New CF issues

CFRD...Cystic Fibrosis Related Diabetes.

As we, with CF, age there are many complications we may never have dreamed about before.  As many are probably aware, CF patients are getting older...more than half of all CF patients are now over the age of 18.  Because of our malnutrition and breathing complications, our bodies tend to experience more issues as we age and we experience these issues at a younger age than a healthy individual.  It is wonderful to see us all becoming adults and living happy lives.  But with that we still have to worry about our health.

I have recently been diagnosed with Cystic Fibrosis Related Diabetes.  I was on the very edge of being diagnosed for quite some time and was always hoping I could hold it off as long as possible.  But life's funny like that.  As we say..."if you want to make God laugh, tell him your plans."  Right now my diabetes is extremely mild, we caught it very early because of all the monitoring.  Well actually, that's a lie, sort of.  I went to my physical with my PCP so that I could get a referral for my (now past) sinus surgery...this was several months ago. Well at my physical, my doctor gives me the order for blood work and says, you can come back for that since I know you have to get back to work.  Well I knew I wouldn't get back anytime soon and I wanted to make sure I did everything right for this surgery. I mean, that's the whole purpose of getting my physical...to make sure my body was up for the surgery.  Well the blood work showed an elevated Hemoglobin A1C (or HBA1C).  This blood test measures your red blood cells over the prior three months and is not often used for CFRD diagnosis because the red blood cells in CF patients don't stay healthy long enough.  BUT if you notice this number trending higher, it can signal CFRD.  Mine has always fluctuated between 6.0 and 7.0...the cutoff is about 6.5.  The note my PCP wrote on the results page was something like "your A1C indicates Diabetes, please see your endocrinologist to discuss treatment options."

So I emailed my Endocrinologist...She is/was conducting a study with other CF patients to see if there are better ways to diagnose CFRD.  The ultimate test is called a Glucose Tolerance Test (GTT), which by the way is MISERABLE, namely because you are making a CF patient fast for 12 hours before.  Then you drink this super sweet, almost like flat orange soda syrupy stuff and they check your blood sugar every half hour for 2 hours  So my Endo got me into this study and I think I am like patient #3 or something.  The study starts off with a GTT and other blood work and then you wear what's called a Continuous Glucose Meter (a device the size of a quarter that measures your blood sugar every 15 minutes) for 2 weeks.  I can't see the results in real time, but I was given a hand held meter to check my sugars before and after meals.  At the end of the two weeks, you peel the CGM off your arm and send it back so they can analyze the numbers.  So my results showed I go pretty high after breakfast and lunch.  Like any number consistently over 180 is too high.  So my Endo prescribed insulin to take in the mornings and yes it's a shot.  The pills don't typically work on CF patients.  It's not a terrible pain, but a bit of a nuisance.

I can't say I'm surprised with the diagnosis, I saw it coming for a while and was kind of just biding my time and enjoying life.  The problem with CFRD is that it's not quite Type 1 Diabetes, but also not quite Type 2.  With Type 1, your body just doesn't produce insulin, and it's usually diagnosed in childhood.  It is ONLY treatable with insulin.  Type 2 is more prevalent in people with poor dietary habits or overweight people. For this type it can sometimes be controlled with diet or with extreme weight loss.  CFRD is kind of a mix especially with me at this point.  Right now, clearly my body is producing some insulin because I don't need to give myself shots with every meal.  And even sometimes with breakfast, I probably don't need it.  Or if I exercise, I don't really need it.  My body just isn't producing enough or not releasing it in time to reach the meals I've just eaten. My diabetes will not likely go away, it will likely eventually get worse and I will probably need insulin with more meals.  Some people with CFRD have it full blown needing insulin ALL the time right when they are diagnosed, some take their time to need it all the time.

One thing that has surprised me is my reaction to the diagnosis.  I hope you've read this far, because this was the original intent of this post.  I started this insulin dose May 1 and have not told anyone except immediate family.  I don't know the protocol for telling someone you have a chronic illness this late in life.  CF has always been there, I was six months when I was diagnosed, so it's something I've always known, not a surprise.  How do I break it to the people who love me that I also have this other chronic disease now?  Not to mention, one of the difficulties with CFRD is that we still have to maintain our caloric intake in order to maintain our weight.  So when we get CFRD, we don't have to adjust our diets, we adjust our insulin dose.  I don't want to be judged because I still have this gigantic appetite.  And I feel like when I start telling people, they're going to think less of me.  They are going to think I'm taking advantage or pushing buttons that should't be pressed, taking risks and using insulin as my only way out.  I didn't think it was this hard to be diagnosed with a chronic disease.  There are a whole hell of a lot of emotions running through my brain.  Like, I haven't even told my boss.  If anyone should know, it's her.  If something goes wrong and I am sick at work or having low blood sugar how is she going to help me if she doesn't know.  I'm so baffled that I am made so speechless by something I know so much about.

EDITED TO ADD:  I also don't want people feeling bad for me!  That's a huge part of my anxiety over telling people.  I don't want the sympathy, the "oh you have CF AND diabetes.  That must suck."  I don't know how to get over this feeling.  I don't want my friends and family to worry.  I don't know, I guess I kinda don't feel like its real yet.  It's such a small need of insulin that I don't feel like it's really necessary to tell people.  Hmmph.  Tips and tricks would be appreciated if you've been in my shoes! :) 

*****

If you have CFRD or any other chronic illness and were diagnosed later in life, how did you handle it?  How did you bring up the topic?  Would love to hear some of your tips and tricks!

Yarn Love, part 1

So I said a while back that I wanted to blog more about my life outside of CF, so this is my starting point.

I have been doing a lot of knitting and crochet lately and I just find it hard to sit down and type out my thoughts.  I feel like I'd much rather be working with my yarn.  ;) But I've also been following a lot of yarn related blogs lately and I really like what I am seeing and would love to contribute to the yarn blog world.  So I thought maybe I'd "try" to alternate a crafty post with a health related post...or maybe focus more on my crafty things than my health issues at all.  We'll see how this works out.  In the next few posts, I'll be sharing my journey with yarn art.

Let me get started by saying, I am not an artsy person.  I can't draw or paint for the life of me.  Art class in school was more a time for doodles and fooling around, it was never my strong suit.  When I was in college my core group of girls and I dabbled in scrapbooking, and card making.  I loved doing all of that because I didn't have to draw my own stuff, I could just use stamps and stickers and such.  I spent a lot of money and bought a lot of the things.  But I just wasn't loving this craft.  It was expensive and took up a lot of space which I didn't quite have.  I still have a lot of the stuff and will use it for the card stock or the pretty paper designs, but not much more.  I actually gave a lot of it to my mom because she has more time.  If I have the space some day, maybe I can go back to it.

I ended up going an extra half year in college to do my student teaching...so I graduated in the spring and then went back in the fall the same year (the next school year).  I had a whole new crew of room mates as mine had all graduated and started work.  So clearly as you'll find out in the next sentence...we were huge partiers.  LOL...jk.  One Saturday morning...yes, this is what we did for fun...we went to Walmart and bought yarn and knitting needles.  Then spent the rest of the day learning the basic knit stitch.  One of the girls in this crew (remember, not my original crew, but my new crew) had been working on a cable scarf in a dark blue and after much discussion, the other 3 of us decided we wanted to learn too.  I bought two skeins that did NOT match together at all.  One was yellow cotton yarn and one was a light purple fluffy yarn.  If you know anything about the fiber content of yarn, these two definitely did not go together.  I'll have to see if I still have the yarn and post a pic. (UPDATE:  found the yarns)

 As you can see, the colors aren't too terrible together.

BUT, if you look closely at the thickness, they really don't go well together.  *lesson learned*

So I started doing a scarf using both of those colors.  Scarves are great ways to learn because it's mostly straight and can be done rather quickly.  Long story short, I never finished that scarf, it was too hideous.  LOL.  Because the purple is so much thicker, the purple stripes were wider than the yellow and the scarf wasn't really wearable.  Years later, I ended up ripping the whole thing out and saving the yarn for something else.  Keep in mind, this was over 10 years ago.  Yes, I've kept this yarn, maybe out of sentimentality, maybe because I can't bear to part with yarn I may someday use.  Whatever the reason, this is what started my love of all things yarn related. I don't remember what my next project was, but I knitted many baby blankets along the way and ended up teaching myself the many intricacies of knitting, including different stitches and non straight edges.  I'll continue sharing my journey in later posts.  Keep your eyes peeled and thanks for reading!


For more pictures of current projects, visit my Facebook page https://www.facebook.com/yarncraftsbycait/ or follow me on IG @cpell215.

Disney and an Update

Holy Cow!  I can't believe that it's been half a year since I posted an update.  LOL.  I said I wanted to blog more, and then I wait six months...woopps.

So as of last time, I was in fits of anxiety.  And was also having some health issues, lung wise.  I'm happy to say that those problems have resolved after several medication issues, changes, steroids, drug trials and a wonderful vacation!  It's very ironic because I was quite sick at the same time of year the year before.  Anxiety and lung issues, I mean.  October/November 2015 and 2016 I ended up on steroids...literally the same week both years, there must be something in the air or maybe in our heating systems (either at work or home) that sets me off.  After a very tumultuous year with our fertility issues, we decided to put that on hold (more on that later) and plan a vacation.  So we booked Disney!  Wahoooo!! Literally, my dream and I'm not even kidding.  Yes at 32 years old, I was like a kid in a candy store.  But I got quite sick about 3 weeks before.  We didn't even know whether I'd be able to go until 2 days before.  I work for a travel agency so I was able to book it all myself and get credit for it.  But the Thursday before we were leaving I was still coughing a TON and wasn't sure how I'd do on the plane.  So I finally spoke up to an agent in the office...all the while thinking to myself why didn't I get the cancel for any reason insurance.

BUT the good thing about Disney is that you can pretty much postpone at the last minute with no penalties.  So at worst, we would have simply postponed.  Same goes for Southwest plane tickets as long as you haven't "checked in" to your flight.  So I think overall, that gave me much more courage and ways to deal with the anxiety...finally voicing my concerns and talking them over.  I was pretty sure I'd be ok once we got down to the nice sunny Florida weather.  So I left work early Friday...did early voting, and got my nails done.  And I was feeling good, but I still (even to this day) have the phone number for Disney, just in case we had to postpone.  LOL.  I'll add some pics to the end of this post.

ALSO, and really the point of this post...at the time of my last post my sister had just told me she was pregnant.  It wasn't "Facebook Official" as they say so I couldn't really share it here.  Which, I think that led to some of my anxiety as well.  Lots of emotions were floating through my brain that I am not going to get into here.  My sister is very aware of my situation and extremely supportive...of which I am grateful.  I think she was afraid to tell me because she didn't want me to be upset or jealous.  And as anyone who's been through infertility knows, its hard.  It sucks a lot of times.  And its painful.  I was so sad for me, so sad for her and I just couldn't process a lot of that initially.  I still tell her that I feel awful that she couldn't be happier and that I couldn't be happier.  It's just such a delicate topic.  I know she understands and I know she didn't mean any harm.  I wish it didn't have to be this way.  I wish it wasn't such a delicate place.  I wish that she could have shouted on the rooftops or done some over the top announcement...but I can't predict how I would have reacted.  And I am grateful she didn't do that, but I wish she could have.

I am sure my reaction wasn't what she expected.  I said "oh, I pretty much knew."  LOL.  We've talked since then and of course I don't think I showed any jealousy.  I have told her a few times that I am sorry you couldn't be more excited.  I'm sorry I couldn't be more excited...but I am so thankful that she doesn't let that bother her.  That no matter what, she understands and will always support me.  She cares about me and my feelings and I am happy to say that jealousy didn't last long.  ;)  Of course, another beauty I get to love and cuddle and spoil.  I cannot contain my excitement at this point.  I want to meet this little nugget and I will be there as soon as I get that call.  It is such a blessing to be a cherished Auntie and I am honored to be one.  This baby will be the first on my side and although I have other nieces and nephews on my husbands side, it's different when its your own flesh and blood.  We grew up together and we will always have each other.  She's due any day and I am bouncing off the walls with excitement.  Last night after we went to bed, we heard my phone buzz across the room...so I leaped up to check, but it was just my mom...with no baby news.  bahahaha.

I'll post more updates on my health and emotions at a llater date.

Our resort. Dreamy and peaceful. And perfect weather, literally every day. It almost made me want to move to Florida. Then I remembered how humid it gets. 

We asked one person to take our pic at Epcot and she cut off the golf ball. *insert eye roll* It's a great picture but kind of missing the point. Haha. 

I shocked myself by doing Tower of Terror. Sat outside for 15 minutes trying to talk myself into it. LOL. 

This was at Universal, but holy cow. JUST like you'd imagine Hogwarts. Speechless. 

Everything was decorated for Christmas even though it was early November. So picturesque and so "Disney". Pure love.

Changing Seasons

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

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

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

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

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

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

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

Update/Goals for the blog

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

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

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

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

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

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

Help me find some patience

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

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

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

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


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

Struggling Today

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

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

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

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

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

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

New Job

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

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

Not the way we planned

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

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

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

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

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

Emotions of Infertility

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

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

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

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

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

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

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

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

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

Faith

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

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

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

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

Where to begin?

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

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

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

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

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

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

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

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

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

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

Pennies from Heaven

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

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

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

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

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

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

Changing Seasons

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

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

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

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

HOT, HOT, HOT

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

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

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

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

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.