To the Broken Hearted

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.

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.

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.

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.

Camaraderie of Chronic Illness

For those of us with a rare disease or other chronic illness, it doesn't take much to relate to one another regardless of the diagnosis. Our commonalities create an instant bond, an instant understanding of another's life with chronic illness. We don't need the same diagnosis or even the same symptoms or experiences. We experience enough and know enough to have an idea of what life is like with that condition.

We Share a Medical Life

• We share many of the same symptoms across conditions.

               It isn't uncommon for us experience the same generic symptoms that sweep across the board of conditions. We often simply feel sick - that blah icky feeling that leaves you drained of energy and good health. We tend to have susceptibility to common ailments such as a cold or the flu. Fighting for our immunity is a known battleground for our health. We likely experience some type of chronic pain. Within subgroups of conditions, we share even more common ailments. Those within the GI condition group experience some type of stomach upset whether it's nausea, pain, or bowel issues. We have additional uncommon symptoms but we have a primary source of shared symptoms with different causes. But no matter what - we can relate.

• We share the balancing act between the medical and our daily life

              Our days are occupied with  an abundance of medications, medical appointments, and more frequent hospitalizations than those of the average healthy person. We know the burden of medical expenses and the absorbent amount of time required for managing our health. We relate to the frustration and demands of balancing medical obligations and our everyday life. We understand choosing between one activity over another because our body may not let us complete both choices.

• We share the struggle of disclosure

              Disclosure can be a tricky subject. Knowing what and when to share with the various groups of individuals in our lives isn't always easy. What and when do we share information with potential and present employers, potential romantic partners, friends and family? It can be difficult to know the right timing and amount to share our inner most health secrets. We share the same worries and concerns about if our disclosure will be met with understanding and acceptance or rejection and ridicule.

We Share a Personality

• We share important life lessons and virtues

               We know what it means to persevere, to have inner strength and determination. We've learned what it takes to survive and to survive on a daily basis. It takes real strength to not give up; to keep chasing our dreams and to make the most out of life. It's hard business keeping up with life when you're sick yet we manage to everyday.

• We share a deep appreciation for life and achievements

               We've learned not to take life for granted. We've all lost many loved ones with similar health issues. Repeated losses teach us to cherish everyday, especially the good days. And on those good days we're extremely proud of our accomplishments. It isn't always easy to achieve your goals when you're dealing with a chronic illness. We appreciate how far we've come in life in the midst of health issues and make the best out of each day that we can.

• We share with one another and support one another

               No one knows as well as another chronically ill person the difficulty that one faces on a daily basis. We share our stories with one another and we band together in whatever form available to create a strong support network. We honor and respect others for their achievements. We celebrate the victories of others, small or large, and we empathize during the bad days when life can be trying and discouraging.