Wednesday, July 26, 2017

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 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!

Saturday, April 15, 2017

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 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 or follow me on IG @cpell215.

Wednesday, April 5, 2017

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 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 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.

Thursday, October 13, 2016

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 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 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!

Friday, September 30, 2016

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 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!

Monday, May 2, 2016

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.

Monday, March 28, 2016

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.