Saturday, March 26, 2016

Working While Chronically Ill

working with chronic illness life's a polyp

Balancing employment and health is a challenging experience. The demands of a job and the toll of stress and exertion upon a chronically ill body is a balancing act not to be taken lightly. With proper care, the right circumstances, and a bit of luck it can be achieved.

Although my pediatric doctor adamantly believed I would qualify for disability due to my health, I was determined to make my own career. I've been fortunate to be able to maintain full time employment for the last 7 years although there are times that I seriously worry about my ability to continue working. I've learned a lot about the importance of self-care during my career thus far in order to maintain my employment status. My parents instilled upon me a strong work ethic. Combine this dedication to my work with my own hard-headedness and determination and a concoction is created for increased stress and susceptibility to illness.

During my first year of full time employment I experienced first hand the serious threat stress places upon the body. I was over-worked and still learning how to handle working 40+ hours a week while maintaining my own health. My body could only withstand the stress for so long. After about 6 months my health began to suffer and I was experiencing flare ups on an almost daily basis. I was forced to quit my job. I took a month to find another job during which time I recovered my health and have been able to work ever since after learning lessons in self-care.

I still struggle with managing my own self-care as I often accept additional responsibilities for a temporary period or insist upon working just a bit longer even when I am ill. I've learned that these behaviors place extraordinary stress upon myself physically and mentally and often result in a flare up. Therefore maintaining my usual responsibilities and taking time off when necessary are absolutely essential for my well-being.

I've learned to pace myself in my work. There are days when I am able to work 10 hours for the day and other days when I can only manage 4 hours. Instead of pushing myself past my breaking point, I must assess my health and my capability and balance it with my work load not only for the day but for the week before I recover during the weekend. If I need to work longer on a particular day, I've learned to lighten my load and increase my resting period on the day prior to my long work day.

For the past 4 months I have been battling anemia after a trial period without iron or B12 medication. I became so fatigued that I was hardly able to keep my eyes open past 11 am on average. I was experiencing multiple symptoms of iron and B12 deficiency and my daily functioning was greatly impaired. I began to worry about my ability to remain employed as my work performance was suffering and unacceptable in my eyes. I voiced my concerns to my managers and restarted my B12 medication on my own. I had to make a change before my functioning continued to diminish.

My employers are aware of my health issues and work with me to help me balance my health and my work. Working for an understanding employer has been key to my employment sustainability. I'm able to flex my time as needed, utilize intermittent Family Medical Leave of Absence, and continue my efforts to maintain a high work performance while monitoring my health status. My managers work with me on bad days and appreciate my good days. They have faith that I will complete my responsibilities, if not today then within a timely manner.

It takes a combination of effort and measures to maintain the best of health particularly when undergoing additional demands upon your body and health. Finding the correct combination for balance takes time and effort of trial and error. It's important to not compare your level of functioning to another as one person's balance set won't be the same balance set for another. It's vital for our well-being to find our own balance and not push ourselves past that balance in order to thrive with whatever endeavors we're pursuing.

Saturday, March 12, 2016

To the Broken Hearted

broken hearted  life's a polyp

After disclosing about my own journey through broken heartedness and divorce while dealing with my chronic illness, I heard from several people who had gone through similar trials and it touched my heart.

Regardless of the type of relationship, those of us with a chronic illness are more vulnerable in our relationships than our healthier counterparts. We open ourselves in ways others aren't forced to expose. We are more at risk of losing ourselves as we learn to lean on another to help us through our health struggles and we begin to share our health experiences with another. When the relationship ends, regardless of reason, we are vulnerable as we regain our footing and independence.

This is dedicated to all those who are broken hearted and struggling.

Your soul has been ripped apart as you stare down at the tattered pieces of your heart.

The pain sears your soul leaving you tender, hurt, and confused.

All that you knew changed in an instant and you're left not knowing where to turn or what to do.

You fell into a spiral of lost control frantically grasping to regain your footing.

I've been where you are now. My soul was torched, my heart in pieces, and my spirit broken. I didn't know what to do. My sole remaining purpose was just to survive. My mind couldn't handle more than mere survival. I was trapped, suffocating in my heart break, desperately clawing at my own spiritual grave. Clawing for relief, for light, for healing.

One day my heart mended enough that the suffocation began to lessen bit by bit until one day I burst forth from my grave and found myself soaring with the strength of the eagles. A transformation was taking place but it could only occur after the flames of soul searing pain had burned long and hard until finally extinguishing themselves.

With a new found strength I realized I deserved better. A better state of mind, better days, a better life. I accepted that I deserved happiness and that I could create my own happiness by being true to myself. I learned to accept myself, to do things for myself, and to follow my heart. I was only able to learn these lessons though after I felt my pain and survived it. I was stronger and better for it.

Your days may be long and your nights hard. Your tender heart vulnerable in its current state. But you will not remain here. You will burst forth from the flames that presently surround you. You will survive and be better for your heartache. Let yourself feel the pain so that you may process the pain. Take the time you need for self-healing and self-loving. Make this part of your daily ritual for self-care.

This is your time, your life. No one can steal this grand moment in the making from you without your permission. Savor this moment, relish in your self-worth. You are worth it and so much more. You are not your heartache. You are a survivor with a story to tell and a life to create.

Saturday, February 27, 2016

Chronic Fatigue

chronic fatigue life's a polyp

With a hemoglobin of 9.4 that has likely continued to drop, I'm experiencing chronic fatigue due to iron deficiency anemia. Without enough iron the body is unable to produce enough hemoglobin, which creates red blood cells to carry oxygen throughout the body.

Common symptoms of anemia are
  • weakness
  • fatigue
  • shortness of breath
  • difficulty concentrating
  • very pale appearance
  • grumpy or cranky affect
  • headaches

I'm basically running on an empty tank. It doesn't matter how much I sleep or rest, I'm constantly drained of my energy. Moments of rest or sleep are only temporary fixes that quickly lose their power within minutes. I continue to function with the best of my ability and at times it's all I can do to remain awake. My daily life suffers, my job suffers, and I suffer. And yet, unless you've experienced chronic fatigue it's hard to imagine what it is like for that person.

Even when others are aware of anemia or other conditions causing chronic fatigue, it is hard to fathom the depth of fatigue one experiences. I'm regularly asked if I feel any better than I felt the previous day as though a night's rest will make the difference in my hemoglobin or fatigue. I appreciate the thoughtfulness and care of friends and family but unfortunately a good night's sleep isn't going to do the trick with the chronic fatigue caused by my anemia.

Every day is a struggle. I awake from a restful night's sleep only to feel drained again within 30 minutes, begging for a nap. I must force myself to stay through the workday without leaving early just to sleep. If I sit too long I'm overcome with tiredness and my eyelids become heavy, begging to close for a few moments of rest and hopeful sleep. All I think about is how much I want and need to sleep.

My activities are limited and my social life is virtually non-existent. I just don't have the energy for talking, visiting, or participating in social activities especially if they are later in the day. I want to spend time with friends and family but the mere actions of responding to an email or reading a letter taxes my energy. Every task becomes an "I will do it later" action as I attempt to preserve my energy like a precious liquid that is evaporating before my eyes. Even thinking has become a chore as it becomes more and more difficult to think clearly and to focus on what is being said or done at the moment.

When interacting with those of us with chronic fatigue please understand we aren't going to feel better after getting much needed rest. The fatigue stays with us, it's a constant companion until we're able to resolve the underlying cause of the fatigue. And unfortunately, not all of us will be able to resolve the underlying cause. We apologize if it takes us longer to respond or to socialize, we're simply in survival mode at this point. We're pushing forward the best we can with the least amount of interference possible.

Thursday, February 18, 2016

When Your Doctor Doesn't Believe You

when your doctor doesn't listen to you life's a polyp

Last year my pediatric GI doctor of over 20 years decided to push me out of the nest and transition me to an adult GI doctor. During my hospitalization last year I faired well with the change in doctors as my new doctor and I started the song and dance of a newly established patient-doctor relationship.

My doctor specializes in short bowel syndrome, which is one of my conditions courtesy of my surgeries related to Familial Polyposis. At my appointment three months ago, my doctor explained that I have the proper sections of my small intestine required for absorption of iron and B12 and therefore do not require these medications. My hair stood on end, I knew differently. I've been taking these medications since my first surgery at age 9. I knew better. However, in a stubborn fit of wanting to prove my self knowledge and gaining my doctors trust in my knowledge, I agreed to forgo my medications for a three month trial.

I was unable to complete the three month trial without my B12. I began to experience exhaustion, sensitivity to light, and numbness in my extremities. I began to worry about the security of my employment under these conditions as well as my daily ability to function. Two weeks prior to the end of the trial period I restarted my daily B12 microlozenges and started to return to my previous state of health. However, I was able to forgo the iron the entire three months.

Lab day came and it was a show down between my doctor and me. Who would be right, who knew me better? He argued my iron and B12 wouldn't drop much in the course of three months from where my levels previously had been.

My B12 was excellent at 793...but I also had restarted my B12 two weeks earlier. With the results skewed, we'll never know how low it had been. I'm okay with that...I was more worried about my iron at this point. 9.4 with a saturation of 2%. Ding Ding We have a winner. Without an ounce of surprise my body held true to its trends. I do require iron and B12 and was ordered to immediately restart my iron.

At my appointment I requested an ultrasound of my thyroid as annual screening is recommended due to the elevated risk of thyroid cancer associated with Familial Polyposis. My doctor found annual screening to be overboard but nevertheless consented. I'm grateful he proceeded to order my thyroid ultrasound for that day as a small solid nodule was found in both lobes of my thyroid. Although most likely benign, it will be important to continue monitoring these nodules as solid nodules have an increased risk of malignancy compared to non-solid nodules.

With my body following my expectations, I'm hopeful that my doctor has gained trust in my self knowledge and understanding of myself.  My body doesn't follow textbook protocols and never has. The sooner my doctors realize and accept this reality the better it is for my care. Perhaps now he will listen to me more with less argument about what my body does.

Sometimes doctor-patient relationships require give and take from both parties as the relationship grows into a partnership for care. Any new doctor-patient relationship may experience a few bumpy courses as both parties are learning the ways of one another and progressing toward a mutual understanding. If you are finding yourself on a bumpy course with your doctor, be open with your doctor about your concerns and work toward a compromise together. Although my doctor doesn't always see eye to eye with me, I'm grateful that he has been cooperative with my medical requests as our relationship becomes cemented.

Monday, February 8, 2016

Healthy Habits

creating healthy habits life's a polyp

I lie on the floor with my arms by my sides, breathing in through my nose and out of my mouth, my mind clear. My breathing focused and my spirit calm. My body is heavy against the floor in this relaxed state known as corpse pose as I complete another day toward a healthy habit.

 It takes about three weeks to turn a behavior into a habit. Sometimes that three weeks is a long time when you're trying to build healthy habits. I'm not the exercise or even constantly healthy eating type. My commitment to such healthiness is sporadic. I abhor exercise and I have strong cravings and lack of self-control for the food I love. I go through cycles of increased healthiness after a bout of gluttony and laziness. I'm starting on an endeavor of health consciousness - involving daily yoga rituals and healthier eating. And I feel great (well, for the most part for me)! Some days I have to force myself to exercise but the longer I do this the less of a thought out plan it becomes and instead progresses toward becoming a habit.  I've learned a few things with my recent dedication that I'm aiming to turn into habit.

Self care involves more than tending to the mind and spirit but also the body.
The ultimate goal is to build a strong mind and body.

By nourishing my body with exercise in the form of yoga and healthy foods I'm helping to nourish my mind. This time is rewarding as I set it aside for 'me time' to focus on myself and let go of the worries of the world. The beauty of yoga and similar exercises is that relaxation and meditation moments are built in as the body connects with the spirit. Each pose focuses my mind and breathing. My attention placed on the within rather than merely the physical strength each pose demands.

My body welcomes fresh foods rather than processed and high fat junk foods. The flavor of a balanced meal becomes rewarding in itself and my body appreciates the healthiness with added benefits of no longer feeling bloated or sluggish. Previously when I followed the Anti-Inflammatory Diet my body quickly detoxified itself, losing weight rapidly, and improving my health within days of cutting out unhealthy foods. The difference in how my body felt before and after was remarkable. Staying hydrated is a challenge for me at times due to how quickly my stomach becomes full resulting in stomach cramps. I have been working hard to drink at least the minimum recommended amount of water everyday and I'm noticing improvements as I'm rewarded with hydration and further detoxification.

It can be difficult to change our habits, whatever they may be. But it can be very rewarding to change old habits and create new ones, particularly when it is for the betterment of ourselves. We deserve self-improvement and the effort that is required for self betterment is always worth it in the end. We just need to remind ourselves to continue to push through. We'll love ourselves for it later.