Wish Me Luck!

I'm starting sub-Q infusions tomorrow (at home) and I am so anxious/nervous/excited. Sub-Q means that I'm going to place small needles in fatty parts of my body (hips, thighs or stomach are the common places) and then I'll infuse the Ig product (very small amount) through 4 to 6 different spots! Once I start I'll have to do these infusions every week for the rest of my life, or until they come up with some new science. I'll try to take lots of pictures so you can all see my fun new equipment and what not - I hope the side effects with this product (Hizentra) will be minimal! Send me positive thoughts this weekend and I will do my best to keep you all updated!

Here is a picture of what my kit will look like - I was lucky enough to play with all these things at the conference so there won't be too many surprises tomorrow!

IDF - Phoenix, AZ

We have so much catching up to do! I don't even know where to start.

The most important thing to share is that I went to Arizona this past week for the National Immunodeficiency Foundation Conference which was amazing and overwhelming all at once. There were about 800 people who attended and we spent three days with the best immunologists from Johns Hopkins, Cleveland Clinic, Children's Hospital in Philadelphia, Mayo Clinic and many more. On top of that I got to meet hundreds of people who have PIDD and we got to share stories, compare symptoms and discuss treatment options. Most of the people at the conference have been doing treatment (IVIG or SCIG) for years and were so helpful in easing my anxiety about starting back up. We learned loads of information about the different IgG products, how they're made, what is put in them as a base, etc etc and how all of that can affect the body in different ways. Of course I wasn't surprised to find out that the IV product I used back in April was one high in sugar and had a history of severe side effects (what was my doctor thinking?) but it was a relief to know that the product I'm going to start is one of the easiest on the body! Ready to get rolling!

(Mom and I at the IDF Zebra Dinner)

(Igi the IVIG bear and me in the Baxter Castle!)

(Jamie, Colin and I - made so many new friends)

(The average temperature of Phoenix while we were there! So hot!)

Michael Buble!

Mom, Sue and I went and saw Michael Buble about two weeks ago!
The crowd was all different ages and it was really a lot of fun!
Here are some pictures of us at the show:

(and laugh)

In April I saw this story on ABC news and was just thinking about it and wanted to share with all of you. It is a Preschool in Washington that is completely outdoors and they get to play in the mud all day and just learn things about nature! What a wonderful way to spend your days when you're 4 and 5!!! They can say mud in 21 different languages, they go to the bathroom outside, they can explain composting and can do over 40 different bird calls! I am impressed and I want to join them! Hopefully this makes you smile!

Watch me!!! Click me!!!

Emotional Control

Dealing with a chronic illness and being away from school and friends has presented several challenges over the past year. There have been so many moments when my emotional state falls apart and I am left in a puddle of depression. People with chronic illnesses all experience this at some point but for me it began when I realized that my illness was really distancing me from those I needed most, my family and friends.

Last spring, when this “journey” began, my friends and I acted like nothing was changing.  We would get together and they'd ask how I was and I'd lie and say fine or act enthused about my new diet and we would continue on like before. I thought that acting this way would make things easier for everyone, especially myself. Of course, as months passed and my body started becoming weaker from treatments I was no longer able to participate in the fast paced collegian world with my friends. I would still say I was fine – because I knew on the outside I looked like myself but my body was falling apart on the inside. I started becoming the “no show” at parties more and more, or I would have to leave early from activities to take a nap or avoid doing things all together because they were too strenuous. As these situations continued to go on many people, friends, became frustrated with me. I heard the “you’ve really changed” line, I was told that I was being foolish for isolating myself, and worst of all I was called a horrible friend.  As everyone reacted to my “new self” in his or her own ways I became emotionally distraught. For months I dealt with anger and bitterness towards everyone around me. How could they not understand what I was going through? Where was my sympathy, my support? I felt like everyone was fleeing my side because I was no longer able to do fun things. I felt completely isolated from who I once was.

In all honesty, I am still dealing with a lot of bitterness. It is so hard to think of a year ago, or two years ago when I was able to stay up all night and drink wine and laugh with everyone. I miss friends. I miss college. I miss being able to walk up Morton Hill without feeling like I’m going to die.  But I can’t sit around and feel sorry for myself any longer.  I don’t have energy for that! So I want everyone to know that I know that I’ve changed, and trust me it’s been hard. But here I am. This is the new me and maybe it’s not the exciting 21-year-old life that I once had in mind. But why should I regret something that I can’t change? I’m doing my best to expand my mind and to let go of things. To do that though I need some help: help me embrace life and the new things I’m learning about my body. Support my excitement about books and movies and taking naps with friends and eating kale chips.  And I will enjoy watching everyone as they have fun rock-climbing and dancing and going out – and hopefully I can participate again sometime in the future because I cannot wait to be healthy and to live a full life. And I will. But I can’t let people get to me, I can’t sit here feeling like I’m missing out everyday or like I’m isolated from the rest of the world. I understand that these thoughts and actions (or reactions) are my own and I always have the ability to grow from them and the power to change them. So cheers to embracing each other! For whoever it is we are and for whomever we may become in the future!