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
Insurance: the act, system, or business of insuring property, life, one’s person, etc., against loss or harm arising in specified contingencies, as fire, accident, death, disablement, or the like, in consideration of a payment proportionate to the risk involved.
Now after that dull mumbo jumbo let’s get down to business. When you get a full-time job you qualify for insurance and hopefully a great policy from a company that cares about their employees. When we moved to another state we anticipated premiums to be increased due to the cost of living. After initial research we found out that the state (one of 15) mandates assistance with infertility treatments. Yay, right? Well, I guess it only matters if the company follows the law. After further review of the company’s explanation of benefits, it appears that absolutely no coverage exists. I’m not sure where the loop hole presented itself for such a large company, but they established insurance out of New York. I posed the question, after of course stressing myself out, to the other CF Wives and received an interesting reply: write an appeal to the insurance company. That sounds like quite a feat to overcome but definitely is a consideration.
Interestingly enough, his company has an excellent adoption program. I did question why they wouldn’t at least first try to help you have your own child. Growing up, dreams of having kids is not like shopping for an outfit to an upcoming wedding, let alone sitting in a room and having a turkey baster used to prep you like a fantastic Thanksgiving Dinner. I can’t even begin to explain how uncomfortable it is hearing people, especially my older brother, tell you “at least it’s fun trying!” Of course, just as anything in life, you can’t expect everything to go cookie cutter like the movies. I didn’t expect to fall in love with my best friend, who happens to have a chronic illness, that prohibited the normal development of a lot of things, including the reproductive area. No need to glamorize things here people, it’s just life.
Before my husband, I was very private and secluded with my life’s details. CF is a very public condition so I had no choice but to accept it for what it is and embrace the facts of life. There’s nothing to be ashamed or embarrassed of, and I truthfully wouldn’t change it for anything. As other CF Wives would agree, it has shaped our husbands into the men they are today. You have two options when it comes to being born with CF or any other chronic illness – spend each day pitying yourself and wasting your life by not truly living it, or accept the cards you have been dealt with and make the most out of each day. Our men should favor the latter and I’ve truly learned from my husband to thank God for the blessings we receive because every day we have together is a gift.
As I question the whole insurance issue regarding fertility, it really comes down to the fact that pre-existing conditions often make it hard to get decent overall coverage. Life insurance? Pfft! Do people plan for 401k? It’s expensive living with an illness, let alone one that is not so common so drugs, treatments and enzymes that are necessary to survive. I know from experience that heavy medication regiments usually come with side effects down the road and in a lot of CF’ers, diabetes is inevitable. No, my husband didn’t get it because he really liked Skittles, it’s from prolonged steroid use. Smokers might have to pay more for their premiums but they are at least eligible even with the laundry list of conditions that are eminent due to their lack of responsibility.
It’s terribly hard to be angry at others, but when conditions are self-induced and they still receive coverage it’s very hard. It’s just like any other hardship that comes with CF and life itself. When you hear of child abuse cases, parents smothering their babies or intentionally hurting their unborn children it’s not only heart-wretching but makes me physically disgusted. Obviously these children deserve the chance to be loved and I’m still not sure why our system makes it so difficult to adopt kids in America. I know this emotional reaction is all too strong in the CF Wives community too because even overseas, couples have been rejected due to CF.
As I look to the future, I know I must remain positive and believe everything will work out. I have three jobs in queue and I know I will start my new career very soon, hopefully one with the insurance we deserve that will enable us to start a family. I know there’s a slight hesitation because the future is unknown, but if there’s one thing I do know, we will be terrific parents. I want nothing more than to give that gift to my amazing husband, because he has so much love to share. I also can’t help but giggle to imagine him being different with our kids than he is with our nieces. He didn’t hold his niece until she was a couple of months old because I made him! He was too nervous to hurt or damage her. I love him! :0)
Tonight is game three – Brewers are in the playoffs! I don’t know who is more excited, the players or my husband. We, as I’m speaking on behalf of all fans and players, won the first two games so it’s important to just take game three and move on to the next series. The Brew Crew needs to maintain in Beast Mode and get it done. If you aren’t familiar with the Brewers, you surely are asking yourself what Beast Mode is.
Take a look at this article to get a taste of Beast Mode in action.
One of my husband’s favorite players is the man with an alter ego named T-Plush, Nyjer Morgan. He takes Beast Mode to the extreme!
I’m confident that our move to Illinois was a wise one, even though I may still be waiting for the right job opportunity to come my way. I know this, by the look in my husband’s eyes, the smile on his face and the eagerness in his words when he comes from work and mentions his day. It’s refreshing to see him in action, making deals, negotiating for the better of the company, and most of all feeling the sweet sense of contribution. Plus he’s cute when he’s in business mode. It’s like he’s a different person- firm, assertive, composed and in-charge.
Last Tuesday I had my callback interview at the PR firm I previously interviewed for and unfortunately did not get the job. Two weeks ago the office manager called and asked me to come in and meet with a Sr. VP of the firm who happened to be out of town when I was interviewing. It’s probably a blessing considering I met with 3 people and took a test, which turned into a 3.5 hour process. At least I was refreshed!
Since then I’ve had two phone interviews for another position and I’m left waiting for more feedback. One position requires a marketing plan to be developed and presented to a few team members and I should be doing that sometime next week. I got an inquiry about another opening and talked with the recruiter today about the position, which is similar to the roles I had at my previous job. It’s got to lead me somewhere!
I’ve got to have faith that October is truly my month since we are in the Libra sign. The previous months are the ones that fellow Libras are usually in a funk, or so TheLibraDaily twitter account tells me. For what it’s worth, it helps explain me to a T and I’m guessing most other scaled individuals.
I finish this post on my phone as we head up north for the event of the fall, Brew Madness. We are blessed to have a great group this year – our family and close friends. I know it’s a wonderful and fun event filled with food and a multitude of beer from around the world, but I doubt people know how it truly affects me. I’ve been helping with the CF Foundation for quite a few years now because it’s always been close to my heart. This year is special because we are coming back to celebrate all the good the foundation is able to do for my husband and other families affected by CF. There’s no better way to celebrate life than with our amazing friends and family, especially when they recognize their contribution is making a difference. I know deep down my husband agrees and says an additional thank you to God for having all these loving people in our life. I also can’t help but think of his sister, Carrie, who lost her battle 19 years ago in April. I do know she’s up in heaven looking after her lil brother and sidekick and probably laughing at how I stepped in to take care of him just like his mom.
It’s been awhile since I last wrote due to our anniversary, amazing performance of the Brewers and Packers, job searching and preparation, arrival of our favorite shows and the fact that I finally got a new computer! Trying to acclimate myself to the workings of a Mac is quite an interesting adventure. I will install my necessary design and office software so I will be back in business in no time.
Until then, I wish for a successful playoff for our beloved Brewers and continued success for our Packers. Our home is filled with intense emotions surrounding sports thanks to my uber competitive husband so wins and loses severely dictate mood! At least we can watch baseball and football on the same day for our favorite teams, which doesn’t happen too often… 29 years to be exact! :0)
Do you ever stop and find yourself walking step by step in beat with a loved one or even a stranger on the street? As a kid ‘in love’ did you mimic the walking pattern to prove to yourself that you were a perfect match with them, even if just for fun? It’s not often that you may find yourself in genuine synchronization with another human being, outside of the military of course, but even transcending the mere aforementioned stride.
My husband and I joke that we are almost always on the same page. His texts often ask a question or sends a thought that crossed his mind in his busy work day and a good chunk of the time I had been wondering or thinking the same thing. Just last week he said we missed the boat on having chili to commemorate the beginning of the football season and I honestly checked the cabinets earlier to see if we had beans. Smaller and insignificant things most of the time, but it’s enchanting to know I have truly connected with someone, outside of my mom. We’ve been best friends for my entire life, find laughter in the weirdest things and I can usual finish her sentences by reading her mind. Just as in starting my posts in lowercase due to preference, I knew she would object based on our perfectionistic work habits. Now she can be happy with my proper writing style, because on review of previous posts, it is rather difficult to follow based solely on punctuation. As I digress, this particular bond took years to perfect, whereas oddly enough it came much quicker with my husband.
There is one thing that I’m almost positive we will not be in sync for quite some time or even a lifetime. It’s not a visible attribute or a subject we disagree on, but the breaths we take. As I lay in bed next to my love, I cannot help but wrap my arms around him as he drifts into a rapid slumber. Just as in the younger days of emulating strides, I would find myself listening to the strong beat of a heart and how it coincided with my own inhalation pattern. A steady and deep inhale in a two count is followed but a short and quick exhale, preparing for a strong intake of more oxygen. At times this pattern can be interrupted by a swift and suffocating matter of mucus as it prepares to exit the lungs. Since he falls asleep almost mirroring a narcoleptic, it’s hard to tell if his slumber fits ever fully wakes him up.
However, due to the fact that I’m a terribly light sleeper it almost inevitably interrupts my dreaming state. I think since my brain is always running it doesn’t help the cause, as I sit here weaving my words in the dark to avoid the post idea from escaping into the night. Obviously I can’t account for my exact breathing pattern beyond recognition of when I’m completely relaxed (perhaps before falling asleep) or controlled as in yoga routines, but I would assume the majority of people have deeper breaths in and exhales too.
I would assume this pattern is invariably different for all CF patients considering the degrees of pulmonary function. I can’t help but wonder how oxygen machines affect the pattern as well, and inevitably a new set of lungs, if fortunate enough for a chance to finally breathe easy. If you are wondering how hard CF lungs work, imagine yourself continuously engaged in reasonable exercise, such as a medium-fast paced walk on the treadmill. It’s not bad enough to gasp for air as you may experience with a P90x workout, but it’s still taxing enough.
I suggest taking a short break out of your busy routine and concentrate on your breathing pattern. Realize it’s not just about how hard your lungs are working, but also how taxing it has to be on your heart as it tries to keep up with your entire body’s oxygen need. Maybe that’s just another indication as to why people with CF have such big hearts. :0)
Breathe easy and sweet dreams!
Who doesn’t love a daily dose of vocab? (rhetorically speaking, of course) From my years enrolled in honors english, we explored extensive and obscure vocabulary that was rarely used outside of the literary world. Of course my classmates and I were challenged in incorporating these gems in everyday conversation, and it was quite entertaining. Nerd alert? I pride myself in my photographic memory and to this day use a few words that I learned in the early 2000’s. As I digress, let’s get to today’s lesson.
Misophonia: dislike of sound
A thank you must be sent to @KellyRipa for enlightening me on a perfect definition for my life, or perhaps I should be angry for exposing such a neurosis of mine. Let’s not kid ourselves… thanks Kelly! Now I have a legit response when people make a ridiculous amount of noise and I’m terribly irritated to the visible eye.
On further investigation of misophonia, there appears to be specific sounds that trigger symptoms including eating, breathing, and coughing among others. There’s even a UK-based website to help others in their diagnosis and a ribbon similar to every type of cancer. A little bloody overkill mates, don’t you think? Okay I lightly joke because certainly it’s debilitating to a degree, but it shouldn’t control your life to the point of ruining relationships. If that does unfortunately happen, it’s apparent that you just need to learn how to train others to alleviate the triggers. Possible in a perfect world. :0) Let’s put this into perspective considering there’s a definition for virtually every fear and neuroses in this world.
I can only picture the big guy upstairs laughing at me for bringing my husband and I together. It’s only fitting that he’s quite possibly the loudest and noisiest person I’ve met and still my true love. Who knew that I would fall in love with a man who has a chronic genetic deficiency that causes mucus buildup in his lungs and ultimately incessant coughing spells throughout the day and night, as well as a consistent sigh-like huff. I’m not sure if you’ve ever been sitting in a room and you hear a light cough, which then compels you to clear your throat. But it happens to me and even after years of being with Michael, it still brings a tickle to the back of my throat. Who knows, maybe it’s a bonding method so he knows he’s not the only one.
When we sat in our fraternity meetings he often coughed and at times I’d want to interrupt and ask if he needed water. Yes that’s my natural reaction and I’d like to believe a normal one at that. I think I notice his little sigh cough more than anyone, whereas when he has a big attack everyone is alarmed. My dad still pauses with a very serious demeanor and quietly asks if he’s okay. Sure is, just red as a tomato after thrashing around trying to catch his breath. It takes awhile to not panic every single time he gets a fit, especially considering I trigger him often because I’m hilarious (thank God at least he thinks I am!) I can’t forget the constant looks from people wondering if they are going to get sick from his coughing, especially in church. I’m truly thankful he didn’t have a spell when we got married!
Now I have to remind him to take deep breaths and catch up after a spell. One night in the spring he had an attack and felt woozy so he stood up, aka the worst thing to do when you don’t feel right. He panicked that he couldn’t see anything so trying to get him to calm down was quite a challenge. He insisted that I take him to the emergency room immediately and in knowing him, he often over exaggerates mimicking a typical hypochondriac. Since I was pretty sure he just needed to breathe and relax, I called the nurses hotline to try and ease his worry. Sure enough they concluded he was just on the verge of passing out. Phew! Crisis diverted.
Now back to the other noises, at least I am very lucky he does not snore. It’s truly remarkable to imagine someone with difficulty breathing being okay in his sleep. Sometimes it’s the little things that are so beautiful, especially considering I’m a light sleeper even with our sound machine set on summer rain. His table manners on the other hand needed to be greatly increased, yay me. Resorting to blaming the lung condition to indicate why he chews with his mouth open was simply not an acceptable excuse. I concluded it was because he has a healthy appetite and for lack of better terms, shovels food into his mouth as if it’s his last meal. With some acknowledgement and self awareness, or mostly me catching him making an extreme amount of noise while eating, he’s improved greatly. I just don’t understand how so many people still eat or even worse chew gum with their mouth open. A lost piece of manner training evidently. As a teen, I would ask my mom and dad why they were chewing their gum like a heifer on an open field chewing cud. It usually sparks a laugh to lighten the mood and make them aware it is loud, but I guess I can see how if you greatly suffer from misophonia your relationships can severely be strained during meals.
There are a plenty of close friends and family who make me cringe and cause me to lose my appetite, but don’t even get me started on holding conversations with a mouth filled with food. Yuck. I do realize while writing this I can come off quite pretentious and I’m by no means trained by the Queen, but by understanding there are others with the same intense dislike for sounds, it makes me feel better. Plus a little bit of humor never hurt anyone. I’m very nervous for starting a family because of all the ridiculously noisy and heinously annoying toys that run rampant in toy stores these days. I can only pray those close to me understand my neurosis and will refrain from purchasing said items unless previously approved.
At least I do have my music to fill the air and block a majority of these deafening sounds. Because my body also registers temperature higher than every single person I’ve met, having fans on me in the work place is a must. Last but certainly not least, we cannot forget my free daily therapy living in with my husband. As he continues to sigh-cough while I near the end of my post, I merely smile because he’s by my side (and not yelling at the Badger game on tv)!
Breathe easy… and quietly! ;0)
football is officially in season tonight at Lambeau Field! it’s the day that we wait for all year in this house and in this family. call it a rite of passage to love sports! the added bonus of being the Superbowl Champions is all the extra, deserving attention for the cheese heads. kid rock, lady antebellum and maroon 5 are putting on the pre-game show, one actually worth watching. I saw jordin sparks and can’t help but wonder if she’s singing the anthem.
my husband is an avid sports fan, whether it be football, baseball or basketball. it doesn’t matter if it’s professional, college, high school or the little tike level, it’s all about the love of the game. as a kid, he played little league and loved shooting hoops in his various jerseys, especially his idol Michael Jordan. it was his make-a-wish dream but his mom opted for a modest approach – relatively small TVs for both himself and his older sister. I wonder if he would have been able to ask to meet MJ, if it would have happened. at least i know he’s popular enough for Brett Favre to fly and meet him!
if there’s one thing I’ve learned so far in life is to be passionate in all that you love. passion can drive you to find hidden talent, true happiness and endless love. I see endless passion when I look into my husband’s sparkling ocean eyes and it reminds me to take each day and make the most of it. love as hard as you can, smile big and show your teeth, thank God for His blessings and take deep breaths of the rich air that encompasses you.
he fills me with passion, the sweetest man I’ve ever known, so full of love, laughter and hope… truly a man only dreamed of as a young girl on a sunny day with fluffy clouds passing above in ever changing shapes. he makes all the obnoxiously sweet cliches my reality and i am a better person because of his love.
he fills my mornings with a note filled with to-do’s and i love yous, texting me his usual good mornings. but he really made me smile when I read “love you more than anything even sports!” for the biggest, passionate fan I know, that’s a lot of love and I’m a lucky girl. GO PACK GO! let’s hope he enjoys chili for dinner, our football comfort food.
our niece kenadee was ready for some football this morning and it’s too precious not to share with you!
fall is a beautiful season and our personal favorite for many reasons. granted we are a few weeks out still for the official change from summer to fall, but the first of September is reason enough to celebrate. for my family September is the month of love. my parents will be married 30 years on the 12th, my brother will be married 3 years on the 20th and we celebrate one glorious year of marriage on the 25th.
the 10th annual Brew Madness is on the 30th and then we ramp into wedding season again with three of my friends getting married in October, and my birthday mingled in between all the festivities. the leaves on the trees changing a multitude of colors, the warm days and brisk nights perfect for a stroll around the neighborhood, bonfires with friends, and how could we forget football?!
I’m hoping fall will bring us luck and good fortune in securing a job so we can begin to save for a family. it’s been almost 2 months since we’ve been in our new place, in a new state waiting for me to get back into the marketing saddle. for now I’ll continue to do what I can and let God do the rest. at least I can make time for creative outlets like designing a CF Wives shirt!