Tuesday, December 30, 2014

Curve Balls

Energy is a funny thing. It changes rapidly, without notice. And yet, even at our lowest we somehow manage to summon enough strength and energy to at least do the bare minimum of what's required of us. And then we collapse.


I've fought with energy on various levels since my colectomy that left me requiring iron and B12 for the remainder of my life. Even with iron medication 3-5 times a day, I have yet to reach a normal hemoglobin level again since that first surgery. With the use of daily microlozenges, I've achieved and maintained above average B12 levels.


And yet, my energy is just as much of a roller coaster struggle as it has been all those years ago. Oddly enough, even in my sickest years 8-12 years ago when all I could manage was to complete my studies and my work hours, there was an abundance of times that I remember as having more energy than I have now. I don't feel old, I'm only 29 and yet when I look back on all the various activities that took up every moment of my days for years, I become exhausted just thinking about it! I can't even force myself to maintain as busy of a schedule as I did 6 years ago!


At my very worst, I went to school and work only and I slept every chance I had. At my best, I worked part time, attended school full time, attended sorority events, college activities, and family gatherings with energy to spare. I went out three nights a week with friends, staying out until 3-4 in the morning and rising again by 7 am to start the day all over again. I don't remember resting any except for during the very worst times. I realize my memories become fuzzy after a while, not just due to age but more so as an effect that is associated with my PTSD and coping mechanisms. My energy must have been at higher levels during those years. Otherwise, how did I participate in the various activities demanded of me?


Presently, I am astounded by myself when I am able to participate in activities of chores, hobbies, or social outings after work anymore. Most nights I come home after work and veg on the couch, recuperating from the events of the day. My sleep cycles further affect my energy levels. Increased energy when I'm able to sleep and lower levels during sleep deprivation periods. I question how I managed such full schedules just a few years ago, I'm amazed at what I was able to accomplish on a daily basis. Even a year ago I engaged in more activity by balancing a full time and part time contract job. Now the thought of even PRN work makes me groan with exhaustion. It takes a while to face the truth sometimes. Things we don't want to admit, things we want to blame on our illness but some things we just can't lay at the feet of FAP.
 Slowly I've come to realize that yes, I did have more energy when I was younger and whilst FAP and my health drain my energy daily, I also have a depleted source of energy due to aging. Oddly, this has been a test of acceptance for me. I didn't want to admit that I'm already experiencing normal aging process. I still look incredibly young for my age and within my mind, I still see myself as 26. I actually forget I'm 29, getting ready to stare at 30 in just half a year. I'm accustomed to bothersome symptoms occurring as a result of the FAP, not a normal process that occurs to healthy individuals too.



Living with a chronic illness complicates any situation and blurs the lines between normal and abnormal. So often it's difficult to distinguish the cause of a symptom as related to our illness or related to normal processes. With these blurred lines, it becomes further difficult to notice "normal" symptoms versus the abnormal symptoms that fill our world that we have become accustomed to as a normal reality. Our minds flood with multiple questions in an attempt to identify the source of symptom changes. Is our health declining, is this a flare up, is this to be expected, is this a sign of something worse, could this be an additional condition? It takes us years to adapt to FAP and the associated issues, years of learning what our new norms are, how and what affects us, what is required to recuperate. In spite of our expertise in how our bodies work, a curve ball always presents itself. We become masters of the curveballs, juggling them with our typical issues; adapting, coping, growing...surviving.


A curveball isn't always big, they come in small sizes as well. Regardless of size, they throw us for a loop when we're least prepared for the change. Grab hold of the curveballs and throw them back at life. Prepare yourself the best you can for the next one that is heading your way.

Friday, December 19, 2014

When the Roles Reverse

This week has been a whirlwind of scares and changes that I wasn't prepared to encounter.

My husband has been pretty healthy his whole adult life and hasn't seen a doctor for anything in over 20 years. Complete opposite of us FAPers. Everything changed this week in an instant, starting with a phone call early Tuesday morning.

After a couple months of excessive urination and thirst resulting in a long battle with severe leg cramps, he finally agreed to get lab work on Monday afternoon. Tuesday morning my doctor called us and informed us that his blood sugar was almost 1000 and he needed to go to the ER. We found out that day that he was Type 1 Diabetic and he had been without insurance for the entire year yet we had never received any cancellation notices. With insulin dependent diabetes, he would be required to find a new job within the next few months.

We had no doctor or insurance for him, about to be without a job, and were accruing plenty of medical bills for this serious new diagnosis. We were in a nightmare situation and the light at the end of the tunnel was growing dimmer at every turn. I was terrified of so many things that were happening and could happen yet I was the caregiver now for the first time and I needed to remain strong and calm for him. He didn't need the extra stress of worrying about his wife going to pieces on him while he was at risk of a diabetic coma or death. What a different role, from patient to caregiver. Everything was on me and I didn't know what to do.

Unexpectedly our luck began to change. My work allowed me to enroll him on my insurance for his coverage to start January 1st and the hospital gave me a large discount for making a relatively small payment up front. His employer was making accommodations to keep him employed. Now I just needed for him to become stable and for me to find a way through the next month until he had insurance and a doctor. By early afternoon, I was no longer fearful, I was strong and determined. And on an adrenaline rush. Nothing and no one was going to stand in my way. I was energized but that can last only so long when you're splitting yourself between various responsibilities. I spent the day and evening tending to him, tackling our issues, returning to work, and taking care of household needs.
By Wednesday morning, I no longer had the energy or the adrenaline that sustained me during the chaos of that first day. I could barely function mentally but I had a lot to do at work and it hurt to be away from him. I knew that I had to take better care of myself or I'd need a caregiver myself if I weren't more careful. I turned my focus to the evening, I had to get more sleep before rising early again to visit and help my husband with his morning routine. I needed to prepare for a new battle that day. How was I going to be able to afford his insulin and supplies before his insurance started and how was I going to have enough supplies to last him until we were able to obtain an appointment with a doctor?




I recalled all the time my parents and family members took care of me, of the time my mother and I were both hospitalized at the same time. How did my dad do it!? He worked, visited us, and took care of the house and land. I now knew how exhausted he must have been. How exhausted they all must have been.
The worry and the need for a plan and a safety plan were starting to become overwhelming as I tried to resolve every issue the best I could. I worried about his health and his mental health, the adjustment required to transition from caregiver to a  new patient is a lot for an individual as well. How was he doing, what did I need to do to help him adjust and to keep him motivated for his health as well?
My mind thought back to all of those who have helped care for me, they must have felt as helpless and overwhelmed as I did. As a patient, we feel so sick at times that we can't spend our energy on the same things as our caregivers. Our bodies need that energy for healing and survival. We barely have a chance to process our health changes and situation before we're thrown to the wolves of the illness and what is required for self care. And so our caregivers are left with all the worry and to also deal with our own adjustment issues yet we barely notice. So often our caregivers only show us their battle faces, not their exhausted, terrified, overwhelmed with emotion faces.

The universe smiled upon us on the last day. We received education from a diabetes nurse who helped us navigate what we needed and helped us obtain that much needed doctor appointment. She has remained with us as well as one of his ICU nurses. They're only a phone call or email away if more guidance is needed. I no longer feel alone in navigating the terrain of diabetes. We have a long journey; but we are well supported and well guided.

In the matter of 3 days, our world turned upside down and resurfaced different, but upright. At the end of it all, I've been left with feelings of intense gratitude toward so many people and for the favorable outcomes we found when we weren't entitled to such favorable outcomes. Not all situations are so lucky. We were fortunate to obtain resolution so quickly for so many issues. And I can't help but think, if it weren't for my own health issues that have shaped myself and my life in so many facets...I wouldn't have the same fortitude as I needed to complete my role in our crisis and maintain my new role as caregiver.

The struggle between patient and caregiver roles are real and they deserve our attention. We must draw on our strengths and our support systems to help each other cope with the changes in roles. Together, patient and caregiver can do a lot but not as much if separate.
Show your caregiver appreciation and allow them their much needed time without our demands. Communicate with each other and discuss what each one needs. This is a partnership and it deserves both people.







Wednesday, December 3, 2014

Supportive Lengths

In Alone Together, I shared my own struggles with disclosure of private information and the heartfelt pain that accompanies keeping secrets. This is a matter that is ever present in my life at this time and likely will be so until I'm able to obtain closure. Closure, something that I thought only would come with a final decision and announcement. But as my heart and mind weigh heavy and I'm brought to tears at least once a week, I'm realizing I need more than that. Sometimes we need a lot

I tend to overanalyze everything. I ponder, question, and mull over information, thoughts, feelings, and questions for hours, even days at times especially when I'm overcome with emotion. It is exhausting and we can only do it for so long before we finally give up - either accepting or no longer caring about what originally made us care so deeply.


I stopped the thinking. Instead I listened. I listened to my spirit and my spirit let it be known what is needed for that closure.



I shared this with my husband as I will need his participation. My darling husband is too good to me and is one of the most supportive and caring individuals I know, even if he doesn't always show it to the outside world. A couple weeks ago I told him that I wanted to have a private incense burn for cleansing. This week I expanded, I need a full smudging, not just some bits of sage thrown into a fire. I need to go through the actions and cleansing one another and because I am a very tangible, commemorating type person, I need it photographed. I need the visual reminder to further flood my memory and senses with that moment of shared release and love. A flooding that I will be able to grasp when I need that sensory reminder.

And after I shared with my husband what I needed and he dutifully, without hesitation agreed. I realized the supportive lengths our loved ones, especially our caregiving loved ones go for us. This cleansing is more for me than for anyone else yet I need my husband's participation, I can't reach that sought after closure that I so desperately need without his participation. I can't. It won't happen alone. And without me even saying that, he knows it. How are caregiving loved ones know us so well.


The things we need to finally feel better, safe, relaxed, at peace are sometimes very little and others are big and sometimes they don't make sense at all, particularly to someone not in our situation. With our disease, we have ample opportunities for much needed support and help.

When a loved one takes the time to share what you mean to them and to let you know you're not alone in your struggles.


When a loved one brings you a meal that isn't from the hospital cafeteria, when you sink your teeth into something you can't possibly get yourself and your tongue tastes the flavors of a home cooked or restaurant cooked morsel. Your heart sings and you instantly melt into a pile of gooey delight, forgetting where you are and what's wrong.


When a loved one gives you an item and you cling to it through your tests and procedures for as long as the medical staff will allow, when touching that item seems like the only thing that can ground you and make you feel a bit safe, a bit comforted through the stress and fear.

When a loved one tends to your affairs and your home for you as if it were their own because you're too weak and fatigued or worse, in the hospital again. The security of knowing your home needs, your belongings, even your living treasures are being looked after and the relief of the stress of managing survival and home needs.


Such are precious bits of support that fill us with gratitude, actions that touch our hearts and spirits with their gifts of relieving stress, providing security and comfort, sharing pain and happiness. We ask for such support without even asking a lot of the time. As sickies, we often share a common sense of guilt and stubborn pride. Guilt when we receive the support and help we, in reality, do need and a stubborn pride that keeps us from asking for all the support and help that we need.
With all the commotion related to our physical and mental health, we are ever so grateful but it's easy to not grasp the full supportive length a loved one is willing to go for us, particularly when it's not questioned and even when it's not spoken but just known that you need this length or that length.

To not be questioned about the rhyme or reason for why this length is needed over another length, this is a gift in itself as well. This is the gift of love.


I hope you have such a person in your life. These individuals are a gift and as much as they understand you, your needs, your situation and your difficulties...be sure to let them know amidst the commotion, you appreciate all their efforts and willingness. Odds are, these individuals also see you as a gift in their life.
After all, without this shared love, at the very least our struggles would be much greater and their lives would be much less interesting.