I love a full sound, a full orchestral sound. Your hairs stand and it feels as if the music is coming from inside and echoes, shakes, stirs, swirls around you – wrapping you in this cloth of sound.

It feels limitless, boundless.

This is my wish.

The last two weeks have been extremely difficult. I developed a cold that knocked me off my feet, fever, chills, mucous-clogged brain.

As my cold symptoms started to clear my lungs started to sound darker, deeper, and more unfriendly. I started two antibiotics that I have had on hand at home just three days after the onset of my cold symptoms.

Some antibiotics have this visceral affect as if the medicine is exploding inside, taking out the bacteria and everything else with it. Explosive coughing – sweat from my face, neck, arms, torso, to the point my clothes were sopping.

This past year I have been having this wonderful experience of coughing so hard, my diaphragm squeezes so tight, my gut muscles clench, and I vomit. The coughing continues into a spasm that I cannot stop. A week ago I vomited while driving. I was so thankful that I was close to my destination. Consequently, I have not been eating a lot, overall decreased appetite. My stomach has been tossed around so much; it doesn’t welcome a lot of food. I have vomited 5-6 times the last two weeks.

Facts:
– I have two non-contagious kinds of bacteria that I have lived with most of my life. In healthy people, you clear them out completely and have this beautiful natural ability of hydration and T-cells to fight against this bacteria, sometimes you need help, but often times you don’t. Since CF people have a debilitating cell structure, we can knock-down the population but it is hard to say for sure if it ever truly is extinct.
-When a CFer develops an infection, it is harder to get rid of, lasts longer, and has the ability to destroy healthy living tissue permanently.
-When taking antibiotics in effort to annihilate the population, new everyday bacteria are coming in as well. So CFers are trying to take out the old, while battling the new. When the antibiotics hit, I find myself on the couch staring off into space at times. All this activity is going on inside and my body needs to remain still and calm trying not to exert too much energy because my body needs it to battle the bacteria, and literally I have none to give.
-Often times a CFer will lose weight because fighting the bacteria requires more energy and calories, if you are aware of it or not.
-The coughing is completely exhausting and sometimes I pull side, back muscles.

New-finding:
-I have developed seasonal allergies. I think I have found the right combination of medications to calm down this explosive coughing I have been experiencing. My problems these last two-weeks are probably more related to allergies than CF. This makes me very happy. I am not happy about the allergies, but that my symptoms are more related to allergies rather than CF. And the only reason I developed a lung infection from the cold because mucus dumped into my lungs which is an uphill climb.

I do not think my body can live another 20-30 years in its’ current state. I am not being pessimistic, I am being realistic. When I am not feeling well, and I mean when I am coughing, sweating, my muscles are being pulled, and my diaphragm is squeezing me so hard from coughing I vomit – I know there is more to life than this. There is, it is just always getting there that is the challenge.

In truth, I am a hopeless, helpless optimist. I know, and have seen greatness, miracles. My body healed itself from arthritis – where I am no longer stricken by it. My body has the innate, automatic boldness to live, the will to live. This is something I cannot control. It explodes from my spirit – like the full orchestral sound.

I am not here to live another 20-30 years in my current state.

I am here to see a cure for CF.

It is expensive. It will be $200,000/year to cover the medication. I wonder if insurance companies will align it with cancer, cost-wise. I had a patient educate me that her insurance company categorizes her to be “catastrophic” and all her costs are covered in full. Not saying mine will be – that is for sure.

It is happening. It is happening soon.

My doctor from back home said to me in my teens that I will see a cure in my lifetime – I believed and trusted every word that came from him. He was my lifeline.

I will forever have to do my treatments, take my medications, be treated and help all my organs each day, and help and shake hands and meet each challenge in my life – that is my life’s constant, no doubt. And I may still only live another 20-30 years – but I will live with the cure.

It is happening. Everything that I am reading, I am holding onto the swirling, encompassing orchestral sound.

The headlines will soon read “Cure Found” – the new CF.

Cue the orchestra please.