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.

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.

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

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

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

Monday: 30 minutes of cardio

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

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

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

Exercise Update

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

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

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

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

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

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

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

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

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

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.  :)

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!