go with the flow" to get pregnant.  We tried off and on for about two years before we decided to seek help.  At times during those two years, we tried in earnest…temping, timed intercourse, watching my cycle.  Nothing worked.  For about a six month period, I was also in a drug study for CF treatment and we did have to stop trying, but I never went back on hormonal birth control.  The definition of infertility is typically that you try for one year and if you're not pregnant…you seek help.  Or you wait longer and then seek help.

We talked many times over the course of our two years.  The subject of seeing a fertility specialist was a daunting and scary one for both of us.  I was eager to go after a year of trying, husband not so much.  I never pressured him, I would gently ask and if wasn't ready, then I wasn't ready either.  It had to be a decision that we made together.  So right around the two year mark, he asked nonchalantly "so…do you still want to see the sperm doctor?"  Or something around those lines.  Typical guy response.  Of course I wanted to jump right on that and make an appointment, but again, I didn't want to pressure him.  So I waited a few months or weeks, I can't remember and then I asked him again.  He still seemed interested so I went for it.

In October of 2014, we had our first consultation.  It was mostly a fact getting experience for the doctor.  He asked about both of our medical histories, etc.  Because of where I was in my cycle at that time (I think like cycle day 8, so at the very beginning)…we had to wait a whole month to start any testing.  I was instructed to call on day one of my cycle and they would schedule it all.  Everything had to be done on certain days to see if I ovulated, to see if I had the right hormone level and to see if my tubes were intact and clear.  In the meantime, husband scheduled a semen analysis.  (I swear I would much prefer any of my testing over that particular test!)

A few weeks after all of our testing was done (so about 6-8 weeks after our initial consult), we met with the doctor again.  Apparently all of our testing was normal!  His swimmers were good quality and quantity.  My tubes were clear, hormone levels good and I appeared to ovulate normally.

Because it had been so long trying and NOT conceiving, our doctor told us he could try a few different things.  He could try IUI or intrauterine insemination, which is the less invasive procedure.  The short of this procedure is that they give the female hormones to "force" ovulation, and then on the anticipated day of ovulation, the male goes in to the office and produces a sample.  A short while later, the female goes into the office and the sperm (in a large syringe like apparatus) gets placed directly in the woman's uterus, bypassing certain parts of the female anatomy.

Our other option was to go directly to IVF, in-vitro fertilization.  This procedure is much more invasive and requires many more hormones for the female.  It works the same in the beginning, they give you medication to ovulate, but in higher quantity so that you release more eggs.  Then the doctors go in and retrieve the eggs.  The male then produces his sample, and the two are placed together in a petri dish and you hope that some of the eggs fertilize for use later.  The fertilized egg(s) are then placed back in the female with the only thing left to happen is to attach to the females uterus.

Two weeks after each of these procedures, the female goes in for a blood pregnancy test.  We decided (or insurance did) that we would go with IUI to start.  Our insurance covered the majority of this, so thats what pushed our decision.  We tried twice and got nothing.  After the second one, we had a death in the family so we decided to take the month off.  I wanted to be there with my family and not have to rush around for tests and procedures.  In a sick twist of irony…I got very sick the day before the funeral…and I couldn't be there for/with my family.  It truly broke my heart.  But looking back that was a good time to stop our treatments because I wouldn't have been able to do it with being sick.

It has since been a few months and we have not yet been back to the fertility center.  We are not financially or emotionally ready to take the step to IVF.  We can still try the normal way and see what happens.  We know there is nothing holding us back, so maybe that will break our curse.  And maybe it won't…we will be patient.  And when the time is right it will happen or we will decide to try something else.

Thanks so much for reading all this mumbo jumbo!

If you are looking for more info or stories of infertility, I love this one.  I follow this family on Facebook, you've probably read about them.  The Gardner Quads.  She posted a link to her very first blog post this morning…and with me being new to the blogging world, I hope it is etiquette correct / ok to share her post.  She writes wonderful stories about her journey and portrays some of my exact feelings!  Please go read it.  If you have not struggled with infertility, it may help you understand what someone else is going through…and if you have struggled or are currently struggling it will make you feel less alone.
http://gardnerquadsquad.com/two-years-ago-yesterday-my-story-with-infertility/

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!