For Pete's Sake

brief info on horse.  He is a 16.2 DWB who did 4' open jumpers before he had to have surgery to remove a grapefruit sized abscess from under his left muscle of his shoulder.  

The first time i met this horse, i did not think anything special of him.  He most def. had a personality, loved to make faces and play with his nose, but he was still kind of skinny and didn't have a shine to his coat as he was still recovering from having a grapefruit sized abscess taken out from underneath his left shoulder muscle.  He just was not anything special that  caught my eye in the way that he later did.  The first time i saw him being ridden i was riding in the small arena at the barn, and someone else (not going to name names at all in this story), had someone come open and close the gate for her, and came in and warned me "he is normally really well behaved, but can sometimes get fast and take off when i ask for the canter as he is still coming back from the surgery and gets to excited, so when i canter can you please just stand in the middle for the few min".  and i of course have no problems with it, not a big deal.  She rode him around, and i slowly but surly began to really notice him.  He had this special ability to turn heads when he was ridden.  He just had a presence to him that demanded he be watched.  When they began cantering it was only for a lap or so each way and he was a perfect gentleman and ALWAYS in a frame using himself correctly.   From that moment on i was hooked.  The person riding him, knew me well enough to know what i was thinking, and i guess without me really knowing about it, she talked to the barn owner, who was also the owner of the horse at the time about the possibilities of me riding Pete.  I guess the barn owner said that my legs were to short to be able to ride him correctly, and that he would take off with me and i would never be able to regain control.  Well the next day, i then went up and asked if i could ride him, and she said in a hesitant voice "yes, but only walk trot in the little arena and only for 15 min or so".  So i went and tacked him up, which was always an ordeal since i could not reach the top of him to brush him all the way or to make sure the saddle pads and saddle were laid correctly and not bothering him.  but i always made it work, by either asking someone to check it, or finding random stools and or chairs to climb on to be able to see.  I was told this horse was spooky and to be careful, but i noticed that he seemed a lot calmer just with me around, and as long as i pretended it was no big deal, he did not worry about it.  Once i got on, i headed over to the little arena and went to open the gate and was told he can not do that, he does not know how and its to stressful to try and teach him.   Well i just ignored everyone and patiently and slowly introduced him to the gate and explained to him that if he got the gate open today, then we would not worry about closing it until another time.  So we walked to the front of the gate, and i had him side pass over with the gate enough that we could get in front of it and swing it open.  decided to call it quits there for the day (especially since side passes, and circles and anything to that nature were supposed to be done sparingly because of the surgery). Once we got in the ring, i gave him a LONG walk warm up to stretch that shoulder of his, but from the moment i sat on his back i felt safe.  

I felt like he knew i had never been on a horse of his power before (a DWB is a HUGE difference from a QH), but he was calm and took care of me.  I asked him for a slow trot after awhile of walking to be able to get used to him.  He was still off "lame" due to his shoulder, but the vets had told us that he would become gradually less lame after work to increase the strength of the shoulder and it was not causing him any pain to be worked now. I could most def. feel the "offness" but kept going, making sure he was stretching like i was told.  We then switched ways and did the same thing, but i did not want to push my luck or his so we stopped after a few min.  The first ride was maybe 10-15 min total, but if i hadn't already fallen in love with him before, i was head over heals in love with him at that point.  

The barn owner actually never saw that ride, but was told that he seemed VERY happy and i was having no problems controlling him at all.   

The next day there was a jumping show and then the judge offered a mini clinic aferwards because it ended early.  I had showed a friends appy in the show that day, but she wanted to ride him in the clinic that evening, and my horse that i own, was injured from being stuck in quick sand.  The barn owner said i needed to ride in the clinic, and i had 20 min or so to figure out which horse from the barn i would ride.  All the horses that i kept listing off were taken by other riders (paid riders) and so i could not use them.  The last horse that i had left was Pete, so i asked the barn owner if i could ride Pete in the clinic and she asked me "your in love with him aren't you" and i said "yes.  he is a special horse and i know it." So she told me that i could ride him, and that she would take to the judge about the things the horse was not allowed to do after his surgery.  I was told walk trot both ways was ok, and no small circles.  Cantering was totally off limits.  I said not a problem, i just wanted to have fun, and learn what the judge had to say since he had already seen me jump another horse earlier that day.  

When it came time to get tacked up and out in the arena, i yet again had to have someone check my stuff since he was so tall  but i had managed to get everything on wrinkle free and straight.  When we got to the big arena that the clinic was taking place in, he started to get a little excited because he had not been ridden in their since before his surgery, and there were other horses being ridden with him as well.  I was never once scared of anything he would do, i always had this deep feeling of im safe with him. 

Once the clinic started, we were all told to walk with impulsion.  No lazy baby walks, but real forward moving walks.  I was one of the horses that he pointed out at the beginning of having a great walk right off the bat.  Once we were told to start trotting he said the same thing, and from what i have been told the barn owner was speechless because she had not seen Pete move so relaxed, so forward, and so on the bit in a long time.  They later asked me what i was doing, and i had no answers other then he picked me and was now going to show off to everyone how amazing he was, since he had someone he felt he could trust and love on his back.   So we all trotted around for awhile, and then the judge asked for a walk transition, which yet again Pete did effortlessly still staying on the bit.  The judge asked everyone else for a walk/canter transition and i explained to him that Pete was not allowed to canter right now, so he instructed me to trot to the inside of everyone else in the circle.  Pete and i went around a few laps without a problem, until he realized that he was not going to get to canter with everyone else and was deeply upset from it.  He thought about taking off, but i was able to stop that train of motion fast enough, and then he decided to throw a few little hissy bucks in the middle of the arena..  I was able to stop him right after, picked up the trot for a few strides until he relaxed again and then stood in the middle of the arena waiting for the rest of the people to stop cantering.   

When we were told to turn around and track the opposite direction, he was a little more lively in his walk, and the judge told me to use that forward motion for impulsion verses speed, and once we got that figured out, it felt amazing.  The judge then asked for a trot, and i stayed more into the center of the circle in case Pete got excited again, i would have room to control him properly without running people over.  You could tell he was SUPER excited, but was controlling it and using all that power in impulsion instead.  I felt like we were never touching the ground, and that we were covering the ground faster then i could believe was possibly.  I was however told, that we were not speeding around the arena, he was just using his hindquarters to propel us forward with that intense motion.  When the rest of the group started cantering Pete got really upset because he was not allowed to and started bucking and doing mini rears that were really easy to get under control.  You just have to talk sweet nothing to him, and he calms right down.  

After i had put him away the barn owner came to me and told me she was really impressed.  She said she had not seen him move like that in more years then she can remember.  She said he won't do that for just anyone, no matter how good of a ridder.   He picks his ridders, and then performs to his best ability with them. She said i was more then welcome to ride him any day i wanted and to help him in his recovery process.  

So weeks fallow and he was basically mine to ride.  I rode him on average 5 days a week sometimes only 15 min, and sometimes almost an hour.  some days we didn't canter because we did not want him to anticipate anything, and other days we worked on different transitions, going over poles, and bending.  Every day was different and we just wanted to keep him focused and wanting to work.  

One day he did get pissed that he was not allowed to canter for a longer period of time and he did take off on me.  My first instinct was to pull the reins to stop him, but i very quickly found out that meant RUN FASTER to him.  In order to slow him down you had to sit deep and put leg on him to pull him up into the bridle.  The last thing on my mind when a horse is taking off with me is to put leg on... leg on means go faster not slow down.  But after we figured that out, he didn't take off as many more times, and the times he did i got him back under control really fast.   The day that he actually took off the worst on me when we were letting him jump crossrails again to slowly introduce him to jumps slowly and make sure his shoulder held.  He landed the first jump like a good boy a little fast, but i was able to bring him back to the bit within a few strides.  However, the second jump was a totally different story.  He landed the jump, grabbed the bit and took off.  We were in the little arena, but that horse had no plans of stopping.  He then decided to try and pull a QH spin while at a full gallop, but i managed to keep him straight so he could not do that, for fear that he would loose his balance and fall on top of me ..  The barn owner, who was currently giving me the lesson that night congradulated me on being able to feel what was coming, and prevent something bad from happening.  She also told me that she was proud that i remembered the things she told me to stop him, and regain control over his canter.  

That was the day that we were making HUGE strides with each other, and that was the last day i ever really got to "rid" him.  I have been back on him a few times, but mostly walking bareback and would sneak in a little trot here and there.  I went from "having my own horse to love, show, and train" to being told "you can't get on him at all, it will ruin him.  your not the kind of rider he needs"

The true last day i ever really rode him, i got up the courage to ask the barn owner if i could take him in the big arena and do walk trot without warming up in the little arena to start.  She asked me if i felt comfortable with it, and i said yes, he will take care of me.   That was one of the best days in my life.  I took him out to the big arena, pretended like it was the small one and did our walk trot workout.  at first you could tell i was holding his trot back into a collected trot because i was scared he would take off, but as soon as i noticed and my friend pointed it out to me, i took a deep breath and relaxed.  i didn't have to do anything more then relax and we were flying.  He knew he was just supposed to trot, but he sat down and did the most amazing extended trot i have ever felt, and then just continued with a very impulse driven trot both ways until i told him to stop.  I was breathless when we were done, not because i was tired, but because i was so taken aback by him knowing exactly what to do, and how to take care of me and make me happy. 

The hardest part was being to sick to go down to the barn for awhile, and getting down there one day to go give him a big kiss and extra cookies like i always did, to find out he is gone.  He was sold and moved to his new home just days before that.  I have many memories of me sitting in his stall and him whipping the tears off my face with his nose, and giving me kisses all over trying to get me to cheer up.  I would sit in his stall in the total blackness without a second thought.. he would stand over me and protect me and stand with his head in my lap, or resting on my head and fall asleep.  no  cookies were involved..  My mom found me with him during one of our special moments one night and asked "why are you not getting this emotional over Belle, and you are him.  Belle is truly your horse."  and i said " i know, thats the problem.  Belle is never going anywhere.  She will always be mine though thin and thick, no one could take her from me.  Pete isn't mine.  He is for sale and there is the risk of him being sold and i would never get to see him again."  I also told my mom that there was something about him.  I have a special bond with Belle that has grown, but we have both had to work hard, and have gone though problem times in it.  My bond with Pete was different, he picked me, i did not pick him.  That in its self made it even more special.  I had this amazing DWB picking me over anyone in the barn for the person he wanted to have the bond with.  I said i know i can always ride Belle, but i don't know if i can always ride Pete.  They are completely different horses and different rides.  Pete needs to know his leader is there and confident and ready to help take care of him if need be, Belle is ready to take care of her leader and protect me in times of needs.  Pete is 16.2+HH and a DWB, Belle is 14.1+ and a QH.  just off the bat Pete is going to have more powerful gates which require more strength to be able to control, and not just control , but control and have him on the bit. 

Granted NOW i could prob ride Pete again, but at the time, i was never sure if i would be able to give him what he needed for him to be happy.  So when we (my mom and I) were offered Pete for a low price we had to turn the deal down.  That was THE hardest thing i've ever done, especially when my mom said "if you weren't sick that horse would have been yours the second you laid eyes on him.  There was something special between you two that no one could change or try to pretend didn't exist, but im sorry honey, at this time we can't afford your medical bills and a second horse.  

That was the last time i ever saw him.  I now where he is, and his new owner said im more then welcome to visit him, but i know the second i see him i will break down in tears and i do not want everyone else to see that too.  I don't think anyone can really understand how special it feels to have a horse pick you, and touch your heart in that special way without you even knowing whats happening.  I know there are a few of you out there who understand that, but its that feeling/look that most people are trying to get.  There are a lucky few who just have it. 

Pete and i were one of those lucky few. 

I <3

i wish the best for you, 

and i wish i could explain to you why things had to change. 

i promise its not your fault boy. its mine. 

You did nothing wrong, in fact you did everything write to teach me exactly what i needed and when. 

You complete my life, and i would buy you to be back with me in a heart be, or less, if it was possible.  

I <3 you
xoxo

personal question for ladies. slight TMI involved

personal question for ladies:  is it possible that your breast tissue/muscle can tear or rip.  this evening my left breast started hurting really bad.  i could not touch it or move it and it did not feel swollen or anything like that.  Just severe pain whenever i stood up or they "hung down".  Right now i have a super tight sports bra on and i have heavy duty tape put around the bra and my back trying to support my breasts and hold them closer to my body.  It seems to help take the pain away, but i still can barely touch them.  It is mostly my left breast (my bigger of the 2, always has been, and is prob at least a cup size or more bigger in size).  Not sure if it is possible for something to happen, or do i just continue to wrap them like i am now? 

thanks

My life lately has been really challenging. I have been down many different paths in a very short time. Some people know everything i have been though, some of you don't. You all know i spent a total of 15 days in 2 separate hospitals and a total of another 2 ER trips (none admitting) during the month of August. You all know that i spent the first 5 days in one hospital for an increased heart rate and the second 10 days in another hospital for what was diagnosed as Pseudoseizures. They told me that they were all stress related and it was in a way a mental break down.
What most of you do not know is i had to have a psychological consult done on me before they would release me from the hospital. They were almost thinking of admitting me to the psy-ward for a span but decided it was not needed at the time. They did however put in part of the discharge agreement that i found a counselor and continue to go to them. This is all necessary because i do not know or realize what set of the mental breakdown. They are hoping therapy will gradually lead to find the main root answer and help me solve it in the right and proper way.
The other thing they also believe contributed to the Pseudoseizures was pain meds. Doctors have told me that they think my body has become super responsive and hyper-reactive to the pain meds. They think that my body may be withdrawing every 4-6 hours when the pain meds wear off. I am not to sure about that theory but right now i have nothing to do but try and follow it. So for right now i have not taken any pain meds (expect one dose for a migraine sat night since i was released from the hospital). This has been a really hard challenge for me because i continue to deal with a lot of constant pain.
I have also been striving really hard to work out and loose weight. I know loosing weight will be easier on my joints and in return cause me less pain in the long run, but working out and loosing weight is easier said then done. Its especially hard not having any pain meds to help me on the days that i accidently overdo things.
The other thing many of you do not know is that i almost got sent away to "fat camp" up near fresno. My mom wanted to send me away right when i got released from the hospital for many reasons that i will not go into now, but including not trying in life, and letting the disease control my life and not attending school. That is just the basics of what was going on the time, there was a lot more in the background contributing to me almost being sent away. I managed to talk to my parents about letting them give me a chance to try to make changed on my own. I had never honestly put my mind to anything in this matter since I had gotten sick and admitted that to them.

I started with a weight of 201 on Aug 27th 2010 and was only able to ride for 5 min or so at mostly the walk.  I was only able to trot/jog a 1/4-1/2 a lap around the ring each way.  Now on Sept 21st i am able to do W/T/C for a full 30+ min, had my first lesson in over a year thursday, and spent a day ranch sorting without to many problems and was even able to walk the next day.  I can now jog bareback for 20 min or so straight without a problem, and lope for a total of around 5 min or so bareback.  i can now ride tackless again because my muscles have gotten strong enough to be able to control her with that precision.  I am also working on yielding her hind quarters and forequarters, side pass and do leg yields under saddle again.  I haven't been able to do those in over a year due to my hips not being able to open that far and allow me to ask her clear enough.  

I know to many people it does not look like i am doing anything during the day still, but i am really trying.  Sometimes just my best isn't the same as  your standards.  All i ask is that people do not judge me, and just support me for what i have been able to accomplish and not just dwell on the things i still can not do.  I do not mind a friendly reminder or a "kick in the butt" if i start to slack behind and get lazy again, but at the same time i do not need to be told every time i talk to you.   I am doing my best to not talk about my illness online all the time, but to be honest i really do not know what to talk about anymore.  i do not know how to start a regular conversation or continue it.  I am working on that, but its hard to know where to begin/start/work on it when other people aren't always willing to help me learn and change.  

its been a long time...

i just don't want to deal with my life anymore.. im done. seriously done. im sick of all these pills that seem to do nothing but make me sick. im sick of trying new things only to find out that they dont work. im sick of people not wanting to do anything with me because i can't do the things i used to. im sick of not being able to walk. im sick of feeling like im going to puke from either meds or being in so much pain. im sick of my hair falling out which means i might have to shave it or do something really dramatic in order to fix it. im tired of people not understanding exactly how much pain im in. (does me not getting out of bed all day other then to pee and get something to eat not say anything). ive been basically walking around in tears all day, and am now sitting here crying hysterically because i don't know what to do anymore. I want to start school again this semester, but im scared shitless. i can't guarantee that i won't have more days like this during school. what do i do then? what do i do when i can't get to class because i can't drive or walk? what do i do when i can't walk from my car to class without using all my energy for the day? how am i supposed to sit though a 2 hour lecture without falling asleep and actually learn something?

right now i just wish i could be in the hospital and have someone at least make me comfortable for a few hours so i can sleep. sleep is my only escape anymore, since i can't ride my horse. i haven't slept in days... people wonder why i sleep till like 3 in the afternoon, and basically its because i figure since i can't do anything whats the point of being awake? people don't get that i put up this "wall" or "second person" during the day when i am out in public. i really try to now show how much pain im in, and try to help others. i have always been that way, putting others before me, but what they don't get is how much that affects me and how hard it is for me once i get home. i cry myself to sleep more nights then i can count, but no one knows that, and i honestly doubt any one cares. people tell me that they would help me though anything, and then when im feeling extra crappy everyone seems to disappear off the face of the earth. whats up with that?? really makes me not believe in friends anymore. Why is it that i have to turn to people who live on the other side of the world to talk to me and help me feel better? what happened to having friends that live close?

where am i going with my life....

it just dawned on me today that i turn 19 in less then 2 months, but i feel like i haven't done anything in the last year. I remember this time last year thinking that im turning 18, and i almost didn't want to. I didn't want the "adult" responsibilities. Now im thinking, where am i going with my life, and what have i been doing for the last year??? I should have finished a years worth of college (actually more since i skipped my senior year), and i was really working towards showing my horse more and becoming a better rider overall. To bad none of that happened. The only thing that happened was me winding up in the ER 4(i think?) times in the last year, and having to deal with a huge change in my health.

I know i should be happy that i have been feeling better, but at the same time it makes me think that i have done nothing with my life for the last year or so. I have also felt like i have lost a lot of friends, because when i don't feel good i don't/can't always go out with them (especially since most live a distance away and i am not always up to driving) or even going out for more then 30 min or so, mostly because i just run out of energy at that point. Sometimes "happy/cheerful/bouncy" people get on my last nerve when i am not feeling good. most of the time its ok and i use their energy to help put me in a better mood, but sometimes i just can't deal with it and i don't know how to tell them that without being rude. I guess thats one of the things that i will just have to work on later down the line and hope for the best with.....

i am planning on starting school in fall, and just taking one class, but im super nervous about it, but excited. Im excited to go back to school, but im super nervous that im going to get super sick again and have to once again drop my class. It always makes me feel like a failure when i have to drop classes from school and wait till the next semester to try again. I haven't taken classes in almost a year (or more) now... so i guess ill just have to hope for the best in Fall.

why do people assume....

that just because im only 18 means that i can't deal with sickness/death? Don't they get that i have been around/though this more then they have in their life? Do they not get that them trying to "protect" me is only making it worse. I'm not bugging the patient because i just sit quietly with my mom in the corner, but the husband sure as hell wants to make me feel like im 2. Im beyond sick and tired of it. Do they not get that i can handle this, and ive been though it before.. the same exact thing before..

how?

People keep telling me that i can't let the disease control me, and i have to just try and "ignore" it and go do stuff anyways. I know i need to, but i don't know how. Every time i try and push my body to just enjoy a few hours out, i end up getting sicker the next day or that evening. I guess after awhile I stop trying to do things because i am expecting the same out come every time. How do i know when my body is going to put up with me doing more without finding out it wont the hard way?


I keep reading/being told that the disease works by going into "flares" and into "remission", but to be honest i don't feel like i have gone into remission at all since being diagnosed. Its been months since i started getting really sick, and i just seem to get sicker and sicker. Obviously my body was in remission for years at some point because i went without knowing i was sick for 4ish years, but then out of nowhere it just started kicking my ass. What changed? and Why? Its so confusing knowing what to come, when no one can tell me anything for sure. Doctors have told me that the disease can just "burn out", but i don't get that. How can it "burn out" when it is so "on fire" right now? Does it just get worse, and worse, and worse and then disappear out of nowhere? We think we know what caused it, getting hit by a pickup truck as a pedestrian, but what is going to cause it to "burn out". And no don't say "get hit by the car again".

They are changing me from Cimzia to Enbrel starting tomorrow, and then when i get back from France (early July) they want to start me on some new infusion once a month. I don't understand how one medicine is different from the other, but im willing to give it a shot.

No matter what questions i ask, it seems like each answer just gives me more questions. Do i just stop asking questions, or what? Im so beyond confused about what is going on in/with my body, i don't even know where to start trying to figure it out.. hmm

Some days i sit around and try and figure it out, but usually i just wind up in tears because i get so overwhelmed/confused about it all. I don't even know where to start anymore, or where to turn. I want to be able to kick this disease in the ass, but how?

sick and tired...

i'm sick and tired of everything! why is it that i wake up and can barely get up yet a fucking again? I just wanted to go to the barn for a little bit and hang out with friends. i wasn't even asking to do anything, now it looks like im going to have to be drugged off my ass so that im comfortable (well kinda) for the day. I get the cortisone injections tomorrow, and the thought scares the crap out of me. I don't want them, but at the same time i really do. I just want this all gone!! and never to come back!! how hard is that to ask? obviously its way to hard to ask. I don't want to have to worry about walking around the house alone, for fear that i might fall and be unable to get up. I really don't want to take these damn pain meds, but i would go crazy without them.

I guess i just have to suck it up till tomorrow and hope for the best

so i think i get it now...

i think i get why this hip pain freaks me out so much.... I just imagine how much joint damage is being done when my hips are this bad... im scared to death to get cortisone injections in my hips (they hurt like bloody hell in my shoulders, i can't imagine how bad its going to hurt in my hips), and im even more scared of hip replacement surgery. People/doctors tell me that JRA isn't as aggressive as RA, but then why is this disease seem to be progressing so fast? Im 18 and wound up in the ER yesterday getting a shot of morphine and toradol. They didn't run x-rays or anything while i was there, just gave me drugs and let me go. i was surprised they gave me pain meds so strong, but my mom was there and explained that my percocet wasn't working and gave them the "i'm a mom who hates seeming my daughter like this.. give her something strong or else" Plus i was laying there half asleep, unable to stay awake, barely remember what anyone was saying at the time, and shaking out of control.
I was pretty much unable to stay awake all day yesterday! Hell, i fell asleep in a booth at a restaurant while my mom and i were trying to figure out which ER to take me to, in order to have better luck of getting actual care from a doctor who gave a shit. I haven't done that since i was super super little.

Why do i even think about these things? Im now practically crying because im scared out of my mind. I hate this disease. I spent a lot of yesterday crying to my mom that i wanted this disease gone, and that i never wanted to deal with this anymore. i hate being 18 and unable to get out of bed by myself. I woke up in tears from the pain and needed my moms help to get me out of bed.

I hate being unable to drive myself anywhere thanks to me taking pain meds and not feeling good and feeling like i would be unable to react if anything were happen. I hate the damn pain meds in general, yet i can't not take them. I hate having to take so many pills everyday, and i hate having to give myself a shot every 2 weeks. I hate having to worry about going out with friends for fear that im going to run out of energy and ruin it for everyone. I hate having to worry about driving somewhere and not being able to get home on my own.. I hate actually going somewhere and being unable to drive home on my own. I just hate everything about this disease. It has ruined my life. I know people say to just learn from it, and grow, but thats not helping me right now.. right now i don't make any promises to do anything because i always have to cancel them, and i feel bad after canceling with one person a million times. I hate the idiot that hit me with his pick up truck and caused this disease to start. I hate the damn depression that comes with this.. I hate having to take prednisone all the time. I hate the side effects from all the meds. I hate being terrified to go on what should/will be the most incredible vacation of my life.

why?

Why is it that some days i can totally forget that i have JRA, and some days its all i can think about? Why is it that some days i can get up without any problems and go out with friends and go to the barn, but other days I can't manage to get out of bed? Why is it that some days i am excited about life, and some days i am so depressed? Why does one think start hurting as soon as something else is feeling better? Why do i feel like i can't ever catch a break? Why do i feel like some days the world is against me? Why do some days/nights i just feel like crying? Why do some days/nights i start crying and i don't even know why? Why do some days/nights things that are supposed to cheer me up make me even more depressed? Why is it some days that im terrified to drive? Why is it some days that driving over an hour doesn't both me one bit? Why am i so scared to go to Europe... this is supposed to be the vacation of a lifetime.

I just don't get this.

Why is everything in my life so complicated?

i just don't get it....

why do people assume that just because i am young i am immature and won't be able to understand things? Don't they get that i have been though more in my life then a lot of people do? Yes, i am only 18, but i have had to grow up really fast, and i have learned my share of lessons in life too. But i guess that is to hard for people to grasp. But it doesn't bother me. I guess they can just sit around complaining about their life and not accept peoples help.

Granted, yes i do complain about my life, but at the same time when people offer to listen and talk to me i accept it. I don't insult them and tell them that they are to immature to help me, even if i feel that way sometimes. I try and give everyone credit for who they are and what they can offer.

so freaking annoyed!!!!

I've spent the last 2 days in bed.. literally almost all day. Yesterday i only got up to eat/use the restroom, and then my mom drove me over to take care of a cat that im house/cat sitting for. literally the rest of the day i slept/watched TV. Today i've done nothing. im so annoyed. i just want to be able to go out with friends and not end up paying for it later...

dear migraine...

PLEASE GO AWAY NOW!! ive had you since friday and i think its someone elses turn!

europe....

so im getting more and more nervous about going to europe this summer. I was at dinner tonight and was sitting still for a few hours (was sitting in a booth) and by time dinner wad done my hips were killing me. How in the world am i supposed to sit for 11+ hours that it takes to get to france, and then get off the plane, walk around for a little bit (extremely jet lagged) and then sit in a car for another few hours? How am i supposed to walk all around Paris and the rest of where we are traveling in France? MY mom offered to take me on another trip at a later point, but i couldn't bring up the courage to tell her that im just scared its going to get worse long before it ever gets better. In a way i really want to go now before there is no way that i will be able to do anything, but at the same time i'm scared. I am planning on taking every medicine possible that i might ever (read as never) need.. but still. i don't want to get there and find that my body is to warn out from traveling and the plane trip to be able to do anything and enjoy it...

learning limits....

so yesterday (well technically 2 days ago) i spent all day Saturday with friends taking pictures of a dressage clinic and hanging out... wow it sure did take a lot out of me :( I tried to sit down most of the day, and not push myself to hard.. but yeah. we all know that never happens. I was DEAD by time i got home, but since my parents still had people over i couldn't take my hot bath/drugs and go to sleep right away. by the time i got to bed i could barely move, everything hurt so bad. Waking up this morning wasn't much better. it was HORRIBLE. but i guess thats what i get for going out and having a TON of fun all day!

Is it that hard to ask???

Why is it so hard for people to ask before they take things... my friends dad and i switched cars, and then i go outside to look for the beast (the nickname for the expedition).. and its gone.. so i assume its stolen since i have the keys in my hand and was never told that it would be moved. I called my parents and they had no idea either.

Come to find out that their son picked up the beast.. although as far as my mom, my dad, and I were told that was now "my" car. Im ready to say give me my car back and u don't ever get to use it again.. but i know better then that. We had traded cars because i can't drive mine. Its a stick and hurts to bad to drive right now. Besides my focus gets 30-35 mpg and the beast gets 12-15 mpg. We were doing them a favor by letting them use my car that gets better milage in return for them letting me use their car that i can actually drive.

It was working for months now. If they needed the beast for a day or something they just asked me and 99.9% of the time i was totally fine working out another car to use for the day if i needed it. now i just feel taken advantage of. now i have to share the car with their son (who has killed 2-3?) cars already..

this is all prob stupid, but its just annoying me!!!! ugh

i give up sometimes....

i was really hoping that if i got out and did stuff all day (but not to much stuff) that i would be tired and able to sleep by the end of the day... well that plan didn't work...

my mom asked me to try and move my shoulder to see if i could move it, and if so how bad it hurt.. well that was a BAD idea.. i've been up all night with this damn shoulder hurting like freaking hell!

(that was last night, and i never finished the post.. oops) but i ended taking pain meds today and have been sleeping almost all day.. i hate having to take this much percocet, but its better then laying in extreme pain.. i have an appt with an orthopedic on tuesday.. so hopefully he will have an answer then.

ugh...

i swear everything has been making me cry lately. Half the time i don't even know why i'm crying. Lately its been the most random things in the world, things that should never be sad. Ugh im tired of this... i'm tired of all these emotions.

I've been trying to get out with people more, but it takes so much out of me and people don't understand that. They don't get that just being out a few hours is really emotionally/physically exhausting. I know its good for me to get out, but sometimes people with to much energy is hard for me to keep up with... how do i explain this stuff to people without being rude????

my body is out to get me.

Why is it that my body has to decide to start hurting at night when i am wanting to go to sleep?!?!?!? really body? i don't appreciate it at all.

my joints hurt, my head hurts, my muscles hurt. everything hurts. and ive already taken 1 hot bath tonight.

How are you supposed to do anything if you are so exhausted in the first place?

Today i actually tried to go out and run errands with my parents. We went to get ours suburban smog checked, then went to pick my dog up from the groomers, and then went to the nursery to pick up a tree that my dad is going to plant, and then met a friend at a local car wash to swap cars out to get cleaned. After my mom and i went to the barn for a little bit, and i could barely do anything. I just put her in the round pen and sat down in there with her. I was so exhausted and hurting at that point i couldn't think straight or do much of anything anymore :(

Im sick and tired of having no energy to do anything anymore... ugh
hopefully tomorrow is better.

can't seem to shake this feeling....

i don't know if it is still this flare or something else that is leaving me still feeling like crap. but i've just not been able to shake this horrible feeling. If i get up and do stuff i just end up being in more pain, thanks to my hips, but if i don't get up and do anything i still don't feel any better.

Is there some magical balance between not doing anything and doing to much? If so, its obvious i haven't found it yet, since today totally beat my butt.

I went to the barn for the first time since saturday? (i think?) and was exhausted and in pain and barely able to walk by time i got home (was out for only a few hours, and sat down most of the time). I can't seem to figure my body out anymore. I used to know my limits, and what i could and couldn't do, and what i knew i could push my body to do, but regret it the next day. Now i have no idea anymore. Ive taken a burning hot bath (which i may end up doing again this evening) since nothing else seems to be taking the pain away from my hips right now. I've taken a vicodin and a Soma and i really don't want to take anything stronger tonight, but i may have too. I don't know if i will be able to sleep tonight thanks to my hips, and we all know what happens when i don't sleep.. i turn into an evil bitch.


On another note, im supposed to go to the symphony with my grandma, aunt and my parents saturday, but after today i know there is no way that i can sit in those uncomfortable chairs for that long without being able to move. Granted, yes i know i could probably get up and walk around for a little, but it always feels really rude after i have been told so many times to not get up during a show or performance. I know my grandma is going to be disappointed when she finds out that i won't be able to go, because i know this night is important to her (my grandpa who died 10 years ago is being honored by the symphony), but at the same time i know my body would regret me going. im trying to figure out if there is a way that i can maybe join them for dinner, so i still get to spend time with my grandma and aunt, but then not have to go to the symphony? Who knows? I'm not sure if that would even work since i haven't been feeling to comfortable with driving lately.

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!