Wednesday, March 31, 2010

my pretty boring Wednesday...

well today I didn't wake up till around 130 this afternoon, but at the same time i didn't fall asleep till after 3-4 am, so i guess it isn't that many of hours of sleep.. I pretty much laid in bed talking to a few people online and mindlessly playing games on FB. My mom ended up calling me around 315 telling me that i had my Xolair shots and that she was on her way to pick me up to go get them... they hurt extra bad today! thanks to my shoulders still being sore from yesterday.. but i managed to get my 3 shots without crying or looking like an idiot.

After that my mom took me down to the barn for a little to see my horse, although i couldn't do anything. I couldn't even brush her because it hurt to bad :( so my mom and i turned her out for a little to stretch her legs since it is supposed to rain tonight and tomorrow i am not sure when she can get out next.


Now i am at home relaxing and waiting for my artichokes to be done for dinner :D i hope i can eat one (i haven't been able to eat more then a few bites at a time lately). I had a bowl of chicken soup (homemade) and a few (read 2-3) bites of eggplant parm today. I haven't been able to stomach eating much at all.

in regards to how i feel, my shoulders are sore, but not hurting nearly as bad as they were before, but thanks to them feeling better the rest of me hurts extra now.. go figure huh? well i guess nothing else hurts worse, i just wasn't paying much attention to anything else when my shoulders were so bad. Still on 20mg pred.. hopefully this flare goes away soon and i can go back off pred :D

I just wanted to share what i posted on my FB the other day...

So many of you know that I have Juvenile Rheumatoid Arthritis and was just diagnosed a few months ago after dealing with this for what we think was the last 5 years, ever since I got hit by a pick up truck November of my freshman year. But what many of you do not know is that the “wall” that I put up to make everyone believe that I am able to deal with this new diagnosis is fake. Up until a few nights ok I was doing ok for the most part, kind of scared, but holding it together for the most part. But a few days ago, for some reason something set me off late at night and I lost it, since then I’ve been feeling depressed and just overall overwhelmed. I would guess (and have been told) that this is really normal because this is a life long, life altering disease. Granted, yes, there is a chance it will get a lot better once we figure out the right combo of meds, but there is also the chance that it will not get much better or even get worse. I am hoping that since the Cimzia alone was seeming to help (I still hurt, but it was defiantly better then were I started) that the Cimzia and methotrexate combined will make even more of a difference, but at the time I don’t want to get my hopes up to high because I don’t want to be let down. Yes, I have been thinking positive that the meds will work, but it’s hard when I am still in pain. 

It has also been hard since I have not been able to ride. I have not ridden in 4+ months. The most I have done is walk around bareback, and even then getting on almost put me in tears. It has also been really hard to watch other people ride my horse all the time. I love that people love to ride her, and I know that it is good for her to be worked more often, but its hard to sit back and watch knowing that I can’t do it myself. It has also been hard because I feel like I can’t really work with her anymore. I can lunge her without to much worrying because I know she is really good at lunging and doesn’t mess around on the lunge line, but I have been wanting to start ground driving her in order to prepare her for driving (in hopes that when I do not feel up to riding, I can still drive her), but I am almost scared because if she were to decide to do anything stupid or out of fear, I don’t feel like I could do anything to fix it. She is an amazing horse who I don’t worry about scaring, but she is after all a horse. 

It has also been hard because I feel like people got scared about when I started getting really sick. It felt like people thought they could catch it from me. No matter how hard I tried to stay positive and upbeat around people, they still acted weird and hid. I guess I can understand why it would bother them because I literally changed overnight. It was hard on me, so I know it must have been hard to watch me go downhill so fast. But what I do not get is why they couldn’t talk to me about it. Why is it so hard to sit down, or even call/text/email/IM someone if you are to scared to do it in person, and ask someone some questions or talk to them about what is bothering you or what you are scared of. I feel like that maybe if they would have gone out of their way to make me aware of what they were uncomfortable about that I could have explained everything more to them and in more detail or explain it in a different way that made more sense to them. But I guess I have to realize that maybe they weren’t meant to be my friends, since friends are supposed to stick together and not just run and hide when someone gets sick. So maybe it is time to start trying to find new friends who understand more what I am going though, and when I cancel plans it is not because I do not want to go out with them, or I am trying to avoid them, but simply because I either don’t feel good, or am to tired or a combination of both. 

I just want everyone to know what i have been going though emotionally lately. Also, this was probably one of the hardest things i have written/posted in a long time

been having a really bad few days...

well lets start from the beginning of this flare...  I got a cold last thursday which turned into bronchitis.  I got started on antibiotics tuesday for 5 days and was told to wait on my Cimzia shot until i felt better or was off the antibiotics, so to be on the safe side i started the Cimzia Saturday. I also started for the first time mtx Saturday.  Well my stomach got really upset sat from the mtx (i think?) and also from being in a lot of pain (i think?).  Sunday wasn't a good day at all.  I barely got out of bed.  Actually i only got out of bed to go to the bathroom and to get some water, i had almost no appetite.  Monday wasn't really any better so i emailed my doctor to ask what he recommended because i had tried everything i could think of to work better, and even my pain meds weren't taking the pain away, they were just barely taking the edge off. He said to take 40mg of prednisone, so i did.

On monday i had to cook some food, because we are jewish and we were having 17 other people (makes a total of 20 counting my mom, dad and I) coming over for a passover seder, and basically only i can cook some of the food (if anyone else tries no one else wants to eat it).  So i would cook a little bit, then go lay down, but it hurt when i laid down because all my joints were hurting especially my shoulders, which in the past i have never had problems with.  I got though cooking dinner and then i excused my self from the seder and hid in my room for almost the entire night.. i came out for dinner and ended up only eating some chicken soup.  The noise from all the people was just to overwhelming while i was feeling so bad.  

after all the people left i went to take a burning hot bath to see if  i could relax enough that it would help my joints not hurt as bad.  Well my hips felt better when i got out of the hot tub, but then i realized i had another problem.  I could not put my own shit on it hurt to bad.  My mom ended up having to put my shirt on for me because i could not lift my arms at all above the height of my shoulders let alone over my head.  It was really hard for me to ask for help because i was embarrassed to admit that at 18 i could not dress myself.  but i knew that if i did not ask i was going to wind up on the floor crying in pain.  Thankfully my mom was really understanding and helped me put my tank top on in a way that i didn't have to move my arms and without touching me in anyway.  well nothing was getting better that evening, if anything it was getting worse.  i could not get up to go to the bathroom without being in tears and hurting a ton.  So i emailed my doctor and asked him what he would do. 

Well he emailed back saying to come in if i wasn't feeling better.  So my mom called as soon as i read the email tuesday morning and ended up getting an appt right away.  When i got to the office he saw how bad i was hurting.  I think anyone could have figured out i was in extreme pain.  He ended up deciding to inject my shoulders with cortisone since i couldn't move my shoulders at all.  Even he said that it should not have gotten that bad this fast.  So now im not exactly sure what is going on. 

My best guess would be that i had a flare that was trying to start up but since i was on the cimzia it was keeping it at bay, but as soon as i had to wait 5 days to do the cimzia, the antibodies built up and took over putting me into a flare from hell.  So now i have to work on getting this back under control and keeping it under control.

First post... stuff about me.

hi my name is Hanah Fields-Austin and i am 18 and i live in the LA area in socal :D

this is my first post writing a blog.. so excuse me if it sounds retarded.  i was just diagnosed with JRA a few months ago, but we think i have had it for the last 5 years.  it took me going to many doctors in order to find one who cared enough to try and find an answer for me. I finally found the best doctor ever! Dr. W.  He is amazing and really goes out of his way to help me.  I have two big passions, photography and riding horses.  The JRA has really affected me being able to do either of those right now, but i want to try really hard to get back to riding since i haven't ridden in 4+ months :( 

so yeah, feel free to stop by and say hi! and add me on FB :D (just search me by my name, it should come up)

I hope to get to know all of you soon!