Alex is doing very well. She has been getting her injections for just over a month now. You can't really see a difference by looking at her hands yet but I pray it is doing miracles on the inside. She is tolerating her shots well....no reactions, rashes or rejection of any kind. She has had some injection site redness and tenderness but that is completely normal. It has strangely become very normal....me giving her a shot.....just like me giving her a tylenol or something. She doesn't complain about having to get the shot and my hands no longer shake while giving it to her!
On a personal note I had a tough day recently thinking about it all. I know we are so so so lucky that she is not in pain. She has said that she does feel some stiffness in the morning but not much. What got me was reading about other patients who have Psoriatic Arthritis along with very severe psoriasis. Alex does not have psoriasis at this point in time but the odds are against her....her grandmother and father have it so it doesn't look good. Ben's ( her dad) didn't get really bad until he was in his 30's. Having a visible skin disorder can be very damaging for peoples self esteem. I worry that if she gets it before she has had a chance to mature into a strong woman that it could somehow hinder her. I read stories about kids being teased and tormented because of their skin issues. It just breaks my heart. All I can do is just pray that she never has to deal with any of it and if she does get it that she handles it with grace.
Did I mention that her birthday is February 25th and she will be 14!! Wow....unbelievable! She is becoming such an amazing young woman! She still loves reading, theater, Disney and oh yeah reading! She is beyond excited for the new Hunger Games movie coming soon!
Well, thanks for reading another update! As always please leave a comment or note for Alex....she does read them. Take care!!
Pattie, there is no point in worrying about what may or may not happen in the future. Today is what matters and she is doing great! God is great, isn't he? I will pray that everything continues on the path of healing. Love you all!
ReplyDeleteAlex, you are always in our thoughts! You and your mom are both brave and strong in your journey. Alex is excited about the Hunger Games too....If you don't already have plans, Maybe you and your mom can see it with us and we could make a fun day of it with lunch too. :)
ReplyDeleteAlex & Michelle Nagelvoort
Michelle,
DeleteSounds like lots of fun!! Thanks for always commenting and being so supportive!!
pattie
Hi,
ReplyDeleteI'm a mentor for the National Psoriasis Foundation, and a link to your blog was sent around to all of us. [I think I'll actually forward it to my mother as well.]
I'm 21 now, and have had Psoriasis since I was 18. After a year of pills/creams not working, I was placed on Enbrel. I've been on it ever since and am in LOVE with it! Though, Alex sounds like she deals better with the shots than I do. My point is, that after being on the medications a year and a half, I still get irritation at my injection site. It swells up and gets itchy generally. I usually do it on my thighs, so when wearing jeans I don't itch as much. We've tried many things to help. Benedryl pills a bit before getting the shot, as well as the following day seemed to reduce the length of time the site is irritated. I also have a problem with the medication stinging while it's being injected, for that waiting until the medication is room temperature generally works.
I hope to God I never end up being the cause that puts my children through what I've had to go through - I'm the first in my family to ever have P. It's a miserable feeling, and I've had to go through an arthritis series of xrays, so those days are numbered. I hope the Enbrel is keeping the PA at bay, for now at least. Even if she is diagnosed with Psoriasis, she'll get through it, and already has a head start on dealing with a problem no one else ever seems to fully understand. From my experience, it just plain sucks to have P and get weird looks from strangers who don't understand, but there are even more people willing to be educated about it, and when we cope and come out the other side, we're stronger, better, more open-minded, well rounded people. She'll make it; she'll be okay.
It says you live in San Diego, have you participated in the Walk to Cure Psoriasis down there? That was my first walk after being diagnosed. [:
-Kat
Kat,
DeleteThank you for your response. We do live in San Diego but have not done a walk yet. We were looking into doing one up in Orange County. It's such an important cause so we are hoping to get involved somehow.
I wish you the best health and keeping PA at bay! Be sure to come back and visit :)
Hi,
ReplyDeleteI too was sent the link to your blog via the National Psoriasis Foundation. I love your blog as it is so sincere and heartfelt. I have a sixteen year old daughter who (thankfully) does not have psoriasis but I share your concerns. I DO have psoriasis so the genetic link is definitely there and the thought of my daughter inheriting this disease from me often weighs on me. I am a volunteer with the San Diego Community Division of the National Psoriasis Foundation. We would love to meet you and Alex! There are great opportunities for involvement that I believe would be beneficial to both of you. We have a "Walk to Cure Psoriasis" every October and it is a lot of fun and a great way to connect with others who have the disease. And, on June 2nd we are planning a wellness expo at the Scottish Rite Temple in San Diego. There are many other great events and opportunities to connect, get involved, educate, raise awareness, and advocate also! A great way to empower your daughter is to get her involved. (By the way, it also looks great on a college resume!) We have opportunities for Alex to become a teen ambassador, to attend leadership conventions,speak about her experiences, etc. The teens who are involved with the National Psoriasis Foundation are amazing young people and we value their input and insight. We would love to share more information with you. I think the best thing to do is to contact our San Diego Community Division Manager Akorogi@psoriasis.org I really look forward to meeting you!
Here's to your daughter's good health in 2012!
Stephanie
Stephanie,
DeleteThank you so much for you post. I shared all of your info with Alex and she is very excited to get involved! Im just so happy to finally be meeting other moms out there! I myself don't have Psoriasis or PsA so I can't speak for them but I can speak about what it feels like to be a parent to a child dealing with this! So, thanks again for reaching out to me and I hope to meet you someday!!
Hi Pattie,
ReplyDeleteI am also a mentor with the National Psoriasis Foundation and was sent the link to your blog from them. It's wonderful that you began this blog as I'm sure it will help other mothers and it must be therapeutic for you as well. I would love to start a blog someday so you are definitely an inspiration. I have had psoriasis since I was a baby. Luckily, I do not have PA and my psoriasis has always been somewhat mild. What I have found is that by learning to manage a chronic condition at a young age like Alex is doing, it gave me a different perspective on life. And with the loving guidance of my dear mother, I was able to adopt a positive attitude about psoriasis. I am now pregnant with my first child, and like Stephanie above, the thought of my offspring inheriting this disease often weighs on me. In fact it has weighed on me since I was a teenager and I went thru a period in my twenties when I decided against reproducing at all. What gives me hope is being involved with the National Psoriasis Foundation, meeting all of the wonderful people in our psoriasis community - locally and nationally- and just knowing that there are effective treatments (that have come a long way since I was a little girl thirty years ago!) and promising research on the horizon. I look forward to meeting at you and Alex soon!
Cristy
Hi Alex and Mom!!! Alex, I think you rock!! You are so pretty and strong. I believe God has amazing plans for your life. I too am blogging about my journey so feel free to drop by for a visit.
ReplyDelete(((hugs)))
"True beauty lies beneath the surface."
PJ
Thanks PJ. What is your blog address?
Delete