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November 2015

Explain the tests: Complete blood count (CBC) – Low red cell count (Part two)

The process of making red blood cells is called erythropoiesis.  Mature red cells live in the blood for 100-120 days before they die.  As they get older, red cells are removed from the blood stream.  A small amount of red cells burst in the blood stream before they are removed.  This is called hemolysis.  Most red cells are removed by special white cells called macrophages in the liver, spleen and lymph nodes.  When the production and destruction of red cells are not balanced, red cell count is abnormal.

Red blood cells (erythrocytes) are responsible for transporting oxygen from the lungs to the tissues.  Red blood cells have lots of hemoglobin inside their cells.  Hemoglobin is a protein that has a form of iron at its center called heme.  Hemoglobin binds oxygen so that it can be brought to other parts of the body.  When red blood cell count or hemoglobin is low, the body cannot get enough oxygen to the tissues.  This is called anemia.

A number of conditions can cause low red blood cell count.  They can be placed into three categories: not making enough red blood cells; breaking down too many red blood cells; and blood loss.  Additionally, changes in amount of fluid in the blood stream can artificially alter red blood cell and hemoglobin levels.

Normal range for red blood count:

  • Adult women: 3.9-5.0 million cells/µL
  • Adult men: 4.3-5.7 million cells/µL

Reasons for not making enough red blood cells:

  • Low levels of erythropoietin, a molecule that tells the bone marrow to make red cells
  • Deficiency or abnormality of hemoglobin
  • Nutritional deficiency
  • Damage to stem cells
  • Inability to make red cells from stem cells

Some conditions that interfere with making enough red blood cells:

  • Viral infections, such as parvovirus B19, herpes viruses and hepatitis. Some viruses induce pure red cell aplasia, which affects the cells that become red blood cells.
  • Overproliferation of white cells, such as lymphomas, leukemias, autoimmune lymphoproliferative disease. These conditions can also induce pure red cell aplasia. If too many of one cell type is in the bone marrow, it reduces the space for other cell types.  In this example, too many white cells are produced, so there is not enough space for red cells.
  • Myelodysplastic syndromes. In MDS, the stem cells that develop into blood cells are thought to harbor damaging mutations.  The process of making blood cells is very disordered in MDS.
  • Aplastic anemia. In aplastic anemia, blood stem cells are damaged.
  • Deficiency of vitamin B12, iron or folate. Iron deficiency interferes with production of hemoglobin, while B12 or folate deficiency prevents normal cell division to make new cells.
  • Chronic kidney disease. Kidney cells release erythropoietin to stimulate making new red cells.  If the kidney cells are damaged, they may release less erythropoietin.
  • Chronic inflammation. Chronic inflammation can interfere with absorption and use of iron.
  • Thalassemia causes hemoglobin to be misshapen.
  • Medications, like mycophenolate.

Reasons for increased destruction of red cells

  • Misshapen red cells
  • Abnormalities of red cell membranes
  • Hemoglobinopathies, conditions in which hemoglobin is defective
  • Attack by antibodies
  • Mechanical damage

Some conditions that cause increased destruction of red cells:

  • Hemolytic anemias. This is a general category that encompasses many conditions, including antibody mediated hemolysis, enzyme deficiencies and membrane abnormalities.
  • Membrane abnormalities, like in G6PD deficiency (favism). The membrane is weakened in this condition.
  • Hereditary spherocytosis and hereditary elliptocytosis. In these genetic conditions, red cells are misshapen.
  • Antibodies targeting red cells, such as autoimmune hemolytic anemia and transfusion reaction.
  • Hemoglobinopathies, like sickle cell disease and hemoglobin C disease. Enough hemoglobin is made, but it is structurally abnormal.
  • In this condition, there is a genetic mutation that interferes with production of hemoglobin.
  • Mechanical damage, such as in hemodialysis or malaria. In these conditions, the red cells die for physical reasons.

Reasons for blood loss

  • Trauma or surgery.
  • Gastrointestinal bleeding. This can be caused by inflammatory bowel disease, ulceration, varices or infection.
  • Excess blood loss due to menstruation or fibroids
  • Anemia of prematurity. This is caused by the need for frequent blood draws for testing coupled with low production of red cells by premature babies.

Situations that cause artificially low red blood cell count:

  • Pregnancy, due to increased blood volume.
  • Hypervolemia, from high water or sodium consumption or retention.
  • Hypervolemia, from recovery of third spaced fluids.


Special notes on low red cell count for mast cell patients:

  • Many mast cell patients suffer from anemia of chronic inflammation, which can result in low red cell count.
  • Some patients have inflammatory bowel disease, which can result in low red cell count.
  • Swelling of the spleen (splenomegaly) can cause low red cell count.  Splenomegaly is a B finding for SM patients.  Two B findings result in diagnosis with smoldering systemic mastocytosis (SSM).
  • Overactivity of the spleen (hypersplenism) can cause low red cell count.  Hypersplenism is a C finding for SM patients, resulting in diagnosis with aggressive systemic mastocytosis (ASM).
  • Use of some chemotherapy drugs can impair production of blood cells, including red cells.


Explain the tests: Complete blood count (CBC) with differential and platelets (Part One)

A complete blood count (CBC), also called full blood count (FBC) in some countries, is one of the most frequently ordered diagnostics.  A CBC quantifies and describes the types of cells found in the blood.  These cells include white blood cells (WBC, also called leukocytes), red blood cells (RBC, also called erythrocytes) and platelets (also called thrombocytes).

There are two commonly methods for counting blood cells, automated and manual.

In automated counting, the cells are counted by a machine called a flow cytometer.  Flow cytometers identify cells by shining a laser through a sample of the blood and using the way the light bounces off the cells to determine what kind of cells they are.   This bouncing of light is called scatter.  Flow cytometers measure forward scatter determines the diameter of a cell.  Side scatter determines granularity, how many granules are inside the cell. While this method is generally quite precise, if a cell is not shaped normally, the flow cytometer may count it incorrectly.

In manual counting, the blood is diluted and placed into a special chamber with grid lines called a hemocytometer.  The chamber is viewed under a microscope and the cells are counted by eye.  As someone who has counted lots of cell suspensions by eye, it can be hard to be exact.  This method works for red and white blood cells.

To evaluate abnormality in cell shape, a blood smear is made from the original blood sample.  A smear slide is made by smearing a thin layer of blood onto a glass slide.  Once the blood is dried on the slide, stains are then used to colorize the cells to make them easier to see and distinguish.  Giemsa is a commonly used stain for this purpose (fun fact: mast cells can be visualized with Giemsa stain).  Other stains can also be used. This method allows abnormalities in shape of red and white cells to visualized.


A CBC usually includes the following tests:

Total white blood cell count

  • The count of all white blood cells in a volume of blood;
  • Unit is cells/liter

Total red blood cell count

  • The count of all red blood cells in a volume of blood
  • Unit is cells/liter

Hemoglobin (Hb)

  • The amount of hemoglobin in a volume of blood
  • Unit is grams/deciliter

Hematocrit (Hct; also called packed cell volume, PCV)

  • The portion of a volume of blood that is red blood cells
  • Unit is percentage

Mean corpuscular volume (MCV)

  • The volume occupied by red blood cells in a volume of blood
  • Identifies if red cells are the right size
  • Unit is femtoliters/cell

Mean corpuscular hemoglobin (MCH)

  • The average hemoglobin in a red blood cell in a volume of blood; the amount of hemoglobin divided by the red blood cell count; mass of hemoglobin divided by number of red blood cells in a volume of blood; unit is picograms/cell
  • Mean corpuscular hemoglobin concentration (MCHC): the average concentration of hemoglobin in a volume of red blood cells; determines size of red cells; hemoglobin divided by hematocrit; unit is grams/liter

Red blood cell distribution width (RDW)

  • The amount of variation in the size of red cells
  • Can only be high or normal
  • High RDW means red cells show a wide range of size

Reticulocyte count

  • The amount of new red cells in a volume of blood
  • Unit is percentage


A CBC with differential and platelets will include the following tests:

Neutrophil count

  • The count of neutrophils in a volume of blood
  • Neutrophils are inflammatory cells that fight infections and initiate inflammatory response
  • Unit is cells/liter

Lymphocyte count

  • The count of lymphocytes in a volume of blood
  • B cells, T cells and NK cells are lymphocytes that detect pathogens in different ways
  • Unit is cells/liter

Monocyte count

  • The count of monocytes in a volume of blood
  • Monocytes respond to inflammatory signals and develop into specialized tissue cells
  • Unit is cells/liter

Eosinophil count

  • The count of eosinophils in a volume of blood
  • Eosinophils fight parasites and participate in allergic response
  • Unit is cells/liter

Basophil count

  • The count of basophils in a volume of blood
  • Basophils fight parasites and participate in allergic response
  • Unit is cells/liter

Platelet count

  • The count of plateletsin a volume of blood
  • Platelets stop bleeding
  • Unit is platelets/liter

Mean platelet volume (MPV)

  • The volume occupied by platelets in a volume of blood
  • Identifies if platelets are the right size
  • Unit is femtoliters/platelet

How to travel with mast cell disease

My travel tips:

1. If you stopped traveling for health reasons, talk to your health providers when you want to start again. If you would receive emergency care at another hospital, it’s important to discuss exactly what that should look like.
2. Get fit to fly letters that detail what medications you need to carry onboard with you and emergency protocols on letterhead from your doctor. If possible, get multiple originals (with original signatures) rather than an original and copies. If traveling abroad, it is helpless to have them notarized.
3. Always carry rescue medications, emergency protocol and “Greatest Hits” sheet listing your diagnoses, daily meds, rescue meds, and any special precautions. You should do this everywhere, but it is especially important if you are traveling. If you take over the counter meds, they should be listed as well.
4. Make sure that it is legal to transport all of your medications to the destination. Some medications are illegal in certain countries, regardless of whether or not it is for your personal medical use. Of note, diphenhydramine (Benadryl) is illegal in some countries.
5. Find out if your medications are available at your destination. If they aren’t, identify an alternative.
6. Call the airline directly to describe your needs. Many airlines have seats with more space (bulkhead) that are preferentially given to people with medical issues so you have more room for meds/supplies. If you have need to use medical equipment during flight (like an infusion pump), tell them when you call and have the model number/serial number handy. Airlines will refrigerate medication for you if you tell them in advance.
7. If you are triggered by standing for long periods of time, lifting your carry-on, walking, etc, ask for a wheelchair to meet you at check-in and take you to the gate. In my experience, if you have a ton of meds/liquids with you, going through security is easier if are in a wheelchair.
8. Get to the airport early. I always go at least an hour before recommended. If you have made requests for assistance (like a wheelchair), you will not be able to check-in online.
9. Expect to have to tell your story at the check-in counter to at least one employee and their supervisor. Even with the notes added when you called the airline, you may still get push back when you check in. This most often occurs in the form of restrictions applying to your carry-on.
10. Remind them that you are allowed to bring extra luggage onboard if it contains medication/medical supplies. I infuse while flying so I have to wear a backpack at all times that holds the bag attached to my port line. Sometimes, they will count this backpack as one of my carry-on items and say I can only bring one more piece aboard. Again, you are allowed to bring extra luggage aboard if it contains medication.
11. Be reasonable with the extra luggage. Only bring aboard what you really need. When I flew to and from Hong Kong, I had a carry-on packed with all my meds in labeled containers, supplies to access/dress my port, and three days worth of IV bags and supplies to spike and remove air from IV bags. This would be enough that in an emergency where everything else was lost, I would have enough IV meds/supplies to fly home.
12. Pack medical supplies in hard shell luggage so that things don’t get crushed or broken.
13. Pack everything you need for the day in a separate bag and keep it in your purse. This is much easier than getting the luggage down in flight.
14. Bring safe foods. Do not expect to be able to eat on the airplane if you have severe food issues. You are allowed to bring some foods through security.
15. Expect that going through security will be time consuming. It will be. If you have medical implants/devices like central lines or ostomies, tell them before you go through the metal detector.
16. They will definitely pat you down, open your luggage and swab everything for explosives. Show them the letter stating that you need to bring these medications/supplies onboard.
17. When you arrive at the gate, ask at the counter to board early.
18. If you are sitting in the bulkhead row (no seats right in front of you) and you have an infusion pump/backpack, tell the flight attendant when you board. What happens next depends on the flight crew. Sometimes they will want you to switch seats for take off and landing since you can’t stow the backpack under the seat. Sometimes they will let you hold the backpack like a baby. Sometimes they will let you buckle it into the seat next to you.
19. If your pump will be on during take off and landing, if the flight attendant asks about it, tell them that you spoke to the airline previously and that it is medically necessary. It is safe for the pump to be on during take off and landing.
20. Hydrate like it is your job. Flying is seriously dehydrating and can really exacerbate GI motility issues.
21. I premed 24 hours and 1 hour before the flight with steroids, diphenhydramine, ranitidine and montelukast, just like for before surgery. I am most reactive during take off and landing, so I am careful to premed with enough time for the drug to be active during these times.
22. If my flight is longer than the window of these medications (3-4 hours), I medicate again an hour before landing. Please check with your doctor to determine what is the best medication protocol for you to provide additional coverage for flying.
23. I infuse IV fluids while flying as it helps stabilize my blood pressure.
24. I take extra diphenhydramine (Benadryl) for at least two days after flying. I also do a short taper to get down to my baseline steroid dose (I have adrenal insufficiency).
25. I take extra stool softener for a few days before flying and a few days after to avoid worsening GI issues from dehydration.
26. Call the hotel before you book to discuss options for food and cleaning supplies, and anything extra you may need, like a refrigerator or safe. If you will be eating primarily at the hotel, speak with the Food and Beverage manager to identify some safe options for you prior to arrival.
27. Plan around your need to sleep. Flying is very triggering and you will likely need a lot of sleep to recover. Plan some days (or at least parts of days) with empty blocks of time for you to nap and rest as needed. About 1/3 of the days I spent in Asia were spent sleeping or awake but in bed.
28. If I am traveling domestically, I often ship supplies/meds to my destination so I don’t have to worry about carrying everything/luggage getting lost. You can ship medication to yourself in the US as long as you are the end user. For example, when I visited my friend Christen, I sent a package to Lisa Klimas c/o Christen [Christen’s last name]. Having done this with multiple operators, my best experience has been with the USPS. They were half as expensive as UPS or FedEx and the only operator to deliver the package on time (I ship overnight because I have refrigerated meds).
29. Discuss with your doctor whether it is appropriate to bring antibiotics/antivirals with you on your trip in case you develop an infection.
30. Identify a hospital at your destination in case you have an emergency.
31. If possible, have a copy of your doctor’s letter translated into the local language.
32. Try to be patient. Some days I am just so tired of fighting about shit with airlines but if you can stay patient, the likelihood of things working out better increases. It’s one thing to let a sick person fly, it’s another thing to let a sick and hysterical person fly.
33. If the flight crew is uncomfortable with you flying, they can refuse to let you on the plane. This is where having a fit to fly letter is very important. Emphasize that it is safe for you to fly and that if you have a severe reaction, you are capable of managing it on your own. If you are NOT capable of managing a bad reaction alone, I urge you not to fly alone.
34. Wear a watch that displays local time at your place of departure so that your med schedule doesn’t get blown up. If the time difference is substantial, you may need to take an extra med dose in the first 24 hours to align your nighttime meds with your new nighttime and morning meds for your new morning. Check with your doctor on how to manage this.
35. Have fun! Enjoy your trip.

Immunoglobulin free light chains: A possible link between autoimmune disease and mast cell activation

An antibody (also called an immunoglobulin) is shaped like a Y.  The base of the Y is called the Fc region.  The arms of the Y are made of pieces called light chains and heavy chains.  Light chains (described as K or λ) have variable sequences that allow the complete antibody to stick to specific things, like bacteria or allergens.  Light chains are part of how your body fights infections and responds to allergens.  Importantly, free light chains do not work as antibodies.  They are not able to stick to the target the way the total antibody can.

Antibodies are made by white blood cells called plasma cells, which are B cells that circulate and release antibodies as needed.  When producing antibodies, B cells normally make more light chains than heavy chains.  Only about 60% of the light chains made are needed to produce antibodies.  The rest of the light chains are released into plasma and are present there for 2-6 hours, until they are cleared by kidneys.  Light chains that are released into plasma are called immunoglobulin free light chains, shortened as Ig-fLCs.

Another way Ig-fLCs are formed is when they antibody is bound and degraded by a cell.  Antibodies bind things like allergens.  Once they bind allergens (or something else), the antibodies can then bind to receptors on the outside of cells to tell the cells what they found.  Once the antibody is bound to the receptor, it can be partially broken down.  However, light chains are not damaged in this process, and they may be released back into serum.

Ig-fLCs are the subject of ongoing research in various disease models.  Ig-fLC elevation has been linked to a number of inflammatory conditions, including autoimmune diseases.  Systemic lupus erythematosus (SLE) patients demonstrate a significant elevation of Ig-fLCs in urine 4-8 weeks prior to a symptomatic flare.  SLE is an antibody driven disease and the extra Ig-fLCs may be produced as a byproduct of making more autoantibodies in advance of a flare.  In this capacity, it would demonstrate hyperactivity of the B cells that make the autoantibodies.

Ig-fLCs were also found to be elevated in 1/3 patients with rheumatoid arthritis and 1/5 patients with systemic sclerosis.  A number of cancers also induce elevation of Ig-fLCs.

Ig-fLCs are involved in a number of allergic processes.  In allergic asthma animal models, Ig-fLCs have been found to induce bronchoconstriction and acute mast cell degranulation.  Using an experimental light chain antagonist can prevent this reaction.  Κ light chains are elevated in serum of asthmatics, regardless of whether or not the asthma is atopic is nature. λ light chains are not elevated in this population.

Ig-fLCs are also involved in other allergic mouse models, including contact dermatitis, food allergy and inflammatory bowel disease.  In these models, the Ig-fLCs can sensitize mast cells to allergens so that exposure to the allergen causes mast cell activation and degranulation.

Ig-fLCs have also been implicated in mast cell dependent colitis and inflammatory bowel diseases such as ulcerative colitis and Crohn’s.  It is believed that antigen specific Ig-fLC sensitizes mast cells to cause activation and degranulation.  This is especially important because it describes a mechanism that occurs in the absence of IgE.  Serum κ and λ light chains are elevated in Crohn’s models and using an experimental blocker prevents these bowel symptoms.  Research has indicated that the IgE, IgG and paired Ig-like receptor A receptors are not involved in binding Ig-fLCs in these models.

Many mast cell patients have a primary inflammatory condition, such as IBD or autoimmune disease.  Mast cell activation via Ig-fLCs is, to me, the most plausible explanation for this relationship.  Currently, mast cell activation by Ig-fLCs has not been demonstrated in humans, though present in many animal models.  However, Ig-fLC correlation to autoimmune diseases such as lupus has been shown in humans.


Kraneveld A, et al. Elicitation of allergic asthma by immunoglobulin free light chains. PNA 2005: 102(5); 1578-1583.

Thio M, et al. Antigen binding characteristics of immunoglobulin free light chains: crosslinking by antigen is essential to induce allergic inflammation. PLoS One 7(7): e40986.

Rijnierse A, et al. Ig-free light chains play a crucial role in murine mast cell-dependent colitis and are associated with human inflammatory bowel diseases. J Immunol 2010; 185:653-659.

Gottenberg JE, et al. Serum immunoglobulin free light chain assessment in rheumatoid arthritis and primary Sjogren’s syndrome. Ann Rheum Dis 2007; 66:23-27.

Aggarwal R, et al. Serum free light chains as biomarkers for systemic lupus erythematosus disease activity. Arthritis Care and Research 2011: 63(6): 891-898.

River stones

The day I was diagnosed, I left the hospital holding a piece of scrap paper with notes all over it. I occasionally come across it again while looking for reports in my massive collection of medical documentation. The paper is soft along the folds, but the ink is still bright. Words jotted down haphazardly surround a crude drawing of a mast cell heavy with granules. Words to explain my disease and its accompanied wreckage.

These words meant more than too many mast cells, too much activation. They meant the pain and stress of being sick. They meant all the things I had lost. They meant fear and loneliness. They meant desperation and need for validation. They meant that this was real and that meant that it wouldn’t go away. The words were arbitrary. They had no power on their own. They had power because of what they represented in my mind.

In the weeks that followed diagnosis, I said the words out loud when I was home alone. I turned them over in my mouth until the edges were smoothed, the jaggedness smoothed like a river stone.

I arrived in Beijing on Tuesday afternoon. It was cold and raw there, the kind that makes every movement feel heavy and dully painful. The city was overlaid with soft fog, fluffy and moist. It looked sleepy. Our wonderful tour guide apologized for the poor visibility but I liked it, this ethereal dressing. In fairy tales, that’s where magic happens.

On Thursday morning, we went to the Mutianyu portion of the Great Wall. We walked up to a cable car that delivered us into the heavy mountain fog. We made a short climb up slick stone steps to reach the wall, visible only in glimpses through this wet cover.

The shrouding was so complete that I could almost believe that if I stepped off the wall into the fog, I just might disappear. We were high above the world. We were in the sky.

There was a sharpness to walking through the mist in this place that had borne witness to eons of man. I can’t find the right words to express how it felt to walk along the Great Wall. If let down was a positive feeling, it might feel like that. I was awestruck by this experience. It could not have been more amazing for me. It feels like putting down something I carried for so long that my body began to accept it as its own. It is the knowledge that after so long, I will never again see the Great Wall for the first time because I already did.

I saw the Great Wall after years of doubting I would see it at all. I did this impossible thing. I wanted to cry tears laden with the salt of all the impossible things I had hoped for in that place where it seemed the very mountains were crying, too. Hope is the only way forward, but it can be so, so heavy.

Our tour guide explained the function of the Wall, its amazing length and structure. It was designed to prevent invaders from returning, watchtowers manned with sentries. It surprised me that the mountains themselves weren’t enough protection without the wall. I’m not sure that the wall was ever any better than the mountains alone. But the people believed it did and that made them better. Maybe it gave them hope.

A lot has changed since I was diagnosed. The words I smooth are different now. They are still painful. But if I think of the coolness of the stone, the feeling of another world encroaching, the realization that dreams come true, maybe when I say these words, they can mean that, too.






Just before waking

For most of my life, I have seen things in that creeping inertia toward sleep. Figures made of vibrating inkiness would move towards me until I screamed and jumped in the moment before we touched. I would shake my head from side to side and rub my eyes like an incredulous cartoon character while my pounding heart slowed.

The shapes I saw never existed outside of that thin slip of time that bounded waking from sleep, but logic is not enough. It didn’t matter that I knew that these were hallucinations. The panic was real.

From the moment I decided to visit China, I was panicking. I fretted about bringing medications, transporting IV bags, getting medical notes, dealing with the airline, the weather. Everything was a variable I could not control. The mental invention I could muster to frame worst case scenarios was impressive. Every obstacle brought fresh waves of anxiety until I believed I may never get there. I worried and worried and worried.

By the day I was set to fly to China, my fear had reached fever pitch. What if the airline staff wouldn’t let me carry my supplies onboard? What if I need an epipen? What if my port clots off? What if I can’t reaccess my port? What if all my IV bags pop? What if I have a severe reaction during the sixteen hour flight?

I had actual nightmares that I would arrive in China to discover all of my medication bottles were empty. In the half slumber just before waking, vignettes of my illness destroying this trip paraded before my eyes.

Late on November 2, I went to Logan Airport with my new matching luggage and checked in for my flight to Hong Kong. As anticipated, there was some trouble with getting approval to bring my critical supplies and meds as my carry-on luggage. Lots of calling supervisors and discussions. At last, a supervisor walked over to us. In his hand was the printout summarizing my health conditions and necessary accommodations. I could bring this small piece of luggage onboard with me.

Things went much better from that point. A wheelchair was brought to transport me to the gate. TSA gave me no trouble. I boarded the plane first to get medicated and settled. A flight attendant came over, holding a copy of my medical approval form.

“It says you have ‘mas-to-cy-tro-sis’, this is right?” she asked warmly.

“Yes, that’s me,” I said, fighting with my infusion pump.

“This word does not mean anything to me. How can we help you during this flight?”

“I’m fine, I can handle everything myself.” And I was fine and I could handle everything myself. I manage my disease everyday. There was never anything to fear.

After we took off, I laid back and fell asleep for nine hours. I flew over the North Pole and landed in Hong Kong without any trouble.

I have been in Hong Kong for five days. I am very tired. I am very sore from the flight. I am reacting mildly. It is hot and hazy here, the air like droplets of lead weighing everything down. I can eat almost nothing that wasn’t prepared at the house and need to nap every afternoon on top of sleeping 10-12 hours a night.

But I am here. I made it to Asia. I have seen the Star Ferry and the Peak, the bustling central area and the sun blazing through the fog over the South China Sea.

The nightmare is not that I would be sick in China because I am sick and will always be sick and being in China won’t change that. The nightmare is that I would wait so long to be “healthy” that I would never experience the blinding joy of going to the other side of the world. The nightmare is that my disease would prevent me from living a life of wonder and meaning.

You don’t need a good reason to pursue your dreams. It doesn’t have to be logical or convenient. You don’t need a plan. You just need to decide that you want things to be different and believe that they can be.

In a season when it feels like I have lost so much, I can no longer be controlled by these nightmares. And even when I’m queasy and sore, I am happy in those quiet moments just before waking.