I can recall in childhood my hands mysteriously swelling and remembering how painful they would get. I just assumed it was related to my Asthma getting ready to flare up. I remember having some difficulty swallowing and sometimes getting painful indigestion assuming it was related to food allergies.
It wasn’t until I was a grown adult, mother of three kids that things started to fall into place. I still had my hand swelling issues sporadically, but then it started in my face and feet. Another scary issue emerged about a decade ago with me having difficulties swallowing. Back then it was as if I had not chewed up my food enough. Now, it sometimes gets to the point the food gets stuck where I cannot swallow, cough it up or breathe.
My last incident with the swallowing was about three weeks ago when I went out to eat with my family. I had one of those moments of shear panic as well as embarrassment when I went to swallow and the food got stuck. I tried drinking and it came back up because there was no where for it to go. It even came out of my nose and I was scared because I couldn’t do anything productive for a short time, which felt like an eternity.
I have had worse moments in the past though. I remember going to a WIC party for my youngest son at the local health department about six years ago and eating, then my food getting lodged in my throat. I was in horrible pain, could not swallow and I couldn’t drink anything. One of the nurses took my son so I could go to the bathroom. I couldn’t cough it up and I was trying to force myself to throw it up and I couldn’t. After about 30 minutes of going back and forth to the bathroom, I finally was able to swallow.
Why I have waited so long to do something about things is for several reasons. There were times I did not have insurance, I don’t like doctor’s offices and I honestly thought no one would believe me.
Then recently, things had started to get more mysterious. Every so often when I would get in the shower, my face, lips, hands and/or feet would just swell. I first assumed it may have been from shampoo or soap or even what the towel had been washed in. However, all the soaps used had been soaps I have used for a very long time. Still though, I thought no one would believe me.
A few days ago during a shower, the right side of my face really started swelling and then my lips. It was scary to look at my face in the mirror. That same day I went out shopping with a friend and noticed my hands were mysteriously swelling. I tried pushing the shopping cart, which was a big mistake. My hands started really swelling to the point it hurt.
I waited about three days and then went to go get my allergy shots. It was then I shared with the nurse about the swelling issues. She immediately insisted I go make an appointment to get in to see one of the drs or FNP’s. Luckily for me there was an opening the next day. I still thought though that it would be chalked up to minor things.
Not so much.
I did my routine questionnaire thing, then the spirometer for my Asthma, which was great. Then the FNP came in and started asking me questions. See, I have been having constant (almost daily) indigestion. My throat is still swollen even after the incident weeks ago. I have also started having severe bouts of nausea almost to the point of vomiting. There are times I have had attacks of diarrhea for unknown reasons although I assumed it was either something bad I had eaten or something I had eaten that I could be allergic to.
After going over everything I have been experiencing, the FNP strongly suspects I have Angioedema. She immediately ordered blood work (like 6 vials). There is suspicion I have the hereditary form of AE, or HAE. My maternal grandmother had Lupus and I believe she also had angioedema as I remember her often being in pain from swelling.
For once I was relieved that someone believed me about the strange things going on with my body. It was scary though to read about what angioedema is besides what my FNP shared with me about it. My epi pen won’t work with attacks, if my throat starts swelling I have to immediately go to the ER and typical antihistamines will not work, which makes sense since I have remembered in the past taking antihistamines and still being miserable as all get out hours later.
In early 2013 I will be doing a more thorough food allergy test and also see a gastroenterologist.
For now, it is a wait and see game to see which form of AE I have and then go from there.