Thursday, February 28, 2013

A Month Full Of Thankfulness & Gratefulness -February Style

Every month, I will be challenging myself to create a post of what I am thankful and grateful for in life.  This will allow me to reflect on all the POSITIVE that is happening in my life.  As we all know you get nowhere when you focus on the negatives in life.

I have seen a few people on blogger update on a weekly basis but I am going to be taking baby steps and doing this monthly.  As we all know, life is always BUSY but we need to slow down sometimes and take a step back and reflect on all the good that is around us. Everyone has POSITIVE things happening in life and we should be thankful we have the opportunity to be in these situations.  So here is my list for the month of February.

  • February is the “official” month for lovers as we celebrate Valentine ’s Day. This day to me is more than just a card holiday or a flower or chocolate day.  It is a reminder for all of us to acknowledge the true gift of being in love.  Maria has been nothing but a gift in my life.  Most/some people find love in their life but I think I have found my soul mate in life. I know as cliché as it sounds I really do believe Maria is my soul mate. As the song sung by Blake Shelton says “God Gave Me You”!  She has shown me nothing but unconditional love every day we have been together.  She has taught me the power of tackling everything in life as a couple and not anyone of us is in this as an individual.  Everything we do is as a COUPLE!! WE celebrate our success and WE feel the pain when the other is suffering.  I am so thankful to have my soul mate by my side every day I get out of bed.  Love you Maria!!  

  • If you haven’t read the post about Alayna hitting the 4 month mark here it is Alayna 4 months! Just thinking about our little miracle gives me goose bumps.  She is such a joy and blessing to have in our life.  I was just going over a timeline of “events” that took place in the last 2 years with a friend and I cannot believe some of this stuff that has happened. Yes, it has been a two year journey to get where we are today with our miracle baby!  But they say god only gives you what you can handle.  I guess this family can handle a couple knockout punches and still get back on our two feet. I still cannot believe Alayna is now over 4 months old.  Time is really really flying by.  I feel like she will be walking and eating with us at the dinner table really soon. 

  •  If any of you have read my blog in the past few months you would have read that Maria is still not 100% back to herself since the delivery.  That does still seem to be the case unfortunately.  But I am thankful to say that my wife is more determined than ever to get to the bottom of this. She has set a great example in never letting the ball drop when it has come to her health.  It does seem like there is a plan of action now.  Sometimes in life its all about making the baby steps count.  I know soon you will be feeling back to 100% Maria! 

  •  This month I had my CF clinic appointment.  Here is the post CF Clinic  To be honest, I was nervous for this appointment because I haven’t gone to my clinic since late October.  I usually like to get my butt in there every 8-10 weeks.  The reason I do this is to stay on top of any bugs that I am culturing.  This way if something new is in there and I have an exacerbation we can get started on an antibiotic right away.  Also, I only do a PFT test every other visit and I was due for a test this visit.  My last PFT was in August.  So we are talking almost 6 months since my last PFT test.  In August, I blew a FEV1 of 74 and an FEVC of 96.  I blew a FEV1 of 70 and an FEVC of 93 at my visit in February.  Basically, this showed me that my lungs have been mostly stable since August, Woooo hooo!! I have also been PA free since April and have not been on any inhaled antibiotics in about a year.  Another Wooo hooo!! My Dr. said keep doing what you are doing! Another Woo hoo!!  Oh and I am participating in a research study. So looks like I have a lot to be thankful for from my appointment!!

  • Lately, I have seen CF really taking a toll on some of my cysters and fibros.  They are getting sick needing a hospital stay or a PICC line at home.  I have also seen a few individuals being added to the transplant list. Ok so where is the thankfulness in this bullet point.  My thankfulness stems from my own gratefulness of my health.  I always knew I have been a pretty healthy CFer but sometimes I take it for granted how healthy I really am.  But everyday I get out of bed I put my game face on and attack that mucus in my lungs.  Mucus and me have a hate relationship all the way! 

  •  I am thankful for social media.  My reasons are endless on this though.  I have basically just started to use facebook.  Ok I know I must be one of the last ones to jump on the bandwagon but oh well.  In fact, I took Maria’s account over haha. She still uses it but its mostly all me on there.  I post a picture every day of little Alayna growing up in front of our eyes. I know I probably have overdone it on her pictures but oh well.  More of them will be coming to a facebook near you. 

  •   Staying on the topic of social media, it has allowed me to interact with some of you in the CF community and I am so grateful WE have a way to communicate.  Whether that is through blogger, facebook, or a forum.  I love the fact that I have access to make an impact on some of you directly by sharing our IVF story, talking about my love for HTS, sending a positive message, or just checking in to say hello.  But its not just that, I think I have also "helped" in my opinion some individuals on forums who are really struggling with this disease or accepting CF.  I am trying to put a positive spin as much as I can when talking about this disease.  

  • I am thankful for a month full of compliance and then some on my pills and airway treatments.  I have not missed a single treatment all month!! There are some nights I fall asleep and wake up to find myself not getting that treatment in but I get my butt out of bed and head to my vest even if its 1 am.  I know its not ideal but I know that in the back of my head its better to vest than not vest at all.  Just this past week,  I have added a new regiment to my treatment schedule.  I am very proud of this! As soon as I come home from work,  I take Alayna and I throw my vest on for 10 minutes when I get home.  I figured I better start doing this since I am slacking in the exercise department.  I have noticed in this short span of 4 days that my lungs are thanking me for that extra 10 minutes of vesting.  I also feel so much cleaner lung wise and this will motivate me to continue this trend.  I am averaging almost an hour a day hooked up to my little vest.  Woo hoo take that CF! In looking how long I have been hooked up to this little boom box it has been over 200 hours now! I finally got the new boom box vest but I am not sure the exact date I received the machine.  I replaced the old massive one that weighed like 50 pounds but I forgot to look how long I was hooked up to that machine.  I had big bertha for almost 10 years!! Oh well, I will continue to track the hourly number on my new machine to see how much time I am putting in kicking CF butt!

I just realized how long this list is…………and I forgot to even mention a few things that I am thankful for.  These items are the big ones though.  It looks like I may have to do this type of thankful post twice a month.  So take a minute to step back from your busy life and think of what you are thankful for.  I know that everyone has at least one thing they can be thankful for.  
4 months!! 
Reminds Me of Maria!!

Sunday, February 17, 2013

Alayna 4 Months Old Today!

It is so hard to believe that you are 4 months old today Alayna.  I still can remember that day on October 17 you met your mom and me for the first time.  That day was the best day of our life.  Just the other night, we were looking at your pictures and we are still shocked how far we have come to have you in our life.  You made all of our dreams come true and then some. 

Before I get into all the advances you have made in this past month, I am going to provide you with a story or more of a scare that you provided your mommy and daddy.  One day, I came home from work and was changing your diaper and I noticed these little bruises/marks on your left leg.  They were on you calf and lower thigh.  Your mommy and me both thought it was very odd to see these because you do not walk or crawl yet so we knew you weren’t bumping into something.  We kept debating what it could be on your leg and finally at 11 pm I called Dr. Steve.  Dr. Steve and I talked on the phone and I told him what the bruises looked like and he said to keep an eye on them.  He had a name for the bruises and called them petechiae.  It is basically unknown little bruises.   So since we had this name of the bruising mommy decided to Google it.  Google will provide you with every story out there good or bad.  But it seemed like every story we read had concern for unknown bruising on an infants one leg.  There were stories about blood disorders and even leukemia.  Basically, Google created a big social worry for me and your mommy. 

We even took you to the local Children’s Hospital at midnight.  Let me tell you Alayna, there was one of the biggest epidemics of influenza and RSV going around at this time.  We took you to the hospital anyway and we asked the nurse how many influenza cases and RSV cases were here and they said tons.  Mommy informed the nurse that daddy has CF and she suggested that we leave because the bruising wasn’t an immediate emergency.  We left the hospital and the following day you went to see Dr. Steve.  He again wasn’t concerned about the bruising and then mommy setup an appointment with the dermatologist.  The dermatologist looked at your leg and thought it wasn’t a concern either and was not an indication of a blood disorder.  So we continued to watch your left leg and the bruising was gone in a few days. 

A week went by and again daddy came home from work and changed your diaper and noticed bruising on your left leg.  We called Dr. Steve but he was out of town so mommy took you into his fill in doctor for the day.  He said it looked like nothing to worry about.  But as persistent as mommy was she setup another appointment with the dermatologist.  Mommy took you to the appointment and the dermatologist ordered blood work to give mommy and me a piece of mind.  The blood test came back and confirmed that your blood work was normal and no concern for a blood disorder or leukemia.  That was a big sigh of relief.  In fact, the bruising went away within a few days and has not returned.  We hope that it doesn’t come back either.  So one day when you read this Alayna, you will see that your mommy and daddy would do anything for you. 

We did some unofficial measuring of you today Alayna and you weigh about 16 pounds and are now over 25 inches long.  You are continuing to grow like the green giant.  I honestly have no idea where you are getting all this length from but it looks like you will be taller than mommy.  As far as your weight you feel like one solid baby.  I am so shocked that your mommy can provide you with all the nutrients you need to grow.  I think it is amazing that the human body can do this. 

You continue to advance and learn new skills Alayna.  You grip onto things like no other.  In fact, you just learned to hold on to a rattle.  You also love to put everything in that little mouth of yours.  I think that means some teeth will be coming in soon! Just the other day I was reading you a book and you decided to grab the book with both hands like you were going to read me the book.  Sometimes when daddy changes your diaper you decide to grab on to my face.  You will grab my chin, my nose, my ear, and even my short hair that I have.  You think it is funny to do this to me.  I love it so I let you pull me a part!

We have finally put you on your tummy this month Alayna! So far you seem to hate this a little less than usual but you still are not a big fan at all.  In fact your mommy has discovered your favorite toy.  It lights up and plays music and you love it.  You will follow it with your eyes and even move your head all around.  Mommy moves the toy from side to side so you move your body from side to side. This is pretty neat to see.  You are getting stronger and stronger little one.  

You have also discovered that you have a thumb this month.  Honestly, you would prefer sucking your thumb over a pacifier any day now.  It is so adorable to see you sucking away on your little thumb.  But lets hope once you are older you grow out of that habit.  A pacifier we can easily get rid of but not so much your little thumb. 
Alayna, I think we are going to be in trouble with you once you start to go to school.  Here is the reason why.  YOU LOVE TO TALK!! I think that is a big understatement of how much you love to talk.  You will babble on and on with both me and mommy.  It seems like you are having a conversation with us.  I do not think you understand anything we are asking you, but you seem to just carry on with whatever we are talking about with you.  It is so adorable to see you do this because you get a big smile on your face and you start running.  Yes, running I call it running because you will move your legs and arms like you are running.  I guess you are starting young to exercise!

Alayna, you are also becoming more observant. You understand that you have two dogs now. You will look at JJ and Mia and follow them in a room.  I know they understand that you exist as well because they like to lick your hands. This drives mommy crazy! I know you also recognize who your mommy and daddy are.  When I come home from work you love to look at me and follow me with your head around the room.  I will start talking to you and ask how your day was and you will smile and babble away as if you understand my questions!! This is one of my favorite parts of my day coming home to you and mommy!

Alayna you do something that reminds me of me your daddy.  You love to sleep! In fact, you love to sleep anywhere and you have no problem if its in our bed, your crib, your chair, your carseat, the stroller, or in the car.  But I think you and I both have a favorite spot to sleep and that is by your mommy (Maria she is to me).  As far as your sleep habits you love to stay up late and sleep in.  This sounds like your daddy.  If we wake you up before 10 am forget it you will be little miss oscar the grouch.  You will scream and cry your heart out.  But then you start to suck your thumb and you fall back to sleep. 

Well I cannot believe it has been 4 months that you have been with us. A third of a year you have been in our life.  You continue to make us happier than words could ever express.  When I tell people at work about you or anywhere I go I just say how AMAZING it truly is to experience your own child developing in front of your eyes.  I can still remember that day holding you for the first time and that is something I will never ever forget! 


Happy 4 Month Birthday To Alayna! 

Alayna little smirk! 

My what big feet you have Alayna! 

Thumb Sucker!

Alayna hiding away sucking her thumb.

Tummy time raising her head up! 

Alayna & Daddy Sleeping! 

Wednesday, February 13, 2013

Doctor Appointments..........CF Clinic & PFT!

Monday was a doctor filled day in our household.  Maria had an appointment in the morning which meant I was going to stay home with Alayna.  Maria’s appointment went well! She did receive some news, some advice, and a going forward plan of what has been bothering her since her c section.  Yes that is right she still has not been the same since giving birth to Alayna.   I hope that will be changing in the near future.  But Maria has been nothing less than a real trooper these last few months.  When I think about some of the things that she has been through in the last year I am lost for words. I know things will improve soon for her. 

As soon as Maria came home from her doctor appointment it was my turn to leave and make the journey to my CF clinic.  I always go with my entourage to the clinic but this time I did it without Maria.  My mom went with me this time! Thanks for coming to my appointment mom! It is nice to have people that care about your health in your life. 
We left my house at 2 pm and returned at 6 pm.  Like I said above, it was a journey and it always is going to clinic. In fact, 2 hours of this journey are spent in the car!  I knew that it was going to be a longer clinic day because I received a call in the morning from a researcher at my clinic.  He was asking if I would like to volunteer in a research study.  I said sure run it by me.  The first study they wanted me to have an MRI performed on my lungs which was going to last 45 minutes to look at lung damage/disease.  Apparently, they would like to use MRI’s vs. CT scans when looking at lung disease/damage in CF because an MRI does not use any radiation.  This sounded very interesting but I was unable to participate on a short notice because they wanted to do it today.  The researcher asked me if I was interested in any other study going on.  I said sure as long as I don’t need any needles or blood draws.  I know there are very few of this type out there.  But he said I do in fact have a study that has no blood draws well it is an optional blood draw.  He explained the study over the phone and I said ok I am in.  So here is the details of the study.  The study is basically looking at lung function and how we feel and to see if we feel sick if there is a change in our lung function.  There are also a bunch of questionnaires you fill out every time you come to clinic.  They ask things about your compliance with treatment and your mental state dealing with CF. I will also be doing a PFT every visit at clinic now for the study woo hoo. I love me some PFT’s.  
Just like any study there are two groups. The first group does not have the little handheld spirometer (peak flow meter) or what I call the at home PFT machine.  The second group has the little PFT machine at home.  You blow in the little machine two days a week twice a day.  I wanted to be in the second group so I could monitor my PFT at home but I was randomly selected for the first group.  It is ok because this group is important to.  When I go to clinic now I will have to answer all the questionnaires and have a date with the big PFT machine. Also, during the study if I ever feel sick and call my doctor or nurse the researcher will want to see me so I can fill out the questionnaires and have a PFT performed.  This study will last a year so I will be seen by the researcher another four times this year.

After I met with the researcher I had my PFT performed.  As I have said on my own blog and other blogs,  this test is a real mental challenge for me.  I usually feel better than what my results tell me.  I was anticipating this happening again but wasn't 100% sure.  I have not had a PFT since August.  I usually do not have one every visit for whatever reason but that will be changing this year as I am part of the research study.  In August, I blew a FEV1 of 74 and an FVC of 96.  These numbers I was happy with because it was right after I started using hypertonic saline for about 2 months.  

My first attempt I blew a lovely FEV1 of 67. Uh oh was my first thought.  Of course I was disappointed and I continued to have a few more attempts.  I was given a score of 70 for my FEV1 and a 93 for FVC.  So basically, there was almost no change from my appointment in August.  Of course I would have liked to see these numbers higher but it will give me more motivation next time I am at clinic.  I honestly feel that this PFT test is a lot about technique.  I always have problems with this because the respiratory tech always says I need to cut back and use the "H" sound instead of me straining my vocal chords.  Any suggestions out there on PFT technique would be appreciated?

I then met with my doctor.  He is great. I always love to see him and I take full advantage of my appointment by asking many questions.  My lungs were given the usual saying.  John you sound wonderful no crackling or anything like that. As for my weight I was stable since August.  I have no issues in the weight department.  I continued to tell him how much I love hypertonic saline and he recalls the first time I was at clinic post HTS and how much I loved it.  

I asked what was in my culture the last appointment and it was still the same. I have not cultured psuedomonias since last April.  Almost a year. Woo hoo!!! I have no staph either in my lungs.  Woo hoo.  I do have two bacteria invaders in there though.  Acromobacter alasocksadens spelling on that and another bug.  But no meds for me.  It has been almost a year since inhaled meds for me another Woo hoo!!!   He left me with the continue to keep doing what you are doing because you sound great and your PFT is fine.  

We also talked about the status of Vertex and how they are coming along with the hopeful miracle drug for many of us out there.  I guess they are about to begin a phase 3 study enrolling people at my clinic in May and starting the trial in June.  I am not eligible for this as the study is only open to double delta F508. I do have one copy of the F508 gene so if this miracle pill is promising it will benefit me.  So the key here is stay as healthy as possible until this magical pill comes to the market.  

So I left my clinic feeling pretty good about myself. I volunteered in a research study so hopefully I will benefit from this or someone will when the study is all said and done.  My PFT results were pretty much unchanged which is great.  The biggest thing for me is I have been feeling great these past few months. I honestly do not know the last time I really felt CF sick which is AWESOME! I count my blessings every day on this front and I am so thankful for the health that I do have.  

Alayna smiling away! She is always happy!!

Me and the PFT machine!! 

This is my makeshift mask for the hospital. Avoiding the germs! 

The little cupcake sucking her thumb. 

Saturday, February 9, 2013

Loving Someone and Dealing With CF.......My response!

I feel a lot of people in our community struggle with this fact.  WE have a disease that really can shorten our life but what happens when we find someone we love and they love us to? I know I wouldn't be half the man I am today without Maria in my life.   I wrote a response to a cyster looking for some advice on this situation. 

Here is her question:

I am for the first time in 22 years completely in love with someone. He's always there for me & supports me day in & day out. I am just still so afraid of being with him because I know I will die young & I don't want to put him through losing me. I've seen it happen too many times & I love him so much I don't want him to go through that. I need help with accepting the fact that someone loves me & wants to take care of me. Does anyone have any advice on how to not let CF ruin an amazing relationship. I always seem to let this stop me from being happy ):

Here is my response:


I am so glad that you have found someone that loves you for YOU. I cannot tell you how important it is to have a supportive spouse or bf/gf in this disease we have. This man in your life will love you unconditionally for you and not because of the disease we have. I know this first person as I have a very very supportive wife. She motivates me every single day I get out of bed. She is my rock in life. I am going to assume this man is your rock in your life as well???
You should accept this person in your life because he sees you for you as NAME and not CF. You have to tell yourself that CF does not define the person you are or the relationships that you will have in your life. CF is obviously a part of your life and you need to be surrounded by people who are positive influences on you and by people who want nothing but the best for you. I have to bet that he motivates you to put your best foot forward everyday you get out of bed?
NAME this is how I feel about life…………it is better to have love and lost then to have never have loved before. I think your man would agree with this statement as well. If everyone in our community thought about our shortened life expectancy than we would never have the dream of getting married and having a future family. There are so many people in our community that are married having children having careers etc. Just because we have a disease doesn’t’ mean that we will have a shortened life. Every day you get in a car or do anything in life there is always a risk of not being here. There could be a drunk driver on the road, you could fall down the stairs etc. The list goes on and on.
I know we will always think about CF in our relationships with our significant others because it is something we have to deal with everyday and our future spouses do as well. But having someone who loves you and cares so much about you in life is priceless. You have to accept this individual in your life because he is also in this journey with you. He wants to love you for who you are NAME and that has to be the greatest thing in the world. Well for me I know it is because I have this wonderful wife in my life who motivates me everyday. I hope this message has helped you!

Here is her response back to me........

Yeah he knew about it long before we dated. He knows how sick I am too. & that I am trying to get on the transplant list & he's still more supportive than anyone has ever been. That itself should say something. It's just so hard to look past it being this sick starting a new relationship.

Here is my last response..............

He seems like the real deal already NAME!! If truly cares that much about you you should allow him to. I assume he motivates you to put your best foot forward every day? These are the people you need in your life positive influences.

If you are to need a transplant you need people like him in your corner. He will motivate you to keep fighting through it all. I have seen others in our community who have a positive spouse/bf or gf during transplant and they have said they couldn't have done it without them by their side. Plus don't you want to see his handsome face once you wake up from the transplant surgery?? I know I would with my now wife!!

I think you can see where I am going with this. You should accept this relationship in your life because ultimately it will make you a stronger person.

Stay strong and keep fighting!!

Tuesday, February 5, 2013

It Was A Special Day.......A Year Ago In Our House!

Today, marks a very very special day in our household! Any guesses out there? For those of you who I have already told the significance of this day, erase what I said in your mind if you want to play a game.   Ok, I will give you a few hints.  See if anyone can guess what the significance of this day is. If you do I will be very impressed.


1.)    The Super Bowl was played this past year on this date.
2.)    This day is also my fathers in law birthday. HAPPY BIRTHDAY!!!
3.)    It was a beautiful day where we live. Even though it was cold out, the sun was shining very bright.
4.)    Maria and I both could not sleep the night before February 5, 2012
5.)    We drove our car that day that had the windshield that was struck by a rock on our way to this place a few days before.
6.)    In the car, before we got out we listened to a song by One Republic.

So does anyone have an answer for these clues and hints?  If so leave me a comment.  I guess you have to close your eyes and scroll down before reading the answer.  

I basically provided everyone with very bogus clues and hints that will not lead you to the correct answer but maybe just maybe you picked up something from one of the clues.  

So here are MORE hints/clues.
1.)    The Super Bowl was between the………. New York Giants vs. New England Patriots.  I was watching this game in the comfort of my home rooting for Tom Brady and the Pats while Maria was relaxing. The New York Giants won the game.
2.)    My father in law had his birthday that day.  I am not going to disclose his age over the Internet.  I guess that wouldn’t be right for me to do.  But I know he had a great day!
3.)    We live in an area that experiences all four seasons.  February 5, 2012 is considered middle of winter.  I can recall it was slightly warmer than usual and the sun was shining.  During the winter, in our neck of the woods the sun is a rarity. So it was a very pleasant surprise in the middle of winter to see the sun and the temperature was warmer than usual.  Also, I do believe there was snow on the ground!
4.)    Maria and I both couldn’t sleep the night before February 5, 2012 because we were so full of emotions.  We were excited, nervous, scared, overjoyed, the list goes on and on. In fact, I can recall Maria telling me she felt sick to her stomach because of all the emotion she was feeling. 
5.)    Well a few days before February 5, 2012, we had a nice big rock strike our windshield on the drivers side. This must have been a sign of something that was coming in our future very soon.  More on this in a minute.
6.)    Maria and I were jamming out to One Republic and we made sure to listen to a certain song……….Good Life!! Because it truly is a good life that we have.

If you still are reading this and have no idea what the answer is I will no longer withhold the answer anymore.  Sorry, I wanted to drag this out as long as I could.  Looks like I have done just that. 

On February 5, 2012 our little miracle Alayna was implanted in Maria’s uterus.  It was a nerve wrecking day to say the least at least in the morning that is.  So for anyone who is not familiar with our IVF story here it is (IVF Miracle).  We arrived at the fertility clinic unsure if we were even going to have any embryos to implant because we were awaiting the results from RGI on the PGD of the embryos.  We were so blessed to find one of the doctors coming out of the clinic and we had to ask Dr. P "Do we have any embryos to implant?"  Dr. P said "Yes, you do in fact we found out last night that you had two good embryos to implant!" We were so excited and blessed beyond belief.  Maria and I both said why didn't they call us the night before.  Honestly, we would have actually slept 100 times better. 

As soon as we entered the clinic office we both had the biggest grin on our face.  We couldn't wait to get the scrubs on and proceed with the implantation of the embryos.  Dr. G met with us and he was so excited to put these little miracles into our life.  Once we had all of our scrubs on we proceeded to the surgical room and I was sitting right next to Maria holding her hand.  They then showed us on the big screen the two embryos and it was incredible to see this firsthand.  Only a select few individuals will ever see their baby like this.  So they loaded up the catheter with the two embryos and they inserted the catheter in Maria's uterus and pushed the two little miracles out of the catheter.  We were able to see all of this on the big screen tv. Talk about AMAZING!!!  This experience was something we will never ever forget.  We both were emotional that day.  I knew in my heart that this round of IVF was going to be successful.  I guess that little intuition was right.  This was one of the greatest days as husband and wife.  It is something we will cherish for the rest of our life.   Alayna you are truly a miracle baby!!!

This is the windshield that took a blow from a rock from the highway.  This occurred the day of the egg retrieval.  I think this windshield will never be replaced FOREVER. In fact once the car has seen its glory I think we may have to cut this piece of glass out to save FOREVER! It signifies ALAYNA!!

 This is the ultrasound to confirm that WE are pregnant!!!

Our little miracle Alayna 3.5 months old! Best smile ever! Mom and Dad Love You!

Saturday, February 2, 2013

A lil Update and My Response To A Young Fibro!!

So I have been MIA lately.  Things are always crazy but life is great.  I wouldn't change my life for anything.  I am doing well health wise.  Maria is doing well and our little princess Alayna is doing just fine.  Minus our earlier journey this week with Alayna.  I will post about that soon. 

So what have I been doing with all my social media time???  Well I have found a site that I really really like. It is very similar to Cystic Life.  Thanks Ronnie for pioneering this site its a great place for all of us.  But I have been on this site called CF Connect.  I LOVE it.  As some of you may recall my new years thing was to help and give back to as many people as I could.  I have found that this site is allowing me to do just that.  I LOVE to give hopefully some good advice to fibros and cysters in our community.  My goal is to make a difference in people's lives so hopefully I have done that with maybe some of you on here as well!  Here is a response I have left a young Fibro.  Please let me know what you think of it!!!

Here is his question..............
Hey I just joined this sight and I feel really lonely right now with my life style from cf. I was wondering what other people do to feel like u have a regular life. I'm 15 and I freshman in high school

Here is my first response..................

Welcome to this site! You will find many individuals like yourself on here. I hope you can make some really cool new friends on here.

But this disease can be scary and lonely. When you find places like this it really helps deal with this because you can find people who can relate to you.

I am a fibro myself 27 years old and I have been in your shoes before. We all can have a “normal” life with this disease. I know we have to do our treatments, go to the doctor often, maybe have a stay in the hospital etc. but that’s what makes us CFers one of the strongest people. WE have dedication and determination everyday we get out of bed (well at least I do). I want you to find something in your life that will motivate you and get you focused everyday. That can be your friends, your family, a girlfriend, or YOUR FUTURE!!!! So every time you get out of bed or go to the doctor or exercise focus on these things. I do this everyday I get out of bed. It really helps me get motivated and stay focused on what I need to do to be not just around for my family but HERE for my family.

You are about to embark on a really exciting and challenging time in your life. Being in high school you will be challenged to stay focused on your health. I want you to put your health first before anything else. The reason I am saying this NAMEis because the decisions you are about to make will effect your future for years to come. That is why I want you to find something or someone that will motivate you to no end.

I understand there will be times you will miss your treatment or not feel your best on certain days. We are all human and I expect this to occur for you. But it is at times like this how we react to these obstacles of missing a treatment or not feeling our best health wise. If you miss a treatment make sure you make it up as soon as you can. Do not put yourself in the hole by missing one and missing another my friend. The only way to stay on top of this disease is to stay focused and one step ahead all the time.

Sorry this is such a long reply NAME but I wanted to share with you my thoughts and my own experience. Keep a positive attitude and KEEP FIGHTING. I know you will have many dreams come true in your life.

I have a blog detailing my life living my dreams with CF. I hope you will find something to inspire you in there. If you ever want to chat let me know.

His Response back to me...................
Ya I know thanks it just I can't find anything to motivate me
Here is my second response..................
I want to understand a little more about you what you may be experiencing as far as what is holding you back in life. Please send me a message on here. I will friend you on this site so we can chat. But until then I have some tips for you. I hope that these things will help you NAME!
I am going to reminisce when I was a 15 year old man like you!! So I found the love of my life at an early age in my wife at around this age. I had built in motivation already with her but you do not have to have a girlfriend to motivate you to get yourself out of bed and put your best foot forward. Here is my advice for you.
As a young man myself back at the age of 15, I wanted to stay as healthy as possible because I had big DREAMS and aspirations before I met the love of my life. I knew I wanted to attend college, find a career, marry the woman of my dreams, and start a family one day. I know at such a young age these thoughts may not be occurring for you but let me tell you this, if they are these are the biggest motivators you can have. Also, if you have not had these DREAMS yet I know you will someday. So this will set goals for your future years and you have to put your health first in order to achieve any of these.
If you are involved in school activities this will also motivate you to put your best foot forward. For instance, you might want to play on your high school football team, basketball team, soccer team, or even what they called back in my day parks and rec sports (same thing but not on the high school team). In order to be a part of any of these teams you have to stay motivated to be as healthy as you can. Plus being a part of team sport or activity (maybe choir, speech and debate, band, orchestra etc.) it will motivate you everyday to get your treatment in and stay as healthy as possible. You will not want to miss out on being a part of your friends if you have skipped treatments and find your self in the hospital. So being a part of any these activities will motivate you because you have a sense of belonging in your life a reason to fight everyday to put your best foot forward. These times in high school only happen once in your life so make the most of it and get involved and make some friendships that will last a life time.
Also I mentioned friendships. I think that friends can and should motivate you to stay healthy. If you have never talked about CF with any of your friends this may be a time to think about it. I know you may think well they may think differently of me but let me tell you a lot of people who are truly your friends will motivate you to put your best foot forward. So I want you to discuss CF with someone you can trust this should be your best friend or someone you can trust maybe a school guidance counselor. They will most likely ask you about this disease and how it impacts you NAME. This will allow you to have someone to talk with beside your family members of what your life is like living with this. I know you will find someone who can understand you in person. I hope they will motivate you everyday to put your best foot forward.
So I have given you some food for thought. Ultimately its up to you to find a DREAM a motivator in your life to make you feel like life is worth living. I know there are plenty out there. Just reach down deep and find it. I am living proof of this NAME that DREAMS do come true.
I hope that this has helped you somewhat. Please let me know NAME. Message me anytime I love to talk about this.

So I hope I have helped this young man in some way!!!

We have exchanged some messages and it seems like I am helping this young man :)

I hope you are all having a great weekend!! I promise I will be back on here again soon posting!