Hey there! I just wanted to introduce myself. I'm Kyra- 36 year old woman living in NH. I am a very happy mom and wife, but really struggling with PsA. I was misdiagnosed with Ankylosing Spondilytis about 10 years ago, but in the last few months it has looked more like PsA. It's funny getting used to the new name, but the symptoms and treatment are pretty identical. At this point I have been on every approved biologic, and they have all worked for varying amounts of time. Now none of them do, and we are trying to get my insurance to pay for either Orencia or Cimzia. Big fun. In the meantime it's prednisone and mtx for me, and right now they are not cutting it.
Sometimes it's hard to keep a positive attitude about all of this, but I keep reminding myself (and my family when they are worried): I am blessed. I have a family that loves and supports me and cares for me when I need it (even if I don't particularly want it at the time, lol) and makes me laugh. Maybe this pain is God's way of teaching me to appreciate every single gift in my life? I don't know- it's what I cling to anyway, and it helps on the bad days. My passion in life is riding and training horses, which is not possible right now, but just dragging myself to the barn to groom and hang out with my horse is therapeutic. It keeps me in the moment and keeps me greatful.
I really look forward to learning about your stories and getting to know you a little bit. Just reading a bit, I am in awe of all of you- your strength and courage inspires me!
Welcome, Kyra! I have both PsA and AS - I was just diagnosed last year after nearly a lifetime of being told it was all in my head.
I struggled a lot in the past year with coming to terms with what my life is and will be like for the rest of my life. For me, blogging helps a lot (rannygahoots.blogspot.com). I've been through a lot in my life - and often people ask me what I'd change if I could go back, and when I honestly say, "nothing," they're taken aback. I'd go through every moment of abuse, all the pain, all the illness, all over again because if I didn't, I wouldn't be the person I am today or have the life I have today. I have five amazing kids, three other kids in my care part time, awesome friends, a loving husband, and am part of several incredible online and in-person communities. I'm following my passions - even if sometimes I'm doing it from a bed or a wheelchair.
Hi there, Kyra. Welcome to our group. I'm sorry you need to join us, but glad you did. I know exactly what you mean about not being able to ride and train your horses. Aside from the pain, it's the things that PsA steals from us that is so distressing, isn't it? My favourite things have been stolen by PsA as well. I love to walk, but the epicenter of my disease is in my feet, I've recently bought a scooter, which is nice but not the same. I love to cook, but standing in the kitchen hurts, so I have to find another way but that's awkward. I enjoy wine (and I teach wine tasting classes, or rather, used to) but the methotrexate has made even modest wine consumption risky. It is SO not fair. But life isn't fair, is it?
We do our best to be positive and we like giving support to others. Glad you're here! Thanks for introducing yourself!
Hi Kyra....Welcome!!! I too am newly diagnosed with PsA for sure, and she thinks possibly AS as some syptoms are crossing over, like the vision issues, but it is so hard to diagnose these diseases as they are so similar. You have such a great, positive attitude, which is such a great inspiration....I wish I could say the same...I am getting better, but not quite to to level that you are. I too am glad to have found this community, and although I am new too, welcome you to it with open arms!
Oh my Goodness, you guys are wonderful! Thank you for the warm welcome!! It is lovely to know that I am not alone in this. It's hard- my husband is so supportive, but I feel like I don't always want to burden him with my constant health troubles. I know that he dosen't feel that way about it, but I just... do. It will be nice to share with others who are going through the same thing and who understand in such a personal and deep way. Blessings to you all!
Oh, and Dani, you are so sweet to say that, but deep down, I am a big, whiny baby. LOL.... Hang in there :-)
Hey wait.... Nice to meet ya'll! .... back up.... beeep beeep.... back up..... vision issues??????? Whoa... is that related????? I am having problems with my vision suddenly and I made an appointment with my opthalmologist but earliest I can get in to see him is in September! What the heck is that all about????
Welcome, Kyra! Sorry to hear you are dealing with PsA. I believe you are right--our friends and families sometimes need a break from all this PsA stuff. That's one of the great things about this message board. We are here for each other and understand. Glad you found us!
I too have had PsA for a while and for me it is a constant struggle each and every day. I have very limited mobility and I have been home bound and basically confined at home in my bedroom 24 hours a day. You are Blessed in the fact that you are mobile and can still enjoy your passion, your love for your horses. You are also Blessed with the Love of your family. Embrace that love and keep the faith.I wish you well. please take care.
I was told that my vision problems could be related to my PsA or that I could also have AS, which the vision problems are more common with...I have pressure behind my eyes and blurred vision. I too have a referral to an opthamologist (done in January) and don't see him until May...it is really difficult as some days it is really hard to see clearly. I think it is related as I never had vision problems before and the way my Rheumy described it was that the fluid in the backs of your eyes is similiar to joint fluid and can inflame in the same way...dont' know if that is true, but that is what she told me.
Welcome. I hope you find some comfort, support and laughter here. I have xo
I have the eye stuff going on too. DOH, DOH, DOH!!!!!!!!!!! On the up side I just ate half a block of green and blacks organic white chocolate. It's the first sugar I have consumed in 3 weeks. At least my taste buds are working.
YUMMMYYY.....I had reeses peanut butter cups and popcorn for dinner!!! Terrible I know, but it was a bad pain day and I was home alone and I didn't feel like cooking!!! Probably not the best thing for me, but it sure tasted good at the time!!!!! lol