Locked inside.

Taking a break from the information overload of the last two days. As I said, I know that the amount of information can be overwhelming. It is super important to get the knowledge out there but I don't want to bore you all away at the same time! So, I'll switch it up a little bit. Maybe a couple of informative posts a followed by a me post. How's that sound? Maybe we'll just let it flow and see what happens.

As the title states, I'm pretty much locked inside more often than I'd like. Not just because of the PsA. I have a few other diseases as well that limit what I can do and where I can go. Unfortunately, PsA was just the beginning of them. I was a regular teenager doing regular teenager stuff when I first starting feeling the pains and aches. That's when I started to slow down a little bit. Even before I turned 20, I had already stopped being able to just get up and go somewhere at a moment's notice. I began having to plan what I needed to do in order to go somewhere. It didn't seem to stop me from going places. I could get up and go if I pushed myself. However, I paid for it severely afterward with very swollen feet and hands.

Once it became apparent that I wouldn't be able to do as much as I once could, I began to see a rheumatologist. He is very warm and kind which helps when he has to deliver bad news. I'm also glad that he is very honest with me. He told me that there wasn't a cure for the PsA and that we would be able to stave off some of the joint destruction. But - yeah there's always a but - I probably wouldn't be able to stand for long periods of time or do much with my hands all at once anymore. That pretty much became the time when I had to start learning to limit myself as well as asking others for help. Now, anyone who knows me will tell you that I'm stubborn. (Shh! Mom, no comments from the peanut gallery.) It took an awful lot to ask others for help. Especially when you could see in their eyes that they thought you were faking a lot of the time. I'm not saying that I didn't have days where I just didn't want to do things. Most of the time, I really did need the help. It was pretty much the most humbling period of my life. Still is, to be very blunt.

Due to other diseases and medication changes, I have developed a sensitivity to the sun. In fact, I have to put on sunscreen before I can go out for even a few minutes or I get itchy welts and red spots similar to an allergic reaction. I usually have to take Benadryl in order to calm the itch and redness if I forget and go outside without the sunscreen. To go to a doctor's appointment or a simple family cookout takes planning. I have to have the clothes ready for the appointment, have help to get a shower the night before and make sure that I have my portable oxygen tank ready to be used. The day of the doctor's appointment (or get-together with friends, etc), I have to pace myself getting ready. I spend about an hour getting refreshed (teeth brushed, putting on deodorant, fixing my hair, etc) and then have to rest for a while. I haven't worn make-up in years because I usually don't have the strength or the energy to put it on. Then I change my clothes and put on my sunscreen. Slip on shoes have been my saving grace for the past five years. I've honestly worn the same pair of slip-ons for the past five years. I do have a pair of tennis shoes but I haven't worn them in a fairly long time as I can't tie the strings some days. On goes the oxygen tank and away I go!

Deep down, I want to be able to do more things, go out to more places, and just live my life. Right now, I don't think it's possible with everything that I have to deal with on a daily basis. Maybe that's just the walls closing around me a bit. I don't know for certain. It does seem that I live more online nowadays than in the past. Of course, there's Facebook and all its games. I've met some wonderful people on there that share this dreaded disease with me. I'm thankful that I was able to join a Yahoo! group made up of some amazing people who have PsA and Fibro as well. I also visit Pogo on occasion. Besides all that, I do try to keep busy when offline. To be honest, I can't just sit at the computer for hours on end as I was once able to do. Every hour or so, I have to get up and more or else I won't be able to move at all without severe pain. Some days an hour is pushing my limit. I taught myself how to crochet. Thanks to youtube and a wonderful woman named Teresa who makes crochet videos, I've been able to master some stitches that I thought impossible - even without PA. I also try to write when I can. It's not been very often over the past few years but I've been doing a little here and there. I guess that's another reason why I've taken to this blog.

With each little thing that was taken from me by the PsA, Fibro, APS, and other diseases, I feel like maybe I can get something back by reaching out. Whether that's a crazy notion or not remains to be seen. But I'm not giving up. Not yet. As I said before, I'm stubborn.

Until next time,
Kay