Saturday, February 27, 2016

Chronic Fatigue

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

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

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.