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.

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.

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.

September 4

So I guess that's what this will all come down to, September 4 we have our appointment with the fertility specialist…again.  I thought maybe I'd be excited/happy to finally be doing this again, but I really can't describe my feelings.  I have been extremely on edge lately, letting little things bother me more than they should, and just generally feeling very anxious.  I want this to happen, I want to be pregnant.  I want to be a mom, I want to create a family with my husband.  But I have this intense fear that it won't work.  That it'll never happen.  According to our insurance, we have five chances.  What happens after that? What if those five chances don't work? What if one of them does work?

I think my anxiety about this process has been compounded by non-understanding friends and family.  There are only a few people (besides all of my CF sisters) that know of our struggles to conceive.  One of them is a good friend from college whose sister also went through infertility.  I have often felt that only opening up to people who've been in my shoes will help me, so I opened up to this friend.  They should understand, and they will comfort me and guide me because they know what its like.  But anyway…this friend from college has a 2 year old and she emailed our group of friends to set up a "play date" for the kids (2 of the 5 girls have kids).  Before you judge me, please know how difficult that type of thing is for someone trying to conceive.  I adore children, I love their snuggles and their laughter…but in my current state of mind, I really am not finding as much enjoyment in that.  Why am I being invited to your child's playdate?  Do I have to go?  Will I be "disowned" from our group if I refuse or cancel at the last minute?  A lot of this trying to conceive is putting on a happy face and moving on…getting up and going about your day as if nothing is out of the ordinary.  Right now, I don't want to do that.  I don't want to put on my happy face.

It is such a personal struggle, feeling like you're doing something wrong.  IF you talked about this, it becomes very personal.  Or for those who've never had these struggles, it becomes a very awkward subject.  They don't see why you are so upset…or why you can't just "relax" and "let it happen".  The problem is infertility is a very real medical struggle.  There are reasons why this isn't happening and sometimes it takes a lot of medical tests and procedures to make it right.  Relaxing won't work for those problems.  This is something that so many people are able to achieve freely and easily and for those of us who can't…it feels as if we are broken.

And then there's Facebook.  Again, I adore seeing pictures of your kids and the funny stories make me laugh…its the "my life is so much better with kids" posts that irritate me.  I hate the way this is coming out, but I can't verbalize the emotions.  I would do anything to be in your position.  I would love to be a mom posting pictures and anecdotes of my little one(s).  But right now, I don't want to be anywhere near those posts.  Again it goes back to the "i'm going to put on my happy face" attitude.  If I take a break from Facebook or stop posting/commenting…people will worry.  My family will wonder whats going on…and I can't bear the thought of having to tell them I can't/haven't been able to conceive.  

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.

Mother's Day

I wasn't going to post about this day because honestly I didn't/still don't know what to write. I wasn't expecting to have such mixed emotions, but as the day got closer, it was harder and harder for me to grasp and I don't want to be a "debbie downer" all the time on this blog…but hey, this is what I started the blog for.  I needed an outlet for my feelings when a therapist or social worker is unavailable.

I am not a mother yet.  I have wanted to be a mother since like forever.  I always wanted to take care of my little cousins and I begged my parents to have more children so I could snuggle babies (they didn't listen of course…and I only have one sister).  I love looking at baby equipment and if I do get pregnant I pretty much have my whole nursery picked out.  I dream of the day that I can start knitting or crocheting projects for my baby.  I don't want to start now, because I feel like I may jinx it in some way.  I have not purchased anything for my own future children because it would be too heartbreaking to have in the house.  I love to nurture and help and I want to be able to watch my own children grow, not just other peoples kids.

My mom lost her mother at a very young age.  My heart breaks for that.  Although I may not say it to her, I am incredibly grateful to still have my mother around with me.  And also my paternal grandmother.  We are all very close.  My sister and I spent the day with mom, thats all she wanted.  We weren't supposed to spend money on her, just time.  We took her to lunch and then went over to my grandmothers, where my dad and uncles were helping Nana. Nana (and our family in general) has had a difficult few months and it was lovely to see her and just talk.

So overall, I did have a nice Mother's Day.  It is the start of a new month of trying to conceive, of new hopes that this will be the month.  And if not, in the words of Tom Petty "I won't back down".  I will not give up.  My husband starts his new job in a few short weeks and if we still are not pregnant the normal way, maybe we can go back to fertility treatments as soon as our new insurance takes effect!

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/

Why I started blogging

Let me preface this by saying, right now I am in a good place mentally.  Prior to this story I am about to tell, I was also in a good place.  That's the thing about trying to conceive, no one tells you how difficult and how emotionally draining it can be.  In one respect, you can see each new month as a new chance, a clean slate.  On the other side, your heart is breaking because yet another month has gone by and it is another lost chance.  One day you are perfectly happy and blissful in your life, the next you are depressed and feeling like you're missing out on something incredibly amazing.  

A few weeks ago, I got a text from a friend.  We haven't seen each other often since she had kids and when I try to make plans, there is always some random excuse (I swear she wrote the book on making up excuses).  Well this "friend", we'll call her X works with a woman who has a child with CF.  I guess she's not a child, she's an adult now.  And it just so happens, I know this family personally, we grew up in the same town and I almost went to the same school as the girl.  Well anyway, the texting conversation started off harmlessly, and then suddenly X brings up this family.  She did it in a very round about way, almost like the only reason she texted me was to talk about this family.  We were talking about one thing, then she sends me a picture of this CF mom's tattoo and starts in on how the daughter with CF gave birth to a little girl a few weeks ago.   The text went like this "I will tell you this because I want to give you good news, but I hope it doesn't hurt.  Her daughter made it through pregnancy and had a healthy baby girl yesterday.  S said for someone who was told her daughter wouldn't live past her teens, wouldn't get pregnant, wouldn't carry to term, just had a girl and I cried for you because because I miss you and because of all you go through and how strong you are and how much my heart hurts for you."

When I first got the text, the only part I saw was her daughter made it through pregnancy.  At first, my heart broke because I thought maybe she got sick after the birth.  Any number of things could have happened.  I realized quickly that was not the case.  But at the same time, all I could think about was that first part.  About the birth.  I cried for myself, and for my family…who is missing out on the love of having children.  In my heart, I wanted to be happy but I was so envious I couldn't think about that.  Little did X know how much this news really did hurt.  I think it physically hurt my heart because it wasn't my turn.  Each day gets easier, but each day gets harder.  

Now as I am typing this post out, I realized what X said in the second part of that message (the non-italiscized part).  I think I was so blind to the fact about the baby being born that I literally didn't even see what else was in that message.  Here I am, angry, sad, and upset that yet again it wasn't my turn…I didn't even see the love in that message.  Honestly, as I went back to read it today, that part wasn't even in my memory at all.  I am glad I went back to read the message, I just wish it hadn't taken me several weeks.  I am grateful for loving friends and I hope that one day we will be able to spend more time together without making excuses.  

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!