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!

Help me find some patience

It's been a long time coming, and I am strangely at peace with where we are right now. Actually, thats a lie...this whole business SUCKS.  Every new pregnancy announcement is very close to setting off a whole fireworks of emotion from me.  It makes me incredibly angry that some people have it so damn easy.  Tomorrow is just one example of our long fertility journey.  It will hopefully be the last of the days of fertility testing before we learn what our treatment plan will be.  Two of the things our fertility specialist wanted was for us to do was meet with a genetic counselor and for me to meet with a high risk OB. Then last month when I had my period I was in extreme pain, taking motrin every 4-6 hours around the clock and still miserable in between.  It was found that I have a very large cyst on my left ovary. So I have a check up on that tomorrow too, another ultrasound and an MRI.  We will literally be at the hospital from 10 am to probably 4 pm.

The genetic counselor will probably just go over our (you guessed it...) genetics.  Since we have sent them all the paperwork with my husbands info, I am hopeful they won't send us for more testing, which could delay our treatments even more.  That reminds, I should probably bring a copy of all of the genetic info from him as well as the CF stuff.  Hopefully we still have his Ambry results somewhere.  Ugh, I can't find it now and I have NO idea where it would be.  Or even who to call to get copies.  We had that done at a different hospital about 3 years ago. Ambry is a company that tests for CF.  They were able to look at my husbands blood tests and tell us that they are fairly certain he is not a carrier of the 1,000 possible mutations.  But my guess is they want to talk more about his genetics, which we do have a copy of.  Phew.  That's the reason we are getting the PGD, not for the CF.

Then I have a pre-conception visit with the high risk OB.  Almost all CF patients have to be seen by a high risk doctor because of potential complications that could arise during the pregnancy or delivery. I don't think this appointment will tell me much.  I've met with her before, but the fertility specialist requested me to do it again.  And since I'll be there anyway, I may as well get it over with.  She'll probably just go over my medication list and give me some advice as to what I can be on while pregnant.  I know for a fact that they will be more pro-active if I get sick while pregnant.  If my Oxygen sats go to low it can damage the baby...and since many oral antibiotics are a no-no while pregnant, they tend to treat aggressively with IV meds.  I am ok with that as long as it will be safe for the baby.  So I am not anticipating much drama at this visit.  Just a chat with the doctor.

Then in the early afternoon, I have a pelvic ultrasound and an MRI to check my cyst.  I am really dreading my period this month...its due any day now.  I was literally in pain for 2 weeks last time, I feel like I just finished being miserable and now its going to start all over again.  The fertility specialist had found a large cyst on my left ovary during some testing on my cycle day 3 last month. The cyst pretty much means that ovary is non-usable.  The only way to get rid of the cyst would be to surgically remove it and chances are it would come right back if its endometriosis. And she doesn't want to unnecessarily put me at risk by having to put me under anesthesia at this time.  For right now though, I am going to go back on birth control for at least three months until right before we start IVF.  That may help some of my pain and might help the cyst to shrink a little.  It won't go away completely, but since my right ovary is fine we can just use that for IVF.  And once we (hopefully) get our baby, we can re-assess the left ovary.  The ultrasound tomorrow will check the size of the cyst again and the MRI will help to determine what type of cyst.


The good news was that my right ovary is fine!  We should be able to use that side for the IVF and if we are lucky we will have a few eggs to freeze.  As I keep saying, I am just eager to get this whole thing started.  Especially now since I may have limited fertility.  The doctor did say to do IVF as soon as possible since the one ovary sucks.  And after tomorrow, we go back in two weeks on May 17 to meet with the fertility specialist and decide on an action plan. After that we'll have to get insurance approval and then move forward with the genetic testing.  The company will have to create this device before we do anything, so I am really crossing my fingers that insurance will approve FAST so they can get moving on that.  AFTER that we can start treatments for the egg retrieval. It's a huge hurry up and wait game.  Wish me luck that I have patience to deal with all of this.

Struggling Today

I didn't want for this blog (the whole thing, not just this post) to be all sad stuff, but to be honest, thats what its been.  I don't want people who read this to be judging that I am a sad and miserable person.  Because generally, I'm not.  I try to be positive even when I'm feeling down.  My life with Cystic Fibrosis has taught me that…life may shoot you down, but you gotta get back up and make good moments and memories.  But this struggle to conceive has been extremely difficult, more so than any physical pain I've endured over my lifetime.  Every time someone I know announces a pregnancy or has a baby, I am so conflicted with emotions I can't even begin to describe them.  Inside, I am reeling with heart ache and crying my eyes out.  On the outside, I smile and say what everyone else would say "I'm happy for you, congratulations." etc.

I want so bad to be happy for them, but I am torn with feelings of sadness for me. Why do I struggle?  Why does it appear to be easy for you?  I know in my heart that I shouldn't feel this way, that I should just smile and be glad for new life…but today I am sad.

The process is going to take us a lot longer than we thought to even get close to IVF.  We have to get all our fertility tests redone, then write to insurance and pray they cover most of the cost.  This is where we hope the tests prove we are infertile.  According to our insurance, we should be covered for both the IVF and the pre-implantation genetic diagnosis testing…but of course, I can't help but think they'll try to deny us.  I have a copy of the PGD policy, but I am still planning on calling Blue Cross to double check the coverage.

I find comfort in the fact that we are heading in the right direction, that we are getting these procedures ready to go…but I am very impatient.  We will have the tests done in the next few weeks and go back to meet with the fertility specialist in the middle of May.  At that point, we will discuss all of our results and go ahead to get insurance approval.  Once insurance has been approved the genetics company will create a probe to test for that single mutation we need eliminated.  That can take up to four months.

The whole idea of this process just…sucks.  I hate that we need it, I just want my family, my baby.  We've waited for so long and tried everything under the sun.  Why does my body continuously seem to fail me?  There are so many other parts of my body that don't work right…why this too?  Haven't my husband and I been through enough with our struggles?  With our illnesses?

But yet, we keep moving…we work full time, we own a home, we love each other, we have great supportive families.  That seems like we should be good candidates to be parents.  Why can't this one thing come easy for us?  Although I would never wish this struggle on anyone…sometimes I wish I could share my pain with more than just my infertile friends.  Sometimes I wish that others knew how hard this struggle actually is.  I believe that this will make us stronger and we will be better for having been through all this shit…that we will appreciate life and a child because it wasn't just handed to us.  As always in our lives…my husband and I know struggles, we will move on and we will make the best of what is given to us.  We will enjoy those small and special moments when we get blessed with them.

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*

Emotions of Infertility

It's definitely coming down to the wire here.  It's been 3.5 years off birth control, 3.5 years of trying to conceive naturally and with treatments.  3.5 years of trying all the remedies and all the old wives tales.  3.5 years of watching friends and family become parents (some more than once). 3.5 years of emotional stress of trying to create a family of our own. 3.5 years of infertility.

Our second opinion appointment is in just about a week and a half and my emotions are more mixed than ever.  Yes, we've been there before.  We've tried some of the treatments, we've had all the tests…but this is pretty much a last resort.  This will be the "big guns" as they say.  In-Vitro Fertilization.  It is the most invasive of the fertility treatments, which is why it is usually the last thing doctors try.  There are many drugs involved.  Some are shots, some are creams, some are suppositories to keep you from miscarrying.  In addition, throughout the whole process there are endless tests, ultrasounds and blood work.

I am having so many mixed emotions, I don't even know where to begin.

Sadness:  I am sad that it has come to this.  The one thing that woman are "bred" to do naturally, and I can't even do that.  I feel like my body is broken…I have so many other health issues…why does infertility have to be one?  Why can't this one thing be easy for me, like it is for so many others?  I am hoping that eventually this sadness will give way to better emotions. It's just a part of life.  Certainly there are other people out there who have this very issue and this emotion.

Jealousy:  This ones tough to explain.  I dread sounding ungrateful.  I definitely have a lot of things going for me and I am so grateful for my current health…but I am painfully jealous of woman who can get pregnant easily.  Those who have "honeymoon" babies. Yes, your babies are loved and I am glad of that…but what about people who take their children for granted.  Those are the ones that make it so much harder to explain the jealousy.  Those who have children taken away from them, but then they keep on pro-creating. Or those who hurt their children physically and emotionally... Thats where it gets really freaking unfair.  Thats what really sucks about infertility.

Anger:  This goes along with the last part of jealousy.  I think if you read that portion, you will understand why I am angry about this process.

Excitement: I am so eagerly anticipating this appointment.  I want to get this process started, I want to meet our new doctor and I want to move forward.  We live in a great time and place for this wonderful medical treatment. Our insurance will cover most (if not all…thank you Massachusetts!) of our treatment.  If we lived in any other time or place, we probably wouldn't be seeking treatment.  I want to hear what our doctor has to say, she's supposed to be the best in the clinic!  And I want to see success.  If I keep these hopes up, maybe it will up our chances.

Happiness: That my husband and I are in this together.  That we have chosen each other and that we are ready to embark on this journey.  It won't be easy and it won't always be fun, but we have each other.  We'll get through this together, no matter what happens.  I'm happy for online support groups.  Infertility is such a personal and private struggle, my Cysters and (non-CF) friends that have been through infertility are a great treasure.  Although our journeys may not be exactly the same, it helps to know we are not alone in the struggle.  I wouldn't wish this pain on anyone, but I am glad to have others who've been there.

I am sure as things move forward there will be many more emotions.  I want it to happen quickly, but I know I need to practice patience.  Our baby will come when we are ready and when the time is perfect for us.

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.  :)