A lot has happened in our CF Wives group the past few month, full of blessings and a few in sadness. When anyone asks usually they want the good first, so I will follow in that tradition. A CF husband, Nate, got the call he had been waiting for and for the first time in our group that I know of, he didn’t even end up with a dry run – he got pretty pink lungs the first time! He was out of the hospital in less than 3 weeks and is already walking and breaking in his new lungs. What a blessing! You can follow his journey here – http://Nateredman.tumblr.com.
In moving on to the bit of sadness, a fellow wife battled breast cancer since diagnosis in April 2012, just a few short months after losing her husband to Cystic Fibrosis. Many difficult regiments of treatments in between vacations with friends and family to enjoy her final days, it just became too much. On the first of August she passed peacefully in the arms of friends and was joined at heaven’s gates by her husband. We never know the cards that will be dealt our way, but there is some solace in knowing she has joined her true love.
I found it extremely difficult to find words of comfort in her final week but pushed through to share the impact she had on her fellow CF Wives. I was amazed to see the response of other wives outside of our group saying Lisa was the first CF Wife they met and how she helped them through the years. Some people are definitely brought into your life for a reason and He had big plans for Lisa to touch the lives of many. May you rest in eternal piece with your soulmate, Lisa. You will forever be missed. To read more about Lisa’s life visit http://www.yakima-herald.com/obits/2012/08/05/lisa-marie-worthington-brown
Breathe easy my friends…
Today may have started out rough but it sure ended up being a great one. I forgot my work laptop at the office last night so I had to drive 45 minutes round trip to pick it up. Shortly after my husband left for work, I noticed his ID badge was sitting on the counter so he had to come back and get it. Hot messes! So on to the good stuff…
Two weeks ago, a fellow CF Wife whose husband is #1 on the transplant list waiting for a new pair of lungs, had a dry run. A dry run is essentially a heart breaker. You spend so long in declining health and pain praying every day and night for a second chance at a better life. Naturally, when you get ‘the call’ it literally changes everything. Unfortunately that call for Darren ended with a poor pair of lungs. But late last night there was another call, one that had positive news. They rushed to the Baylor University Medical Center and this time the lungs were pink and healthy, meaning time for transplant!
The surgery itself can take anywhere from 6 – 12 hours and we are still waiting on news. I’m sure Dana is just sitting with her husband, making sure she’s as informed by the doctors and praying. I can’t wait to hear about his recovery and I just kindly ask that you lift up your prayers for my fellow CF Wife and her brave, fighting husband. He spent 49 years with a nasty pair of lungs so he truly deserves this fresh new pair for 49 more years! :0)
I leave you with a picture that came across Facebook and is so poignant that is should speak for itself. Please sign up to make a difference today and be sure to spread the word. There is no reason to be afraid of being an organ donor. Be informed!
There’s power in prayer… praying for Darren to finally breathe easy!
May was Cystic Fibrosis Awareness Month and a fellow CF Wife came across this fantastic page on Facebook. A lovely military wife makes inspiring, heart warming and bracelets to honor loved ones. She also makes watches, lanyards, camera straps and pet items with virtually any saying, color combinations and variety of charms too. We were inspired by a purple bracelet with a mini dog tag saying “I love someone with Cystic Fibrosis”.
I know purple is the key color for CF, however I’m more of a black and green person so I opted for something different. Megan came up with the saying “Cystic Fibrosis may have his cells but I have his heart” with the purple awareness ribbon. Then for an everyday bracelet, I wanted something in a green paracord because I saw a 4 leaf clover that looks just like my tattoo. Michael is truly my lucky charm so it worked out really well, plus she was able to put our anniversary on the other side. I’m actually typing this with it on my right wrist and it brings a smile to my face.
A big thank you to Megan for helping us raise awareness in the month of May and forever more to the CF Wives. Awareness is truly a cure for ignorance so this is a great avenue. Now to think of what to get next… I think my auntie needs a bracelet to honor my uncle’s passing from ALS! Please visit Megan’s site and see for yourself. https://www.facebook.com/UnderConstructionSurvivalBracelets
Breathe easy my friends!
What a jam-packed weekend full of celebration and filled with lasting memories, both funny and heart melting. Great friends of ours are getting married in 3 weeks and I was fortune enough to partake in the bachelorette festivities… festivities-a-plenty! Then today was family time to celebrate the fact that two years ago today, our beautiful niece, forever known as our little punkin pie, came into this world (a few days late but definitely worth it). After all this fun it was a scenic 2 hour ride back home only to greet the kitters who clearly missed their mama, run to put everything away, get the garbage out, throw in a load of laundry and prepare hard-boiled eggs for my husband’s salad while he taps away at the keys to run his weekend reports to prepare for the Manic Monday.
I must rewind to capture all the amazing events, personal “firsts” and adventure. To start the bachelorette madness off right, we met up at the local shooting range… yes REAL guns! Now I do claim to be a sharp shooter from my childhood use of BB guns aiming for soda cans in the trees both righty and lefty (ambidextrous, yes), however my dad and older brother are both marksman by trade – hunters and recently my brother made the SWAT squad as a sniper. Sharp shooting clearly runs through our veins, even my mom said that she has shot before and impressed the instructors. From the first shot mere millimeters away from the bullseye on the target’s head in control of a 22, to the last few shots using 45 caliber bullets, it was pure adrenaline, control and amazement of my marksmanship.
One of the shooting range workers who sparked up conversation with my friend and I as we were contemplating the recoil of shotguns, offered for us to shoot his own personal gun. We jumped to the chance and I clearly wasn’t watching all to well considering the bullets were about 4 times the radius of the previous bullets. After the riveting shot right in the target’s chest, the shell smacked me in the forehead! If you haven’t tried out a shooting range, I highly recommend it. Don’t be afraid of guns because the key is being in control and not letting it control you. Not only was my mom and dad highly impressed, the look on my brother’s face as I showed him my two targets was one of hidden pride and according to my dad, a bit of jealousy!
After the shooting, we headed downtown to a swanky hotel to get ready for our night on the town. Lots of laughs with the girls was just what I needed. The move out of state has been a difficult transition, more so to our social calendar. We had an awesome Greek buffet and dry wine (not my fav but at least there was white) filled with salad, a platter of hummus (so much better than the store bought plastic flavored mess), plenty of olives, feta cheese, chicken and lamb open gyros, followed by a rich tiramisu. It’s safe to say over 2 hours we ate ourselves into a semi-food coma, but it was well worth the enriching experience. A short stint back at the hotel, we got a mini bus from the restaurant to take us to a club with our names on the list for $2 drinks. It was only 10:30 so there weren’t many people out, but I was ready for bed! I only made it another hour and knew that my husband needed to get rest for our busy Sunday so we bid adieu until the wedding!!!!
Sunday morning brought on birthday cake baking and decorating with my mom, a haircut and a little shopping, before we celebrated Miss Kenadee’s birthday. As soon as we walked in the living room and she saw us my heart had already melted. Hugs and kisses later, I had to apply my Mango Burt’s Bee’s chapstick and of course share with my little diva. Her independence has truly soared over the past few months so once she sees the stick it’s all about having some, holding it and applying it herself. When one of her 4 (yes, it’s true) great grandmas came by to say hi she softly grabbed my arm and said to her “this is Kiki.” Heart melted!
She had to go down her slide a few times, make sure no bugs were by her and even showed Uncle Bud her garden aka gawden, followed by a mini photoshoot with me! She’s a ham when it comes to our iPhones – kids and technology are quite the crazy combination these days! I was chewing gum and she asked for some but when I said no, sorry honey you can’t she promptly replied “I can when I’m older.” And she’s only two!!! We had a dance party in the basement and “Glad you Came” by The Wanted came on right away and she got very excited because “this is my song!” I was too excited to enjoy dinner because I really wanted to see her reaction to her present and garden birthday cake that was fast approaching. Uncle Bud brought over the Little Tikes Garden Wheelbarrow with flowers and she went straight for it “Ooooohh!” and proceeded to play with it even after her mom tried to reign her in to the other boxes of toys. I also wanted to make sure she had her own mango chapstick that stemmed her shouting “Mango!”
It’s been a wonderful weekend with our little sunshine. Until next time, breathe easy my friends!
I apologize for my absence the past 2 months, however it’s with great pleasure that I can look back at all the milestones that have happened. Where do I begin? Surely, we can start off with a quick update on me and then get into the good stuff. I’m officially down 32 pounds and have remained such for the past month. I’ve got a few pounds left till I’m more satisfied but I’m amazed at how I feel… so accomplished! Now to the good stuff!
Let me start by telling you February was a good month! I know countless people who are due this November, be it family, friends and a few CF wives too. I will admit it stung a little bit at first- the people who would vent to me about their frustrations in trying to start a family were soon pregnant, however amazingly enough I learned to take it more as a good luck charm. My sister-in-law is due with her 2nd on the 7th, dear friends from my college years are due with their first the following day and my best friend, whom I have been given the great honor of being Godmother to “puffin” as she so aptly named baby, is due the 15th. I don’t know the specifics of due dates on my fellow CF wives but oh I am so happy for them. One is even pregnant with twins… oh la la!
These recent developments have actually calmed my need to begin a mom ASAP. Something clicked after all the appointments and investigation – we need to enjoy our life and soak it up while we have the chance. It’s refreshing and I don’t feel guilty buying new music, movies or books now!
My job has definitely been keeping me busy, as I continue to learn the client services side of marketing, and the demanding schedule of hockey playoffs (courtesy of sponsoring Madison Square Garden). I’ve been fortunate enough to be able to also help my sister-in-law on the side to set up her new at-home-salon. We are so proud of her for making this step and the progress looks amazing, with her marketing materials to match! In respect to my amazing husband, he has flourished in his role, managing three demanding desks (categories) in the world of retail. He came home yesterday to announce that he had been requested by the Group VP to move over to a new, larger desk – candy. This move will not only allow him to learn the grocery side of the business, but take on more responsibility and increased exposure. I know he’s ready, willing and able to rock this new desk… but I’ll surely be staying clear of all the free candy!
In addition to creating business materials for my sister-in-law, I’ve branched out to help others with my design work. I revamped my high school logo to be featured on banners throughout the new addition and all elements going forward. It’s nice to leave a legacy! Also, I really have gone crazy in tapping into my crafty side. My Cricut machine has remanded dormant since I got it for Christmas some years ago. I recently became enthralled with the opportunities and expanded my cartridges, accessories and supplies to start putting it to good use. I created vinyl wall sayings for my in-laws, door numbers for my sister-in-law, and HEMI outdoor vinyl quality for my dad to place on his truck. Men!
One of my coworkers, Lauren, who is more like a little sister, got married on May 19th. After discussions of her wedding planning and how everything was wrapping up, she admitted they did not have any toasting glasses. I was going to change that! Her wedding colors were blue and green so thankfully I had green vinyl on hand and searched for nice champagne flutes. I had seen a project when logging into my Circut Craft Room about putting vinyl to make your own champagne toasting glasses and I was excited. I think they turned out great and I know how touched she was to have them. Here they are!
On a cold, rainy Thursday in April, I had the great pleasure of attending the first annual CF Milwaukee’s Finest event. We honored 8 young professionals who dedicated the prior 6 weeks to learning more about Cystic Fibrosis and raise funds to help support finding a cure. One of those honorees is actually our great friend and fraternity brother, Rick. He actually worked with the CF Directors to start the event and beyond being proud of him, his support and involvement with the CF Foundation truly touches our heart. Above celebrating the accomplishments of the 8 honorees, I had been honored to have been asked to speak for the attendees and give them insight from a CF Wife. My words came easier thanks to my preparation and it felt so nice sharing our story and my perspective, one that not many put into consideration. I got a very sweet note from the CF Director who organized the event and it said that a CF mom came up to her to thank her for offering the new perspective. I was touched and besides, now I’m more than just a sidekick to my famous husband!
In other news, I ask that you please keep my fellow CF Wives and their husbands in your prayers. I was able to connect with another wife last week and invited her to our Facebook group, and unfortunately 3 short days later her husband passed away. I know having gotten in touch with her and introducing her to the immeasurable support of the fellow wives is a gift from God, but it hurts my heart to have her go through this so soon. There are also wives who are patiently waiting for pink, healthy lungs to give their husband’s a second chance at life and finally to breathe easy. This week a few also moved up the list and were also just recently listed. CF is a crazy disease. It’s so different from husband to husband but the one thing I’ve learned is to keep an open mind and open heart.
I beg of you to spread awareness and sign up to be an organ donor. You don’t take your organs with you to heaven and we NEED them down here.
Until next time, breathe easy my friends!
I don’t believe I mentioned it before, but I started Nutrisystem in January to get back to healthy. Today I weighted in at 11 weeks for a total weight loss of 25 pounds! Not only is that my favorite number, this is a significant milestone in something I didn’t think was achievable. I’ll leave it short and sweet to exude the happiness and pride I have felt all day. Happy St. Patty’s Day!
I can’t believe there are only 9 days left in February, which marks 2 months since my husband’s cyst removal or 1 1/2 months of waking up every morning and helping him shower and prepare his wound for the day. Clearly I love this man because not only was I extremely scared about doing something wrong, for fear of infection or causing him pain, but to maintain it every single day and see him starting to heal has been pretty rewarding. Keep in mind he has a gap in his butt cheek that did not start off pretty or smelling the best, but as he’s said multiple times – in sickness and in health! I apologize if a disturbing mental picture came to fruition after that brief description, but I can guarantee it’s far worse than what your mind conjured up.
Besides taking care of him, our days have consisted of working ridiculous hours every day and on the weekends to keep up with the grueling demands of our careers. I can say that thankfully I’ve been able to sleep a lot better these past few weeks, minus the few unsettling dreams about work or budgets. I can proudly say last week marked a monumental change in our family and sleep patterns. We finally bit the bullet and bought automatic feeders for our cats, which managed to keep Simba at bay until 6am instead of the usual 2/3 am! Now if only we could erase the monster I created formally known as Nala. I’ve been a loyal customer of TRESemme hairspray (the only brand that can keep my hair where it’s supposed to be!) for years now, and randomly filled the cap with water because she loves to drink water from our sink. Now her habit is to chase us into the bathroom, sit in the tub and squack at the faucet or even us until we play with her. What’s even worse is the fact that she refuses to let me sleep in on the weekend. She’s so determined to get us to play that she jumps in our bedroom window and paws at the wooden blinds, making an irritable sound only to drive her misophonic mother nuts! At least my husband is sleeping well through all of the chaos from our furry babies!
Speaking of babies, I know I can speak on behalf of a few other CF Wives when I say how defeated we feel these past few weeks. Friend after friend continues to post pictures of sonograms, their growing belly, nursery designs, baby shower gifts and announcing their new addition. It’s such a juxtapose because on one hand you are excited for their blessing, but you can’t help but feel some level of resentment considering the cards we’ve been dealt. I realize I never wrote about our appointment mid-January to the IVF specialist because it’s taken some time to recover from the sticker shock to create our family. Great news is I have “amazing ovaries,” however there are still no guarantees, especially when it comes to raising $20,000. Yes, you read that right, twenty-thousand dollars, and that all could be for naut. We have been praying that after my husband endures a painful $5,000 procedure , that there will be enough viable sperm to move forward.
Believe me, I’ve done extensive research and was having a one-on-one conversation with the IVF doctor to gauge our opportunities, or whatever was left of them. We would both feel more comfortable meeting with the top Urologist who specializes in male fertility to see if he can run any preliminary tests before we continue with the mental, physical, emotional and monetarily draining process known as in vitro fertilization. It’s utterly disappointing to now live in a fertility mandated state but realize that our companies do not cover any procedures. I’m at a crossroads of what we can do. Buying lottery tickets and praying for a miracle seems a bit far fetched, but at this point I will continue to stay as strong as I can possibly can. Would it make sense to find a job that offers coverage so we can start a family before going deeper in debt? Do we apply for numerous grants at the chance we can tug at heartstrings for assistance? So many questions and only time can tell what will be our best bet.
I yearn to be a mom and give my husband the once in and lifetime chance to be a dad. For now, I will live vicariously through those around me and enjoy our beautiful and funny nieces. I still might be pouty as I’m preparing shower gifts, upset at the numerous pictures on Facebook, jealous of all the cute ideas as they pop up on my pinterest feed, or get angry at Christina on Grey’s Anatomy for hating the idea of being a mom as she aborted Owen’s baby, but that’s only because I’m human. Maybe there’s comfort in that others yearn to find their soulmate, love of their life and best friend, while I sit here next to mine. Unconditional love is a beautiful thing and I know we will soon be able to feel that for our unborn child. I pray whatever you are yearning for as you read this comes your way as well, providing it’s legal and doesn’t harm others!
I can only imagine how many people are sitting pre-cocktail in their NYE garb reflecting on the experiences that they encountered and perhaps endured throughout 2011. On the other hand, I believe a majority already have consumed a few totties to say peace out 2011! It’s been an interesting year full of challenges for many, including job, economic, health and happiness, but I am happy to look back with a positive view and forward with an inspiring and optimistic outlook.
Halfway through 2011, a big career opportunity moved us to another state and it was quite a change. Since my last post weeks ago (my apologies), I’m blessed to say that my wait for a new job may have been long, but was definitely worth it. I’ve been immersed in a new dynamic culture and working on a great team, under two wonderfully friendly, inspiring and welcoming women, something I never thought would be possible. It’s a different role that I’m used to and I’m still getting acclimated to the processes, procedures and nomenclature but I know 2012 will bring renewed confidence and significant experience in my portfolio.
I’m so thankful to be relaxing with my husband next to me, laying on the couch recovering from a cyst removal surgery he had on the 20th. The experience made me nervous and the sub-par treatment and lack of competency from the hospital staff has exhausted me to the point of no return. I need to pen a letter to the hospital administration to not only help future patients with Cystic Fibrosis and Diabetes, but express our displeasure with how things were handled. Add that to my to-do list!
In the meantime, I have been playing the role of the best wife in the world, tending to his every need and helping take care of his large wound area. Thank God for home health care because his wound was far larger than we both anticipated and I couldn’t stomach it the first day. With the additional care provided by Lu’s, he is healing rather nicely and ready to get back into the world!
Another wish for a healthy new year is extended to my amazing mom, who really needs to have additional surgery on her shoulder in hopes of regaining normal function in terms of rotation and strength. I pray that she soon can be free from the constraints of pain, seeing as it’s stemmed from her back, neck, shoulder, arthritis, fibromyalgia, TMJ, migraines and a new condition that starts with a D too! No wonder I was attracted to my husband, considering a plethora of conditions were a normal part of my childhood!
Today we just sent an appointment request to the fertility clinic we’ve been referred to by quite a few people. I’m very excited to start looking into starting our family, or I should say expanding beyond our furry babies! I know there will be a lot of appointments, tests, waiting and costs associated with the process but we are both very excited at the prospect of raising a little one, or two or three! :0)
I leave you with one last wish for the new year. May you enjoy a healthy, happy and prosperous new year, while doing what you can to help others. If there’s one thing I’ve learned from my wonderful husband, it’s the need for extending your hand to those who need it. Please sign up to be an organ donor to know you can help save lives.
I can happily say that I’ve been offered a job and joyfully accepted it immediately… it’s about time, right?! To top it off, it’s the one that I really felt was the right fit for me both personally and professionally. I start after Thanksgiving so it’s definitely something to be thankful for. I’m ready to jump back in and be creatively driven to develop captivating and enticing in-store promotions for drug stores. Plus, I’ve got over 5 years experience from the corporate marketing side and can’t wait to try my hand at the agency side. It will truly be an exciting learning and growth opportunity, not to mention the ability to work from home three days a week. SCORE!
Amidst all the chaotic interviews and preparation, I’ve spent quite a bit of time preparing for my husband’s upcoming surgery. Due to having CF and diabetes there’s a lot of documentation, consultations, pre-op procedures and dealing with appropriate referrals and work approval. I won’t go into specific details on his procedure but I will preface it in saying it’s been quite a pain in the butt! haha
Until next time… breathe easy!
Yesterday I made plans that will never come to fruition. We would be in town for a friend’s wedding so we wanted to stop by and see my uncle for possibly the last time. Today our plans fell through, as our family had to say goodbye to this great man. When usually I can spin words to describe my thoughts and feelings, I’m truly having a hard time putting it into words right now. Although it is terribly hard to finally say goodbye, there is solace in the fact that he no longer is suffering. My Godfather, whom I mentioned before, suffered from ALS for far too long.
For those who are unfamiliar, ALS is also known as Lou Gerhig’s Disease, a famous baseball player. This disease is unlike others in that your muscle function decreases and ultimately deteriorates to the point that you become paralyzed in your form. The classic sign of early diagnosis is the slurring and slowness of speech, similar to that of a stroke. As ALS continues to attack the body, you soon become trapped and extremely limited in movement and speech. There are no warning signs of what muscle function would be next or how long until you would be completely immobilized.
To put it into perspective, my uncle was able to dance in our Generation Dance at my wedding last September and confined to his motorized scooter in May, taking his baby girl down the aisle at her wedding. A lot can happen in a few short years, months, days and moments. I wish I could elaborate more about this fantastic man but I am completely numb as I try to write.
I know you are in a better place Uncle Harpo – looking over us all as you walk, holding hands with Jesus and telling him about your journey and all of your loved ones. Making up for lost time with the ability to be yourself again, this time with beautiful wings. You are already missed greatly and will always remain in our hearts and our thoughts. We will continue to support finding a cure for ALS in your memory. I love you. 12.25.51 – 10.19.11