New YouTube Channel!

I’m frustrated. Lots of crap going on lately so I’m inspired to start a place for us all to share and come together.

Please email me you videos so I can share them – hereditaryangioedema@gmail.com.

Let’s create a community and some visibility!

https://www.youtube.com/channel/UC3D3zkNP7JMDiEhwnyxDmVQ

First Firazyr

I woke up this morning with two swollen feet. Not one, two.  At least when only one foot is stretched and shaped like a huge baked potato, I can hobble about and suffer through it. With two, I could barely make it to the bathroom to brush my teeth.  It was time to try my Firazyr injection for the first time.

I think I have made it clear how much I hate sticking needles in myself. If I haven’t, I don’t think I need to–it sucks.

After the time I passed out trying to give myself an IV, I have learned that all needles must be inserted while I am lying down. So I got set up in bed, opened the package, and jabbed it in my abdomen.

Well, it wasn’t quite that dramatic, but sounds better.

Within an hour, my feet are starting to go down!  My biggest fear with an extremity swelling is that it is usually a precursor to an abdominal attack, so I’m hoping that by injecting for the feet, I can keep it from traveling. That would be amazing; I have a very busy week. (Daily Hot Guy shoot, I can’t miss that!)

I would like to thank the people at Shire for making my life easier. I hope this treatment works out, because it is SO much easier than the IV!

I guess taking a few liberties with my rigid eating this weekend was a bad idea–sometimes I just wanna enjoy what everyone else is. End of the day, it’s not worth being unable to walk on a holiday. I’ll stick to kombucha today.

Gluten Free at the Holidays? Sheesh.

I discovered ANOTHER major bummer about being gluten free–Christmas cookies. I didn’t have a single one. The light at the end of the tunnel, however is peppermint bark and fudge. I almost killed my brother in laws when they ate all the fudge and left the cookies on the very same day we received it. Jerks. They quickly made up for it by sharing their Toblerone, so I love them again.

On the upside, I will not gain any weight this holiday season. May be the first time ever, so that’s something pretty great.

Although there is no clinical reason to believe that being gluten free is helping my HAE, I will say that being gluten free is helping my HAE. There, I said it.  Of course now I’ll probably blow up like a balloon just to prove myself wrong. I wish there was a way to fund some research on the subject, because I really think there is something to it. It’s possible the daily homemade kombucha is helping too, but there is no way to know for sure. Does it matter? Not really. If I’m not puking, I’m not questioning.

Do you have experience with diet and HAE attacks? I’d love to hear from you.

 

The continued Kombucha experiment…

After the 30 days of Kombucha went so well, I was inspired by a friend to make my own.

First attempt was a bust, as the “Mama Scoby” didn’t quite do her trick. So after a trip to the Kombucha Kamp lady’s house for a new one, I was on my way. After 7 days I tried it last night–DELICIOUS!  I decanted it into 3 bottles–i Goji berry, one blueberry, and one fresh ginger. After another day I can taste those and check em out! So excited. I have a bottle of the plain in the fridge now, and I’m sipping on it all day–YAY!

Hopefully the home brew does my body as well as my beloved GT’s Kombucha does.

 

The Results

Yes, they both have it.

My pediatrician called with the results and said, “I have no idea how to read this test or tell you if they have it or not, I’m sorry…”

Luckily for me, Dr. Amazing is always willing to lend a hand, and checked them out for me. Turns out their levels are pretty much identical to mine which is sad, but slightly encouraging in that I was not really symptomatic until after puberty, and not really afflicted until my 20’s. By then “the landscape of this condition will be totally different,” said the doc. Gotta love a positive outlook. 🙂

So right now it’s just a matter of having a game plan for the “what if” or the inevitable “when.”

I swear, if my doctor ever leaves Los Angeles, we are following him wherever he goes.

Getting the kids tested

Yesterday was the big day–the only thing more nerve wracking than wondering if your children have a terrible disease, is figuring out how you are going to get the blood out of them to do the test at all.

My 7 year old will be fine, she’s a champ, but the 5 year old? I thought I was going to need a complete spinal adjustment after her last visit to the doctor–and that was a TB test!

I picked them up from school with snacks and smiles and told them where we were going. The little one immediately began to cry, so I distracted her with friends and play and whatnot for a few minutes before leaving. Once in the car, she did it again. “I don’t want to take blood!” I was getting nervous.

Once there she calmed down, then when the big moment arrived, the tears began to flow.  I took her face in my hands. “Honey, there are 2 ways this can go down. You can give her your arm, or they can hold your arm, but the second one will be scary for you. Do you understand me?” She nodded, buried her head in my chest, and thrust her arm toward the nurse.  The second the needle went in she started laughing and looked up at me. “That’s it?”  She watched her blood flow through the tube and felt very proud. “I want to call daddy, he’s going to be proud.”

I was so happy. Relieved. The nurses praised them and gave them stickers and we went for ice cream. I enjoyed feeling happy, because in 2-3 days I may receive the news I have been dreading since they were born. Fingers crossed.

30 days of Kombucha

I did it!

Almost every day, for 30 days, I drank a GTs Kombucha Trilogy or Gingerade, and I discovered a couple things…

1. I’m now totally addicted, and it may land me in the poor house

2. I was attack free the entire 30 days! NOW in all honesty, I made some dietary changes, AND it is totally random, BUT I’m thrilled.

So now I think I have to start making it. My husband is going to kill me, and I think I’ll have to hide it so he doesn’t throw it away.

The upside is that I get to waste a huge amount of time researching making kombucha instead of working–YAY!

HAE Convention Day

Breakfast at 7am. Really? In Vegas? OK, I’m there…

There are about 800 patients, family members, and caregivers in attendance–very impressive!  For a rare disease that only has about 6000 claimed in the US, 800 is a pretty impressive turnout.

I like talking to other people with HAE–I am so used to having people look at me like I’m crazy, it’s refreshing to have a chat about attacks and treatments without judgment. The patients are nice, the food is mediocre, and EVERYONE is smoking! Coming from California I am blown away by how many people smoke. I think I often forget about it in LA, because people seem to only do it in their cars and on TV.

It’s a jam packed day of information–insurance loopholes, costly new treatments, and Q&A with some of the best docs in the world (one of them is mine and I love him, but he deserves his own post).  I find myself in the gray area between relief to be in this room, and the reminder of what I have and where it can go. Education and preparedness are good, don’t get me wrong, but sometimes pretending it’s not there is just easier. The hardest thing to come out of the day was the realization that it’s time to have my children tested. This is a hereditary disease, and odds are, both my girls have it. Makes me sad, but I want them to be informed and ready–not scared and searching like I was when things got bad.

I drink hot tea, take notes, and chat with those around me. I feel inspired, and life is good.

 

HAE Patient Conference–VEGAS!

About 6 months ago my mother asked if I was attending the 2011 HAE Patient Conference in Las Vegas and I said “no.”

“Why not?” she asked.

“I don’t know. Kids, job, finding someone to go with me…”

“Dad and I will watch the kids so you and [husband] can go.”

I almost fell over, but I didn’t think twice–this is the first time they have ever offered to watch our 5 and 7 year old girls, so I made the reservations IMMEDIATELY and never mentioned it again.

Now I’m laying on a big bed watching reruns of “Friends” and playing Words With Friends on  my iPhone. Life is good.

 

 

Icatibant, I mean, Firazyr, is approved!

I am in a clinical trial at UCLA, and I received this drug–it’s amazing! Unfortunately, since the one time I received it, the trial is always closed due to budget cuts. It’s BS, yes, but what are you going to do. This is why I resorted to the IV infusion, which has been ok to crappy for the last few months and is a big, fat pain in the arse. Thankful, yes, but it has to get easier.

Firazyr has been approved in Europe for many years, but the FDA hesitated to bring it here (probably due to the fact that this is a rare condition and they can’t make hand over fist cash like they do on things like anti-depressants and diet pills, but that’s just my opinion).  Now it’s approved, and the fun part starts. It took me a YEAR to get my last medication in hand, so what do you think this one will be?  6 months?  Let’s make it an experiment–if I pretend it’s a game, maybe I won’t get mad that I don’t have it for months on end. 🙂

http://www.medpagetoday.com/ProductAlert/Prescriptions/28193