Evelyn Jacobucci

Type of Porphyria: 
Acute Intermittent Porphyria (AIP)

I will attempt to describe what AIP feels like for me. I will never tell a stranger I'm in pain. There are even friends and family that I won't tell. My husband Sam can tell you that there are many nights I go to sleep crying because I've held it in all day. I have this ugly little thing called pride and I do not like to appear weak. I have heard many descriptions of the pain such as "flaming swords" and "lightning bolts" all of which are very accurate. I call it waves of agony since they like to recede for a bit and then come rolling back in. It never completely goes away. My nerves in my legs and arms are constantly reminding me that they are there and when an attack gets bad I cannot even be touched. Every little movement or touch feels like a severe burn, even clothes are uncomfortable. That is especially difficult for Sam who holds my hand through every hospital visit or rubs my back when I'm in pain. He has to stand back and watch me go through the pain until the meds have taken affect and then he can return to his post.  When the abdominal pain hits, it feels like I've been hit with a wrecking ball to the gut. My insides feel like they are on fire and cramping and trying to get out all at once. The pain is so intense that I become disoriented and confused. Even making the decisions to take medication or go to the hospital becomes muddled. Tylenol and Ibuprofen are like swallowing Tic Tacs, they never work. My head will pound and my eyes will ache, I will shake uncontrollably and become nauseous. Despite all of this level 10 pain I somehow manage to maintain composure amongst other people. I can go for days like this waiting for a chance to get in. I also have a firm rule that when we get to the hospital for my infusion I must WALK in under my own strength. If I have to take an ambulance I will ask to put in the upright position before being rolled in. I make a point to smile at the staff and joke with them even when I can hardly see straight. Because of this I am a favorite among the nurses and we have very close friends in the ER.  I have had over 200 IVs in the last 4 years. I have had over 800 liters of D10 (sugar water) poured into my veins. I and others with this disease do this every day and we try to be good mothers, fathers, siblings, wives and husbands, and we ARE! We also have some amazing support people around us! Spouses and parents and friends are crucial to our lives!