Thursday, May 5, 2016

Living With a Spouse Who is Living With a Disability

This picture illustrates how I like to remember my husband, when he had spirit and was in decent health. Zach and I met in 2006, before he took his first decline. Once Upon a Time… we went places on the weekends, we had energy to spare and figuratively, the world was at our fingertips. My children have never known this person. My oldest daughter (Nina, age 8), remembers, at the most, a year or two of who her father was before the severe deterioration began. With the stresses she faces, I don’t believe she remembers that time anymore. As a family, we have been forced to explain the downward spiral of my husband’s health to my children. They are so young, yet they have come to understand that every day we have with their dad is blessed, no matter what activity or lack-thereof occurs.
I have been by Zach’s side every day since we met. In 2007, the symptoms of his illness started slowly with insomnia and sleep deprivation due to discomfort. It directly affected his job to the point that he was almost always late (more than once per week) due in part to sleep dread, anxiety, and pain. At the time, we didn’t understand; this was just the onset of the illness. In 2007, his primary doctor prescribed him Vicodin for his pain. Even with the medication his work was adversely affected. No matter how much he tried to wake up before his deadline, the fatigue caused by his condition interfered with his ability to perform required tasks. Zach went on to work until February 2008, when he was finally forced to resign his position under the threat of being terminated over his late appearances. Within a few months, I was able to locate a job in a climate more beneficial to his health, so we moved to Arizona in May 2008. At this point in time, Zach was barely able to be a stay-at-home parent.
From the start of my instructional design position at the University of Phoenix in Arizona, I had to acknowledge to my work colleagues and boss that my husband had a disability. At that time, it was essential because I would use my lunch break to go home to care for him and our daughter Nina. We were very lucky that our oldest daughter was obedient and independent. I would find him at least once a week, with our daughter preoccupied, still stiff in bed after I had completed an entire 8-hour work day. As his illness progressed, we noticed other side effects such as headaches and iritis. Some side effects, in part, were due to the multitude medications that he was prescribed. In 2009, the headaches became worse and we had to ask our family for help. My husband’s sister, Tessa Williams, came to stay with us for a month to help with watching our daughter because the migraines became so bad that Zach couldn’t be left to care for our daughter on his own. Since we had moved to a house farther away from my job, I was unable to come home and check in as often as I wanted to. Thankfully after some medication changes the migraines got better.
In 2010, Zach’s health took the most significant decline yet. This is when he could no longer care for himself. At the time I had to request my schedule be changed, so that I could take a 2-hour break midway through the day, to be able to go home and help. I started to go in at 6am, drive 30 minutes home, just to deliver his medicines to him. I had roughly an hour to help him take care of our daughter and then drive back to work. Even though this extended my work day, knowing that I delivered the medicine to my husband and had taken care of my daughter’s brunch, I felt a little less anxious about the situation.
In an effort to improve his quality of life, under the recommendation of his physician, he took on an increased risk for cancer by trying several types of injectable biologic medicines know as TNF inhibitors. Unfortunately, none of the injectable biologic medicines improved his condition. He began infusion treatment with remicade. When he began treatment with remicade, Zach received 3 starter infusions over the first 6 weeks—the first at the start of treatment, another 2-weeks later, and one more 4-weeks after that. After the first 3-treatments, he began maintenance dosing, which means he received an infusion once every 6-weeks (as recommended by his physician). Each infusion took 4-to-6 hours to administer and affected Zach’s ability to drive, therefore I was required to drive him both to-and-from the appointments. The remicade infusions helped Zach a lot when he first began the treatment. The infusion helped by reducing the number of days spent primarily in bed from approx. 15 to 10-12 out of 30 days on average. Zach continued the remicade infusion for approximately 18 months. This risky treatment only delayed the progression; it had no impact on daily pain or fatigue levels caused by inflammation. His body rejected the treatment after multiple attempts to reduce effects of the reaction.  His doctor insisted that he discontinue the infusions because the risk of systemic allergic reaction outweighed the benefits of treatment.
In December 2010, my supervisor left and I was assigned a new supervisor and he did not approve of my departure in the afternoon for more than an hour. So as we entered 2011, I had a great deal of anxiety over my husband’s health because I knew that management was not going to support my needs to care for my husband and daughter at a moment’s notice. I spent the next 2 years using all my vacation time (60 hours annually) in half day increments because I had to either go home to take my husband to his infusion appointments or to care for him.
In December 2012, my supervisor terminated me from my position at the University of Phoenix because I no longer had enough vacation time to use to care for Zach. In fact, several of the weeks leading up to being terminated, I had been forced to use unpaid time off in order to care for him. After losing this job, I was not able to regain full-time employment with benefits anywhere because of the amount of time required to care for Zach.
By 2013 and on, I could only participate in employment if it was only a few hours per day (teaching only one or two classes.) I was forced to take a position teaching part-time as an adjunct at Mesa Community College located at Red Mountain because it was only 6 miles from my house and in the event of an emergency, I could cancel class and be at home within minutes. All my other employment is online (work-from-home) contract based jobs. To support my family, I teach for three online colleges (University of Phoenix-online, Brookline College and Valley College.) I am required to complete “daily tasks”, but those “daily tasks” are not associated with a specific time. This unique and tedious schedule enables me to be present for Zach and our children’s needs.
At this point in the progression of Zach’s illness, I had become the receptionist, accountant, and immediate go-to-person for all of Zach’s health needs. This includes, but was not limited to: managing Zach’s medicines - I delivered his prescriptions to him twice per day at the necessary time. I renewed his prescriptions which involved driving to pick up paper prescriptions from the doctor’s office and multiple trips to the pharmacy.  I scheduled/transported him to all of his doctor appointments and necessary treatments (infusions). I completely managed our family financial obligations because any illness flare could interfere with paying a bill on time, so in this sense, I cannot depend on Zach for critical thinking tasks. I also managed our family health insurance, which was/is the Affordable Healthcare Act Marketplace. We are lucky that we have health insurance from the Marketplace, if it wasn’t for the Affordable Healthcare Act my husband would be considered “uninsurable” and the out-of-pocket costs would have already bankrupted our family. Managing my husband’s healthcare needs requires many hours of dedicated time, almost every week.
In the summer of 2014, my husband’s childhood friend, Paul Hrinda, came to live with us to help out with Zach’s declining health and to watch my children in my absence (even though it was only a few hours a day). Both Paul and I were able to alternate our schedules to accommodate having someone at home to care for Zach and the children 24/7.  Even though I was not able to return to full-time work, I was relieved to have someone at my house during the day time hours to watch my children.
So, after reading this – you are probably wondering does Zach ever have a good day? Yes, he does. Typically, 1-to-4 days per month, my husband is able to push through the pain. On these days (since they are so far and few between) my children often overwhelm their dad because they long to play with him and do fun activities. 
I wouldn’t wish this illness on even my worst enemy. In 2004, I lost my mom to terminal cancer. I watched her deteriorate in less than 3 months. At the time, I thought it was the most terrible way to die; To lose your life after battling every day, for just one more day. Now, when I reflect on that event, I realize my mom was lucky to live with a terminal illness for only three months. I have watched the person I love slowly deteriorate into a broken mess of daily prescriptions just to be able to be present a small portion of the day. I can’t shed this deep feeling that I can’t help Zach, other than to deliver his morning medicine to him, so that he might be physically able to get out of bed by at least the afternoon to spend time with his children.
This illness has become the dictator of our way of life. A lifestyle that involves me and another adult caring for my husband’s needs to ensure his survival. This is the sad truth of how we have lived for the past 3 years, moment-to-moment. Every morning, I take Zach his medicine, so he is able to get up physically by the afternoon. I teach one or two (on ground) classes and never leave my home for more than 2 hours, so that I can care for Zach and my children. I struggle to clean my house because it has been years since my husband was capable of doing so. It has been years since he has been able to cook, go shopping for groceries alone, drive any distance above 5 miles and even enjoy a hobby. All of these activities he once was able to do, are now out of the question for him. Zach can't go to the grocery store because he struggles with memory and concentration, due to excruciating pain. Even to get a couple items from the store, it is necessary for him to write them down entirely otherwise he forgets why he went to the store. He struggles to care for his personal hygiene, often only showering once a month. It is very difficult to maintain a conversation with Zach because he loses his train of thought so easily. I do laundry and fold it, because the bending and folding required is too much for him. If I let him try to do these regular chores it leaves him nearly bedridden for days.
I wish for better days, but based on the progression of Zach’s illness, I know I won’t see them. Each day, I pray and teach my children (pictured) to be thankful that their dad is still here even though he is debilitated by ankylosing spondylitis.

Tuesday, March 8, 2016

Transforming Your Life by Asking the Right Questions

Over the past few years, I've learned the value of asking the right questions. When students are preparing for my classroom presentations I often drill them with the appropriate questions so they come to the correct conclusions prior to presenting their information. Often these questions involve the transitions of ideas and how those ideas are presented to the audience. 
Sometimes what we ask is just as important as the answers we receive. So recently while I was searching for how to interpret some impeding events which could entirely change the way my family lives (and where we live). I came across an article about finding more meaning and connection in your life.  Additionally, this article suggests you ask yourself one question a day for 100 days and at the end of the 100 days your life will feel happier and you will feel as though you have grown.
So today, I hope to help my friends, family and readers by sharing these very useful 100 questions. Challenge yourself by asking a question to your soul each day for the next 100.
1. Where is my heart guiding me?
2. What do I need to say that others have left unspoken?
3. Are there any skills or talents I'm not utilizing?
4. What is my personal blind spot; what have I been unwilling to look at?
5. Where have I been worrying too much about what others think?
6. What new patterns and habits can I invite into my life?
7. Where have I been more focused on how I look, rather than how I feel?
8. What concerns am I willing to release?
9. What am I committed to changing?
10. What is my body craving?
11. What commitments to my self can I honor?
12. What new habit can I start?
13. How do I want to feel?
14. What signs have I been misinterpreting or ignoring?
15. What lessons am I learning right now?
16. Where can I surrender?
17. Where can I take responsibility for my outcome?
18. What challenges from my past can I celebrate overcoming?
19. Where can I ask for help, and who can I let in?
20. What expectations am I ready to release?
21. How is life asking me to grow right now?
22. How have I let fear dictate my actions?
23. What can I remove from my life?
24. What have I been avoiding out of fear?
25. Where can I show more of my true self?
26. What area of my life have I become disenchanted with, and what is that trying to tell me?
27. What has my intuition been trying to tell me?
28. Where do I feel broken? What steps will I take to release this internal pain?
29. What am I learning on the way to reaching my goal?
30. What did I love to do as a child that I can do today?
31. Where have I blocked myself from feeling?
32. Where have I been focusing too much on the outcome?
33. Where in my life do I feel forced to take action?
34. What current situation in my life have I been resisting?
35. In what ways can I appreciate myself more?
36. What flaw that I hide from others can I reveal?
37. What long-term success am I working to create?
38. What healthier habits can I start?
39. What can I do with my current limitations?
40. What dream have I ignored, but keeps coming back?
41. What situation in my life turned out to be a giant blessing in disguise?
42. Where have I been settling?
43. And what actions step can I take to raise my standards?
44. What is my fear trying to tell me?
45. In what ways can I be kinder to myself?
46. What have I given up on that still wants to be pursued?
47. Where have I been forcing myself to heal faster than what feels right?
48. How have I been cheating on my future by thinking thoughts of my past?
49. What "flaw" can I accept today?
50. Where have I been hesitating to take action?
51. What has the universe been asking me to release?
52. What past situation have I been romanticizing?
53. How has my past hurt my ability to move forward?
54 . What plan feels forced or like it no longer fits in my life? Can I let it go?
55. What emotion have I been hiding?
56. What are my instincts trying to tell me?
57. What does my ideal life look and feel like?
58. What area of my life can I take more of a leadership role in?
59. Where can I be more unapologetic about what brings me joy?
60. Where have I been playing it safe?
61. What action step can I take despite my insecurity or lack of confidence?
62. How am I standing in my own way?
63. What stories am I telling myself that are holding me back?
64. What do I feel most guilty about?
65. When do I feel most alive?
66. What have I denied myself that I really want?
68. What relationship am I not feeling the way I want to feel in?
69. What am I avoiding right now in my life?
70. What have I stopped doing that I want to start again?
71. What do I need to say but have not voiced?
72. How do I measure my success?
73. What barriers do I create that keep me from what I want?
74. What in my life am I forcing?
75. What have I denied myself that I really want?
76. What insecurity can I love today?
77. Can I consider a more fun-loving approach?
78. What project can I give new life to?
79. What is the silver lining of my current situation?
80. What relationship can I remove myself from?
81. What patterns keep repeating in my life, and what can I learn from them?
82. What drama can I disengage with?
83. What miracle have I recently witnessed?
84. How can I be more honest with those who are close to me?
85. What dream have I been ignoring?
86. What recent situation do I blame myself for?
87. Where can I stop second-guessing my own judgment?
88. What desire do I need to revisit?
89. Where have I allowed "no" to stop me?
90. What act of kindness can I do right now?
91. What promise can I keep to myself?
92. Where can I be more courageous with my heart?
93. Where can I be more understanding?
94. Where has scarcity or lack-based thought prevented me from doing what I love?
95. When I listen to my heart, what does it say?
96. What payoff is no longer pleasing me?
97. What action step can I take today that my future self will hug me for?
98. What change can I make today?
99. What little act of kindness can I do today?
100. What new beginning am I being guided to?
Asking yourself key questions is powerful way to cultivate more self-awareness and happiness. I hope you find these questions as beneficial as I have.

Thursday, March 3, 2016

As I Prepare for our Phoenix Departure

When we first moved to Phoenix... Zach and I told each other (and our families), that it was the 5-year plan. However, life got in the way...Much of the time we've spent here has been good. From the students and colleagues that have fostered friendships and networking opportunities with.To the years, I've spent learning the beautiful dance traditions of Hawaii and the sisterhood of ladies who have helped me become a better version of myself.
The births of my two youngest daughters’ Zhenna and Fiona. The love my family has fostered for festival season in the beautiful sunshine weather during the months of February through April. To the friends I have made through learning and practicing Buddhism.
There have also been disappointments and sad times. When I was let go from my full-time job. The horrible car accident I was in 4 years ago. The time I’ve spent in the hospital for all the gastric issues I have dealt with.

Any way I look at it, I have grown as a mother, as an educator, as a friend, but most importantly as a
person. However, just as all good stories must come to an end, so must our time here.
My husband has been waiting 4 years for a disability hearing and it has finally been scheduled for May 2016. Whether that hearing finally puts our family back on track, or whether it becomes a disappointment is truly out of our hands at this point. Additionally, Nina will finish 3rd grade in May. So, all signs point to packing up our home and renting out our house, as we return to Pennsylvania.

We have missed our family and friends very deeply for a long time, but it is truly a bittersweet time none-the-less. However, many of the career opportunities we moved here for have been gone for some time.

So it is with some solace, I pack our belongings and the treasures we've acquired in the 8 years we've called Phoenix our home. I am still looking forward to new adventures in my future. The application of the lessons I've learned here, to where those lessons will lead us when we return to our home will be a worthwhile venture.

Thank you if you have been part of our Phoenix journey, we will remember these years fondly. Also, thank you to our friends and family that will be taking us back with open arms, as we start our next adventure.

Monday, February 22, 2016

Reflecting on Life and Accepting Change

It is less than often that I find time alone to myself to be able to think clearly and write. Having three children has taken its toll on my free time. So when I do get blessed with an hour to think to myself I try to really work through the week's (or month's events) with clarity and some overthinking.
We all lose our direction or way in our journey, even now and then no matter the optimist, everyone experiences bad days (or weeks, or months). I try to keep my eyes on the prize, which is not easy, because "happiness" is easily defined but not so easily attained.
When I lost my full-time job, approximately 3 years ago (2012). We tried to react rationally, because that's all you can do when your faced with heartbreak and sadness. You do your best to react to the events around you appropriately, then learn to grow from that experience.
But what do you do as war, hatred, poverty, greed, and negatively creep under your doorstep? For me, I try to recognize that this is just part of life's challenges and accept that the change is part of the lesson to be learned. 
One of the best communicators I've ever researched, William Ury, discusses how many of us are constantly waiting for our turn to talk rather than, listening to those who are speaking. As humans, we are reaction machines. We are ready, set, and go to speak about the things we are passionate about both intelligently and unintelligently. Yet, we often failure to actually put action where our mouth is. This is how we all lose, when you stop communicating with those around you, they can't help what they don't know or see.
But what do you do when the message or reality is hard to face? How do you preserve your dignity when your disappointed? How do you discuss what is hard to say?
In 2008, I moved my family to Arizona for an amazing job opportunity and a chance at a 'supposed' good 5 year plan. Well, 8 years later I find myself disappointed because the plan didn't work out. As I mentioned above when I lost that full-time job, our family reacted as best we could. I continued to work upwards of 6 part-time jobs to try to maintain the dream we originally had. I also tried to save face by not accepting defeat. Yet, each year after 2012, I watched my income become less and less and our struggles grew and grew. It was often, our family suggested we move back.
Why did we stay? One reason was because my husband was waiting in the neverending line to have a hearing for his disability and I had made a good life for us here. We are happy, and isn't that the most important? But the more I look at the things I have, the more I see the things I'm missing.
I joined an amazing hula hulau and have made friends with some of the nicest, most inspiring women I've ever met in my life. They became my ohana. I also  love my on ground part-time teaching job (even though it doesn't quite pay the bills). I love the students I've met over the years, and those that have become lifelong friends.
But, all good things must come to an end because otherwise how would they become fond memories?
As we approach my husband's eminent disability hearing, we have realized that no matter it's result - our 5 year (now 8 year plan) has ended and it's time to make the next 5-year plan.
Taking into account, the things we miss the most - it's become obvious that it is time to return to our home state of Pennsylvania. This decision was hard, but the one thing we have missed in our lives the most, has been the presence of family.
Despite our best efforts, it seems most obvious that the right direction to turn is to run towards the arms that have been open all along.
As much as I wish this decision was easy to come to, I've found myself grieving for the life I've come to know. I love the life we've built, I've had two children during that 8 years here and I grieve the loss of my hobbies. While here, I enriched my life by bringing faith back into it. I know that faith won't fit in as well back home. I've grown to love dancing with my hula sisters and I'm grateful of the lifelong friendships (ohana) I've made.
Where we ultimately end up is hard to say, a lot of that hinges on whether my husband has success with his disability hearing.
However, as I sit here weighing out our future I know a few things to be true. When I left Pennsylvania at the age of 25 with my eldest daughter and husband, we didn't know much but we had love. I know we will leave Arizona the same way, with 3 beautiful girls and love will still be guiding us.
And isn't that what it is all really about anyway, love and self-made happiness?