Searching for Acceptance

Three years ago my Mom was diagnosed with Interstitial Lung Disease and she was recently diagnosed with Pulmonary Fibrosis. Three years ago those words didn't mean anything to me because I didn't know anything about them and I was not yet working in the health care field. Today I do work in health care and regularly see those diagnoses on prescriptions for hospice patients and am scared and saddened to know this diagnosis is now connected to my Mom. I have always said I don't believe in coincidences and I don't think it is a coincidence that I work for a durable medical equipment provider and am familiar enough with oxygen equipment that I can teach someone else how to use it and troubleshoot problems. I know the day will come when my Mom will need oxygen.

I think I have cried every day since finding out her diagnosis. Most days I have this feeling in my gut of impending doom. I haven't carried that feeling around like a security blanket since I was a using addict who thrived on chaos. I am afraid, sad, angry, and hurt . . . and I am not the one who was diagnosed with PF. I feel selfish thinking about how much I already feel affected by this disease, yet I know a diagnosis like this affects not only the person with the disease, but family and friends who love that person as well. I think part of being an addict involves being somewhat obsessive/compulsive and I know that is certainly true for me. I don't like the unknown and while I can accept that there are things I will never know, I do make an effort to learn about things I can and that take up too much room in my head - like pulmonary fibrosis. Here is some of what I have learned so far:

A Snapshot of the Disease

• The disease affects 200,000 Americans; alarmingly prevalence has increased as much as 150% percent since 2001
• The median survival rate is only 2 to 3 years, and more than 2/3 of patients will die within 5 years
• There is no FDA-approved treatment or cure for IPF
• An estimated 40,000 people die each year from IPF – one every 13 minutes (the same number that die annually from breast cancer)
• An estimated 48,000 new cases are diagnosed each year
• IPF can affect anyone, but the disease tends to affect men more than women; the mean age at the time of diagnosis is 60-70 but can occur at any age
• IPF is 5 to 6 times more common than cystic fibrosis, yet it remains virtually unknown to the public, many policymakers, and even some physicians

I have also learned that there are some amazing people who also have this disease and instead of focusing solely on how it is affecting them, they share with and support others with the disease and those with a loved one who has the disease. Peg and Donna are two of these angels that God has brought into my life and who I pray will eventually be a part of my Mom's life too. I met them both through the Facebook page for the Pulmonary Fibrosis Foundation and they have both been such a blessing.

I don't want to focus on the fact that my Mom is going to die because if I do, I will miss out on the time that she still has left to live. I try not to give PF too much space in my head but it has made itself comfortable there and eviction is proving itself to be impossible. I pray a lot, although nowhere near as much as I think I should be, for God to direct my thoughts and to strengthen my trust in Him. This all feels so unfair, especially since I lost my Dad seven years ago, but I know God sees the whole picture and I only see a small part.

I wish my Mom would talk more about all this and about what she is thinking and feeling. I wish she would say that it is okay for me to talk about it. I have three sisters and don't even know if they understand what this diagnosis means or if it is okay to even ask them.

Dan and I are going to Eau Claire on Saturday because my cousin in town from Missouri and I really want to see her. Even more than that I really want to see my Mom and we will be getting together with her for lunch. I just hope I can hold it together, stay in the moment, and focus on the time we will have together and enjoy it. I don't want to fall apart and I know if I put this all in God's hands He will give me the strength to hold it together.